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Support for all affected by Primary and<br />

Secondary Breast Cancer<br />

BREAST CANCER<br />

SUPPORT<br />

BREAST CANCER SUPPORT<br />

1<br />

<strong>ABCD</strong> <strong>Book</strong> V2.indd 1 07/04/2020 19:57


Breast Cancer Screening<br />

About 1 in 8 women in the UK are diagnosed<br />

with breast cancer during their lifetime. If it’s<br />

detected early, treatment is more successful<br />

and there’s a good chance of recovery.<br />

Use this guide for an overview of:<br />

Benefits & Risks | When it’s offered | What happens | Your results | FAQs<br />

www.nhs.uk/conditions/breast-cancer-screening<br />

Breast<br />

Cancer Chat<br />

Worldwide<br />

Thanks to social media, patient communities<br />

are thriving online. People gather to support<br />

each other, connect with others who understand<br />

and share information. It was how we, the cofounders<br />

of @BCCWW, got to know each other.<br />

Taking inspiration from others who created thriving<br />

communities, we started a twitter chat, held every<br />

Tuesday nights 9pm – 10pm GMT.<br />

Topics can vary, anyone can join in, mainly for<br />

patients but professionals/clinicians and guest<br />

tweeters also join and everyone is welcome.<br />

MEET THE<br />

FOUNDERS<br />

Yvonne<br />

Jo<br />

Rachel<br />

@Yvonnenewbold<br />

@abcdiagnosis<br />

Julia<br />

@rachelmanning11<br />

@Hellboy8700<br />

Jools<br />

@AliceWTMatter<br />

9PM<br />

UK<br />

TIME<br />

EVERY<br />

TUESDAY<br />

@BCCWW<br />

Search the hashtag<br />

#BCCWW<br />

Open to anyone<br />

affected by breast<br />

cancer, any stage<br />

or age - everyone<br />

is welcome!<br />

2 abcdiagnosis.co.uk Support for all affected by Primary and Secondary Breast Cancer<br />

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CONTENTS<br />

4<br />

6<br />

8<br />

10<br />

11<br />

12<br />

13<br />

14<br />

15<br />

16<br />

17<br />

18<br />

19<br />

20<br />

21<br />

22<br />

24<br />

25<br />

A warm welcome<br />

Who are abcd?<br />

Breast Cancer Self Care<br />

Christine Venning<br />

Farida Anderson MBE<br />

Joanna Bott<br />

Breast Cancer Nurses<br />

Lesley Eaton<br />

Leanne Nash<br />

Helen Bacon<br />

The right surgery for you<br />

Sarah Tebbett<br />

Codilia Gapare<br />

Samina Hussain<br />

Post-op Physio<br />

Your rights at work<br />

Medical (drug) therapy<br />

Beth Roberts<br />

26<br />

27<br />

30<br />

31<br />

32<br />

33<br />

35<br />

36<br />

37<br />

38<br />

40<br />

41<br />

42<br />

43<br />

44<br />

45<br />

46<br />

47<br />

Julie Wray<br />

Fiona Morrison<br />

Radiotherapy treatment<br />

Sarah Coombes<br />

Exercise and movement<br />

Victoria Yates<br />

Jo Noble<br />

Emma Robertson<br />

Shazia Calvert Davies<br />

Breast Cancer Lymphoedema<br />

Lesley Stephen<br />

Basic Discovery BC Research<br />

Julia Bradford<br />

Clinical trials<br />

Fundraising<br />

METUPUK<br />

Joanne Myatt<br />

Julie Osborne<br />

48<br />

49<br />

50<br />

51<br />

52<br />

53<br />

54<br />

55<br />

56<br />

57<br />

58<br />

59<br />

60<br />

61<br />

62<br />

63<br />

Fear of cancer returning<br />

Ductal and lobular BC<br />

Sara Bonnell<br />

Roger Newman MBE<br />

Dr Yoga<br />

Carolyn Gammon<br />

Cheryl Gruwys<br />

Patient research<br />

Emma Willis<br />

Living with cancer after<br />

treatment<br />

Other services you may<br />

need to access<br />

abcd retreat<br />

Charities for holiday grants<br />

Natalie Yates-Bolton<br />

Nicola Cottington<br />

Support groups<br />

Thank you to all the patients and professionals whom have contributed to the book.<br />

Also a huge thanks to friend Emma Robertson who had kindly edited all the stories that<br />

have appeared in here. Fab support and I couldn’t have met the deadline without her.<br />

Thanks also to my family as this work has taken me away from normal life and holiday<br />

time but I hope they can see it was worth it in the end.<br />

Jo Taylor<br />

Founder of abcdiagnosis and METUPUK<br />

BREAST CANCER SUPPORT<br />

3<br />

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Hello and welcome to our information book which has been<br />

produced to help and support breast cancer patients.<br />

After Breast Cancer Diagnosis has reached out across the<br />

world via the website and social media sites. In total we<br />

engage in excess of 16,000 like minded people.<br />

The book has been put together by patients who have all<br />

been where you are now. We hope the content will help you<br />

and take away some of the fear of the unknown.<br />

This book has been just over 12 months in the making and I<br />

am very proud of the results. Feel free to contact me if you<br />

would like to see anything else in the next version, where we<br />

will try to include even more of the many stories we received<br />

from our contributors that we were not able to include in<br />

this publication at this time.<br />

We look forward to connecting with you over social<br />

media and please share this amazing book with others.<br />

Now starts the real<br />

challenge of surviving,<br />

being in remission, or<br />

Founder of abcdiagnosis and METUPUK<br />

living with and beyond<br />

cancer. You will also<br />

meet many good people<br />

who are there to help<br />

gofundme.com/breast-cancer-exercise-retreat and guide you on your<br />

road to recovery. They<br />

will find you when you<br />

jo@abcdiagnosis.co.uk<br />

are least expecting it!”<br />

”<br />

@abcdiagnosis<br />

Chris Curtis, Chairman of The Swallows<br />

facebook.com/abcdiagnosis<br />

Head & Neck Cancer Support Group<br />

4 abcdiagnosis.co.uk Support for all affected by Primary and Secondary Breast Cancer<br />

Jo Taylor<br />

A WAR<br />

WELCOME<br />

“<br />

“Cancer<br />

is a long<br />

and hard<br />

journey, you<br />

can’t wait to<br />

finish and then<br />

you suddenly feel<br />

all alone as you<br />

have been cared for<br />

through chemo.<br />

<strong>ABCD</strong> <strong>Book</strong> V2.indd 4 07/04/2020 19:57


ARM<br />

E<br />

<strong>ABCD</strong> Patient<br />

<strong>Book</strong>let Patron<br />

I have been a Consultant<br />

Medical Oncologist at The<br />

Christie Hospital since 2002<br />

with a specific interest in breast<br />

cancer. I have a particular interest<br />

in treatments for advanced breast<br />

cancer using novel techniques and<br />

drugs and combinations of multiple<br />

treatment modalities for patients with<br />

complex problems.<br />

I am happy to support Jo Taylor, who is a<br />

patient of mine with advanced breast cancer.<br />

I have witnessed Jo’s untiring drive and<br />

determination over many years, not only the<br />

challenge living with ongoing treatment for<br />

an incurable disease but also campaigning<br />

relentlessly for breast cancer patients and<br />

banging the gong for increased access to<br />

new and better treatments on the NHS.<br />

Jo also has a very active Twitter account<br />

(@abcdiagnosis) and runs her website<br />

(abcdiagnosis.co.uk) and has put together<br />

a secondary breast cancer infographics to<br />

help patients recognise symptoms of the<br />

disease. She also runs the abcdiagnosis<br />

retreats where patients get together in<br />

Saddleworth, near Manchester, to share their<br />

experiences and enjoy the great outdoors<br />

and support each other and network with<br />

other patients to help each other to live with<br />

ongoing treatment.<br />

Jo has raised over £19,000 for the Christie<br />

Hospital and has also appeared in breast<br />

cancer related books, on radio and television<br />

to highlight issues relating to cancer<br />

treatments, and other aspects of care with<br />

regard to supporting and helping patients.<br />

In my time as a medical oncologist, I have<br />

rarely seen a patient with this level of drive,<br />

commitment and energy. She is an inspiration<br />

to those who know her and work with her on<br />

each project that she is involved with.<br />

I am proud to call Jo a friend and she is truly<br />

an inspiration to me and those of us who<br />

work in the breast cancer community and to<br />

all the patients with whom we work and to<br />

those that strive to challenge the issues that<br />

this disease brings, as well as patients who<br />

live with secondary breast cancer.<br />

I am delighted and honoured to have been<br />

invited to be Patron of this patient story<br />

book and proud to be associated with<br />

abcdiagnosis.<br />

Greg Wilson<br />

Consultant Medical Oncologist<br />

The Christie NHS Trust<br />

BREAST CANCER SUPPORT<br />

5<br />

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WHO ARE AFTER<br />

BREAST CANCER<br />

DIAGNOSIS?<br />

Abcdiagnosis is an organisation and network<br />

offering ongoing peer to peer support for<br />

patients with a breast cancer diagnosis,<br />

reducing fear, anxiety & isolation, and<br />

supporting them to resume their normal<br />

everyday life, both living with & beyond cancer.<br />

After my own diagnosis with breast cancer in<br />

2007, I became acutely aware of the lack of<br />

resources & information available to breast<br />

cancer patients. One avenue I explored was<br />

exercise, finding that my own mental health<br />

& well-being improved substantially when<br />

exercise became part of my own approach to<br />

my diagnosis.<br />

The web site has grown and developed over<br />

the years and I think it helps that I can relate to<br />

all aspects of other patient’s journeys, having<br />

breast cancer myself.<br />

HOW DID IT ALL START?<br />

Created in 2013 we are the patient “one<br />

stop shop” for breast cancer, whether it<br />

be primary or secondary cancer.<br />

I launched on 15th February 2013, six years<br />

into my cancer diagnosis. A year later I<br />

was rediagnosed with incurable secondary<br />

breast cancer but continued to develop<br />

content for the website, engage in patient<br />

advocacy and set up the exercise retreats<br />

and patient advocacy.<br />

This has led to the launch of my other<br />

website in October 2019 METUPUK,<br />

which focuses on secondary breast<br />

cancer. The SBC infographic for red<br />

flag symptoms is signposted by NHS<br />

England for use throughout England<br />

for breast cancer patients awareness of<br />

signs and symptoms.<br />

6 abcdiagnosis.co.uk Support for all affected by Primary and Secondary Breast Cancer<br />

<strong>ABCD</strong> <strong>Book</strong> V2.indd 6 07/04/2020 19:57


AFTER BREAST CANCER DIAGNOSIS<br />

Abcd helps with:<br />

• Awareness of secondary breast<br />

cancer red flag symptoms<br />

• Patient advocacy<br />

• Signposting<br />

• Campaigning<br />

• Fundraising<br />

• Connecting patients<br />

• Information about research<br />

and clinical trials<br />

How can you fundraise<br />

or support?<br />

We cannot do this without your help so<br />

below are some examples of how you can<br />

help to support us:<br />

• Follow and like our Facebook and<br />

Twitter pages<br />

• Donate to us via go fund me page<br />

• Create your own event to raise money<br />

• Share our work<br />

• Get involved<br />

Your support means that we can continue<br />

the important work that we do.<br />

BREAST CANCER SUPPORT<br />

7<br />

<strong>ABCD</strong> <strong>Book</strong> V2.indd 7 07/04/2020 19:57


BREAST CANCER<br />

SELF CARE<br />

Whatever your age, size or shape,<br />

it’s important to be breast aware<br />

and check your breasts regularly.<br />

Breast cancer is the most common cancer in the UK, so<br />

it’s important to look after your breasts by checking them<br />

regularly. Getting to know how your breasts look and feel<br />

will help you know what is normal for you. You will then be<br />

more confident about noticing any unusual changes that<br />

might be a symptom of breast cancer and reporting them<br />

to your GP (local doctor).<br />

HOW DO I CHECK MY BREASTS?<br />

Everyone’s breasts look and feel different. Some people have<br />

lumpy breasts, or one breast larger than the other, or breasts<br />

that are different shapes. When you check your breasts, try to<br />

be aware of any changes that are different for you.<br />

Look at and feel your breasts so you<br />

know what’s normal for you<br />

Try to get used to looking at and feeling your breasts regularly<br />

– for instance, when you are in the bath or shower, using body<br />

lotion or getting dressed. You don’t need to feel your breasts<br />

in any special way.<br />

Do this regularly to<br />

check for changes<br />

If you check them as part<br />

of your usual routine you<br />

won’t need to worry that<br />

you aren’t doing it often<br />

enough. Decide what you<br />

are comfortable with and<br />

what suits you best.<br />

Tell your doctor as soon as<br />

possible if you notice a change<br />

If you notice a change in your breasts,<br />

go and see your GP as soon as you<br />

can. Most breast changes are normal<br />

breast changes or due to a benign<br />

(not cancer) breast condition, but it’s<br />

important to find out what’s causing<br />

the change.<br />

Remember<br />

to check all<br />

parts of your<br />

breasts, your<br />

armpits and up to<br />

your collarbone.<br />

Listen to a discussion with one of our nurses about<br />

normal breast changes and how to check your breasts.<br />

8 abcdiagnosis.co.uk Support for all affected by Primary and Secondary Breast Cancer<br />

<strong>ABCD</strong> <strong>Book</strong> V2.indd 8 07/04/2020 19:57


What are<br />

normal breast<br />

changes?<br />

Your breasts change constantly<br />

throughout your life from puberty,<br />

through adolescence, the reproductive<br />

years and then the menopause (when<br />

periods stop permanently).<br />

Changes around the time<br />

of your period<br />

Your breasts may feel heavier and fuller before your period.<br />

They may also be tender or lumpy. After a period, this<br />

usually lessens or disappears altogether, although some<br />

women have tender, lumpy breasts all the time. Many<br />

women also have breast pain around the time of their<br />

period (cyclical breast pain), which is normal.<br />

During pregnancy<br />

Your breasts go through a lot of changes during and<br />

after pregnancy. Many pregnant women feel a change in<br />

sensation in their breasts such as tingling and soreness<br />

(particularly of the nipples). The breast and the areola<br />

begin to get bigger. The nipple and areola become darker<br />

and remain that way during pregnancy.<br />

Before, during<br />

and after the menopause<br />

As oestrogen levels fall during and after the menopause, the breasts<br />

may change size, lose their firmness, feel softer and may droop.<br />

Changes, such as a lump or tenderness, are also common at this time.<br />

Lumps often turn out to be breast cysts (fluid-filled sacs). Tenderness<br />

may be non-cyclical breast pain (pain that is not linked to the<br />

menstrual cycle), which may need to be treated with pain relief.<br />

If you have a breast cancer<br />

or breast health query<br />

It’s important to see your GP (local doctor) about any<br />

changes that are new for you, even though for<br />

most women these will be benign (not cancer).<br />

TALK TO OUR<br />

BREAST CANCER NURSES<br />

0808 800 6000<br />

BREAST CANCER SUPPORT<br />

9<br />

<strong>ABCD</strong> <strong>Book</strong> V2.indd 9 07/04/2020 19:57


How do I<br />

?<br />

check my<br />

breasts<br />

Check all parts of your<br />

breasts, your armpits<br />

and up to your collarbone<br />

for changes.<br />

A change in size or shape<br />

A lump or area that feels<br />

thicker than the rest of<br />

the breast<br />

A change in skin texture<br />

such as puckering or<br />

dimpling (like the skin of<br />

an orange)<br />

Redness or a rash on the<br />

skin and/or around the nipple<br />

Your nipple has become<br />

pulled in or looks different,<br />

for example a change in its<br />

position or shape<br />

Liquid that comes from the<br />

nipple without squeezing<br />

Pain in your breast or your<br />

armpit that’s there all or<br />

almost all of the time<br />

A swelling in your armpit or<br />

around your collarbone<br />

Registered charity in England and Wales 1017658 • Registered charity in Scotland SC038104<br />

Christine Venning<br />

In 1984 I attended my<br />

first Family History Breast<br />

Clinic because my mum<br />

had recently died of<br />

breast/bone cancer. She<br />

was first diagnosed at<br />

43 and it returned in her<br />

bones when she was 60.<br />

My GP was on the ball and<br />

referred me to Douglas<br />

Hansell’s very new clinic at Stobhill Hospital. I went<br />

every six months and came out relieved each time.<br />

However, the week before my appointment in 2007<br />

I realised I had a thickening and knew that this was<br />

my turn.<br />

Aunts and cousins had all had varying experiences of<br />

breast cancer. My brother had died of osteo-sarcoma<br />

in 1999, which had been very unpleasant. He was<br />

diagnosed late because he was 49. It was my turn now…<br />

Although I knew what it was, I kept calm through<br />

everything. It was grade 3 so Mr Hansell wanted to<br />

operate that week, but I was moving house! I got a<br />

week’s extension, moved house on the Saturday, and<br />

presented for mastectomy on the Sunday.<br />

I had been advised to wait for the result of genetic<br />

investigation before having the other breast removed.<br />

All went well and I elected to join the TACT2 trial<br />

and have chemotherapy 2 weekly. By the end of that<br />

and the radiotherapy I was exhausted! I was then<br />

prescribed 5 years of oestrogen suppressant.<br />

It turned out we do not have BRCA 1 or 2 but the<br />

opinion is that it is genetic - just not a gene that<br />

has been investigated yet. I gave up the hormone<br />

treatment at 7.5 years. I could no longer manage the<br />

joint and muscle pain and the very low mood. I was<br />

“signed off” from my hospital care last September.<br />

I am 72 now and for the first time since 1984 I am<br />

not attending the breast clinic. I miss my lovely nurse<br />

specialists. The services have been cut, women being<br />

diagnosed now don’t get the care that I had. We don’t<br />

know if it is genetic but the geneticists are pretty sure<br />

it is. My main concern is what it might mean for my<br />

family and their children. Now, the new normal...<br />

whatever that means!<br />

10 abcdiagnosis.co.uk Support for all affected by Primary and Secondary Breast Cancer<br />

<strong>ABCD</strong> <strong>Book</strong> V2.indd 10 07/04/2020 19:57


Farida<br />

Anderson MBE<br />

@FACT<br />

team<br />

My breast cancer story<br />

I was diagnosed with Breast Cancer<br />

in February 2013, aged 52, having<br />

retired from my job as CEO of a<br />

Charity and hoping to enjoy life<br />

after working from the age of 16.<br />

Learning I had breast cancer was the worst<br />

thing ever because my own mum had died<br />

from the disease aged 48. My cancer was<br />

picked up through a routine mammogram.<br />

There was no lump but ‘calcification’ was<br />

growing in my body and would start to form<br />

a lump over time. It had not spread to my<br />

lymph nodes but I was Her 2 positive, a very<br />

aggressive cancer… To beat it, I required<br />

surgery, chemotherapy, radiotherapy and then<br />

the magical drug Herceptin.<br />

I didn’t cry in the consulting room, and I<br />

couldn’t look at my husband who was sitting<br />

behind me. I think he was in just as much<br />

shock. I remember thinking “how am I going<br />

to tell people without crying?”<br />

My children were adults, with their own<br />

families, but still seemed like babies to me. I<br />

had never been unwell in my whole life. I was<br />

a strong woman, the founder of a charity and<br />

the person people came to for help.<br />

I was really not used to asking for help, so the<br />

diagnosis created a mixture of emotions. I felt<br />

weak and ashamed. I did not want sympathy<br />

and whilst friends and family were amazing, I<br />

felt unable to share the journey. How can you<br />

tell those who look to you as Mum, Sister, and<br />

Daughter that you are scared of dying?<br />

I can remember the times I was on my knees<br />

crawling to the bathroom… I talked about<br />

giving up the treatment because I felt it was<br />

killing me. The chemotherapy was horrendous<br />

and I used to say if this is being cured, I think I<br />

would rather die.<br />

Five years on, my hair has grown back, I am<br />

slowly regaining my confidence and the<br />

personality I was so sure of before cancer is<br />

returning. During treatment I felt like I had<br />

lost control and had no ability to solve the<br />

problems of life.<br />

The experience lead me to establish a<br />

community group called FACT, which<br />

stands for FITNESS AFTER CANCER<br />

TREATMENTS.<br />

I was so shocked at how little support there<br />

was after treatment stopped, when people<br />

seemed to think you are fully recovered as<br />

you look so well. Here is some information<br />

about the group;<br />

https://www.youtube.com/<br />

watch?v=cn3SutfeaLE<br />

I have also collaborated on a theatre show<br />

called TITS UP where we present our stories<br />

to raise awareness and create camaraderie<br />

to overcome the cancer. We want the<br />

performances to be an opportunity to free<br />

women from their painful journeys. People<br />

are surprised when they see me now and<br />

comment how lovely my hair is and how well<br />

I look. If there is one thing this journey taught<br />

me it is to not judge any book by its cover.<br />

Even without hair, I was still Farida…<br />

BREAST CANCER SUPPORT<br />

11<br />

<strong>ABCD</strong> <strong>Book</strong> V2.indd 11 07/04/2020 19:57


@catty<br />

fizzle<br />

Joanna<br />

Bott<br />

Just 3 months after<br />

my 26th birthday, on<br />

the 10th February 2011<br />

I was told I had breast<br />

cancer. I had been to<br />

see my GP, who luckily<br />

took me seriously when<br />

I said my left breast<br />

‘didn’t feel the same’.<br />

Within 2 weeks I saw the Breast Consultant<br />

and had an ultrasound and a biopsy. Due to<br />

my age I was told it was likely to be benign.<br />

I went by myself to get the results, having<br />

told everyone it was going to be fine. My<br />

heart sank when they both walked in. I knew it<br />

didn’t need two people to deliver good news.<br />

Life had to be put on hold. Buying a house<br />

and getting engaged were suddenly swapped<br />

for a mastectomy and waiting for my hair to<br />

fall out.<br />

The mastectomy and lymph node clearance<br />

went well, but later on I developed issues.<br />

Being an avid rock climber before treatment<br />

started, I was determined to continue. I<br />

ignored advice and went off to hang from a<br />

cliff face in Wales!<br />

Unfortunately, I went on to develop<br />

lymphoedema in my left arm. It is well<br />

managed with compression garments and<br />

massage. I have also developed regional pain<br />

over the scar tissue on my chest. Again, this is<br />

well managed and I continue to swim, climb<br />

and run.<br />

I was given the chance to freeze my eggs<br />

prior to chemotherapy but sadly this didn’t<br />

work out. Adding chemotherapy, ovarian<br />

suppression and hormone therapy to the mix<br />

meant that a later round of IVF also failed, and<br />

it is extremely unlikely I will ever have children.<br />

Chemotherapy was a tough ride. As soon as I<br />

knew I would lose my hair I had it all cut short.<br />

As soon as it started to fall out I shaved it off.<br />

Everything was lost except my leg hair. I’m<br />

convinced that my leg hair and cockroaches<br />

will survive the end of the world. I became<br />

quite ill with neutropenia towards the end<br />

of chemotherapy. I remember lying in the<br />

isolation unit in hospital thinking I was going<br />

to die. I ended up with peripheral neuropathy<br />

in my hands and feet which has left me with<br />

very little sensation in them.<br />

Radiotherapy felt fine at first, but I had<br />

been warned that the effects would be<br />

accumulative. My skin burnt badly, and I was<br />

fatigued by the end of those 5 weeks.<br />

After ‘Active’ treatment ended I took<br />

Tamoxifen. If anyone was going to develop a<br />

rare side effect from it then it would be me so<br />

I now have regular eye checks for Tamoxifen<br />

related Crystalline Retinopathy.<br />

Seven years on from diagnosis, I have come<br />

out of this feeling physically and emotionally<br />

damaged. Everything you feel is normal and<br />

perfectly acceptable.<br />

Don’t be afraid to<br />

ask for help.<br />

There are lots of us – you are not alone. Learn<br />

to laugh. Do your research. Life may never be<br />

the same after a cancer diagnosis, but it must<br />

go on.<br />

12 abcdiagnosis.co.uk Support for all affected by Primary and Secondary Breast Cancer<br />

<strong>ABCD</strong> <strong>Book</strong> V2.indd 12 07/04/2020 19:57


Breast Care Nurses are specialist nurses who work solely<br />

within Breast Cancer. They are experienced nurses who<br />

have also undergone further specialist education and<br />

training in caring for patients with breast disease.<br />

The Breast Care Nurse acts as a key worker throughout a<br />

patient’s treatment pathway and liaises closely with the multidisciplinary<br />

team involved with a patient’s care. All breast care<br />

nurses are expected to:<br />

• Use their knowledge of cancer and treatment to oversee<br />

and coordinate services, personalising the cancer pathway<br />

for individual patients and meeting the complex information<br />

and support needs of patients and their families<br />

• Use empathy and advanced communication skills as well<br />

as their knowledge and experience to assess and alleviate<br />

the psychosocial suffering of cancer including referring to<br />

other services as needed<br />

• Use their insight from patient experience to lead service<br />

redesign in order to implement improvements and make<br />

services responsive to patient need<br />

Specialist nurses involved in primary breast cancer also manage<br />

family history clinics, the complications of surgery including<br />

drainage of seromas, prosthesis fitting, identification of<br />

recurrence and adjustment to survivorship. Many have advanced<br />

examination skills and manage patients’ breast cancer follow up<br />

instead of the surgeon.<br />

In recent years, there has been nationwide acknowledgement<br />

that while breast care nurses have a consistent set of core skills,<br />

there is a significant difference between the knowledge and skills<br />

required to support patients through diagnosis, surgery (including<br />

reconstruction), chemotherapy/radiotherapy and survivorship in<br />

early breast cancer, versus those required to support patients<br />

with metastatic disease where no cure is possible. In addition to<br />

this, the government ensure hospital trusts are meeting targets<br />

for the diagnosis and treatment of primary breast cancer, but<br />

no such targets exist for secondary breast cancer, creating an<br />

unconscious bias for specialist nurses who are trying their best to<br />

support a high volume of patients through their cancer journey.<br />

Breast Cancer Care have worked with patients who have<br />

Secondary Breast Cancer to provide a list of requirements for<br />

specialist nurses (or a CNS - Clinical Nurse Specialists) working in<br />

advanced (secondary/metastatic) disease which include:<br />

• Specialist knowledge of metastatic (secondary) breast<br />

cancer and how it can progress over time.<br />

• Specialist oncology treatment / palliative care knowledge.<br />

• Understanding of the implications of living with a chronic,<br />

life limiting illness.<br />

• Understanding of the psychosocial, spiritual/existential<br />

impact of metastatic breast cancer on the patient / family.<br />

• Knowledge of local and national support services for<br />

metastatic breast cancer patients.<br />

• Knowledge of current clinical research and trials.<br />

• Knowledge of end-of-life care guidance.<br />

• Knowledge of national and local information and support<br />

for patients’ families.<br />

• Ability to discuss long-term illness issues, palliative care and<br />

end-of-life issues.<br />

• Managing conversations with family members including<br />

children.<br />

BREASTCANCER<br />

NURSES<br />

“The Christie team became a service<br />

focussing purely on Secondary Breast<br />

Cancer in 2016 and have developed<br />

a structured support pathway for<br />

patients in their first year after<br />

diagnosis. The team feel this allows<br />

for a proactive rather than reactive<br />

way of working and allows for the<br />

development of a strong relationship<br />

between patients and nurses. The<br />

approach helps the team to provide<br />

better information for patients, helps<br />

to act on issues before they reach crisis<br />

point, and uses the nursing resources<br />

they have more effectively.<br />

Medical appointments can focus on<br />

medical issues, and the CNSs can<br />

support the medical appointment but<br />

also focus on supporting patients in<br />

relation to their psychological and<br />

social needs. Working closely with<br />

palliative care, the team feels that<br />

the approach also facilitates earlier<br />

advanced care planning for the end of<br />

life, when it becomes appropriate.”<br />

BREAST CANCER SUPPORT 13<br />

<strong>ABCD</strong> <strong>Book</strong> V2.indd 13 07/04/2020 19:57


Lesley<br />

Eaton<br />

LIVING WITH METS<br />

@Joy_<br />

Blog_1975<br />

I was diagnosed with breast cancer in 2009, just<br />

3 years after I lost my Mum to the same disease.<br />

I was 34, I’d been sent for boob cyst draining,<br />

something that I was used to and not<br />

overly worried about. During my ultrasound<br />

the technician asked if I’d ever had a<br />

mammogram and suggested we pop me<br />

through for one.<br />

The mammogram showed a mass under<br />

my cyst. My Mum’s old Doctor got to tell<br />

me that, although we needed to wait for<br />

biopsy results, they were CONCERNED and<br />

SUSPICIOUS.<br />

Returning to the hospital after what I’d<br />

describe as a f**king s**t week, I knew what<br />

was coming... We were ushered into an office<br />

to meet an elegant woman with her greying<br />

hair tied in a messy bun. We did the hand<br />

shaking, she gave me the stern smile, and<br />

informed me that as expected I had cancer.<br />

I was not surprised. Devastated, but not<br />

surprised. My questions were;<br />

• Am I going to die?<br />

• How am I going to tell Dad?<br />

• Can I drink wine?<br />

• Can we get kittens?<br />

I had invasive ductal carcinoma, grade 2b,<br />

ER/PR positive, HER 2 negative with lymph<br />

node involvement, still primary, and still<br />

curable.<br />

After a year of treatment, I was packed<br />

off with a box of Tamoxifen tablets. Then,<br />

following 3 years of scanxiety, I visited my<br />

oncologist for a routine appointment in 2013<br />

to be hit with a curve ball. “How about a<br />

Tamoxifen break to try for a baby?” We told<br />

the doc we’d think about it but that I needed<br />

to get a rheumatology appointment out of<br />

the way first; I had this muscle pain in my<br />

chest, an RSI probably…<br />

B*llocks!! My precautionary bone scan<br />

showed an unexplainable patch on my<br />

sternum. A bone biopsy explained it - an<br />

isolated sternal lesion.<br />

I had 5 months of Paclitaxel chemotherapy,<br />

a sternum resection and reconstruction<br />

(ouch!), then Zolodex, Zometa & Letrozole…<br />

Like, forever this time…<br />

By 2018, after 5 more years of scanxiety, I’m<br />

thinking that if my next PET scan shows no<br />

evidence of disease, miraculously I’ll be in<br />

remission…!!!<br />

I’ve had no pain but it’s not good news… 2<br />

hip mets and a neck one too. Treatment is a<br />

bit of an adjustment, but do-able. I feel like<br />

setting up camp in the hospital car park…<br />

12 weeks later, a scan shows progression in<br />

one of the mets threatening to de-stabilize<br />

my right leg. They recommend a full hip<br />

replacement. Within 2 weeks I am a bionic<br />

woman, and yes, I will set off airport alarms<br />

(we all need silver linings).<br />

Currently, I’m awaiting another scan to assess<br />

whether my other mets remain stable so that<br />

I can stay on these very do-able drugs. I have<br />

everything crossed apart from my legs - not<br />

quite there after the hip op!<br />

I have a good life, it’s complicated<br />

and scary at times but I’m still here,<br />

still smiling, still dancing (soon).<br />

I’m living with mets.<br />

14 abcdiagnosis.co.uk Support for all affected by Primary and Secondary Breast Cancer<br />

<strong>ABCD</strong> <strong>Book</strong> V2.indd 14 07/04/2020 19:57


LEANNE<br />

NASH<br />

My breast cancer journey<br />

@cancER<br />

journeyuk<br />

I was diagnosed with High<br />

Grade DCIS the week before<br />

Christmas 2017.<br />

I’d had bloody discharge from my nipple<br />

and headed to the doctors in October. I<br />

was referred to the breast clinic where I<br />

underwent an ultrasound and core biopsy.<br />

The results showed nothing suspicious except<br />

the discharge coming from my breast. My<br />

consultant was sure it was nothing to worry<br />

about and was happy to leave me and review<br />

6 weeks later but I could sense something<br />

wasn’t right.<br />

The next day I called the hospital and told<br />

them I didn’t want to wait. I was allowed to<br />

see the Consultant again later that week. She<br />

agreed to a microductectomy to remove what<br />

she believed to be a papilloma. Unfortunately<br />

during that operation they discovered an area<br />

of suspicion and the biopsy results confirmed<br />

I was suffering with High Grade DCIS with<br />

necrosis. Initially I wanted to have a double<br />

mastectomy to reduce the risk as much as<br />

possible but my team at the hospital said they<br />

thought a wide local excision would work best<br />

for me. Despite my feelings, I agreed to their<br />

recommendation.<br />

The surgery meant that I would lose my<br />

nipple. I was devastated by this. Losing the<br />

nipple seemed to affect me more than hearing<br />

my diagnosis.<br />

Unfortunately the DCIS was more widespread<br />

than originally thought and the surgery did<br />

not achieve clear margins. I was told that I<br />

would require a full mastectomy. I was again<br />

refused the double mastectomy I wanted, in<br />

case infection in my healthy breast caused<br />

any delay to further treatment of the cancer.<br />

My mastectomy with immediate expander<br />

reconstruction was performed on 19 February.<br />

I spent one night in hospital and went home<br />

the next day. I had to sleep sat upright in my<br />

bed with loads of cushions to start with but<br />

gradually as the swelling reduced I was able<br />

to lie flat. It’s worth noting that the pain after<br />

mastectomy gets worse around day 3/4 when<br />

the nerve endings start to repair - but it’s fine<br />

you get through it.<br />

The expander was gradually filled to 450cc<br />

to match my other breast. I continued to<br />

push for the prophylactic or ‘risk reducing’<br />

mastectomy on the healthy breast and after<br />

seeing the psychologist a couple of times<br />

I was approved. I waited 6 months for the<br />

operation and opted for a nipple sparing<br />

mastectomy on that side. Eventually my<br />

remaining nipple will be split and half of it will<br />

be grafted on to my ‘cancer boob’.<br />

I’m 5 days post mastectomy now and feeling<br />

good. I’m really pleased with the outcome<br />

so far. I’m now waiting for a date for my<br />

expander to be exchanged for an implant<br />

and once that’s complete the nipple sharing<br />

operation will complete the treatments.<br />

My advice to anyone newly diagnosed is to<br />

stay away from Google, remain positive, listen<br />

to your own body and always get a second<br />

opinion if you’re not happy.<br />

Love to you all xx<br />

BREAST CANCER SUPPORT 15<br />

<strong>ABCD</strong> <strong>Book</strong> V2.indd 15 07/04/2020 19:57


Helen Bacon<br />

Adapting to my new ‘normal’<br />

@Hamish_McHamish<br />

I was diagnosed with secondary breast<br />

cancer after finding a tiny pea-sized lump<br />

in my armpit in April 2016. I was physically<br />

fit, had just completed my first half Ironman<br />

triathlon, had no family history of breast<br />

cancer and no other symptoms.<br />

At the time of diagnosis, I had a<br />

mammogram that came back clear. I now<br />

know that this was due to breast density.<br />

Luckily the consultant decided to send me<br />

to ultrasound where the armpit lump was<br />

diagnosed as a lymph node.<br />

From there it was a barrage of tests,<br />

biopsies and scans resulting in the<br />

discovery of multiple tumours in my liver.<br />

All other areas appeared to be clear. The<br />

major milestones of treatment since then<br />

have included:<br />

• A lumpectomy and full lymph node<br />

clearance on the right<br />

• 6 rounds of EC chemotherapy<br />

(epirubicin and cyclophosphamide)<br />

• 15 sessions of radiotherapy to the<br />

breast<br />

• 6 sessions of GemTaxol<br />

chemotherapy (gemcitabine and<br />

paclitaxel)<br />

• 3 sessions of Carboplatin<br />

chemotherapy (that didn’t work)<br />

• Hysterectomy<br />

• Capecitabine chemotherapy<br />

• Microwave ablation of the liver<br />

• Palbociclib and Fulvestrant<br />

• Eribulin chemotherapy<br />

I am about to lose my hair for the third time<br />

but chose not to wear wigs or hats. Instead,<br />

I’ve had both sides of my scalp tattooed so<br />

that they are exposed when I am bald. In<br />

some small way this gives me control.<br />

I try my hardest to live with this disease<br />

and whilst it does now dominate all<br />

aspects of my life, I am determined that it<br />

will not stop me being me. To this end I<br />

have continued to work full-time, work in<br />

a voluntary capacity at the weekends as a<br />

coach for Pegasus Riding for the Disabled<br />

and above all, continued to exercise as<br />

much as possible.<br />

This includes swimming, running, cycling<br />

(and the odd triathlon where I combine<br />

all three), Pilates and horse riding. I firmly<br />

believe that this has made some of the<br />

most unpleasant side-effects of treatment<br />

more bearable.<br />

In order to encourage others to keep<br />

moving during treatment I have launched<br />

5K Your Way at Stretford Parkrun:<br />

www.facebook.com/Stretford5KYourWay/<br />

I have three monthly scans and find it<br />

hard to plan anything beyond this date. I<br />

got married last year and try to live my<br />

life to the full. I’ve completely readjusted<br />

my attitude to life in order to cope with<br />

the mental and physical load this disease<br />

places on me, but life really does go on.<br />

I’m grateful to the staff at the<br />

Christie Hospital, Manchester<br />

for treating me with such care<br />

and compassion and believing<br />

that I still have a future, all be it<br />

probably a shorter one than I had<br />

anticipated.<br />

Never forgotten | 1972 – 2020<br />

16 abcdiagnosis.co.uk Support for all affected by Primary and Secondary Breast Cancer<br />

<strong>ABCD</strong> <strong>Book</strong> V2.indd 16 07/04/2020 19:57


Deciding which surgery<br />

can feel stressful,<br />

particularly when you only<br />

have a short period of time<br />

to make that decision. You<br />

need to take your time to<br />

make the right decision for<br />

you long term. The good<br />

news is that the decision<br />

for most patients is not as<br />

complicated as it may at<br />

first appear.<br />

CHOOSING THE<br />

RIGHT SURGERY<br />

FOR YOU<br />

by James Harvey<br />

Consultant Oncoplastic Breast Surgeon<br />

at the Nightingale Centre<br />

Manchester Foundation Trust<br />

Lumpectomy or mastectomy?<br />

If you are being offered a lumpectomy as a choice,<br />

the chances are this means the cancer is small<br />

and can be removed keeping your breast looking<br />

cosmetically good. From a cancer point of view you<br />

are as likely to be cured following a lumpectomy as<br />

you are from a mastectomy. Lumpectomy is smaller<br />

surgery and a quicker recovery. Most patients will<br />

need radiotherapy (X-ray) treatment to the breast<br />

following this, requiring 15 treatments over 3 weeks<br />

to the breast. Lumpectomy is the best option for<br />

most women. Mastectomy is a bigger operation with<br />

more recovery, a bigger cosmetic and psychological<br />

impact. This may be a better option if the cancer is<br />

widespread in the breast or you have a high future<br />

risk of breast cancer (e.g. lots of members in the<br />

family have had breast cancer before).<br />

If you are not sure, ask your breast care nurse for their advice.<br />

“I’ve been offered a<br />

mammoplasty to take out<br />

my cancer.”<br />

Is this a good option?<br />

If you have larger breasts then having a breast<br />

reduction (mammoplasty) can be a really good<br />

option. It will reduce the volume and weight of<br />

your breasts and will allow the surgeon to take<br />

the cancer out with a large potential margin of<br />

tissue around it. It also reduces the dose<br />

of radiotherapy that would be needed to<br />

penetrate a large breast. This may mean less<br />

redness and side effects from radiotherapy.<br />

Ask to see pictures of this<br />

type of surgery so you can get an idea of what it will look like.<br />

Immediate<br />

or delayed<br />

reconstruction<br />

Immediate reconstruction is done at the<br />

time of your mastectomy and delayed is<br />

usually done 6-36 months after cancer<br />

surgery. Immediate is the best option<br />

for most as it is one major operation to<br />

remove the cancer and reconstruct the<br />

breast. It also maintains the skin and look<br />

of the breast more effectively. Reasons<br />

to consider having a simple mastectomy<br />

followed by a delayed reconstruction<br />

include; wanting to have straightforward<br />

and short surgery and recovery, your<br />

surgical team recommend it to give<br />

the best cancer surgery if the cancer is<br />

extensive or they are concerned keeping<br />

the skin of the breast will put you at risk<br />

of the cancer returning, or if you have<br />

other things going on in your life and<br />

recovery from major surgery doesn’t fit<br />

at the minute.<br />

If you are not happy with the choices being offered or the service you are receiving,<br />

it can be reassuring to get a second point of view from a different surgeon or unit.<br />

Being fit helps you recover from surgery quicker so ask about “prehab” for surgery.<br />

BREAST CANCER SUPPORT 17<br />

<strong>ABCD</strong> <strong>Book</strong> V2.indd 17 07/04/2020 19:57


Sarah Tebbett<br />

Breast cancer didn’t slow me down!<br />

In November 2015 when I was 38 years old I noticed<br />

a change in my left breast. My GP referred me to the<br />

local breast clinic for assessment because of my family<br />

history. When I attended the appointment it was in the<br />

evening and the clinic was running late. The consultant<br />

was initially unconcerned and felt that it might be a<br />

cyst but sent me for a mammogram and ultrasound<br />

scan to be certain. I was told at nearly ten o’clock that<br />

night that it was almost certainly breast cancer.<br />

Two weeks after the appointment it was confirmed that<br />

I had Her2+ invasive breast cancer in my left breast. The<br />

consultant advised that I would need a mastectomy<br />

followed by a course of chemotherapy and a targeted<br />

therapy called Herceptin.<br />

I had my mastectomy with immediate implant<br />

reconstruction on 23rd December 2015. With lots<br />

of help from my family I recovered well and began<br />

walking my children to school again after the Christmas<br />

holidays. I did have issues with the wound healing after<br />

surgery, which was treated with a continuous pressure<br />

dressing and a second operation to reclose it. My<br />

lymph nodes had been clear of cancer but six cycles<br />

of chemotherapy and a course of Herceptin were still<br />

required to reduce the chances of future recurrence.<br />

I was always very aware that I was one of the youngest<br />

patients in the waiting room. During the patient<br />

talk before chemo began the nurse advised that we<br />

shouldn’t let the grandkids visit if they were poorly…<br />

@BCCWW<br />

Search the hashtag #BCCWW<br />

@TebbettSarah<br />

There was no mention of what I should do as a mother if<br />

my three primary school age children were unwell!<br />

While I was going through treatment I found a cancer<br />

wellness programme that was being run by the Local<br />

Authority where I live. I enrolled and took part in<br />

activities such as Nordic walking, Tai Chi and a gym<br />

programme tailored to my needs.<br />

I stumbled across an active community of breast cancer<br />

patients on Twitter, where I found Jo Taylor and began<br />

following #BCCWW. I saw a tweet about a retreat that<br />

she was organising for breast cancer patients and was<br />

able to attend the dates so was lucky enough to be part<br />

of the first ever <strong>ABCD</strong> retreat, showing me my body<br />

was still able to do and enjoy exercise.<br />

I’ve continued to exercise, completing a half marathon<br />

for charity, and winning first place in a novice weight<br />

lifting competition. It’s not only improved my physical<br />

health and helped me to lose weight but supported my<br />

emotional health and helped me to stay positive.<br />

WHAT IS<br />

SCALP<br />

COOLING?<br />

Scalp cooling is a simple treatment that can help<br />

to prevent hair loss caused by chemotherapy.<br />

Not all chemo drugs cause hair loss, but for<br />

those that do, scalp cooling is the only effective<br />

solution to this problem.<br />

For more information please visit:<br />

18 abcdiagnosis.co.uk Support for all affected by Primary and Secondary Breast Cancer<br />

<strong>ABCD</strong> <strong>Book</strong> V2.indd 18 07/04/2020 19:57


Codilia<br />

Gapare<br />

@c_lashby<br />

cody<br />

What I did when I got<br />

sick and tired of being<br />

sick and tired!<br />

It’s 01:30am and I have spent the past 2<br />

hours writing about my treatment from<br />

start to finish. Realising that the reason I<br />

decided to write about my journey is not<br />

to moan about the things that I could not<br />

change, but to describe the things that<br />

taught me valuable lessons, I have binned<br />

the whole thing. Instead I am going to tell<br />

you what I did when I got sick and tired of<br />

being sick and tired!<br />

Treatment made me increasingly ill. I was<br />

spending days on end in bed, unable to<br />

eat because of nausea, unable to sleep<br />

because I was pumped full of steroids<br />

and unable to get comfortable because<br />

chemotherapy was making my bones ache.<br />

This was so relentless that on the days that<br />

I felt a little better all I wanted to do was to<br />

dress up and get out of the house.<br />

I decided to go in to work on the days that<br />

I was able. I was a single mother with 2<br />

boys to look after so I needed the money.<br />

But also, everyone at work treated me<br />

exactly like they had before my illness, so I<br />

felt like I could leave the “Cancer Cody” at<br />

home in bed on those days. ‘Lipstick and<br />

heels’ became my war-cry, as I focussed<br />

my energy on making myself look good<br />

and began to enjoy planning my outfits.<br />

I did not want people to know that I<br />

had cancer, so my hair and makeup had<br />

to be perfect. Once my hair, lashes and<br />

eyebrows fell out, looking ‘normal’ became<br />

a challenge. Wigs were easy, but eyebrows,<br />

and particularly eyelashes, were trickier. I<br />

guess it was this frustration that gave me a<br />

business idea.<br />

What if there was an eyelash<br />

that was easy for anyone<br />

without existing eyelashes to<br />

wear? What if I could come up<br />

with this lash that would stay<br />

in place all day and not droop?<br />

What if….?<br />

This little question gave me a new lease of<br />

life! On the days when I was too ill to go to<br />

work, I was no longer lying there looking at<br />

the ceiling. Instead I was making sketches<br />

of my ideas and drafting business plans.<br />

At any other time the enormity of what I<br />

was taking on would have scared me into<br />

behaving myself, but this was not any<br />

other time. I started researching my client<br />

base and writing to anyone who I thought<br />

had clout in the industry. I cannot tell you<br />

how many times I had doors shut in my<br />

face!<br />

You do not have to start a<br />

business or dress up every night<br />

while going through treatment,<br />

everyone is different… But for me,<br />

focusing on something other than<br />

the cancer allowed me to take<br />

back my life. Eyelure C-Lash Lashes<br />

are now widely available and even<br />

stocked at Boots!<br />

BREAST CANCER SUPPORT 19<br />

<strong>ABCD</strong> <strong>Book</strong> V2.indd 19 07/04/2020 19:57


Samina<br />

Hussain<br />

@SamHuss<br />

26744130<br />

“<br />

When I was diagnosed<br />

”<br />

with Breast Cancer in<br />

2014 I was 45 years old<br />

and my world fell apart.<br />

I felt so many emotions and wanted to know<br />

why this was happening to me. For the first<br />

few weeks I couldn’t discuss the “C word”. I<br />

needed time to understand how my life had so<br />

suddenly and dramatically changed.<br />

As I came to terms with my diagnosis and lifted<br />

my head, I found other woman that I could talk<br />

to. There weren’t many from the South Asian<br />

community so I presumed this type of Cancer<br />

did not affect them, which was far from the<br />

truth. My coping mechanism was to share my<br />

journey on Facebook. I found great strength in<br />

connecting with others and had an opportunity<br />

to say what I really felt.<br />

Once I had shared my journey, other woman<br />

connected and shared stories of loosing either<br />

their mother or sister to Breast Cancer. They<br />

felt that they had never been allowed to discuss<br />

their grief, and by sharing my journey I had<br />

given them a platform to acknowledge this.<br />

I had my lumpectomy first, then chemotherapy<br />

which has its complexities, and then finished<br />

with a month of radiotherapy. During treatment<br />

I also had a blood clot so spent many weeks<br />

in hospital. We all have trials and tribulations<br />

in life, but what truly gave me strength is<br />

surrounding myself with positive supportive<br />

people who did not judge me and just wanted<br />

to walk alongside me. I feel that God sent me<br />

an army.<br />

My faith teaches me that if you take from a<br />

system then you need to give back. I am the<br />

Co-founder of “Knit Your Socks Off” with Sbba<br />

Sidique, who knitted me some socks when I<br />

was having chemotherapy. We knit, stitch and<br />

crotchet thousands of items such socks for<br />

the local chemotherapy unit, baby packs for<br />

neonatal units, hand twiddle mitts for dementia<br />

patients, trauma teddies and angel cribs for<br />

the maternity unit. Our group now has 700<br />

members on Facebook.<br />

I have also set up the charity “Sakoon Through<br />

Cancer” with fellow breast cancer patient<br />

Lyna Butt, to support the POSAO community.<br />

“Sakoon” means tranquillity and to overcome<br />

any adversity in life you need peace in your<br />

heart to begin the healing process. South Asian<br />

woman ARE affected by breast cancer but<br />

due to the taboo of Cancer and the challenges<br />

society and culture places upon them, they<br />

have no voice.<br />

Since embarking on this journey I have<br />

I won the Sue Ryder Southern Woman<br />

of Courage Award, been on the Victoria<br />

Derbyshire programme, spoken on various<br />

radio programmes, and been invited to many<br />

community events to raise the profile of Breast<br />

Cancer and self examination in the South Asian<br />

community.<br />

Today I am a strong tall and bold woman<br />

who is grateful for everyone that has walked<br />

alongside me. Nobody should face Cancer<br />

alone.<br />

As a patient, you go through so much, but<br />

your family and friends come with you…<br />

20 abcdiagnosis.co.uk Support for all affected by Primary and Secondary Breast Cancer<br />

<strong>ABCD</strong> <strong>Book</strong> V2.indd 20 07/04/2020 19:57


POST-OP<br />

PHYSIO<br />

Physiotherapy can help with pain, stiffness,<br />

regaining movement, fatigue management, scar tissue,<br />

lymphoedema, exercises, function and pleasure.<br />

My Specialist interest in working with people who<br />

have had a cancer diagnosis comes from 25 years<br />

working in oncology and palliative care. Fascia,<br />

tissue under the skin, around and between our<br />

muscles, amongst our organs, nerves, blood vessels<br />

and attached to bone is almost everywhere in the<br />

body. This important “connective tissue,” embraces<br />

muscles so that they work efficiently and when we<br />

move, structures slip across one another smoothly.<br />

When we have an operation, accident or<br />

radiotherapy, the fascia can be scarred and get<br />

“stuck,” causing restriction in movement with or<br />

without associated pain. The post-op advice you<br />

have been given is likely to be based on knowledge<br />

of your surgery and treatment as well as what is<br />

considered to be best practice at the time.<br />

It’s useful to see how a person moves before their<br />

surgery. Multiple trips to theatre means more scar<br />

tissue, which can mean someone will need more<br />

physio. It can be useful for people to have physio<br />

before surgery to free things up as much as possible<br />

– prehab. Sometimes, I see people a few weeks after<br />

their treatment. Others may find their way to me<br />

years or decades later. Mostly, people don’t know<br />

that physio can help with scar tissue. Some will have<br />

had support from a lymphoedema specialist.<br />

Effects of surgery are not always localised although<br />

people often imagine that breast surgery will “only”<br />

affect the adjacent shoulder. It may also affect the<br />

legs or back and neck.<br />

The “hands on” techniques are effective on recent<br />

scars as well as those decades old! We are all<br />

different. Scarring is an important part of healing.<br />

Not all scars cause problems and not all are physical.<br />

From the moment our skin is cut the body starts<br />

to heal. It is essential that a “hole” in our skin, soft<br />

tissues or bones heals and forming a scar is part of<br />

this process. Many of the people who come to me<br />

for “hands on,” physiotherapy have problems with<br />

scarring that is restrictive, tight, makes them dislike<br />

their appearance, contorts their body out of shape<br />

or hurts – scarring which is not protective and useful.<br />

People may be doing useful stretches for their<br />

tightened areas, may be applying moisturizer which<br />

suits their skin, but others never look or touch and<br />

arrive with vulnerable dry skin or toughened hard<br />

tissue.<br />

It is not unusual for me to be the only person who<br />

sees and touches a scarred area. Sometimes family<br />

and partners will be kept away from the area out<br />

of embarrassment, care not to hurt, horror, fear,<br />

shame or disgust. For others, the healing area will<br />

be handled lovingly at home as well as respectfully<br />

by me.<br />

For many, scars are not just “skin deep.” Emotional<br />

scars associated with injury, surgery, radiotherapy<br />

and times of vulnerability can be the deepest. It<br />

is moving to hear people describe themselves as,<br />

“disfigured,” and a joy to see change for people who<br />

didn’t know that change was possible – or had given<br />

up hope.<br />

During a “course of treatment,” (ranging from an<br />

assessment to ask my opinion to several months of<br />

work together) people may feel comfort, improved<br />

flexibility, increased confidence in their body<br />

and its feel and appearance, reclamation of their<br />

sensuous and/or sexual life. Our sessions may also<br />

include movement, relaxation, breathing techniques,<br />

suggestions around stamina, celebrating triumphs,<br />

hearing people’s grief and change of expectation.<br />

Most often, I notice the sparkle returning to a<br />

person’s eyes and their choice of words changing –<br />

people speaking more hopefully and with increased<br />

confidence in their body.<br />

Leah Dalby MCSP<br />

Physiotherapist | LUNE VALLEY PHYSIOTHERAPY<br />

www.leahthephysio.co.uk<br />

BREAST CANCER SUPPORT 21<br />

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Your<br />

rights at<br />

work when<br />

you are<br />

affected<br />

by cancer<br />

* The following<br />

resources are included in<br />

The Essential Work and<br />

Cancer Toolkit, a pack<br />

for employers that can<br />

be ordered from<br />

www.macmillan.org.uk/<br />

worktoolkit<br />

FOR EMPLOYEES<br />

FOR EMPLOYERS<br />

• Work and cancer: a guide for people<br />

living with cancer<br />

• Work it out: essential questions to ask<br />

about work and cancer<br />

• Work it out for carers: essential questions<br />

for carers to ask about work and cancer<br />

• Working while caring for someone with<br />

cancer<br />

• Self-employment & cancer: living with<br />

cancer when you’re self-employed or<br />

running a business<br />

• Your rights at work when you’re affected<br />

by cancer<br />

• Managing cancer in the workplace: an<br />

employer’s guide to supporting staff<br />

affected by cancer<br />

• Top 10 tips for Line Managers<br />

• Cancer in the workplace (a DVD to help<br />

employers manage people affected by<br />

cancer at work)*<br />

• *You can order any of the resources<br />

online from www.be.macmillan.org.uk/<br />

work.<br />

WHAT IS DISCRIMINATION?<br />

Discrimination can include:<br />

• An employer not making reasonable<br />

changes to allow you to do the job<br />

• An employer giving you a warning for<br />

having time off sick, but not taking your<br />

cancer diagnosis into account.<br />

• An employer suggesting that it would be<br />

better if you retired or stopped working.<br />

• Dismissal for a reason related to cancer.<br />

• Being demoted to a lower-paid/lesser job<br />

for a reason related to your cancer.<br />

• Being passed over for promotion in favour<br />

of someone with less experience or ability<br />

to do the job because of a reason related<br />

to your cancer (for example if you’ve used<br />

more sick leave than your colleagues).<br />

• Not being given a job because of cancer.<br />

• Being given no time off for appointments.<br />

• Having an unfavourable appraisal or<br />

performance review<br />

• An employer making it difficult for you to<br />

get any sick pay you’re entitled to.<br />

• Being harassed – this is when an employer<br />

or colleague bullies, intimidates, insults you<br />

or makes you feel uncomfortable so you<br />

feel you can’t stay in your job<br />

YOUR RIGHTS AT WORK<br />

If you have cancer and are in paid employment, your<br />

employer should try to help and support you. Where<br />

reasonable, they should make changes to let you do your job<br />

during and after your cancer treatment.<br />

Legislation protects you from being treated unfairly at work<br />

because of cancer. If you live in England, Scotland or Wales,<br />

the Equality Act 2010 protects you.<br />

The Disability Discrimination Act 1995 and its extension, the<br />

Disability Discrimination Order of 2006, protect you if you live<br />

in Northern Ireland.<br />

This legislation doesn’t just protect employees. It also<br />

protects job applicants and people who are self-employed.<br />

22 abcdiagnosis.co.uk Support for all affected by Primary and Secondary Breast Cancer<br />

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HOW AM I PROTECTED?<br />

Under the Equality Act 2010 and the Disability<br />

Discrimination Act 1995 (DDA), it’s unlawful for an<br />

employer to treat you less favourably (discriminate<br />

against you) because of your disability. If you<br />

have cancer, you are legally classed as disabled.<br />

Even if you’ve had cancer in the past, it has<br />

been successfully treated and you are now<br />

in remission, you will still be covered by this<br />

legislation. This means your employer must not<br />

treat you less favourably for any reason related<br />

to your past cancer.<br />

Which areas of employment<br />

are covered by this<br />

legislation?<br />

The Equality Act and the DDA cover all areas of<br />

employment (even when you no longer work for<br />

your employer).<br />

These include:<br />

• The recruitment process<br />

• Your terms, conditions and benefits.<br />

• Opportunities for promotion and training.<br />

They also cover you if you are treated less<br />

favourably than other workers because of your<br />

cancer. This includes harassment and victimisation.<br />

Your employer also has to make reasonable<br />

adjustments to make it easier for you to work.<br />

WHAT ARE REASONABLE<br />

ADJUSTMENTS?<br />

Both the Equality Act and the DDA require your<br />

employer to make reasonable adjustments to<br />

your workplace and their working practices.<br />

They are required to do this when the workplace<br />

or their working practices mean you are at<br />

a substantial disadvantage because of your<br />

cancer, compared to those who don’t have<br />

cancer.<br />

There is no fixed description of what a<br />

reasonable adjustment is. But it will depend on<br />

things such as:<br />

• How much the adjustment costs<br />

• How much the adjustment will benefit you<br />

• How practical it is to make the adjustment<br />

• Whether making the adjustment will<br />

affect your employer’s business, service or<br />

financial situation.<br />

Your employer does not have to make a<br />

reasonable adjustment unless it knows (or<br />

should reasonably know) that you have cancer.<br />

For more information visit: www.macmillan.org.uk/<br />

information-and-support/organising/work-and-cancer/<br />

information-for-employees/your-rights.html<br />

Visit: www.workingwithcancer.co.uk for more information<br />

This information is not a substitute for legal advice. If you need legal advice, please contact a solicitor. While we do<br />

everything we can to provide the highest quality information, ABC Diagnosis & Macmillan will not accept any liability for the<br />

use, or inability to use any information provided in this editorial.<br />

BREAST CANCER SUPPORT 23<br />

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Medical (Drug)<br />

Therapy for<br />

Breast Cancer<br />

The three main<br />

modalities<br />

for treating<br />

breast cancer<br />

are surgery,<br />

radiation therapy<br />

and medical or<br />

drug therapy.<br />

80%<br />

of breast cancers are<br />

Estrogen Receptor<br />

(ER) positive<br />

50%<br />

of breast cancers are<br />

Progestogen Receptor<br />

(PR) positive<br />

These receptors are proteins present on the centre part of the cancer<br />

cell, and such tumour cells “feed” from estrogen, the female hormone.<br />

17%<br />

of breast cancers are positive<br />

for the HER-2 receptor<br />

protein found on surface<br />

of cancer cells which<br />

makes the cancer grow<br />

15%<br />

15% of breast cancers<br />

are negative for ER, PR<br />

and HER-2 receptors<br />

KNOWN AS ‘TRIPLE NEGATIVE’<br />

ER +ve cancers can be treated with “hormone<br />

therapy” or drugs that either block the ER (e.g.<br />

Tamoxifen) or remove oestrogen from the system<br />

(e.g. Letrozole). HER-2 receptor +ve cancers can<br />

be treated with “anti-Her-2 therapy” or drugs<br />

that block the HER-2 receptor (eg. Trastuzumab -<br />

Herceptin®). These treatments are often combined<br />

with “chemotherapy”.<br />

“Chemotherapy” or “non-targeted systemic<br />

therapy” usually refers to drugs that kill cancer cells<br />

or stop them growing, but are less “targeted” than<br />

e.g. hormone therapy and have more side effects<br />

because they can also damage other cells in the<br />

body such as hair follicles or immune system cells<br />

leading to side effects such as hair loss or risk of<br />

infection. Such drugs can be intravenous or tablets.<br />

Different chemotherapy drugs work in different<br />

ways leading to different side effects and larger<br />

doses cause more side effects than smaller doses.<br />

Most side effects are temporary.<br />

“Adjuvant” medical therapy refers to the use of<br />

any treatment (e.g. chemo, hormone, anti- HER-<br />

2) after surgery has removed the tumour. This is<br />

to kill microscopic cells which may have spread<br />

via the blood stream to other parts of the body<br />

and, if left untreated, could grow into secondary<br />

tumours. Most adjuvant chemotherapy courses<br />

last approximately 6 months and can involve<br />

multiple drugs and different regimens. Adjuvant<br />

chemotherapy reduces the risk of developing future<br />

secondary cancer by approximately half; e.g. If, after<br />

surgery, a patient has a future risk of secondary<br />

cancer of 20%, then 6 months of adjuvant<br />

chemotherapy reduces the risk to approximately<br />

10%. Sometimes chemo is given prior to surgery to<br />

treat the whole body and shrink the tumour first.<br />

Adjuvant hormone therapy usually means taking<br />

a tablet (e.g. Letrozole) for 5 to 10 years. This also<br />

reduces the residual risk of secondary cancer by<br />

half over a 10 year period.<br />

Patients who develop secondary breast cancer<br />

may receive chemotherapy, hormone therapy<br />

or anti HER-2 therapy as part of a treatment<br />

programme for the secondary tumours in other<br />

parts of the body (e.g. the bones). The drugs and<br />

treatment programme is chosen by your oncologist<br />

based on the nature of the cancer, potential side<br />

effects and likelihood of response to treatment.<br />

Patients normally have scans to assess response.<br />

“Partial remission” means that the tumours shrink<br />

and become dormant or stable on scan. Medical<br />

therapy is often combined with radiotherapy and<br />

surgery for the best outcome and to keep patients<br />

in remission for prolonged periods.<br />

24 abcdiagnosis.co.uk Support for all affected by Primary and Secondary Breast Cancer<br />

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@duck<br />

girl73<br />

BETH<br />

ROBERTS<br />

I have always enjoyed<br />

exercise and led a<br />

healthy lifestyle, so it<br />

came as a shock when<br />

I was diagnosed with<br />

“de novo” metastatic<br />

breast cancer in<br />

March 2015.<br />

I am 45 years old and I live in Liverpool. I am<br />

a mother to two beautiful children and have a<br />

wonderful husband, Oliver. I have always enjoyed<br />

exercise and led a healthy lifestyle, so it came as<br />

a shock when I was diagnosed with “de novo”<br />

metastatic breast cancer in March 2015. I had<br />

been training for a half marathon when I had to<br />

stop mid-run due to excruciating back-pain. I was<br />

diagnosed with a back strain, but later discovered<br />

that I had actually broken my back in three<br />

places due to the extensive spread of cancer in<br />

my bones.<br />

I had an emergency corpectomy to remove the<br />

crumbling vertebra that was pressing on my<br />

spinal column. I also had a hip replacement to<br />

prevent fracture. My children and family were<br />

hugely impacted by seeing me immobilised. The<br />

early days were very tough, as I had to regain<br />

my fitness and adjust to what this diagnosis<br />

meant for my future. Life felt like it had shrunk.<br />

I started to reach out to other secondary breast<br />

cancer patients via YBCN and Jane McClelland’s<br />

facebook group, which helped.<br />

Initially I felt that I was being treated quite<br />

passively by my medical team, so I moved my<br />

treatment to The Christie, which is a centre of<br />

excellence and has strong links to trial teams to<br />

access newer drugs. I had my primary tumour<br />

removed because my oncologist felt it would<br />

improve my outcome. I am currently on the<br />

B-AHEAD3 trial, which focuses on diet and<br />

exercise, and finding it a very positive experience.<br />

I believe in exercise, diet and off-label drugs to<br />

try to improve my day-to-day well-being and,<br />

hopefully, my long-term outcome. I know I am<br />

very lucky to be looked after by such a dedicated<br />

team.<br />

Day-to-day life can go from feeling almost<br />

“normal” where I can pop to the gym, cook tea,<br />

and do some domestic chores, to being unable<br />

to do anything due to the side effects of the<br />

drugs. I now try not to over schedule myself and<br />

have many rest periods. I have learnt in the last<br />

three years that every patient has an individual<br />

path, and whilst we know the median response<br />

to a given drug, we do not know how we will<br />

respond as an individual. I have had to learn to<br />

live more in the moment, and try not to focus on<br />

the future.<br />

I had to give up work, but as a research ecology<br />

student I continue to study. I also constantly<br />

research about my cancer. To start with I felt that<br />

increased knowledge about drug options and<br />

trials could help me, but I quickly discovered the<br />

lack of research money for secondary breast<br />

cancer, limited drug options, lack of awareness,<br />

and strict trial criteria.<br />

It’s very frustrating,<br />

which is why I decided<br />

to advocate for<br />

@metupuk to try to<br />

improve survival<br />

outcomes for all<br />

secondary breast<br />

cancer patients.<br />

BREAST CANCER SUPPORT 25<br />

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JULIE WRAY<br />

INTRODUCING<br />

SANDRA AND NORMAN<br />

@JuWray<br />

“<br />

Despite having had two<br />

”<br />

different cancers, breast<br />

cancer in 2006/7 then bowel<br />

cancer in 2016, I am alive and<br />

kicking and most grateful!<br />

I gave my cancers names… Sandra was my<br />

breast cancer. She came into my life out<br />

of the blue the day after my 49th birthday.<br />

Removing her involved 4 operations,<br />

chemotherapy, and radiotherapy, followed by<br />

7 years of medications.<br />

My world came crashing down, being a<br />

younger woman with two teenage sons, a<br />

husband, and a fabulous career that I loved.<br />

We also had a wonderful family holiday<br />

planned. I can remember clearly the surge of<br />

anger and desperation for it all to go away as<br />

quickly as possible. I had no time to be ill.<br />

One of the hardest things was telling my<br />

family. Our sons were aged 15 & 18 but they<br />

were amazing and so positive! They had to<br />

grow up and take on more roles in our home<br />

but looking back now it was a good thing all<br />

round as they helped to diffuse my anger.<br />

One of my goals was to able to relax and<br />

feel calm so that I could accept treatments<br />

rather than feel resistance, so I started yoga<br />

classes with a friend. It helped me so much<br />

that I still go to yoga now.<br />

After almost a decade of surviving Sandra,<br />

Norman decided to appear in my bowel<br />

in 2016. Norman was equally unwelcome<br />

but this time I felt no anger or surges of<br />

frustration. I did feel that my body had let me<br />

down again but remarkably I accepted the<br />

situation quite quickly. My biggest anxiety<br />

was chemotherapy and I was relieved when<br />

the bowel surgeon and team discovered that I<br />

only needed surgery.<br />

It was a big operation involving removing<br />

part of the rectum and a section of the large<br />

bowel, and my recovery was tough. Perhaps<br />

being ten years older, maybe the enormity of<br />

the operation, or simply expecting too much<br />

of myself. Being able to see what you have<br />

achieved in a day no matter how small can be<br />

comforting, and I learned the value of being<br />

kind to myself.<br />

My biggest comfort, after family and friends,<br />

was humour. I can always see a funny side of<br />

things! I made notes of things that made me<br />

laugh or smile and I also listened to music and<br />

songs that cheered me up. I avoided people<br />

or things that made me feel glum or dragged<br />

my mood down and was quite ruthless at<br />

times, even stopping watching the news and<br />

reading newspapers! I created a fun bubble<br />

and mixed with people who made me feel<br />

good where I could.<br />

Now I am 61yrs old and last year I retired,<br />

partly influenced by my experiences with<br />

Sandra and Norman… I love life and feel there<br />

is so much more to learn and experience. I am<br />

healthy and fit and want to try out new things<br />

so I am because I can!<br />

26 abcdiagnosis.co.uk Support for all affected by Primary and Secondary Breast Cancer<br />

<strong>ABCD</strong> <strong>Book</strong> V2.indd 26 07/04/2020 19:57


FIONA<br />

MORRISON<br />

Getting ‘back to normal’<br />

@marmite<br />

frog27<br />

On Wednesday 14th December<br />

2016, I ran for a train.<br />

Later that evening, I ruefully felt my bruised<br />

and tender chest muscles – that would teach<br />

me to run without a sports bra on I laughed.<br />

I wasn’t laughing a few days later, when I felt a<br />

hard lump on my left breast. I was confident it<br />

was a cyst. That confidence evaporated when<br />

the Dr and nurse doing my ultrasound went<br />

very quiet and explained that they needed to<br />

perform a biopsy.<br />

I was 43, about to turn 44, and had never<br />

regularly checked my breasts – too scared in<br />

case I found something – an irony not lost on<br />

me as I prepared to devote 2017 to the rigid<br />

scheduling of hospital appointments.<br />

The biopsy and subsequent scans<br />

showed I had Her2+ breast cancer. Having<br />

chemotherapy first would give me a better<br />

chance of avoiding a mastectomy.<br />

Everyone has a different experience of<br />

chemotherapy. I was prepared for nausea<br />

but never once felt queasy. I wasn’t prepared<br />

for the loss of my fingernails, the increasing<br />

stiffness in my joints, or months of nose<br />

bleeds. But the hardest thing was the social<br />

isolation as I desperately tried to avoid any<br />

potential source of infection that could<br />

hospitalise me with neutropenic sepsis.<br />

Chemotherapy reduced my tumour and I had<br />

a Wide Local Excision with a Sentinel Node<br />

Biopsy to see if more lymph glands would<br />

need removing. Thankfully they didn’t, and<br />

barring a weeping seroma (pocket of fluid)<br />

and some burst stitches under my arm, I<br />

entered the second half of the year preparing<br />

for radiotherapy.<br />

I was fortunate with my radiotherapy – I<br />

suffered no fatigue – and only minimal skin<br />

discomfort. I actually came to enjoy my daily<br />

routine of driving to the hospital early enough<br />

to find parking, then treating myself to coffee<br />

at the café. The Beatson hospital had gone<br />

from a place that saw me shaking with nerves<br />

as I entered, to a place where I felt very at<br />

home.<br />

Her2+ breast cancer is also treated with a<br />

wonder drug called Herceptin. Her2+ used to<br />

have a poor prognosis and a high rate of early<br />

recurrence – Herceptin has changed – and<br />

that knowledge made my three weekly trips<br />

for a five minute injection all worth while. In<br />

March 2018 I had my final treatment.<br />

“Back to normal!”<br />

people say…<br />

But normal has gone. It took a long time<br />

to get used to being in crowds and social<br />

situations again – it took a long time for<br />

cancer not to be the first thing I thought of in<br />

the morning. I struggled with anxiety about<br />

recurrence and spread. My wonderful breast<br />

care nurse found help and support for me –<br />

and I now count anti-depressants as part of<br />

my treatment for breast cancer.<br />

I still run for trains. When I do I feel the pull of<br />

the surgery sites on my left breast – I feel the<br />

stiffness in my hips – and I feel the breath in<br />

my lungs – and I am thankful.<br />

BREAST CANCER SUPPORT 27<br />

<strong>ABCD</strong> <strong>Book</strong> V2.indd 27 07/04/2020 19:57


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28 abcdiagnosis.co.uk Support for all affected by Primary and natural Secondary • organic Breast • essential Cancer<br />

<strong>ABCD</strong> <strong>Book</strong> V2.indd 28 07/04/2020 19:57


BREAST CANCER SUPPORT 29<br />

<strong>ABCD</strong> <strong>Book</strong> V2.indd 29 07/04/2020 19:57


Radiotherapy<br />

TREATMENT for<br />

Breast Cancer<br />

Radiotherapy is a treatment for cancers,<br />

using X-rays, or electrons directed at the<br />

cancer to destroy its DNA and kill it.<br />

It is a targeted form of treatment and is<br />

one of the most successful forms of anticancer<br />

treatment.<br />

It is used in breast cancers to reduce the risk of<br />

relapse within the breast/chest wall after surgery<br />

for early-stage disease (adjuvant treatment) or to<br />

control the symptoms of more advanced disease<br />

(palliative treatment).<br />

Adjuvant radiotherapy is almost always required<br />

after breast conserving surgery. Treatment is<br />

delivered either to the entire breast or to part of<br />

it depending on your age and stage of the cancer.<br />

Some women may need it to the chest wall after<br />

a mastectomy. Depending on the involvement of<br />

nodes, treatment to the underarm (axilla) or lower<br />

part of the neck (Supraclavicular Fossa or SCF)<br />

may also be necessary.<br />

Standard radiotherapy is delivered every weekday<br />

for 15 sessions (3-weeks). Some women may be<br />

offered an extra 4-5-session ‘boost’ to the part of<br />

the breast from which the cancer was removed.<br />

Each session lasts for 5-10 minutes.<br />

As it is a targeted form of treatment, your<br />

treatment needs to be planned to ensure that it is<br />

delivered to the correct area and also to minimise<br />

radiation to nearby normal organs and tissues. This<br />

requires a CT-scan of the chest and is followed by<br />

placing 2-3 small permanent tattoos, which help<br />

correct positioning during each session. Treatment<br />

starts about 1-week after planning.<br />

To minimise the risk to the heart, we may use DIBH<br />

(Deep Inspiration Breath Hold) technique during<br />

planning and treatment for left-sided cancers. Your<br />

radiographer or Clinical Oncologist will explain this<br />

to you if required.<br />

The main side effect of treatment is a skin reaction<br />

similar to sunburn that can last for a few weeks<br />

after treatment but almost always resolves. This is<br />

managed by using moisturisers. Some women feel<br />

tired but most are able to continue life as normal. If<br />

the SCF is treated it may cause a few days of sore<br />

throat. Severe reactions are rare but can be treated.<br />

As a long-term consequence of radiotherapy, the<br />

treated skin can become firm, the breast can shrink,<br />

and the skin can thin and appear paler with visible<br />

small veins. Such changes are usually mild and can<br />

take many months or years to develop. Twinges of<br />

pain, tenderness or odd sensations are common in<br />

the months after treatment and will often disappear<br />

on their own. Rib fractures are very rare.<br />

A small part of the lung just under the ribs can form<br />

a scar tissue after radiotherapy, but it rarely causes<br />

any symptoms. Care is taken to reduce the dose to<br />

the heart for left-sided treatments (see above) but<br />

the dose can never be zero. However, with modern<br />

techniques the risk of damaging the heart is very low.<br />

Like chemotherapy, radiotherapy can increase the<br />

risk of second cancers within the treated area.<br />

This risk is less than 1 in 1000 and the benefit of<br />

treatment far outweighs this. It is estimated that<br />

adjuvant radiotherapy reduces the risk of a relapse<br />

within the breast/chest wall by two-thirds (around<br />

66% reduction in risk).<br />

Palliative radiotherapy is given to control<br />

symptoms such as pain from secondary cancer in<br />

the bones, bleeding from skin lesions or to control<br />

secondary cancer in the lungs.<br />

A highly targeted form of such treatment called<br />

SBRT (Stereotactic Body Radiotherapy) may be<br />

suitable for some patients with a small number<br />

to secondary cancers and there is some evidence<br />

that this may be better than standard palliative<br />

treatment. Your clinical oncologist will discuss the<br />

appropriate treatment with you.<br />

30 abcdiagnosis.co.uk Support for all affected by Primary and Secondary Breast Cancer<br />

<strong>ABCD</strong> <strong>Book</strong> V2.indd 30 07/04/2020 19:58


@sarah<br />

coombes79<br />

SARAH<br />

COOMBES<br />

MY POST MASTECTOMY JOURNEY<br />

I was 35 when I was diagnosed with invasive cancer<br />

in my right breast in December 2014. I was offered<br />

reconstruction but knew immediately that this was<br />

not for me. My surgeon showed me reconstruction<br />

photos, encouraged me to hold silicone implants,<br />

explained how safe and durable they were, and also<br />

discussed options to increase and/or lift my left<br />

breast at the same time. Instead, I requested that<br />

my left breast be removed too so that I could be<br />

symmetrically flat. Hearing what I wanted, the breast<br />

care nurse warned that I wouldn’t be able to find<br />

“nice clothes”…<br />

My team’s views on living flat bothered me so<br />

much, that two weeks later, just before my double<br />

mastectomy, I set up my website<br />

www.flatterfashion.co.uk so no other woman would<br />

think that she should be ashamed of her body simply<br />

because she doesn’t have two breasts.<br />

My website is all about sharing tips to help women<br />

develop confidence to try on new things, and not<br />

feel that they should cover themselves up and hide<br />

who they are. Finding clothes to feel confident in can<br />

play a huge part in accepting your new body after<br />

cancer treatment. I actually prefer being flat, and I<br />

love experimenting with different styles that I would<br />

never have worn before my mastectomy.<br />

The website also features seasonal fashion blogs<br />

with tips and photos from members of the Flat<br />

Friends UK closed Facebook group. Contributions<br />

come from ladies of different sizes and include styles<br />

modelled by women who have had both single and<br />

double mastectomies, some of whom also wear<br />

prostheses.<br />

I have been a trustee of Flat Friends UK since it<br />

became a registered charity in 2016. We support<br />

women who have had<br />

a single or double<br />

mastectomy and<br />

are living without<br />

reconstruction, or are<br />

facing that decision.<br />

To add movement and<br />

volume look for:<br />

• A-Line tops and swing dresses<br />

which flare gently from the chest<br />

• Bubble hem tops, or dresses<br />

with elasticated waistbands<br />

• Off-the-shoulder, halter-necks<br />

and boat-necks all add width<br />

across the chest<br />

• Avoid darts and princess seams<br />

where you are flat as they may<br />

not hang properly.<br />

Floaty fabrics such as crepe, chiffon<br />

and light cotton create movement;<br />

jersey drapes and gathers to create<br />

shape; lace and embroidered<br />

layers add interest, and textured<br />

knits add depth. Layer contrasting<br />

textures and colours to add depth<br />

and shape.<br />

Extra features which suit<br />

a flat chest include:<br />

• Double breast pockets (or single<br />

on your flat side)<br />

• Gathered or cowl necklines<br />

• Frills and pussy bows<br />

• Pleats and pin tucks<br />

• Contrasting sleeves<br />

Be proud of your chest!<br />

Decorate it! Look for:<br />

• Patterns to draw the eye around<br />

your outfit<br />

• Contrasting patterns on the bib<br />

or yoke<br />

• Appliquéd designs such as<br />

sequins, gems and beading<br />

• Statement necklaces or long<br />

pendants<br />

• Accessories like bold patterned<br />

scarves<br />

If you have had a single<br />

mastectomy you could<br />

also look out for<br />

asymmetrical designs:<br />

• Pleats, draping or frills from one<br />

shoulder<br />

• Contrasting panels/bold patterns<br />

to decorate your flat side<br />

BREAST CANCER SUPPORT 31<br />

<strong>ABCD</strong> <strong>Book</strong> V2.indd 31 07/04/2020 19:58


EXERCISE AND<br />

MOVEMENT<br />

Physiotherapy after surgery is important - it is clear<br />

that people who have attended to some movement<br />

most days, are better off than those who haven’t.<br />

Whilst working in a breast surgery and<br />

reconstruction team*, I was fortunate to work with<br />

people from diagnosis through to many decades<br />

post-surgery. It was clear that people who had<br />

attended to some movement most days, were<br />

better off than those who hadn’t. Even decades<br />

later, having had a daily deliberate stretch/move<br />

appeared to make a difference, both to the range<br />

of movement and the quality. Increasingly there is<br />

research showing the benefit of exercise.<br />

Perhaps you saw a physio before your surgery, or<br />

afterwards to check how you were moving before<br />

surgery and after. The information you are given by<br />

your team is likely to be relevant for your operation,<br />

how it went and what is considered best practice<br />

at the time.<br />

The exercises in the post-op leaflets will often<br />

include things like lifting your arm up or out to the<br />

side, but as time passes and there are no surgical<br />

restrictions on what you do, other movements my<br />

be useful, too.<br />

Nature is full of spirals and that includes our bodies.<br />

The way we move, the way muscles are. Watch<br />

children rolling and crawling, people stretch as they<br />

yawn and reach their arms up joyfully, cats rolling<br />

and stretching, animals rubbing themselves on<br />

posts in fields – stretching in spirals can feel great<br />

when our tissues are free, hydrated and extensible.<br />

You know better than I how radiotherapy and<br />

surgery can affect how the body feels and moves,<br />

so if things feel stuck or tight, you may need some<br />

specialist hands on work with someone confident<br />

and competent to work with you after treatment.<br />

*During this time, I kept data for everyone and it<br />

appeared that there were 5 factors seeming to<br />

indicate someone might be more likely to need<br />

“hands on” treatment to optimise their recovery<br />

after surgery and/or radiotherapy:<br />

• More than one episode of surgery<br />

• Wounds which were slow to heal or<br />

became infected<br />

• Any axillary node surgery<br />

• Reconstruction using a body part<br />

• Radiotherapy<br />

• (I also work with people with cording<br />

after chemo, which isn’t included here)<br />

One to one advice is likely to be the best, but I<br />

would encourage you to find activities, exercises,<br />

movements which give you pleasure, confidence<br />

and perhaps delight in your precious body – the<br />

place where you live and experience the world.<br />

Chose something you enjoy – and do it! Build up<br />

your activities incrementally and “listen” to your<br />

body – which may feel different every day. People<br />

often ask me, “how many,” or “how long?” Quality<br />

rather than quantity – but as you regain your<br />

fitness, you’ll get both!<br />

Take heed of the advice re avoiding lymphoedema,<br />

but try not to worry about it. Being proactive and<br />

having knowledge helps. Importantly, remember<br />

that thorough healing is a goal and not a race.<br />

If cure has not been possible for you, moving and<br />

exercising can still be valuable to avoid stiffness,<br />

to optimise breathing, bowel function and skin<br />

integrity. “Fit” muscle metabolises oxygen more<br />

efficiently than “unfit” muscle.<br />

Please feel free to make enquiries or share<br />

information to enrich my understanding.<br />

Leah Dalby MCSP<br />

Physiotherapist | LUNE VALLEY PHYSIOTHERAPY<br />

www.leahthephysio.co.uk<br />

32 abcdiagnosis.co.uk Support for all affected by Primary and Secondary Breast Cancer<br />

<strong>ABCD</strong> <strong>Book</strong> V2.indd 32 07/04/2020 19:58


Fast forward a week and I was sitting with<br />

my husband in the ‘Bad News Room’ at<br />

our local hospital’s Breast Clinic. I’d had an<br />

examination, mammogram, ultrasound and<br />

biopsy before being told “I’m sorry Victoria<br />

but it’s cancer”. The world stood still.<br />

Mum to two small boys, aged two and four,<br />

my full focus was on staying alive for them.<br />

I was utterly terrified. I asked the medical<br />

team to throw everything they could at me.<br />

Surgery, chemotherapy, radiotherapy and<br />

hormone therapy followed.<br />

I was surrounded by people who loved me,<br />

who wanted to help me but I’d suddenly<br />

been thrown onto a different track to<br />

everybody else. I needed to find people my<br />

own age who’d also had a breast cancer<br />

diagnosis. I was the odd one out at the<br />

hospital, a generation or more younger<br />

than everyone else. I was also the odd<br />

one out at the school gate; the mum with<br />

cancer.<br />

In 2012 I set up The Younger Breast<br />

Cancer Network UK to help connect<br />

younger women with breast cancer. This<br />

disease hits young women at the busiest<br />

time of their lives, when they’re going<br />

full throttle with careers, raising young<br />

families, pregnant or maybe dreaming<br />

of motherhood. When they are dating,<br />

forming and nurturing relationships. We<br />

need to talk about fertility, pregnancy,<br />

dealing with young children. About<br />

careers, dating, new relationships, early<br />

menopause and suddenly facing our own<br />

VICTORIA<br />

YATES<br />

Younger Breast Cancer Network UK<br />

On a Saturday evening in March 2010 I went<br />

to bed early to escape Match of The Day<br />

on the telly. I check my breasts regularly<br />

but that night, for the first time, at age 36, I<br />

found a lump.<br />

mortality. We need to talk to other women<br />

going through the same things.<br />

YBCN is based on Facebook, because<br />

it’s free to use. We aren’t a charity, our<br />

budget is zero, it’s all totally voluntary. Our<br />

structure includes various private groups<br />

depending on stage of treatment, stage of<br />

disease, and special interest groups such<br />

as fertility, research and regional groups.<br />

Only members can see posts.<br />

We have strict community guidelines and<br />

a fabulous, dedicated team of volunteers<br />

from within the membership, who join<br />

members, moderate posts and keep<br />

YBCN on track. It’s a difficult job for our<br />

admin team. We see the freshly diagnosed<br />

women, we see women feeling that<br />

their dreams of being a mum have been<br />

crushed, we go through their treatments<br />

with them, reliving our own time and<br />

again, and we see the torment of friends<br />

diagnosed with Stage IV cancer. We join<br />

members to our End of Life group so they<br />

have somewhere safe to talk. Hardest of<br />

all, we protect our members’ privacy by<br />

removing their accounts when they die.<br />

Peer support is incredibly important,<br />

providing comfort, information,<br />

understanding and community.<br />

I am extremely proud of YBCN, of our<br />

admins, of our members and of how we<br />

have helped thousands of young women<br />

who would otherwise have felt isolated and<br />

alone when they most needed friends.<br />

@YBCN_UK<br />

BREAST CANCER SUPPORT 33<br />

<strong>ABCD</strong> <strong>Book</strong> V2.indd 33 07/04/2020 19:58


Offering free pre-paid sim cards<br />

for people living with cancer<br />

30 #HNCCONF2019<br />

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By Professor Trish<br />

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From Both Ends of the<br />

Stethoscope: Getting<br />

through breast cancer—<br />

by a doctor who knows<br />

By Kathleen Thompson<br />

Ticking<br />

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Cancer<br />

By Sara<br />

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An innovative post surgical<br />

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Get your FREE copy head to<br />

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eat-well-during-cancer<br />

34 abcdiagnosis.co.uk Support for all affected by Primary and Secondary Breast Cancer<br />

<strong>ABCD</strong> <strong>Book</strong> V2.indd 34 07/04/2020 19:58


@????<br />

Jo<br />

NOBLE<br />

One morning in early<br />

October 2016 it crossed<br />

my mind that the weird<br />

lump I’d noticed under<br />

my arm might be a little<br />

bit bigger than the last<br />

time I had noticed it.<br />

I was 38, had two kids, a husband and a very<br />

demanding dog… With such a hectic family life it<br />

was amazing I noticed it at all!<br />

Naturally, not being on my boob, I had absolutely<br />

no inclination to think it was anything other than<br />

a weird lump under my arm. I had a cursory feel<br />

around, but my ‘assets’ were rather large and<br />

frequently a bit lumpy. Nothing felt new, nothing<br />

felt unusual…<br />

One appointment with my GP later and I was<br />

given ten days of antibiotics for an infected ingrowing<br />

hair. If the lump was still there after I’d<br />

finished the course then I should go back again. I left<br />

that doctors surgery knowing that the lump wasn’t<br />

an infection and that antibiotics wouldn’t help.<br />

When I returned to the doctors I was referred<br />

to the Breast Unit at my local hospital. The<br />

appointment came through within the week, and<br />

before I knew it, I was sat in the waiting room full<br />

of people looking just as terrified as I did. When<br />

I visit that waiting room now I always try to look<br />

at the other ladies and smile, just to let them<br />

know I’ve been where they are, and they can get<br />

through it!<br />

At the beginning of November, less than three<br />

weeks from my first doctors appointment I heard<br />

the four words that change your life ‘you have<br />

breast cancer’. Two weeks later I was given the full<br />

results of the scan, biopsies and blood tests. I had<br />

stage three Triple Negative breast cancer, with the<br />

initial tumour having spread to my lymph nodes<br />

affecting 17 of 21 located under my arm.<br />

Around 14 days after diagnosis, in early December<br />

2016, I had a right mastectomy and lymph node<br />

removal and began the next step in my treatment<br />

plan – FEC-T chemotherapy.<br />

Chemo is just as you would imagine – pretty awful!<br />

However, its totally do-able. When times got<br />

tough and the pain and nausea became too much,<br />

there was a voice in the back of my head that said<br />

‘this wont last forever, you WILL feel better’ and it<br />

was right, I did.<br />

After finishing six rounds of chemo I moved on<br />

to radiotherapy to thoroughly nuke the original<br />

site and I was rewarded with a lovely sun burn<br />

on my neck. Follow the instructions from the<br />

radiographers and make sure you moisturise!<br />

Right now I’m waiting for my next surgery. I have<br />

a risk reducing mastectomy and reconstruction<br />

scheduled thanks to my faulty BRCA gene!<br />

After all of my active treatment finished I found<br />

re-entry in to this new normal the most difficult<br />

part of the ‘journey’. Make sure you have someone<br />

to talk to, and make use of any support groups,<br />

be them digital or real life! More often than not<br />

someone there has been through what you going<br />

through and can lend a shoulder to cry on and an<br />

ear to listen when you need it.<br />

I am now two years down the line,<br />

feeling brighter and happy to still be<br />

here. I’m not naive enough to think that<br />

I am done with cancer, but I’ll be sure to<br />

keep an eye out for any trigger signs and<br />

symptoms and do all I can to make sure it<br />

stays away for as long as possible!<br />

BREAST CANCER SUPPORT 35<br />

<strong>ABCD</strong> <strong>Book</strong> V2.indd 35 07/04/2020 19:58


EMMA<br />

ROBERTSON<br />

The show must go on<br />

@little_emmabird<br />

Battered and bruised and shell-shocked<br />

after multiple biopsies, I messaged my<br />

boyfriend while he was with Mumford and<br />

Sons in America to tell him I’d just been<br />

diagnosed with breast cancer.<br />

I was 31, it was 2013, and my boyfriend<br />

and I had decided we liked our friends<br />

new baby so much that we would stop<br />

trying not to make our own. We lived on a<br />

little Narrowboat in London and finances<br />

had been tight but he’d just gotten some<br />

session work with a band called Mumford<br />

and Sons. He was being paid really well<br />

for touring the world playing viola in their<br />

string section and I was hopeful that life<br />

was getting easier. But 2013 didn’t really<br />

get easier.<br />

I messaged my boyfriend while he was<br />

with the band in America to tell him I’d just<br />

been diagnosed with breast cancer. I flew<br />

out to meet him for a week in New York,<br />

just days after my diagnosis. Bandaged<br />

and sore from multiple biopsies. Battered<br />

and bruised and shell-shocked.<br />

Primary treatment was a whirlwind of<br />

IVF, cytotoxic drugs, ridiculous hospital<br />

administrative mistakes, surgeries, and<br />

radiation. Life didn’t stop and amongst<br />

all of this my Grandma was unwell with<br />

dementia, my sister got married, Mike<br />

(my boyfriend) headlined Glastonbury on<br />

the Main Stage with the Mumford lads,<br />

I worked as much as I could between<br />

treatments because I wasn’t entitled to sick<br />

pay or holiday pay, and sadly, towards the<br />

end of the year, my Grandma died. When I<br />

sat next to her bed and told her how much<br />

we were going to miss her, she asked me<br />

when I’d cut all my hair off.<br />

My cancer was mixed ductal and lobular<br />

and because that was unusual for my<br />

age I was eligible for genetic testing that<br />

showed nothing out of the ordinary. I was<br />

ER/PR+ but HER2- and my team were<br />

confident that my treatment had been a<br />

complete success so Tamoxifen was just a<br />

precaution. It was a big shock to everyone<br />

when I was back in the hospital for scan<br />

results at the beginning of 2015 to be told<br />

that the cancer had spread, was now in<br />

my lungs, liver, and bones, and couldn’t be<br />

cured.<br />

My Oncologist was really clear from this<br />

point that my treatment was palliative. I<br />

was put on an oral chemotherapy called<br />

Capecitabine that worked well until my<br />

pleural effusion increased and had to be<br />

drained, revealing that the liquid was full of<br />

cancer cells. Weekly IV Paclitaxel followed,<br />

which again worked it’s magic so that I<br />

could return to a “new normal”.<br />

I am currently stable on a combination<br />

of Letrozole (an endocrine therapy) and<br />

Palbociclib (a CDK4/6 inhibitor) and<br />

hope that I can stay on this therapy line<br />

for a long time. Under NICE guidelines I<br />

wouldn’t meet the eligibility criteria for this<br />

treatment.<br />

It’s a difficult world to inhabit and I am<br />

very aware that my Oncologist won’t be<br />

able to keep blithely insisting that there<br />

are still “lots of options” for my continuing<br />

treatment.<br />

At some point the doctors will say<br />

that there is nothing more they<br />

can do to help me.<br />

36 abcdiagnosis.co.uk Support for all affected by Primary and Secondary Breast Cancer<br />

<strong>ABCD</strong> <strong>Book</strong> V2.indd 36 07/04/2020 19:58


Shazia<br />

Calvert<br />

Davies<br />

My cancer story began on an icy<br />

tennis court in February 2018. I’d<br />

been ignoring a lump for a couple<br />

of weeks. It was painless, hard<br />

and alarmingly large. I played<br />

competent tennis that day and<br />

returned home with a spring<br />

in my step. By 4pm I had been<br />

diagnosed with breast cancer.<br />

The tremors of cancer run through your entire<br />

tribe of people. To me it seemed as though the<br />

terror ran through everyone but me. I had a<br />

mission to beat it. A mission to spare loved ones’<br />

pain. A mission to smile through it.<br />

The smiles weakened as the following week,<br />

my diagnosis worsened. I had Grade 3, Invasive<br />

Ductal Carcinoma, and it was ‘triple negative’.<br />

This cancer tests negative for oestrogen,<br />

progesterone and HER-2. Worse, it was already in<br />

my lymph nodes.<br />

The only treatment plan for this type of cancer was<br />

to match its aggression. Poison, cut, burn, poison.<br />

First, there were 5 months of intense weekly<br />

chemo. Then, there would be a mastectomy with<br />

potential lymph node clearance to remove what<br />

was left. This would be followed by radiotherapy<br />

and then oral chemo to take out any microscopic<br />

remnants.<br />

I had my first chemo on March 6, 2018 after<br />

surgery to insert a port in my chest. Unfortunately<br />

I was hospitalised with a severe GI reaction to the<br />

chemo for six days. I was only home for three days<br />

before the tremors began and my temperature<br />

started to soar. Pain relief and high doses of<br />

antibiotics weren’t derailing neutropenic sepsis.<br />

At last, just before they were going to transfer me<br />

to ICU I started to respond.<br />

The issues didn’t cease after sepsis. I had a severe<br />

allergic reaction to my Plan B chemo drug. So<br />

we moved on to Plan C… Miraculously, my body<br />

accepted this treatment and though physically I<br />

had taken a battering, I remained mentally robust.<br />

This manifested in my writing a blog about the<br />

surprising humour with which I chose to see my<br />

journey ‘Breast Cancer Smiles’.<br />

Before I knew it, I was lying on a gurney staring<br />

at my anaesthetist prior to a mastectomy and<br />

reconstruction. And there was yet more bad<br />

news… Though the cancer had retreated it was<br />

still present. They found two more lymph nodes<br />

in surgery and had to do an axillary clearance. I<br />

had just become high risk for a recurrence.<br />

It was barely 6 weeks before I embarked on<br />

radiotherapy. Physiotherapy helped force my arm<br />

to reach the stirrups for treatment. Nothing had<br />

gone to plan so far and it wasn’t about to change<br />

now. I had a ‘moderately severe’ reaction.<br />

This culminated in a great deal of swelling and<br />

pain. Nerve pain also persisted. As my reaction<br />

started to die down, I began oral chemo in<br />

February 2019. This treatment ended in June<br />

though no one will say I’m cancer free yet. For<br />

that diagnosis, I continue to play the waiting<br />

game.<br />

BREAST CANCER SUPPORT 37<br />

<strong>ABCD</strong> <strong>Book</strong> V2.indd 37 07/04/2020 19:58


(BC<br />

Related Lymphoedema<br />

Breast Cancer<br />

What is lymphoedema?<br />

Lymphoedema is a chronic, long-term swelling that can<br />

affect any part of the body, although it is commonly seen<br />

in an arm or a leg following treatment for cancer.<br />

The lymphatic system plays a very important part in the<br />

way that the body functions, for two reasons:<br />

• It helps to drain away fluid, proteins and waste<br />

from the tissues.<br />

• It is part of the body’s immune defence system<br />

against infection.<br />

Lymphoedema can develop when the lymphatic<br />

drainage system is unable to work effectively because<br />

it has become damaged, overloaded or its function has<br />

been impaired.<br />

Why does IT DEVELOP?<br />

Surgery and/or radiotherapy treatment to areas of<br />

the body where there are lymph nodes (e.g. for the<br />

successful treatment of breast cancer) is a common<br />

reason for the onset of lymphoedema. Such<br />

damage to the lymphatic drainage system can result<br />

in an increase of fluid accumulating in the tissues<br />

(arm/breast).<br />

Swelling will develop when the lymph vessels cannot<br />

keep up with the extra demands on their drainage<br />

capacity. Swelling most frequently develops in the<br />

arm and/or hand but can also develop in the breast<br />

tissue or on the chest wall or back.<br />

Incidence of BCRL:<br />

80%<br />

of women<br />

NEVER develop<br />

BCRL<br />

HOWEVER<br />

Around<br />

21.4%<br />

breast cancer<br />

patients<br />

will develop<br />

lymphoedema<br />

at some point<br />

In the early stages, the arm can begin to feel heavy<br />

and uncomfortable without the presence of visible<br />

swelling. Once swelling does develop, it can be soft<br />

to the touch and may come and go – especially<br />

overnight when the arm is partly elevated. Over<br />

time, if not treated, the swelling can become a more<br />

constant feature and the normal architecture of the<br />

limb (visible tendons, veins, knuckles, etc.) become<br />

less noticeable. With time the tissues under the<br />

skin may start to feel firmer and thickened and the<br />

skin can become dry. The arm may feel increasingly<br />

heavy and uncomfortable and normal function<br />

and range of movement of the arm may become<br />

affected if the swelling progresses.<br />

Around<br />

18.9%<br />

of patients<br />

will develop<br />

it within 2<br />

years of<br />

treatment<br />

Around<br />

5.6%<br />

of patients<br />

undergoing<br />

sentinel node<br />

biopsy (SNB)<br />

will develop<br />

lymphoedema<br />

Around<br />

20%<br />

of patients<br />

develop<br />

lymphoedema<br />

after axillary<br />

node clearance<br />

(ANC)<br />

even after axillary node<br />

clearance and radiotherapy.<br />

BCRL can often take months/years to develop. ALWAYS remain<br />

vigilant and report any early signs/symptoms promptly.<br />

38 abcdiagnosis.co.uk Support for all affected by Primary and Secondary Breast Cancer<br />

<strong>ABCD</strong> <strong>Book</strong> V2.indd 38 07/04/2020 19:58


CRL)<br />

What is the treatment for BCRL?<br />

Although the damage to the lymphatic drainage system cannot be reversed, the<br />

swelling can be reduced and controlled effectively, especially if treatment is started as<br />

soon as it becomes noticeable. The treatment programme is made up of a number of<br />

physical therapies. These include the following:<br />

SKIN CARE CELLULITIS EXERCISE<br />

Keeping the skin well moisturised<br />

and in good condition is an<br />

important part of managing<br />

lymphoedema and can help<br />

prevent infection (cellulitis)<br />

from developing. It is important,<br />

therefore, that you:<br />

• Wash the skin each day<br />

• Try to avoid scratches, cuts<br />

or bites<br />

• Take care when cutting nails.<br />

Don’t pull back the cuticles.<br />

• Avoid direct sunlight<br />

• Use an electric shaver rather<br />

than a wet shaver<br />

An infection usually caused by<br />

bacteria entering the skin through<br />

a cut or break in the skin. It is<br />

characterised by general ’flu’-like<br />

symptoms (with or without nausea<br />

and vomiting), inflammation of the<br />

skin (redness), swelling and heat in<br />

the area of lymphoedema which<br />

then becomes painful and tender.<br />

If cellulitis does occur, it is vital that<br />

you contact your GP as soon as<br />

possible. Prompt intervention with<br />

appropriate antibiotics for at least 2<br />

weeks is required.<br />

Appropriate exercise and relaxation<br />

play a very important role in<br />

keeping healthy, regulating body<br />

weight and also in keeping your<br />

lymphoedema under control.<br />

Exercise also helps to maintain<br />

good posture and balance and to<br />

keep joints/muscles as flexible as<br />

possible. Swimming, Pilates, Yoga<br />

and T’ai Chi are beneficial forms<br />

of controlled exercise that will<br />

help not only your arm, but also<br />

your physical well-being. Exercise<br />

is vital - but has to be introduced<br />

gradually.<br />

HEALTHY EATING<br />

A healthy eating programme<br />

should also be followed to help<br />

ensure your Body Mass Index<br />

(BMI) is kept within normal limits.<br />

Research has demonstrated that<br />

breast cancer survivors with a<br />

high BMI are more susceptible<br />

to lymphoedema so adopting<br />

a healthy eating regimen<br />

(following the NHS guidelines) is<br />

recommended.<br />

If you are experiencing problems<br />

with your body weight, ask to be<br />

referred to a dietician for specific<br />

help/advice.<br />

MANUAL LYMPHATIC<br />

DRAINAGE (MLD)<br />

MLD is a gentle and specialised<br />

form of skin massage, carried<br />

out by fully trained practitioners.<br />

It consists of light, rhythmical,<br />

pumping hand movements to<br />

stretch the skin and to encourage<br />

lymph fluid to drain. The aim<br />

of MLD is to help stimulate and<br />

improve normal drainage in healthy<br />

areas of the body so that fluid can<br />

drain away from swollen/congested<br />

areas much more easily. MLD can<br />

also help to reduce pain/discomfort<br />

as well as improve the hard, firm<br />

tissues that can be problematic in<br />

advanced lymphoedema.<br />

COMPRESSION THERAPY<br />

compression therapy depends<br />

upon the severity, extent and<br />

nature of the swelling.<br />

In severe cases, for example when<br />

your arm is very large or uneven<br />

in shape, a course of compression<br />

bandaging may be advised.<br />

For arms that are less swollen<br />

and have retained their normal<br />

shape, an elastic compression<br />

sleeve/garment may be advised.<br />

These are medical, graduated<br />

compression garments, especially<br />

designed to help reduce your<br />

swelling and keep it under<br />

control.<br />

National charity Lymphoedema Support Network (LSN)<br />

has advice and helpful information - set up by patients<br />

to help patients.<br />

www.lymphoedema.org<br />

Denise Hardy - Nurse Consultant (KLC),<br />

BJN Chronic Oedema Nurse of the Year 2019<br />

BREAST CANCER SUPPORT 39<br />

<strong>ABCD</strong> <strong>Book</strong> V2.indd 39 07/04/2020 19:58


Lesley<br />

Stephen<br />

@Lesleyc<br />

Stephen<br />

My life of medical<br />

treatment, tests and trials<br />

I’m a 53 year old mother of<br />

4 children living in Edinburgh.<br />

In early 2014 I was working as a freelance<br />

communications consultant, feeling rather<br />

stressed with all the plates I had to keep<br />

spinning. I had a cough that wouldn’t go<br />

away and at times felt very short of breath.<br />

I finally made time to visit my GP, assuming<br />

I had a nasty chest infection. The chest xray<br />

showed up lesions on my lungs and that’s<br />

when I started to worry.<br />

An urgent CT scan and further tests<br />

revealed that I had stage 4 Her2+ breast<br />

cancer which had already spread to my<br />

liver, lungs and bones. I was “incurable<br />

but treatable” and my life expectancy was<br />

now measured in months not years. The<br />

consultant had a rather weary hangdog<br />

expression when he broke the news; the<br />

nurse was in tears and held my hand across<br />

the table.<br />

The primary tumours in my breast couldn’t<br />

be seen or felt – I hadn’t ‘missed’ anything,<br />

just been extremely unlucky. I used to joke<br />

that my cancer had moved faster than Usain<br />

Bolt on a good day, but really the shock at<br />

being told, out of the blue, that you have<br />

incurable cancer and that you wont see your<br />

children grow up is unimaginable.<br />

Life became dominated by medical<br />

appointments, scans and tests. My first year<br />

of treatment was spent enduring 12 cycles<br />

of brutal chemotherapy. It made a good<br />

job of reducing the cancer to a few small<br />

dark places in my lungs and I stayed on a<br />

maintenance drug called Herceptin.<br />

The following year whilst being scanned for<br />

a clinical trial three small brain mets were<br />

discovered. I had Whole Brain Radiotherapy<br />

which has left me with long term memory<br />

problems but the brain mets disappeared,<br />

and luckily they have stayed away. I went<br />

onto a new oral chemo, Capecitabine, which<br />

didn’t work.<br />

I then self funded a drug called Kadcyla<br />

which wasn’t available in Scotland, but that<br />

also didn’t work. At that point my consultant<br />

warned us to ‘get my affairs in order”, and I<br />

went with the family to New York for what<br />

I thought would be a last holiday together<br />

because I was out of standard options.<br />

I had always asked my consultant about<br />

clinical trials, and on my return from New<br />

York, to my surprise he offered me either<br />

chemo or the last place on a small Phase 1<br />

trial in Glasgow. I had nothing to lose and<br />

chose the latter – that was 3.5 years ago<br />

and I am still on that miracle trial, with a<br />

very good quality of life.<br />

I could go on forever about what cancer<br />

has taken from me – my work; my hair<br />

(twice); my confidence; my friends; my<br />

immune system; and most of all, my future.<br />

I will be on treatment for the rest of my<br />

life, and live in three month gulps of time,<br />

cramming ‘family memories’ into the<br />

anxious times between scans while I’m<br />

still well.<br />

40 abcdiagnosis.co.uk Support for all affected by Primary and Secondary Breast Cancer<br />

<strong>ABCD</strong> <strong>Book</strong> V2.indd 40 07/04/2020 19:58


Basic Discovery Breast<br />

Cancer Research<br />

Rob Clarke, Professor of Breast Biology<br />

and Director of Manchester Breast Centre<br />

Basic research has 2 basic aims:<br />

1<br />

To make discoveries about the origins<br />

of breast cancer, to understand normal<br />

development of the breast, its regulation<br />

by hormones and the effects of an<br />

individual’s genetic makeup;<br />

2<br />

To discover the factors regulating breast<br />

cancer growth and its spread during<br />

metastasis to improve current therapies.<br />

For example, current research is helping<br />

identify who is at risk of breast cancer by<br />

the discovery of multiple genes conferring<br />

small increases in risk. When these genes<br />

are analysed in their hundreds, they are<br />

powerful predictors and enable stratification<br />

of who may develop breast cancer and who<br />

is at very little risk of doing so. This will<br />

enable better screening for early detection<br />

targeted to those at risk and in addition,<br />

new treatments for at risk women will be<br />

introduced to prevent the development of<br />

breast cancer.<br />

Discoveries of changes in the mutated genes<br />

that drive breast cancers during treatments<br />

and after metastatic spread will enable us to<br />

personalise treatments to individual patients.<br />

There is also a push to understand the<br />

factors that promote metastatic spread to<br />

different sites in the body.<br />

Understanding the ‘microenvironment’ of<br />

each tissue site and how breast cancer<br />

interacts and communicates with the tissue<br />

will enable treatments that prevent and treat<br />

secondary breast cancer in these new sites.<br />

Both these strands of research will lead to<br />

many new trials in patients in order to rapidly<br />

translate research discoveries to the clinic.<br />

BREAST CANCER SUPPORT 41<br />

<strong>ABCD</strong> <strong>Book</strong> V2.indd 41 07/04/2020 19:58


JULIA<br />

BRADFORD<br />

@jlizb8700<br />

I’m not a cancer victim or an inspiration.<br />

I got sick and survived treatment.<br />

I AM a sister, aunt, godmother, daughter<br />

and friend. I’m a fifty something film lover,<br />

enthusiastic volunteer and job seeker. A red<br />

lipstick hoarder, lover of bad jokes, charity<br />

shop clothes and chocolate.<br />

The year I was diagnosed (2012) was<br />

an eventful year mainly focused on my<br />

epilepsy. Medication kept it under control<br />

until it wasn’t. Breakthrough seizures are<br />

overwhelming so I didn’t really notice the<br />

problems in my breast. Finally I saw my GP<br />

and was referred to hospital.<br />

Even so I wasn’t worried. I’d been a breast<br />

clinic patient before. I’d even had a breast<br />

biopsy. It hadn’t been cancer then so why<br />

now?<br />

This time from the first appointment, my<br />

surgeon prepared me for the worst. She was<br />

concerned so I had the biopsy the same<br />

afternoon.<br />

My mum came with me to get the results.<br />

She tried hard to reassure us both. But I<br />

watched as the breast care nurse walked into<br />

the consultant’s office and then my name<br />

was called…<br />

I had surgery, chemo and radiotherapy. The<br />

surgery showed the cancer had spread out<br />

to my lymph nodes. Chemotherapy was then<br />

a certainty. I also had extra scans to see if the<br />

cancer had spread further.<br />

I can’t sugar coat chemo, it was tough<br />

at times. Midway through I developed<br />

pneumonia and that meant a long hospital<br />

stay. Huge quantities of antibiotics and the<br />

skills of my medical team saved my life.<br />

When I was well enough, I had to grit my<br />

teeth to start chemo again. The fear of being<br />

ill plus the side effects were overwhelming.<br />

Sheer relief had me crying all the way<br />

through the final treatment.<br />

Radiotherapy by comparison, despite skin<br />

breaks and soreness, was easier. However,<br />

I immediately developed breast and arm<br />

Lymphoedema because of the radiotherapy.<br />

Coming to terms with that was very hard.<br />

The NHS gets much right but it’s not perfect<br />

in it’s performance of ordinary every day<br />

miracles. A vast army of people treated me,<br />

I will just say thank you. I never want to see<br />

them again.<br />

I have so many friends now who’ve had<br />

treatment and many who live with cancer. I’m<br />

grateful for the women I know, I’m fearful for<br />

the ones who can’t get the treatment they<br />

need. It’s not over when it’s over.<br />

Last year I was discharged from the breast<br />

clinic. It felt good. I’ll still see my oncologist<br />

for a while because I took part in a<br />

radiotherapy trial.<br />

I’m a pessimistic optimist. The risk of cancer<br />

coming back remains and I worry about it<br />

but that’s normal. More than anything it feels<br />

as if things are coming full circle.<br />

In 2012, I was having seizures AND I<br />

had cancer. Now my epilepsy might<br />

be in remission and so far my cancer<br />

hasn’t returned. I’ll take it, good<br />

days and bad days, for as long as it<br />

lasts.<br />

42 abcdiagnosis.co.uk Support for all affected by Primary and Secondary Breast Cancer<br />

<strong>ABCD</strong> <strong>Book</strong> V2.indd 42 07/04/2020 19:58


CLINICAL TRIALS<br />

Clinical trials are designed to test new treatment<br />

approaches, usually against the current standard of<br />

care. In breast cancer trials maybe of new drugs or<br />

radiotherapy or surgical interventions but can also<br />

look at quality of life and survivorship interventions<br />

such as exercise, diet or complimentary therapies.<br />

The principles of clinical trial design remain the<br />

same, whatever is being tested. Most importantly<br />

trials should have had both scientific and ethical<br />

review to make sure the design is appropriate and<br />

participants’ health and rights are protected. There<br />

are multiple different trial designs. In some trials all<br />

participants receive the new treatment, eg when a<br />

drug is tested in humans for the first time.<br />

In later stage trials a treatment will often be tested<br />

against the standard of care in a ‘randomised controlled<br />

trial’. Randomisation is the process of assigning<br />

an individual to either the new or standard<br />

treatment and can’t be influenced by your team, it<br />

is determined automatically by a computer. This is<br />

very important as it prevents bias.<br />

If you are invited to take part in a trial the first step<br />

is to discuss the trial with your clinical team and to<br />

be given a Participant Information Sheet (PIS). This<br />

provides a detailed summary of what will happen to<br />

you if you decide to enter the study. If you would<br />

like to enter the study then you will need to sign an<br />

Informed Consent Form (ICF) and then enter a period<br />

known as ‘screening’. This may be very short<br />

but can take 2-4 weeks if additional scans or tests<br />

are required. It is only after the screening tests are<br />

performed that your entry into the trial can be confirmed.<br />

Once in the trial, if you change your mind<br />

and decide that you wish to leave, this is not a problem.<br />

Let the trial team know and you can withdraw<br />

without this influencing your care.<br />

Sacha J Howell FRCP PhD<br />

Senior Lecturer and Honorary Consultant in Medical Oncology<br />

Division of Cancer Sciences<br />

Faculty of Biology, Medicine and Health<br />

The University of Manchester<br />

Oglesby Cancer Research Centre<br />

Manchester, United Kingdom,<br />

M20 4GJ<br />

More details on clinical trials can be<br />

found at Cancer Research UK<br />

www.cancerresearchuk.org/<br />

about-cancer/find-a-clinical-trial<br />

BREAST CANCER SUPPORT 43<br />

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FUNDRAISING<br />

Each year we provide our successful abcd<br />

exercise retreats.<br />

£600 helps support someone on this 2-night, 3-day residential<br />

retreat. We offer this unique experience, which provides<br />

professional support and encouragement during physical<br />

activity. Some patients go on to do their own fundraising to<br />

give back and support others attending the weekend.<br />

No fundraising<br />

idea is a bad<br />

one - get in<br />

touch with all<br />

your ideas.<br />

Any support<br />

is valued by<br />

everyone.<br />

£600<br />

Supports one<br />

person on a 3 day<br />

<strong>ABCD</strong> retreat<br />

We are grateful for ANY donation received as it helps to support patients in addition to the<br />

grants that we apply for. Feel free to talk to me about any ideas you have.<br />

Any support is hugely valued by abcd and by the patients who attend. Your fundraising<br />

helps support people affected by primary and secondary breast cancer.<br />

The one thing we want is for you to have fun whatever you do<br />

gofundme.com/breast-cancer-exercise-retreat<br />

METUP UK<br />

A new advocacy group for people living with secondary breast cancer<br />

metupuk@abcdiagnosis.co.uk @metupukor METUPUK<br />

metupuk.org.uk<br />

44 abcdiagnosis.co.uk Support for all affected by Primary and Secondary Breast Cancer<br />

<strong>ABCD</strong> <strong>Book</strong> V2.indd 44 07/04/2020 19:58


METUPUK Aims and Objectives<br />

We are a patient advocacy group aiming to turn<br />

metastatic breast cancer (MBC) into a chronic illness<br />

and support MBC patients to gain access to the best<br />

medicines to prolong and improve their quality of life.<br />

metupuk.org.uk<br />

We work towards a day when MBC can be cured.<br />

1. AWARENESS AND EDUCATION<br />

• MBC is currently incurable. Highlight the harsh reality of MBC which is not well<br />

reflected in the Pink celebratory marketing of many breast cancer fundraising<br />

campaigns.<br />

• Challenge and educate policy makers, charities and government bodies to ensure<br />

that MBC is a priority for funding, research and innovation.<br />

• Ensure that MBC is represented on all Trusts or Boards of breast cancer organisations<br />

(ideally by Patient advocates being included as Trustees or Board Members).<br />

• Ensure that primary breast cancer patients understand and recognise the symptoms<br />

of MBC so that they can present for diagnosis and treatment earlier thereby<br />

improving their QOL and survival prospects.<br />

2. RESEARCH AND ACCESS TO DRUGS<br />

• Urge life science companies to increase the number of MBC trials in line with the<br />

MBC number of patients and recognise the real potential to extend and save their<br />

lives.<br />

• Work to make breast cancer trials more accessible to MBC.<br />

• Lobby regulatory authorities to speed up the drug approval process for new drug<br />

treatments for MBC.<br />

• Work, with other organisations, to secure broad patient access to new innovative<br />

treatment regimes.<br />

• Capitalise on the Artificial Intelligence revolution and demand that more effort goes<br />

to collect and analyse specific data and statistics for MBC. Use information to better<br />

inform treatment decisions.<br />

3. PATIENT TREATMENT AND CARE<br />

• Support MBC patients in understanding treatment and lifestyle options and how they<br />

can live well with MBC.<br />

• Campaign for an increase in MBC clinical nurse specialists to support UK patients.<br />

• Disseminate research information to increase awareness to MBC patients.<br />

metupuk@abcdiagnosis.co.uk @metupukorg METUPUK<br />

BREAST CANCER SUPPORT 45<br />

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Joanne<br />

Myatt<br />

Busy living with mets<br />

@JoanneMyatt25<br />

Initially diagnosed with Breast Cancer in<br />

2006 aged 30, I was on the cusp of my<br />

career in social work following five years<br />

at University.<br />

Writing up case notes and doing visits<br />

in between chemo sessions, I faced my<br />

treatment regime as something I simply<br />

needed to complete. My cancer was<br />

curable.<br />

I started Tamoxifen, diligently looked after<br />

my health and got on with my life, travelled,<br />

progressed in my career, bought a house<br />

with my boyfriend and found our best<br />

friend Murphy dog… Life was sweet and<br />

I celebrated my 40th birthday in style by<br />

getting married on a Mexico beach.<br />

Things were sometimes fast-paced<br />

and stressful, and I went to my GP with<br />

symptoms such as low mood, chronic<br />

indigestion and sporadic sickness. I had<br />

undergone breast reconstruction in 2009<br />

and any pains I felt were always explained<br />

as scar tissue. In 2016, I had some blood<br />

tests and a scan for possible gallstones.<br />

The results came on Friday night after work<br />

with a life changing phone-call. The GP<br />

wanted to see me immediately. “Extensive<br />

metastases in liver”, “you need a bone<br />

scan”, “secondary breast cancer”… I didn’t<br />

understand what the doctor was saying; I<br />

didn’t know what “metastases” meant. All<br />

my mammograms had been clear. This was<br />

a mistake.<br />

More scans and blood tests confirmed<br />

secondary breast cancer in my liver and<br />

bones. I needed Paclitaxel chemotherapy<br />

immediately to save my life because my<br />

liver was beginning to fail. I felt stupid,<br />

cheated and angry. I had no idea that my<br />

primary breast cancer could one day, 10<br />

years later, appear in another part of body<br />

without warning.<br />

In the absence of specialist secondary<br />

support, I read everything and anything<br />

related to secondary breast cancer. It was<br />

information overload and made me feel like<br />

a rabbit in headlights. I was retired from<br />

the career I had worked so hard for and felt<br />

that I had lost my identity. I felt so alone,<br />

despite my amazing army of supporters,<br />

that I considered taking my own life.<br />

A significant turning point for me was<br />

meeting other young women in the same<br />

situation through Breast Cancer Care. I got<br />

involved in patient advocacy and learned<br />

that the NHS hasn’t been collecting data<br />

consistently across NHS Trusts, which<br />

means the data that treatment pathways<br />

and mortality rates are based on cannot<br />

be accurate. I learned that my experience<br />

of having no specialist support is prevalent<br />

across the UK.<br />

A few months following my own secondary<br />

diagnosis, one of my best friends, who is<br />

the same age as me, was also diagnosed<br />

with Secondary Breast Cancer. This makes<br />

me suspect that secondary breast cancer<br />

is more common than the statistics have us<br />

believe, especially among younger women.<br />

Today, I am ‘busy living with mets’.<br />

Combining conventional treatment<br />

(currently Capecitabine) with a metabolic<br />

approach is affording me some stability<br />

and a good quality of life over3.5 years<br />

after my metastatic diagnosis.<br />

I take one day at a time.<br />

46 abcdiagnosis.co.uk Support for all affected by Primary and Secondary Breast Cancer<br />

<strong>ABCD</strong> <strong>Book</strong> V2.indd 46 07/04/2020 19:58


@julieo25<br />

Waking up with the<br />

memories of a hot,<br />

sweaty gig...<br />

JULIE<br />

OSBORNE<br />

And then the realisation<br />

of a sharp, stabbing<br />

pain. Right side.<br />

Radiating inwards...<br />

I must have pulled a muscle, dancing with<br />

energetic arms. No, I’ve pulled a muscle at<br />

the gym. And then the dawning that this isn’t<br />

a pulled muscle. It’s something else. I don’t<br />

know what, but it doesn’t feel right. I spend<br />

the weekend prodding and poking myself.<br />

No- it’s nothing. Yes- it’s something. I can’t<br />

ignore this.<br />

A day later I’m with my doctor. Dr Bish<br />

takes me seriously and although he is not<br />

sure he can feel anything and I don’t fit the<br />

profile, he refers me to St George’s Hospital.<br />

A week later, having done a circuit of the<br />

unit – fine needle aspiration, ultrasound and<br />

mammogram, I’m sat in front of Sue, the<br />

clinical nurse practitioner. She tells me that it<br />

is cancer so I need to come back tomorrow<br />

for them to explain what happens next.<br />

The next day it’s confirmed that I have<br />

invasive ductal carcinoma. The tumour is<br />

in an awkward place so my consultant, Mr<br />

Sharma is surprised that I found it on my<br />

own. He points skyward and says someone is<br />

looking after you and I send silent thanks to<br />

my Mum.<br />

My treatment plan is straightforward, a<br />

lumpectomy and sentinel node biopsy.<br />

Then they’ll decide whether I should have<br />

radiotherapy and/or chemo. I’ve been given<br />

some phone numbers of other younger<br />

women who have also had treatment and<br />

begin to realise the importance of connecting<br />

with women who are at a similar stage of life<br />

to me. I join in the Breast Cancer Care forums<br />

and visit the Breast Cancer Haven in Fulham.<br />

I go to the BCC Younger Women’s weekend<br />

and get involved with campaigns.<br />

Years later people would think they knew<br />

me because they’d seen a picture of me in<br />

their doctor’s surgery. I did what I could to<br />

get involved in research. I felt I owed that<br />

to those who had gone before me. I also<br />

accessed psychological help because there<br />

was a deep sense of change within me, I saw<br />

it every day when I looked at my body and I<br />

wanted to try to work out who I had become.<br />

The cancer hadn’t spread to my lymph nodes<br />

so I didn’t need chemo, but because I was<br />

strongly oestrogen positive they prescribed<br />

Tamoxifen. Unfortunately, I was one of<br />

the tiny number of women who develop<br />

endometrial cancer. Apparently this is a<br />

more straightforward cancer to treat and the<br />

benefits of taking Tamoxifen outweigh the<br />

negatives. Almost two years after treatment<br />

for this second cancer I’ve reconciled this<br />

and feel the Tamoxifen did probably offer me<br />

some protection.<br />

I’m still under the care of St Georges. I live<br />

a different life now, small things really<br />

don’t matter and experiences far outweigh<br />

material stuff. I am still going to gigs, but<br />

occasionally I need a nice sit down after all<br />

that dancing.<br />

BREAST CANCER SUPPORT 47<br />

<strong>ABCD</strong> <strong>Book</strong> V2.indd 47 07/04/2020 19:58


After treatment finishes and you<br />

are trying to get on with your life,<br />

it is not unusual to have worries<br />

about the cancer coming back. Each<br />

pain or hospital appointment can<br />

set off a train of fearful thoughts<br />

and can make you feel anxious.<br />

This is completely natural and<br />

understandable. Here are some tips<br />

to help you cope:<br />

Ask for information<br />

Moving away from treatment can be<br />

difficult and it is important to allow<br />

yourself time to adjust. It is a challenge to<br />

find a healthy balance between keeping a<br />

watchful eye out for potential symptoms<br />

of recurrence and being able to get on<br />

with your life without excessive worry<br />

getting in the way. Ask your health care<br />

team for information and advice on things<br />

you should look out for and give yourself a<br />

plan to keep to.<br />

Checking myself for<br />

symptoms<br />

What do I need to do?<br />

How often should I do it?<br />

What am I looking out for?<br />

How long should it take?<br />

What should I do if I’m worried about<br />

symptoms in between clinic visits?<br />

Take back control<br />

It may feel like a challenge to take back<br />

control of some aspects of your life after<br />

treatment. It could help to make some<br />

changes to your lifestyle such as adopting<br />

a healthy diet or increasing your physical<br />

activity. If you are returning to work, talk<br />

to your employer about a gradual return.<br />

Gradually begin to make some plans for<br />

yourself such as booking a holiday.<br />

You may want to connect with others<br />

who have also been affected by breast<br />

cancer through a support group or online<br />

forum. Each person’s experience is unique,<br />

but it can help to hear from others who<br />

know what it is like. There may be a group<br />

programme available for people at the end<br />

of treatment and this can help with finding<br />

your transition into life as it is now.<br />

Talk to someone<br />

Talking about your worries to someone<br />

who is a good listener or writing worries<br />

down on paper can make them feel less<br />

overwhelming. When we hear ourselves<br />

express our worries out loud, we are more<br />

able to put them into perspective. We can<br />

ask ourselves, “Is this a problem that I can<br />

do something about or an uncertainty that<br />

may never happen? Am I concentrating<br />

on fears for the future at the expense of<br />

enjoying life in the here and now?”<br />

Talking therapies such as counselling can<br />

help you to talk through your experience<br />

to try and make sense of it all. Talking<br />

to someone you don’t know and in<br />

confidence can be helpful to understand<br />

and process feelings as normal responses<br />

to a difficult situation. Counselling may<br />

be available through your doctor or local<br />

cancer support centre.<br />

Managing Stress<br />

You cannot remove the stress of cancer<br />

completely but there are some things that<br />

you can do to help yourself manage when<br />

you are feeling stressed:<br />

• Exercise is an excellent way to reduce<br />

the impact of stress. It could be any<br />

physical activity – walking, exercise or<br />

dance classes, gardening, housework<br />

etc. Yoga and Nordic Walking have<br />

specific benefits for breast cancer<br />

patients. It helps us to use up some of<br />

that extra adrenaline that comes from<br />

worrying and helping us to feel calm.<br />

• Relaxation and breathing exercises<br />

can help to calm the mind and release<br />

muscle tension.<br />

• Doing an activity that you enjoy can<br />

help you to stay in the present moment<br />

and enjoy life in the now rather<br />

than jumping ahead in your mind to<br />

predicting the future.<br />

• Complementary therapies can help you<br />

relax and feel more in control, but make<br />

sure you are seeing a qualified therapist<br />

who has experience of treating people<br />

with cancer.<br />

Seek help<br />

If you are finding it a struggle and the<br />

worry feels overwhelming, don’t suffer<br />

in silence. If you find yourself constantly<br />

checking for symptoms or excessively<br />

asking others for reassurance or from<br />

searching the internet; if the worry means<br />

you avoid things or it stops you from<br />

making plans, then do talk to your GP or<br />

your health care team about getting some<br />

help. Don’t let your worries stop you from<br />

enjoying your life beyond cancer.<br />

Find out more on the NHS website:<br />

www.nhs.uk/Conditions/stress-anxietydepression/<strong>Pages</strong>/low-mood-stress-anxiety.aspx<br />

Anne Crook<br />

Psycho-oncology, The Christie<br />

NHS Foundation Trust<br />

48 abcdiagnosis.co.uk Support for all affected by Primary and Secondary Breast Cancer<br />

<strong>ABCD</strong> <strong>Book</strong> V2.indd 48 07/04/2020 19:58


DUCTAL AND LOBULAR<br />

breast cancer<br />

Understand the<br />

risks and red flags<br />

Secondary / Metastatic (ductal) Breast Cancer<br />

Also known as metastatic or advanced breast cancer<br />

After primary breast cancer be aware of these RED flags* for secondary breast cancer.<br />

There are 5 main areas that secondary breast cancer can appear.<br />

BRAIN<br />

Frequent headaches, vomiting (first thing in<br />

the am), dizzy, visual disturbance, seizure,<br />

impaired intellectual function, impaired<br />

motor skills, mood swings, balance, fatigue.<br />

Family members and friends may say you<br />

are not your normal self.<br />

BONE<br />

Pain in bones — commonly thigh, arm,<br />

ribs and back. Can be dull ache or sharp<br />

shooting pain. Bone pain with no obvious<br />

cause or trauma. Report any new, unusual<br />

or increasing pain.<br />

LUNG<br />

Sharp pain on breathing in chest and back area,<br />

non productive cough, fatigue, blood clots can<br />

also cause shortness of breath.<br />

LYMPH NODES<br />

Swelling or lumps and pressure in<br />

chest/armpit/neck areas, dry cough.<br />

LIVER<br />

Bloating, affected appetite, weight<br />

loss, fatigue, weak, pain near ribs on<br />

right hand side.<br />

SPINAL CORD COMPRESSION<br />

Rare but more common in breast cancer needs URGENT treatment<br />

Pain or tenderness in middle or top of the back or neck, severe pain in lower back that gets worse<br />

or doesn’t go away, pain in back that is worse when coughing, sneezing or straining, back pain<br />

that’s worse at night, numbness, heaviness, a band of pain around the chest or abdomen or pain<br />

down an arm or leg, changes in sensation, for example pins and needles or electric shock<br />

sensations. Contact your clinical team ASAP if you have these following symptoms - weakness<br />

or difficulty using arms or legs, numbness in the area around the back passage (the saddle area),<br />

not being able to empty the bowel or bladder, problems controlling the bowel or bladder.<br />

Please visit: abcdiagnosis.co.uk<br />

Twitter: @abcdiagnosis<br />

Facebook: facebook.com/abcdiagnosis<br />

*IF THE RED FLAG PROBLEM PERSISTS MORE THAN 3 WEEKS<br />

CONTACT YOUR MEDICAL TEAM DIRECTLY<br />

<strong>ABCD</strong>iagnosis SBS (Ductal) Red Flags Infographic v9. Produced 24/02/2020. Please check website for latest version - www.abcdiagnosis.co.uk/resources/infographics/<br />

Secondary / Metastatic<br />

(lobular) Breast Cancer<br />

Also known as metastatic<br />

or advanced breast cancer<br />

GYNAECOLOGICAL TISSUE<br />

Can be vague and not specific but mimic other cancers or common illnesses-<br />

Abdominal/pelvic pain, uterine/pelvic bleeding, abdominal swelling/bloating and/or a<br />

sense of fluid in the abdomen, hot flushes, leg swelling, bone pain, shortness of breath.<br />

BONE<br />

Pain in bones — commonly thigh, arm, ribs and back. Can be dull ache or sharp<br />

shooting pain. Bone pain with no obvious cause or trauma. Report any new, unusual or<br />

increasing pain.<br />

After primary breast cancer<br />

be aware of these RED flags*<br />

for secondary breast cancer.<br />

There are 3 main areas<br />

that secondary breast<br />

cancer can appear.<br />

*SYMPTOMS CAN MIMIC OTHER<br />

CANCER SO BE AWARE,<br />

IF THE RED FLAG PROBLEM PERSISTS<br />

MORE THAN 3 WEEKS CONTACT<br />

YOUR MEDICAL TEAM DIRECTLY<br />

Please visit: abcdiagnosis.co.uk<br />

Twitter: @abcdiagnosis<br />

Facebook: facebook.com/abcdiagnosis<br />

OTHER SYMPTOMS<br />

LIVER: Bloating, affected<br />

appetite, weight loss,<br />

fatigue, weak, pain near<br />

ribs on right hand side.<br />

LUNG: Sharp pain on<br />

breathing in chest and back<br />

area, non productive cough,<br />

fatigue, blood clots can also<br />

cause shortness of breath.<br />

GASTROINTESTINAL<br />

Can be vague and not specific but mimic other cancers or common illnesses -<br />

difficulty swallowing, abdominal pain, symptoms of a bowel obstruction, feeling full<br />

early when eating, changes to appetite, nausea and/or a sense of fluid in the<br />

abdomen, leg swelling, bone pain, shortness of breath.<br />

SPINAL CORD COMPRESSION<br />

Rare but more common in breast cancer needs URGENT treatment<br />

Pain or tenderness in middle or top of the back or neck, severe pain in lower back<br />

that gets worse or doesn’t go away, pain in back that is worse when coughing,<br />

sneezing or straining, back pain that’s worse at night, numbness, heaviness, a band of<br />

pain around the chest or abdomen or pain down an arm or leg, changes in sensation,<br />

for example pins and needles or electric shock sensations. Contact your clinical<br />

team ASAP if you have these following symptoms - weakness or difficulty using<br />

arms or legs, numbness in the area around the back passage (the saddle area), not<br />

being able to empty the bowel or bladder, problems controlling the bowel or bladder.<br />

BRAIN: Frequent headaches, impaired motor skills,<br />

vomiting (first thing in the am), dizzy, visual disturbance,<br />

seizure, impaired intellectual function, mood swings,<br />

balance, fatigue. Family members and friends may say<br />

you are not your normal self.<br />

EYE (very rare): Vision<br />

changes — especially<br />

unilateral, swelling, pain.<br />

Make sure you always tell your doctor that you have a history of Lobular BC in addition to symptoms or take this pdf along to any appointment and<br />

explain LBC is more common to spread to the bones, GI tract or ovaries.<br />

<strong>ABCD</strong>iagnosis SBS (Lobular) Red Flags Infographic v8. Produced 21/11/2019. Please check website for latest version - www.abcdiagnosis.co.uk/resources/infographics/<br />

BREAST CANCER SUPPORT 49<br />

<strong>ABCD</strong> <strong>Book</strong> V2.indd 49 07/04/2020 19:58


Bonnell<br />

Sara<br />

I Googled “breast pain” to see if there was<br />

“ ”<br />

any advice on how to manage it, and found<br />

inflammatory breast cancer on a long list<br />

of possible causes. I had never heard of<br />

inflammatory breast cancer.<br />

I waited a few months to see if the pain<br />

stopped at different times of my monthly<br />

cycle - it didn’t, it was constant. Areas of<br />

skin on my breast were starting to go hard,<br />

and dimpled, but still there was no lump.<br />

I didn’t want to be told off for wasting<br />

my GP’s time so put off going to see her<br />

because the symptoms seemed so trivial.<br />

By late March my whole breast was swollen<br />

and hard with an extensive area of red<br />

dimpled skin and what looked like insect<br />

bites, but still no lump. There were also<br />

swellings in my armpit on the same side,<br />

but I’d had a sore throat for a few weeks so<br />

I thought these were just swollen glands.<br />

By this time it was becoming difficult and<br />

uncomfortable to wear a bra, so I finally<br />

made an appointment.<br />

I will never forget the look of horror on<br />

my GP’s face when she examined me. She<br />

immediately suspected cancer and referred<br />

me urgently to the hospital for tests.<br />

I was diagnosed with inflammatory breast<br />

cancer 3 weeks later, aged 46. There was<br />

no lump, and it didn’t show up clearly on<br />

@Saraj<br />

bonnell<br />

In November 2011 I had pain in my left<br />

breast - a prickling sensation as if the<br />

plastic tag from a clothes label had<br />

fallen into my bra. There was no lump so<br />

I didn’t think it could be cancer, instead<br />

I thought it was just the start of the<br />

menopause although it seemed strange<br />

that it was only affecting one breast.<br />

the diagnostic mammogram, but the cancer<br />

was 80mm by 60mm and had spread to<br />

the skin and at least 6 of the lymph nodes<br />

under my arm.<br />

I was very lucky that my GP referred me so<br />

quickly, because doctors often misdiagnose<br />

Inflammatory Breast Cancer as a skin<br />

disorder and try to treat it with antibiotics,<br />

only referring patients when the antibiotics<br />

don’t work. It was Stage 3 - locally<br />

advanced - which is the earliest stage that<br />

inflammatory breast cancer can currently be<br />

detected.<br />

The cancer was treated with chemotherapy,<br />

then a modified radical mastectomy where<br />

the whole breast, all its skin, and all the<br />

under-arm lymph nodes on the affected<br />

side were removed. Then I had radiotherapy,<br />

and a year of Herceptin.<br />

I had to wait 2 years for my breast<br />

reconstruction because the risk of<br />

recurrence and spread is so much higher for<br />

Inflammatory Breast Cancer. After another 2<br />

years I then had surgery on my right breast<br />

to make it match the reconstructed breast’s<br />

size and shape as closely as possible.<br />

Currently I am over 7 years ‘No Evidence<br />

of Disease’, although I’ve had a few scares<br />

which have so far turned out not to be<br />

cancer.<br />

50 abcdiagnosis.co.uk Support for all affected by Primary and Secondary Breast Cancer<br />

<strong>ABCD</strong> <strong>Book</strong> V2.indd 50 07/04/2020 19:58


Roger<br />

Newman MBE<br />

On return home I immediately contacted<br />

my doctor who referred me to an<br />

understanding consultant. They thought<br />

the lump might be the result of some<br />

medication I was taking but said that<br />

some further tests would be the correct<br />

precaution.<br />

My first mammogram was done by a lady<br />

who had never had to deal with a male<br />

patient before and couldn’t work out the<br />

best position for my test. The result was<br />

a no result so I returned for another. A<br />

biopsy followed which confirmed that it<br />

was indeed breast cancer.<br />

I was told that I would need a<br />

mastectomy and possibly also further<br />

surgery to remove the lymph nodes<br />

if the cancer had spread to them,<br />

which turned out to be the case. The<br />

Macmillan nurse assigned to me was a<br />

huge support throughout this process;<br />

always being available to talk, answer my<br />

questions and calming me down…<br />

After the surgery the hospital clearly<br />

couldn’t decide which ward I should<br />

be put on and I soon found myself<br />

surrounded by gruff men with<br />

orthopaedic conditions. Neither the<br />

patients nor the staff could get their<br />

heads around the fact that I was a man<br />

who had breast cancer. One young nurse<br />

told me that she didn’t even know that<br />

men could have the condition.<br />

Throughout it all my loving and totally<br />

supportive partner was by my side but<br />

the ward was so uncomfortable that I<br />

told him when he visited me not to kiss<br />

me or give any hint that I was gay…<br />

“ ”BREAST<br />

@Roger<br />

Newman6<br />

I’m a 78 year old<br />

gay man. Checking<br />

myself while I was<br />

on holiday in 2015,<br />

I found a lump in<br />

my right chest,<br />

close to the nipple.<br />

After the surgery, I had a course<br />

of radiotherapy, and after much<br />

discussion with my partner, I declined<br />

chemotherapy.<br />

All the breast cancer charities I have<br />

been in touch have been warm in their<br />

concern for me but I am not aware of<br />

any separate organisation for the 300<br />

or so men who are diagnosed with the<br />

condition annually. The male support I<br />

have received has come from other parts<br />

of the world.<br />

Although I am assured that I am<br />

not the only man locally with breast<br />

cancer, there has been no offer from<br />

professionals to bring us together for<br />

mutual support. I have tried to use social<br />

media to find others but without success<br />

and I suspect that being clear about<br />

my sexuality may have made people<br />

reluctant to contact me.<br />

The love and support of my wonderful<br />

partner is a blessing and we face the<br />

future together. We agreed right from<br />

the start that we would concentrate on<br />

the present.<br />

Being part of a vibrant gay<br />

community we have also valued<br />

the support we have both<br />

received from our ‘brothers’ and<br />

‘sisters’.<br />

CANCER SUPPORT<br />

The anxiety about the return of the<br />

cancer will remain but for ‘now’ our aim<br />

is to enjoy another day together and<br />

enjoy the love we give and receive from<br />

each other.<br />

MEN CAN GET BREAST CANCER TOO<br />

51<br />

<strong>ABCD</strong> <strong>Book</strong> V2.indd 51 07/04/2020 19:58


YOGA<br />

FOR BREAST CANCER SURVIORS<br />

AND PATIENTS<br />

‘Regular exercise benefits everyone but especially women and men recovering from<br />

breast cancer treatments. Exercise should be easily incorporated into daily life, varied, fun,<br />

energizing and uplifting and Dr Kwok’s book captures all of these elements.’<br />

Ms Fiona MacNeill, Consultant Breast Surgeon, The Royal Marsden NHS Foundation Trust.<br />

President UK’s Associate of Breast Surgery (2015-2017)<br />

‘I have seen the benefit that yoga can have for my breast cancer patients and I am delighted<br />

that Dr Kwok has put together this comprehensive and extremely readable guide. I think<br />

this will be of enormous help to people recovering from breast cancer.’<br />

Dr Mark Harries, Head of Medical Oncology and Consultant Medical Oncologist , Guy’s and<br />

St Thomas NHS Foundation Trust<br />

Dr Yoga’s Practice Manual - Endorsed by world leading oncologists and yoga<br />

teachers. With guided sequences of three levels of difficulties, helping you to<br />

progress through your breast cancer journey into your recovery. Suitable as a<br />

tool for a home-based practice for breast cancer patients and survivors.<br />

The gentle healing yoga flow sequence is specifically designed for breast<br />

cancer patients recovering from surgery or undergoing active treatments like<br />

radiotherapy and chemotherapy. The sequence is designed for those who<br />

want to alleviate the common side effects of these treatments, including<br />

fatigue, insomnia, muscular pain, lymphedema, anxiety and depression.<br />

The rejuvenating yoga flow sequence is specifically designed for breast cancer<br />

patients who have completed all on-going medical treatments and are ready<br />

for a physically stronger, yet grounded yoga practice.<br />

The dynamic yoga flow sequence is designed for breast cancer survivors who<br />

have worked through both the healing and rejuvenating sequences, and who<br />

are ready for a more dynamic and challenging practice.<br />

Publication 25/5/17<br />

ISBN 978-1-911079-45-3<br />

Price £19.99<br />

Category Health<br />

Format 208 X 208mm<br />

Page extent 314<br />

Binding Paperback<br />

Illustrations 200<br />

Author Residence: London<br />

Rights Worldwide Exclusive<br />

BIC CODE: VFMG/ VXH<br />

Dr Jimmy Kwok is unique in his approach, which mixes medical science and<br />

ashtanga principles. He bridges both eastern and western philosophies of<br />

health and currently treats patients and teaches yoga classes.<br />

He gained his MA in Natural Sciences from the University of Cambridge and<br />

his doctorate degree in Clinical Oncology (Breast Cancer) at Imperial College.<br />

Jimmy has also interned at Harvard Medical School and the Oncology<br />

Department at Great Ormond Street Hospital. He has practised Ashtanga<br />

yoga for over a decade and he is also a registered Yoga Alliance UK RYT200<br />

yoga instructor.<br />

DISTRIBUTED BY GARDNERS<br />

For more information or a sample copy contact: jimmy.kwok@dryoga.co.uk<br />

52 abcdiagnosis.co.uk Support for all affected by Primary and Secondary Breast Cancer<br />

<strong>ABCD</strong> <strong>Book</strong> V2.indd 52 07/04/2020 19:58


@CurlyCars<br />

Fund<br />

Carolyn<br />

Gammon<br />

Living with cancer<br />

through pregnancy and<br />

the incredible goodwill<br />

of friends and family<br />

“ I had my first cycle of chemotherapy in early<br />

”<br />

In September 2015 we were delighted to<br />

discover that I was pregnant with our second<br />

child. Six weeks later, I noticed some changes<br />

in my breast and went to see my GP. I was<br />

referred for an ultrasound/biopsy and we<br />

were told I had a 5.6cm cancerous tumour<br />

in my left breast. The consultant said I could<br />

have chemotherapy to shrink it, which would<br />

not harm our baby. I would then need surgery<br />

after the baby was born.<br />

December and my hair fell out on Christmas<br />

Day. I had regular scans to check the baby<br />

and these showed she was growing well.<br />

I finished chemo in mid-March and our<br />

daughter was born on 29th April. She was a<br />

healthy 7lb 5oz and absolutely perfect. We<br />

decided to call her Mira.<br />

Our little miracle.<br />

After Mira was born I had a CT scan, then a<br />

mastectomy. We dared to believe this was our<br />

happy ending... Until the CT results showed<br />

suspicious areas on my liver/lungs. Following<br />

an MRI, on the 23rd June, my oncologist<br />

confirmed that I had incurable secondary<br />

breast cancer.<br />

The weeks after my diagnosis were awful. We<br />

grieved for the future we had lost and cried<br />

when the children were asleep.<br />

My oncologist suggested I continue with<br />

Herceptin as planned. Then he delivered yet<br />

more bad news: the two drugs I would need<br />

after Herceptin were not available on the NHS<br />

in Wales.<br />

When I needed them, I would have to selffund,<br />

at a cost of approximately £90K per<br />

year for Kadcyla and £60K per year<br />

for Perjeta.<br />

Our family and friends immediately set up<br />

a crowdfunding page. The response was<br />

completely overwhelming; within two weeks<br />

we had raised £20K, within two months,<br />

£50K, and over the next two years, £195K!<br />

In June 2017, a year after my secondary<br />

diagnosis, the Welsh Government announced<br />

that Kadcyla was to be made available on<br />

the NHS in Wales. A week later I found two<br />

small lumps in my left armpit. The usual tests<br />

confirmed it was cancer. The consultant<br />

recommended a lumpectomy, so I requested<br />

a second mastectomy at the same time, and<br />

he agreed. The new tumours were confirmed<br />

as HER2+, so it was considered a local<br />

recurrence and my treatment didn’t change.<br />

In February 2018, the Government announced<br />

that Perjeta would “now be routinely available<br />

on the Welsh NHS for people with advanced<br />

breast cancer”. A week later my scan results<br />

showed I had progression in my lungs. Perjeta<br />

was only available as a first-line treatment,<br />

which meant I didn’t qualify. It was decided<br />

that my next drug would be Kadcyla, which<br />

has kept me stable since.<br />

It’s over 4 years since my primary diagnosis.<br />

I am extremely lucky to have been able to<br />

access revolutionary cancer drugs that allow<br />

me to continue with a relatively ‘normal’ life.<br />

Because of them, I am able to focus<br />

on living with, rather than dying<br />

from secondary breast cancer.<br />

BREAST CANCER SUPPORT 53<br />

<strong>ABCD</strong> <strong>Book</strong> V2.indd 53 07/04/2020 19:58


Please sign and<br />

share the petition<br />

Head to: https://bit.ly/2Gmwylr<br />

@BreastDensityMatters<br />

Cheryl<br />

Cruwys<br />

Breast density in<br />

mammograms<br />

In 2013, we moved to France; my husband had<br />

retired early, and after 15 years as a French teacher,<br />

it was time for a change. After turning 50 in 2016, I<br />

was ready for my first mammogram. I was healthy,<br />

average weight, never smoked, no family history of<br />

any cancer, so I had absolutely no concerns. After<br />

the mammogram, I was asked to go into the next<br />

room to have an ultrasound.<br />

Supplemental Ultrasound<br />

on Dense Breast Tissue<br />

The doctor/radiologist examined my left breast<br />

thoroughly with the ultrasound gadget. He didn’t<br />

seem overly concerned, but he was not smiling<br />

either. He explained, pointing to the screen, that he<br />

had discovered a small shadow, ‘maybe nothing<br />

sinister’ but he wanted to be sure so I needed a<br />

biopsy.<br />

Whilst getting dressed I began to shake; I gave<br />

myself a ‘talking to’ and tried to calm down.<br />

A long week<br />

We decided to keep it quiet about the ‘shadow’ on<br />

my boob; after all it was more than likely a fibrous<br />

cyst or something?<br />

The YELLOW PAGES!<br />

My local doctor had the results. ‘One word –<br />

“cancerous!”,’ he said. Although I speak perfectly<br />

good French, I think he wanted to be sure I<br />

understood.<br />

Really! I exclaimed (in French). No tears. We talked<br />

about no family history of any cancer; I had never<br />

smoked and no, I had not received any accident or<br />

any ‘trauma’ to my breast/s.<br />

My doctor picked up the yellow pages telephone<br />

directory and called the hospital to organise an<br />

appointment. He reassured me that I was ‘lucky’ as<br />

I had a ‘good’ cancer, IDC (invasive stage 1) and he<br />

knew the surgeon who carried out the lumpectomy<br />

operations.<br />

Yes, the tumour was only 8mm but had it travelled<br />

to my lymph glands or elsewhere? I kept it a secret<br />

from family and friends because I didn’t want them<br />

to worry.<br />

Limoges Hospital, France - 21 July 2016<br />

The following weeks were filled with hospital checks,<br />

MRIs, CT scan, meetings with the anaesthetist and<br />

finally the day of the lumpectomy arrived; I was<br />

positive, happy and returned home by 8pm that<br />

evening.<br />

I felt fine, but was told I needed to rest! I sat in the<br />

garden with my laptop and took the time to do<br />

some research, which led me to women with ‘dense<br />

breasts’.<br />

There had been a UK campaign some years<br />

previously to raise awareness about breast density<br />

and the implications of dense breast tissue. I found<br />

that some women received ‘normal’ mammograms,<br />

but then were later diagnosed with larger and more<br />

advanced cancers, due to the dense tissue obscuring<br />

the cancer in the mammogram image. I felt that not<br />

only was I lucky but I had to do something…<br />

I decided to re-launch the Breast Density campaign.<br />

Breast Density Matters UK was formed.<br />

An education effort about dense breasts with the<br />

mission of early detection; reducing later stage<br />

cancer diagnoses and saving lives.<br />

54 abcdiagnosis.co.uk Support for all affected by Primary and Secondary Breast Cancer<br />

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PATIENT<br />

INVOLVEMENT<br />

IN RESEARCH<br />

High quality patient and public involvement improves the quality and relevance of research.<br />

Including patients in research ensures the information about the research is appropriate<br />

and accessible, but also that the research methods are acceptable and sensitive.<br />

Not only does involving patients in research empower patients and carers, providing a<br />

route to influencing change, but it also ensures accountability<br />

for public or charity funding.<br />

Finally, patient involvement in research can also identify<br />

new research questions, changing the research’s direction<br />

and allowing it to better serve the needs of those affected<br />

by cancer.<br />

Claire Dickinson<br />

Cancer Research UK<br />

Senior Nurse, Manchester<br />

Why USE<br />

evidence<br />

based<br />

research?<br />

For most, a cancer diagnosis is usually comes<br />

with many emotions, perhaps strongest<br />

among them is fear; fear for loved ones and<br />

fear for the future. As the first waves of fear<br />

retreat, we can try to absorb the array of<br />

information around us, from our healthcare<br />

team, friends and family, the internet<br />

and social media. But who to trust, what<br />

information will really help?<br />

Modern treatments used in our hospitals are built upon decades of research. Cancer cells are<br />

ultimately only different from the rest of the cells that make us in that genetic mistakes (mutations)<br />

make them behave differently and grow where they shouldn’t. With such similarities it<br />

hard to find ways of killing these cells while preserving the rest of the “good” ones. That might<br />

perhaps explain why we need to rely on evidence to guide decisions about treatment. Research<br />

builds that evidence but understanding and using it takes many years of special training from<br />

people working in teams.<br />

While there is much still to be learned, that research approach is driving<br />

dramatic improvements in outcome. Until the 1950s, unless a cancer<br />

was found in a single, easy to remove body location it was always<br />

fatal. Today, for every 10 cases of invasive cancer diagnosed, 6 of those<br />

people will be alive 5 years later, most of them will effectively be cured<br />

- living a decade more or longer. Importantly, those numbers continue<br />

to rise year by year.<br />

So working with the evidence-based<br />

approaches of your medical team is<br />

clearly the best way to stack the odds<br />

of a good outcome in YOUR favour and<br />

remember outside of that if something<br />

sounds too good to be true, it usually is!<br />

Robert O’Connor Ph.D.<br />

Head of Research<br />

Irish Cancer Society<br />

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@Madame<br />

Fierce<br />

EMMA<br />

WILLIS<br />

Standing in the shower before<br />

work on a September morning,<br />

my hand brushed against<br />

a lump. I had just spent the<br />

summer in Ireland with my<br />

mum, who had been diagnosed<br />

with breast cancer five months<br />

previously and was recovering<br />

from her own treatment. It<br />

couldn’t be... could it? I had only<br />

just turned thirty…<br />

Two weeks later, despite the statistics being<br />

in my favour, I was diagnosed with ER+,<br />

HER2+ breast cancer in my right breast. I had<br />

to tell my family, throwing them back into<br />

the alien, unfamiliar world that we had just<br />

clawed out of.<br />

I desperately wanted to cling onto normality<br />

and maintain my grasp on who I had<br />

always been, so I insisted that my family<br />

and friends put up with my dark humour;<br />

we were going to navigate this storm with<br />

laughter, no matter what. I also went back<br />

to my job as a high school English teacher<br />

for two weeks prior to my lumpectomy and<br />

reduction, determined to immerse myself in<br />

my classroom. Clasping onto normality for as<br />

long as possible was vital.<br />

After my surgery I had clear margins<br />

around my tumour site and my six rounds<br />

of chemo went as smoothly as I could have<br />

hoped. Occasionally my bloods would be<br />

low, meaning treatment was delayed for a<br />

week, but normally I felt grateful just to have<br />

another week of feeling healthy before being<br />

flung into the cycle of chemo side effects<br />

again.<br />

Dealing with cancer made me reach deep<br />

inside myself and find the strongest version<br />

of me... and I had so much to be grateful<br />

for. I was grateful for the endless love from<br />

my family and friends; I was grateful for<br />

the incredible support network I’d found<br />

on social media (#BCCWW on Twitter and<br />

YBCN on Facebook); I was grateful for<br />

having time off work and the opportunity<br />

to realise that there was life beyond my<br />

classroom walls.<br />

I read a lot of books, watched a lot of<br />

boxsets (although choosing Mad Men with<br />

the women’s glorious hairstyles while I myself<br />

was bald from chemo was perhaps a tad<br />

sadistic!) and went on as many day trips and<br />

weekends away as my body would allow.<br />

Moving forward from cancer has probably<br />

been the bigger challenge. Throughout<br />

treatment you always have that next step<br />

to grab onto and you are surrounded by<br />

staff whose reassurance and understanding<br />

validate every emotion and question you<br />

have. After treatment ended I felt adrift.<br />

Although I loved returning to work, I felt<br />

immensely alone without others who could<br />

directly relate to my experiences.<br />

Currently, I’m still taking Tamoxifen and<br />

grateful that I don’t have any noticeable side<br />

effects from it.<br />

As time goes on, I’m feeling less<br />

defined by my cancer experience,<br />

although I know I will never live<br />

without the fear of recurrence.<br />

Practising daily mindfulness and focusing<br />

on the present helps calm my anxiety and<br />

loosens the grip that cancer holds over me.<br />

56 abcdiagnosis.co.uk Support for all affected by Primary and Secondary Breast Cancer<br />

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Living with<br />

Cancer after<br />

treatment<br />

Living with Cancer after your treatment and being<br />

told, ‘The treatment has been a great success,’<br />

should be the best news you get, but sometimes<br />

it can actually be the most frightening part of the<br />

journey. For the last months since being diagnosed<br />

you have been going to chemotherapy, radiotherapy<br />

and lots of hospital appointment. You may have<br />

needed surgery and lots of recovery time. Now, there<br />

is nothing apart from the six-monthly appointment!<br />

Questions that may come to mind:<br />

What do I do? Need to get back to work? Am<br />

I ready? Need to get back to normality! Who<br />

will help me do this? And the big one;<br />

“WILL IT<br />

COME BACK?”<br />

THE UNCERTAINTY IS THE HARDEST PART OF YOUR JOURNEY.<br />

You’re likely to feel relieved that your treatment is finished, and<br />

keen to get back to the life you had before cancer. You may<br />

also be thinking about making the most of your health, or about<br />

positive changes you can make to the way you live. The end of<br />

treatment may present you with changes and new challenges.<br />

You may hear the term ‘Cancer Survivor’, or perhaps see it<br />

written in some information. The term ‘survivor’ includes anyone<br />

who is living with or after cancer. There may still be some<br />

physical problems, such as the side effects of treatment, or<br />

emotional and practical problems.<br />

You now have the chance to look at how you want to live in the<br />

future. You may want to do things you’ve often thought about<br />

but never done, perhaps visit places you’ve always dreamed<br />

about, or enrich personal relationships. This can be exciting, but<br />

we understand that you may not feel quite so confident.<br />

Uncertainty is so frightening, but you need to teach your mind<br />

to remain positive and think about the good things that are in<br />

front of you.<br />

YOU<br />

ARE NOT<br />

ALONE<br />

Don’t bottle it up...<br />

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WHAT OTHER<br />

SERVICES YOU MAY<br />

NEED TO ACCESS<br />

Suffering from cancer may lead to<br />

various difficulties and the following<br />

services aim to support you with the<br />

rest of the multi -disciplinary team from<br />

diagnosis through treatment and at<br />

follow up in to survivorship.<br />

The Role of the Dietitian<br />

in Cancer Care<br />

Food and eating are an enjoyable and<br />

social part of everyday life. Nutrition is the<br />

process of nourishing or being nourished<br />

and is essential for living. Cancer and its<br />

treatment can affect your appetite or<br />

ability to eat your usual meals.<br />

Assess your nutritional needs and gain<br />

an understanding of your lifestyle, food<br />

preferences and eating pattern.<br />

Use the knowledge of nutrition, health,<br />

disease, cancer and its treatment to<br />

provide practical advice that will help you<br />

to eat and maintain your quality of life.<br />

Support you in making informed choices<br />

regarding healthy lifestyles.<br />

The Role of the<br />

Physiotherapist in Cancer Care<br />

Physiotherapy is an autonomous profession concerned<br />

with the care, management and rehabilitation of<br />

patients. These principles apply to the management of<br />

patients with cancer through all care and rehabilitation<br />

programmes from diagnosis to the end of life.<br />

Physiotherapists conduct ongoing assessment of the<br />

needs of this patient group and their carers, in order to<br />

apply skilled interventions, which are vital for patients’<br />

independence, functional capacity and quality of life.<br />

The role of the physiotherapist, as an essential member<br />

of the multi-disciplinary team is key to the successful<br />

rehabilitation and management of patients with cancer<br />

and palliative care needs. The absence of physiotherapy<br />

intervention would be detrimental to patient care and the<br />

ability of the patient’s family to cope with the effects of<br />

the disease or its treatment on their functional capacity<br />

and quality of life.<br />

THE ROLE OF EXERCISE<br />

Exercise is a huge part of my physical and<br />

mental wellbeing and I want to share this<br />

message. It’s helped me gain strength and<br />

muscle tone as this can deteriorate through<br />

illness due to lack of movement. If you can<br />

exercise around treatment you will feel the<br />

benefits. I have also felt it has helped reduce<br />

the side effects caused by chemotherapy,<br />

radiotherapy and daily medication.<br />

I continued exercising throughout all my<br />

treatment over the last 5 years. There is<br />

evidence that for primary survivors it can help<br />

reduce the risk of secondary cancer.<br />

My website supports this and I have links to<br />

what is available across the country.<br />

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Charities who give<br />

holiday grants or support for breaks<br />

Abcd retreats for exercise<br />

Motivational exercise 2 night retreats<br />

with other patients sharing the<br />

experience.<br />

www.abcdiagnosis.co.uk/lifestyle/<br />

abcd-retreat/<br />

Casting for Recovery<br />

Fly fishing retreats based on the<br />

principle that the therapeutic<br />

benefits of the countryside<br />

alongside the connection with<br />

others who have shared a similar<br />

experience can be transformative.<br />

www.countryside-alliance.org/<br />

charity/casting-for-recovery-ukireland/apply-for-a-retreat<br />

Ellie’s Friends<br />

Free gifts and services for anyone<br />

living with cancer in the UK.<br />

www.elliesfriends.org<br />

FACT – Frederick Andrew<br />

Convalescent Trust<br />

Providing grants for working<br />

WOMEN from all backgrounds and<br />

almost any medical condition – there<br />

is an assessment form you complete<br />

for a grant.<br />

www.factonline.co.uk<br />

Something To Look<br />

Forward To<br />

A comprehensive website where<br />

people with cancer and their families<br />

can access a variety of free stuff for<br />

cancer patients.<br />

www.somethingtolookforwardto.<br />

org.uk<br />

Search online for<br />

more cancer charities<br />

Shine Cancer Support<br />

Supporting younger cancer<br />

patients 20s,30s, 40s in person<br />

or online but provide a range<br />

of activities or breaks to meet<br />

other people<br />

www.shinecancersupport.org<br />

Team Verrico<br />

Charity mainly supporting<br />

families, a standout being the<br />

camp out in the summer months<br />

and a range of activities.<br />

www.teamverrico.org<br />

Odyssey<br />

A 5 day “adventure” course through<br />

unique blend of the unexpected and<br />

a variety of challenges with fun.<br />

www.odyssey.org.uk<br />

Macmillan<br />

Offer a range of grants you<br />

can apply for so ask for more<br />

information.<br />

www.macmillan.org.uk<br />

Willow Foundation<br />

Provides special days for the<br />

seriously ill 16-40 year olds.<br />

www.willowfoundation.org.uk<br />

60 abcdiagnosis.co.uk Support for all affected by Primary and Secondary Breast Cancer<br />

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Natalie<br />

Yates-Bolton<br />

Breast cancer recurrence<br />

One of my favourite numbers<br />

is the number 5 and coincidentally<br />

I have had cancer<br />

five times.<br />

@NYatesBolton<br />

As a 22 year old university student in 1989, I<br />

was unprepared for a diagnosis of cancer. I<br />

had to quickly make a decision about whether<br />

to stay at university 250 miles from home or<br />

return home to be looked after by my Mum.<br />

I knew that I wanted to graduate with my<br />

friends, so I decided to stay at university.<br />

I was on the clinical placement year of a<br />

nursing degree with a mandatory number<br />

of hours that needed to be completed,<br />

regardless of having cancer. With the support<br />

of my close friends and compassionate tutors<br />

I carried on.<br />

Each morning I would put on my uniform and<br />

go to the hospital to care for patients. At the<br />

end of my shift I would hop on the hospital<br />

transport to the cancer department the other<br />

side of town. I’d have my radiotherapy, get the<br />

little bus back to the nurses’ accommodation,<br />

have a rest for an hour and then carry on with<br />

life as normal.<br />

I did get tired, my skin was red raw with<br />

radiation burns and my hair fell out in the<br />

pattern of the lead protector for my brain<br />

and spinal cord. However, with wrap around<br />

compassion and friendship I completed my<br />

treatment, my clinical year, and graduated<br />

with the wonderful friends who had looked<br />

after me.<br />

In 2003 I was diagnosed with Hodgkin’s<br />

lymphoma again but now I was mum to India<br />

(9) and step-mum to Lucy (13).<br />

I decided to be a stay at home mum for 10<br />

months, balancing my time between having<br />

chemotherapy, resting after treatment and<br />

saving my best energy for family time.<br />

In 2009 I was diagnosed with breast cancer,<br />

probably caused by the radiotherapy from my<br />

first cancer. This time the extensive nature of<br />

the surgery, chemotherapy and radiotherapy<br />

meant that I needed to have 9 months off<br />

work. I could still function well as a mum/<br />

step-mum; to have worked as well would have<br />

meant that neither family life nor work life<br />

would have had successful outcomes.<br />

In 2011 I had a breast cancer recurrence, the<br />

girls were older, my surgery was less extensive<br />

and a supportive boss at the university<br />

where I work meant that I could juggle family,<br />

treatment and work. I hope that one day I<br />

can offer the same support to someone so<br />

that they can live a fulfilling life despite life’s<br />

challenges.<br />

Now in 2017, since my last diagnosis<br />

which means I now need ongoing<br />

targeted chemotherapy, I have<br />

applied the lessons from my previous<br />

experiences and am currently<br />

working as a senior lecturer in<br />

nursing, a job that I value.<br />

I work in this role four days a week and also<br />

work as a consultant for a fabulous dementia<br />

care company. My daughters are now 25 and<br />

29 years old and being with them is still my<br />

favourite way of spending time.<br />

BREAST CANCER SUPPORT 61<br />

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Cottington<br />

@Cotting<br />

tonN<br />

Nicola<br />

I live with my wife and two sons in beautiful<br />

“ ”<br />

rural Suffolk. I am a senior manager for<br />

the NHS and at the time of my diagnosis I<br />

had just taken a job with responsibility for<br />

cancer services, which added an interesting<br />

dimension to my journey.<br />

The GP couldn’t feel what I was talking<br />

about but referred me to the breast clinic<br />

at the local hospital to be sure. I had a<br />

mammogram which was “all clear” and<br />

then an ultrasound, which did show some<br />

areas of concern, and then a biopsy. I was<br />

told that I was quite young and had dense<br />

breasts, which meant that the mammogram<br />

may not be accurate. I was asked to return<br />

about ten days later for the results of the<br />

biopsy. The doctor suggested I bring my<br />

wife with me.<br />

I actually think those ten days were the<br />

hardest part of the last two years. The<br />

not-knowing was so difficult. After that, I<br />

always felt I had something to focus on, I<br />

always had a plan.<br />

When we were called into the consultation<br />

room I knew something was wrong because<br />

there was a specialist nurse there. So<br />

it wasn’t a complete shock when I was<br />

diagnosed with invasive ductal carcinoma<br />

in my right breast, oestrogen receptor<br />

positive. They already had a treatment<br />

plan. It had been detected early so I would<br />

I was 41 when I found a lump in my right<br />

breast in July 2016, three weeks after<br />

starting my new job. I decided to see if<br />

it settled down after my period came<br />

as I have always had lumpy boobs. We<br />

also had a family holiday booked. So,<br />

my period came, and we had a lovely<br />

holiday, but the lump was still there.<br />

have a wide local excision, followed by<br />

radiotherapy. However, an MRI a week later<br />

showed that there were multiple tumours,<br />

covering most of my right breast so the<br />

plan changed and I needed to have a right<br />

side mastectomy.<br />

I had a mastectomy and an immediate DIEP<br />

reconstruction, using my tummy fat. I was in<br />

theatre for eight hours and in hospital for a<br />

week. I felt mentally positive but physically<br />

I have never felt so debilitated. It was hard<br />

work to get out of bed and walk around and<br />

I slept a lot.<br />

I didn’t need any radiotherapy or<br />

chemotherapy. I started taking tamoxifen<br />

in November 2016 but had to stop taking<br />

it after eighteen months because it caused<br />

thickening of my womb lining and excessive<br />

bleeding.<br />

After a five month break, I am now about<br />

to start gosrelin injections and will have my<br />

ovaries removed. I am cross that I am facing<br />

an imposed menopause ten years early. But<br />

continuing hormone suppression increases<br />

my ten-year survival rate by five percent.<br />

I remember at an early oncology<br />

appointment asking about twenty- and<br />

thirty-year survival rates – I felt so young<br />

and wanted to live longer than ten years!<br />

But that data just isn’t available.<br />

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BREAST CANCER SUPPORT<br />

NHS<br />

Breast Cancer Screening<br />

For information and guidance about<br />

breast cancer screening, talking you<br />

through the process, and giving<br />

answered to all the frequently asked<br />

questions.<br />

www.nhs.uk/conditions/<br />

breast-cancer-screening<br />

Cancer Research UK<br />

We are the world’s largest charity<br />

dedicated to saving lives through<br />

research. Our vision is to bring<br />

forward the day when all cancers<br />

are cured.<br />

www.cancerresearchuk.org<br />

Breast Cancer Now<br />

We are Breast Cancer Now, the<br />

UK’s largest breast cancer charity,<br />

formed by the merger of Breast<br />

Cancer Care and Breast Cancer<br />

Now. Our research and care<br />

provide support today and hope<br />

for the future. We are fundraisers,<br />

campaigners, researchers,<br />

believers.<br />

www.breastcancernow.org<br />

Make 2nds Count<br />

Make 2nds Count is dedicated to<br />

making women and men living with<br />

secondary breast cancer count.<br />

www.make2ndscount.co.uk<br />

The Lymphoedema<br />

Support Network<br />

The Lymphoedema Support<br />

Network (LSN) takes the lead<br />

role in educating and supporting<br />

other patients with this condition<br />

by providing a high standard of<br />

information and promoting self-help.<br />

www.lymphoedema.org<br />

Lobular Breast Cancer<br />

Alliance (LBCA)<br />

The LBCA is a national network of<br />

patient-advocates with lobular breast<br />

cancer working with breast cancer<br />

researchers and clinicians. LBCA<br />

advocates for ILC research and<br />

educates about lobular breast disease.<br />

www.lobularbreastcancer.org<br />

MET UP UK<br />

A new advocacy group for people<br />

living with secondary breast cancer.<br />

@metupukorg<br />

Prevent Breast Cancer<br />

We are the only UK breast cancer<br />

charity funding ground-breaking<br />

research solely aimed at preventing<br />

the disease for future generations.<br />

www.preventbreastcancer.org.uk<br />

Secondary 1st<br />

The mission of Secondary 1st is<br />

to help fund research into the<br />

prevention, diagnosis and causes<br />

of secondary (metastatic) breast<br />

cancer and the development of more<br />

effective treatments.<br />

www.secondary1st.org.uk<br />

Macmillan<br />

METUPUK<br />

We provide physical, financial and<br />

emotional support to help you live<br />

life as fully as you can.<br />

www.macmillan.org.uk<br />

Maggie’s<br />

Maggie’s helps anyone affected<br />

by cancer so you can talk to<br />

and get support from a range<br />

of professionals across 22<br />

centres.<br />

www.maggiescentres.org<br />

Second Hope<br />

Our mission - to provide hope and<br />

strength by raising awareness,<br />

providing support and funding<br />

research.<br />

www.secondhope.co.uk<br />

Dense Breast<br />

DenseBreast-info.org was<br />

developed as a comprehensive,<br />

medically-sourced educational<br />

tool. Our mission is to<br />

objectively inform “dense breast”<br />

conversations occurring as a<br />

result of advocacy efforts.<br />

eu.densebreast-info.org<br />

BREAST CANCER SUPPORT 63<br />

<strong>ABCD</strong> <strong>Book</strong> V2.indd 63 07/04/2020 19:58


“I am extremely lucky<br />

to have been able to<br />

access revolutionary<br />

cancer drugs”<br />

“I am able to focus on<br />

living with, rather than<br />

dying from secondary<br />

breast cancer.”<br />

jo@abcdiagnosis.co.uk<br />

@abcdiagnosis<br />

facebook.com/abcdiagnosis<br />

gofundme.com/breast-cancer-exercise-retreat<br />

Thank you to to our our book sponsor Flen CLINIGEN. Health.<br />

Flen Clinigen Health has have no had input no into input the in content the content of the of book. this book.<br />

Registered CIC.<br />

64 abcdiagnosis.co.uk Support for all affected by Primary and Secondary Breast Cancer<br />

<strong>ABCD</strong> <strong>Book</strong> V2.indd 64 07/04/2020 19:58

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