Spring/Summer 2013 - Sarcoma UK

info@sarcoma.org.uk 

www.sarcoma.org.uk 

Connect 

The bone & soft tissue cancer charity 

Spring/Summer 2013 

2 brothers 

1 vintage bentley 

7,610 miles 33 days 

support them on their epic journey! 

See page 5 

14 0 

“Speak out!” 

Sarcoma UK research grants 

Liposarcoma 

Become a Sarcoma 

Four of the highest quality research 

Statistical insight from 

Voice during Sarcoma 

projects are selected for grants worth 

The West Midlands 

Awareness Week 

a total of £100,000 

Cancer Intelligence Unit

From the Chief Executive 

2 

Sarcoma UK’s key messages 

• 

types of sarcoma 

• 

Sarcoma UK is the main charity in the UK dealing with all 

Sarcoma UK provides information and support for 

anyone affected by sarcoma – patients, carers, family and 

friends 

• 

Sarcoma UK’s aim is to achieve the best possible 

standard of treatment and care for patients with sarcoma. 

It does this through: 

- Funding scientific and medical research into causes and 

treatments 

- Delivering a range of support and information services 

covering all aspects of sarcoma 

- Raising awareness of sarcoma amongst the public, 

healthcare professionals and policy makers 

- Campaigning on behalf of sarcoma patients for 

improved treatment and carey donations and 

fundraising activities to fund its work 

• Sarcoma UK relies solely on voluntary donations and 

fundraising activities to fund its work 

• 

Sarcoma UK is staffed by a small team of five, managed 

by a board of trustees (many with personal experience of 

sarcoma), and supported by experts in the sarcoma field 

• 

Sarcoma UK works collaboratively with healthcare 

professionals and other cancer charities 

Impact 

Research 

• 

Sarcoma UK has funded £455,000 of scientific and 

medical research over four years. We have awarded a 

total of 12 grants to leading scientists, researchers and 

clinicians in centres of excellence around the UK 

• 

Grants are awarded by our Research Advisory Committee 

to leading scientists, researchers and clinicians in centres 

of excellence around the UK 

Support 

• 

Sarcoma UK offers online support to patients and carers 

through GroupSpaces: www.groupspaces.com/sarcoma. 

Subscribers chat to each other by email and gain valuable 

support from other patients in the same situation 

• Sarcoma UK provides support to 12 local sarcoma groups 

around the UK, and helps new groups to get set up 

• 

Sarcoma UK has an active Facebook and Twitter page 

where the sarcoma community are able to communicate 

with each other in a social online environment 

Information 

• 

Sarcoma UK’s Sarcoma UK’s patient information is rated 

highly amongst patients and healthcare professionals. 

50,000 leaflets about sarcoma are sent out to individuals 

and hospitals each year 

Awareness 

• Connect (Sarcoma UK’s publication) is sent out three 

times a year and distributed to a database of 5,000 

• 

Sarcoma UK has an online community where anyone 

affected by sarcoma can upload their photo and share 

their story: www.sarcoma.org.uk/voices 

Campaigning 

• 

Sarcoma UK is an active member of Cancer 52 (alliance 

of charities representing less common cancers) and the 

Cancer Campaigning Group (alliance of cancer charities 

representing ‘third sector’ interests in the delivery of 

cancer services) 

Connect • Sarcoma UK • Spring/Summer 13 

This edition of Connect is packed with 

information about our supporters’ 

inspiring and unique personal stories and 

activities that support Sarcoma UK’s vital work. 

Not everyone can run marathons, but everyone can contribute 

to the fight against sarcoma. Get involved during Sarcoma 

Awareness Week (17-23 June) – Remember when we asked you 

to upload your photo last year It’s back, but with a twist! We 

are asking you to upload your photo AND share your story – 

Become a Sarcoma Voice and “Speak out!” (page 9). 

Sarcoma UK has been quietly making progress on the research 

front. Another four research grants were awarded in 2013, 

bringing our total investment into ground breaking sarcoma 

research to just under half a million pounds. Read about our 

new research grants on page 10. I am delighted that we have 

been able to fund innovative research into targeted therapies for 

sarcoma that may lead to new treatments and ultimately a cure. 

Sarcoma UK is also funding important research into two new 

technologies that aim to help the recovery of people following 

their sarcoma treatment, thereby improving quality of life for 

sarcoma survivors. 

What is sarcoma 

Sarcomas are rare cancers that 

develop in the muscle, bone, nerves, 

cartilage, tendons, blood vessels and 

the fatty and fibrous tissues. 

There are about 100 different subtypes 

of sarcoma that fall into three 

main types: 

• Soft tissue cancers 

• Primary bone cancers 

• Gastro-intestinal stromal tumours 

or GIST – a soft tissue sarcoma 

found in the stomach and intestines 

They can affect almost any part of 

the body, on the inside or the outside. 

Sarcomas commonly affect the arms, 

legs and trunk. They also appear in 

the stomach and intestines as well as 

behind the abdomen (retroperitoneal 

sarcomas) and the female reproductive 

system (gynae sarcomas). 

About 3,800 new cases of sarcoma 

are diagnosed each year in the UK 

which makes up approximately 1% 

of all cancer diagnoses. Some types 

of sarcoma are more common in 

children and young people, such as 

Rhabdomyosarcoma, Ewing’s sarcoma 

Lindsey Bennister Chief Executive 

and Osteosarcoma. Other types, 

such as Myxofibrosarcoma and 

Chondrosarcoma, are more 

common in older people. 

Ten people every day are 

diagnosed with sarcoma in the 

UK and 14% of all childhood 

cancers are sarcomas. 

The most common sub-types 

of sarcoma 

Soft Tissue 

Leiomyosarcoma 

Fibroblastic sarcoma 

Myxofibrosarcoma 

• Liposarcoma 

Gastrointestinal stromal 

tumour (GIST) 

Kaposi’s sarcoma (KS) 

• Angiosarcoma 

Malignant peripheral nerve 

sheath tumour (MPNST) 

Synovial sarcoma 

• Rhabdomyosarcoma 

Bone 

Chondrosarcoma 

Osteosarcoma 

Ewing’s sarcoma 

• Chordoma 

Giant cell tumour (GCT) 

www.sarcoma.org.uk

Personal experience 

Turning the corner 

Long-haul travel is back on the schedule for customer service manager Emma Tickle, 29, less than nine months 

after she had surgery to remove a 31cm-long soft tissue sarcoma 

Last September I was looking 

forward to going on holiday to 

Thailand with my partner John 

when I noticed a lump in my right 

thigh, which was only noticeable 

when I tensed my leg. I visited my GP 

who immediately instructed me to 

cancel my trip and referred me to an 

Orthopaedic specialist. 

The specialist conducted an MRI* 

scan which revealed a 21cm-long 

lump. I was referred to the Sarcoma 

Multidisciplinary Team (MDT)** at 

Liverpool. I was sent for a biopsy, 

which confirmed that I had a 

soft tissue sarcoma, and required 

immediate surgery to remove 

the tumour. Prior to meeting my 

sarcoma specialist, I had been on 

the internet to ‘self diagnose’ and 

sarcoma had popped up a few times 

so I had an idea what it was 

– although to hear an 

official diagnosis of 

something so rare 

was extremely 

shocking, and 

I was already 

obviously very 

upset as my nana 

had passed away 

the same week. 

“This 

experience has 

really changed me – 

I’m a lot more patient, 

understanding 

and caring” 

On 16 October I was 

admitted to Broadgreen Hospital 

where my tumour was successfully 

removed, along with one and 

three-quarters of the muscles in 

my thigh. The vastus lateralis was 

completely removed and most of 

my intermedius muscle. The tumour 

was a whopping 7.7lb and 31cm long 

- incredibly it had grown 10cm since 

my MRI in just three weeks. 

The official diagnosis was a ‘mixed 

soft tissue sarcoma, grade 3’. I just 

wanted the tumour out of me. After 

the surgery I stayed in hospital for 

six nights, but from the day of the 

surgery I felt I had turned a corner. 

I was determined to stay positive. I 

thought to myself ‘I am only 29, there 

are so many things I still want to do… 

have kids, visit Bora Bora… – I am 

going to fight this thing’. 

After I left hospital I had a leg brace 

and had to have physiotherapy to 

help me gain movement in my leg. 

I worked hard to get better 

and get my leg working 

so I could regain my 

independence. 

In December I started 

a six-week course 

of radiotherapy at 

Clatterbridge Cancer 

Centre. Clatterbridge is a 

90 mile round trip from my 

house so this took up a lot of 

time, especially as the treatment was 

less than a minute each day! The staff 

were lovely and really accommodated 

me changing appointments due to 

Emma and John 

*Magnetic 

Resonance 

Imaging (MRI) 

uses magnets to 

create an image 

of the tissues of 

the body. 

**Multidisciplinary 

team (MDT) 

includes a 

key worker or 

sarcoma clinical 

nurse specialist, 

surgeon and 

other healthcare 

professionals 

involved in your 

care. Your MDT 

will support you 

throughout your 

treatment to 

ensure you get 

the right 

treatment as and 

when you need it. 

My support network 

the distance I had to travel. I only 

suffered side effects of the treatment 

with three days to go! I had nasty 

burns at the back of my leg and on 

my bottom, which made it extremely 

painful to sit down (ouch!) but this 

only lasted a week to ten days (and 

was only a small price to pay!). 

I had my first ’12 week’ check up on 

my lungs in January and it was all 

clear – fingers crossed for the rest! 

I started physio again once my burns 

had settled and am making great 

progress. I am driving and I have 

gone back to work after five months 

absence. 

This experience has really changed 

me – I’m a lot more patient, 

understanding and caring. I have a 

fresh perspective on both my personal 

and work life and am much more 

carefree and relaxed. 

Travel is one of my passions. As a 

customer service manager for a 

loyalty card company I have been 

lucky enough to travel the world. So 

it was extra special that to celebrate 

Valentine’s Day I recovered in time to 

go to Amsterdam with John. And this 

week we’re going to book our first 

long-haul holiday since my operation. 

I live life to the full (even more than 

I did before!!) and am always looking 

for the next adventure. 

One thing that I did struggle with was talking about my illness, especially as I was confused, 

scared and so emotional, and had so many friends and family who wanted to know what was 

going on, so I wrote a blog – www.dizzytix.wordpress.com. It’s had over 30,000 views so far 

and I have had other sarcoma patients and carers contact me via this channel which has been 

so lovely. 

My Clinical Nurse Specialist (CNS) also advised me of a Sarcoma Support Group which is held 

in Liverpool every eight weeks. I have attended the last two meetings and it’s been fantastic to 

meet other people and share experiences. (See page 12 for support groups in your area.) 

3 

www.sarcoma.org.uk Connect • Sarcoma UK • Spring/Summer 13

Fundraising 

Keep on running 

If 36,000 people actually run the London Marathon, could you be one of them in 2014 Download an 

application form at www.sarcoma.org.uk/running 

4 

Cheika 

TIME: 04.26.53 

On Sunday 21 April, the hottest day 

of the year so far, I ran the London 

Marathon – my first ever and having 

the Sarcoma UK’s one official place. 

As a keen, but not particularly 

talented runner, I was eager to take 

on this personal challenge for a cause 

close to my heart. I am a Consultant 

Radiologist working with the East 

Midlands Sarcoma Network. A 

chance enquiry at the Sarcoma UK 

stand at the British Sarcoma Group 

(BSG) conference 2012 got me into 

this predicament. So five months 

of training in the worst weather ever, 

16lb lost, two dress sizes less and 

£3,800 later I’ve done it and I am 

absolutely delighted! 

Michael 

TIME: 04.30.00 

At 55, my best running days were 

behind me! Having only ran 10k, I 

started to look at the websites of 

various charities in the hope of making 

an informed choice as to the charity 

I should support. I was attracted to 

Sarcoma UK because I had recently 

become aware of the disease. I 

reckoned that if I could raise £2,000, 

that would actually make a difference 

to their published figures and more 

importantly, to the research and 

awareness projects it is committed 

to. Without doubt, the Marathon is a 

wonderful event. It was an experience 

like no other. The crowds were 

magnificent. It was like the Olympics 

had come back to London for the day! 

Adam 

TIME: 04.27.35 

Almost three years ago my sister was 

diagnosed with a rare form of cancer. 

The shock of the diagnosis hit us all 

but with the help of her medical team 

in Leeds she has now received her 

two and a half year all clear. Sarcoma 

UK was recommended to her as 


a place for advice. Training was 

tough with the British weather, 

niggling injuries and my own 

laziness to confront, but the end 

goal of crossing the finishing line in 

one piece and the thought of raising 

money for such a good cause has kept 

me going. Hopefully I will enjoy the 

day itself but I am sure I will look 

back on the experience with very 

fond memories... Just don’t ask 

me to do it again! 

Ashley 

TIME: 04.10.25 

18 weeks, 72 days, 345 miles, 3,105 

minutes, 51.75 hours, 2 pairs of shoes, 

and £2,000 raised for Sarcoma UK, 

and I ran the 2013 London Marathon 

for my friend Pat Searle who bravely 

battled sarcoma cancer. With every 

mile I ran and with every pence 

donated I could see the hope and 

satisfaction in Pat’s eyes. The day 

of the Marathon came and I knew 

that Pat was not well enough to 

cheer me on at the race. Like many 

journeys the Marathon was easy in the 

beginning, but by the end it was simply 

a matter of putting one tired beaten 

down foot in front of the other. As I 

struggled I thought of Pat’s ability to 

endure and when I felt tempted to 

quit or walk away I thought about 

her and fought my way to the finish. 

I did it. We did it. It saddens me to 

say that Pat passed away one month 

after the Marathon was finished. The 

Marathon symbolises the triumph of 

human spirit, and so does Pat. 

Anna 

TIME 04.10.55 

I ran in memory of Jo Bryant, who 

lost her battle to sarcoma in January, 

after an incredible and inspirational 

fight. I had never previously heard 

of this cancer and wanted to help 

create an awareness whilst raising 

money to help others. The crowds 

were absolutely incredible with 

From top to 

bottom: 

Cheika, Michael, 

Adam, Pat & 

Ashley, Anna, 

Megan and Anna 

with her family 

every section of the route full of 

people cheering and shouting. 

The camaraderie amongst runners 

continues to be inspiring and I would 

urge anyone thinking about it to 

don their running shoes and give it 

a go! I’ve done 14 marathons and 

London is the best! 

Megan 

TIME: 04.44.38 

I want to tell you about an amazing 

person, Rob – whom I met at 

university – who made such an 

impact on everyone he met, in 

such a positive way. It is a horrible 

thing that someone we all knew 

would do so much with his life 

should be taken at the age of 21. 

If he had come through this he 

would have done so much good. 

I will never forget him, his passing 

left a huge gap in my life. I signed 

up to the Marathon because I hope 

that what will be an amazing year 

and an amazing experience for me, 

will in turn be an amazing year 

for Sarcoma UK that deserves 

so much more funding and 

recognition. Most of all I hope 

I will do Rob proud and do some 

of the good I know he would have 

done. 

Anna Taylor 

TIME: 04:30:02 

I love running because as well as 

keeping me fit it clears my mind. 

My ambition has been to do the 

London Marathon. I chose to run for 

my mum who was diagnosed with a 

sarcoma. After a biopsy it was found 

to be a schwannoma, which is benign. 

My mum received treatment from 

sarcoma specialists at The Queen 

Elizabeth Hospital Birmingham and 

the schwannoma was successfully 

removed. My husband Ben, Mum, 

Dad, brother Dan, family and friends 

have been there for me every step of 

the way! 

www.sarcoma.org.uk


Driving force 

Daniel and Antony Woodcock are driving a vintage Bentley from Peking to Paris to honour their late father 

Louis’ long-held ambition to take part in the rally, while raising vital funds for Sarcoma UK. Here, Antony 

explains how Louis’ courage and love of life is the real driving force behind the adventure 

My younger brother and I will 

have finally found ourselves 

at the footsteps of the 

Great Wall of China, as you read this, 

revving the engine of our late father’s 

pride and joy, a 1927 Vintage Bentley, 

and about to embark on the journey 

of a lifetime. 

Ahead of us will lie a 33 day 

long, 12,247 km route across two 

continents, eight countries and some 

of the remotest places on planet 

Earth. Our goal, to complete the 

gruelling Peking to Paris endurance 

rally – the longest and toughest 

challenge for man and motorcar – all 

in aid of Sarcoma UK and in loving 

memory of our father, Louis Peter 

Woodcock. 

With little over a month to go, and 

with no mechanical experience to 

our name, both my brother and I 

are eagerly awaiting the challenge 

ahead. However, getting to the start 

line has not been easy for us. It has 

taken two long, hard years to do so 

and has involved many tears and 

much heartache in the process. The 

hardest of all has been the recent 

loss of our father, who at the age of 

54 sadly passed away in September 

2012 after a long-fought battle with 

cancer. 

Daniel and 

Antony 

Woodcock and 

their vintage 

Bentley 

On the morning of Christmas Eve 

our father took us both for a long 

walk during which time he explained 

that he had been diagnosed 

with cancer, something 

no son wishes to 

hear. He went on to 

explain that in the 

two months since 

diagnosis he had 

already received 

treatment at the 

Royal Infirmary 

in Glasgow. This 

treatment had resulted in 

an operation to remove 

“In his 

mind this meant 

achieving more of his 

wacky goals in life and 

top of his list was the 

Peking to Paris 

rally” 

For anyone who knew our father 

this would come as no surprise. He 

was a man with a strong “gung-ho” 

attitude, a love of classic 

cars and a passion for 

adventure. It would 

therefore seem only 

fitting that his next 

great adventure 

would be the 

Peking to Paris 

rally! 

Unfortunately it 

was not to be… In 

The Peking to Paris rally officially 

March of 2011, after regular 

commences on the 28 May 2013. 

a large sarcoma tumour from monitoring of my father’s condition, 

However, for my brother and 

his left shoulder. At the time the sarcoma had returned, only 

I our journey officially 

he believed the operation this time it had spread further into 

began over two 

had been successful and as a his left arm. A further operation in 

years ago on the 24 

result of this scare he told us June of 2011 would see a second 

December 2010. It is a 

that he wished to take full sarcoma tumour removed, but again 

day we will both never 

advantage of the second this was to no avail. In September 

forget… 

chance life had granted him. of 2011 the sarcoma had become so 

In his mind this meant achieving aggressive that my father was faced 

It had snowed in Scotland 

more of his wacky goals in life and with only one option if he wished 

and my brother and I, who both 

top of his list was the Peking to Paris to survive – amputation of his left 

work in London, had flown home to 

rally, which he wished to complete arm. For a man of over 6ft tall with 

spend Christmas with our parents. 

with both my brother and I. 

a strong physical presence and 

www.sarcoma.org.uk Connect • Sarcoma UK • Spring/Summer 13 5


6 

an active lifestyle this is no easy 

decision, but my dad was a fighter. 

In September of 2011 his left arm 

was successfully amputated giving 

him what we hoped was a stronger 

chance of beating such an aggressive 

yet unknown disease. 

For my family the next 12 months 

would be a continuous emotional 

rollercoaster. Like most cancer 

patients my dad underwent a 

lengthy course of chemotherapy, 

constantly changing drug type 

and dosage in an effort to beat 

the disease. He travelled 

up and down the country 

for advice, changed his 

diet and his lifestyle in an 

effort to boost the effects 

of the chemotherapy. By 

July 2012 my father had 

been administered all known 

chemotherapy drugs available in 

the world for sarcomas, but nothing 

had halted the onslaught of such an 

aggressive unknown and no one 

could give us answers. 

By August 2012 my father 

was half the man he was 

and only a glimmer of 

his former self from a 

physical perspective. 

He had aged twenty 

years in the space 

of two, lost over 

30kg in weight, had 

almost no colour left 

in his complexion and, 

although he would never 

admit it, he was in constant 

pain and discomfort. After 

battling courageously for almost two 

years the cancer finally took its toll 

and my father sadly passed away on 

the 9 September 2012. 

Talking about this as I do now I can 

say that my father endured much 

personal hardship during his two 

year battle with cancer, a disease 

that threw everything at him. As 

a son it is heart-breaking to lose a 

father at any age, and to any cause, 

but to physically watch a loved 

one be slowly worn away by such a 

relentless disease is soul destroying 

and few words can describe the 

emotional adversity. 


“He never 

stopped travelling 

with my mother, 

he never stopped 

working and 

growing his own 

company” 

Louis Woodcock 

and wife Carol 

It is difficult when I look back at my 

father’s battle with cancer, but when 

I do I am comforted by one lasting 

memory – that throughout his entire 

struggle there was not a day went 

by that my father let cancer get the 

better of him. He would get out of 

bed each morning as if there was no 

cancer, no pain, no discomfort. He 

never stopped travelling with my 

mother, he never stopped working 

and growing his own company (BDL 

Hotels); even after the cancer took 

his left arm he still did everything 

the way he had before. He even 

still drove his beloved 1927 

Bentley! 

After his passing my brother 

and I found an old blue file 

in his home office simply 

entitled Peking to Paris. Within 

this file were all the necessary 

forms and documents required 

to compete in the rally along with 

a short note addressed to us both. 

Originally my dad had planned 

to compete with both my 

brother and I. As time 

went on I sense even 

he feared he would 

not be able to make 

it, but it still drove 

him to go on with 

his preparations. It 

was upon reading 

this note that my 

brother and I knew 

we had to finish 

what he had begun, 

for all our sakes. 

Although my father is no 

longer with us I would like to believe 

that on the 28 May 2013 as we stand 

at the footsteps of The Great Wall of 

China and look out at the long road 

ahead we are not alone and in some 

way he is still with us giving us all 

the help we will need to complete 

such a challenging journey… from 

Peking to Paris. 

We hope to raise £50,000 for 

Sarcoma UK - to donate or to 

simply learn more about 

Team Woodcock please visit 

www.teamwoodcockp2p.co.uk 

You are running from John 

O’Groats to Land’s End, doing a 

marathon a day - Why 

The reason I’m doing the Run from 

John O’Groats to Land’s End is 

simple – to prove that any barrier can 

be overcome. I’m living proof that 

having a disability shouldn’t stop 

you from achieving your goals. I’m a 

strong believer in living a life without 

limits; what my life has been about 

is accepting who you are and making 

the most of it. Once you’ve done 

that, you can push the barriers as far 

as they’ll go. 

Winning a Gold medal at the 2012 

Paralympics in London was a stepping 

stone on this mission and the Run 

is the next stage for me on this. 

Hopefully I can pass on a message of 

hope through my dedication to sport 

and be an inspiration to all. 

Where did the idea for the Run 

come from 

My inspiration is a man called Terry 

Fox. Terry was an amputee with 

sarcoma cancer who attempted to 

run the breadth of Canada before his 

death at the age of 22. Sadly he never 

completed his challenge. The idea of 

a run the length of Britain came from 

him and has been in my mind for 

about five years. 

Who are you doing the Run for 

I’m running for two charities, 

Sarcoma UK and Scope. Both are 

fantastic causes and I chose them for 

specific reasons. 

I had never run a mile when I first 

met Simon [Mellows], my close friend 

and mentor. Sadly, Simon died of 

chondrosarcoma and is a constant 

inspiration on my incredible journey 

from running my first marathon, 

to becoming the marathon world 

record-holder for leg amputees, and 

more recently, Paralympic 200m 

champion. Simon and Terry became 

a major driving force behind my Run. 

Sarcoma UK is the main charity in the 

UK dealing with all types of sarcoma, 

and aims to achieve the best possible 

standard of treatment and care for 

patients with sarcoma. 

Scope’s vision is also very close to my 

www.sarcoma.org.uk

Fundraising 

Marathon man 

Remember the excitement when he won gold in the 200m Paralympics last year Richard Whitehead MBE, 

Sarcoma UK’s first Patron, reveals the details of his challenge this year: 40 marathons in 40 days, with a target 

to raise £1 million for charity! www.richardwhiteheadrunsbritain.com 

heart. Its vision is a world 

where disabled people 

have the same 

opportunities as 

everyone else. It 

is important to 

drive change 

across society 

also. 

Who is 

supporting 

the Run 

Virgin Media 

are the title 

sponsors of Richard 

Whitehead Runs 

Britain – and it’s safe 

to say that without their 

support the Run simply couldn’t 

happen. 

Virgin Media are committed to a 

programme of accessibility, and the 

Run is just one of the ways that this 

manifests itself. 

How much do you hope to raise 

It’s very difficult to predict, but 

the aim is £1 million. Members 

of the public can go to www. 

richardwhiteheadrunsbritain.com 

to register interest in supporting 

me on the Run. This can be one of 

three ways. 

Richard in 

training! 

country and will be visiting various 

locations on the way – the 

route will be available on my 

website! 

How are you 

preparing for the 

Run 

This will be the 

biggest challenge 

I’ve ever attempted 

More about Richard... 

What is the reason for 

your disability 

I am a congenital above the 

knee double amputee, which 

means that I was born with my 

disability. 

How did you first get into sport, 

and then into marathon running 

My parents first encouraged me 

to get involved in sport. They 

introduced me to mainstream clubs 

because they wanted me to get 

involved. I started with swimming 

and gymnastics in local clubs and 

progressed from there. There was a 

great support mechanism in those 

clubs, they were all very friendly 

and encouraging and that gave me 

a great starting point. 

not just physically but mentally as 

well. I’ll need to be in top physical 

condition, I have a great team 

behind me to make sure I’m in the 

shape of my life. And then on the 

mental side, we are creating various 

strategies – but the best way of 

combating any mental stress is 

seeing people cheering me on! I’ll 

need to dig deep, but I’m confident 

I’ll succeed. 

How has running changed 

your life 

When I first began training for the 

marathon I did my running at night. 

I was very unsure about what kind 

of reaction I would get from the 

public. It’s not every day that you 

see someone running outside with 

no legs. Like any other runner it’s 

tough when you begin training 

and you require a lot of motivation 

to train hard. Mentally it is just 

as tough and I needed to remain 

strong for the challenges ahead. 

I always wanted to be accepted as an 

athlete at races and not to be singled 

out as a disabled runner. Running 

has given me a great opportunity to 

hopefully inspire others to overcome 

barriers set by others. 

I hadn’t run until 2004 because 

1) A simple donation 

up until then the technology was 

Can you describe the feeling of 

2) Register to run with me 

very expensive, but I needed a new 

running with artificial legs 

(Marathon, 10km, 5km and 

challenge so joined an athletics 

When running on my flex runs 

1km distances) 

club. I ran my first marathon in 

(artificial legs) I feel a sense of 

3) Join me in the family fun 

5 hours and 19 minutes, but I am 

freedom. The technology has 

day event, in my hometown, 

now the Marathon World Record 

enabled me to realise an ambition of 

Nottingham on Sunday 

holder for a leg amputee with a 

being able to run and I have found 

8 September. 

time of 2 hours 42 minutes and 

great reward from being able to do 

52 seconds. 

so. When I run, I run with no knee 

When is the Run and what is the 

I am also the leg amputee World joints so my legs are straight. This 

route 

Record holder for the Half 

means that I run differently to other 

I’ll be starting in mid-August and 

Marathon with a time of 1 hour runners and use twice the amount of 

the Run should take around 40 days. 

and 14 minutes. 

energy to run. 

I’ll be running down the west of the 

7 

www.sarcoma.org.uk Connect • Sarcoma UK • Spring/Summer 13

Sarcoma Awareness Week 


“Speak out!” 

Feel inspired!... 

Probably the 

toughest event 

on the planet! 

A challenge made for big 

kids who are tough enough 

to reduce themselves to 

screaming like little girls! 

Jumping into a pool of ice 

might not sound appealing 

but it certainly makes 

you feel alive. Repeated 

jolts of electricity as you 

crawl through water isn’t 

something you’ll want to 

do daily, but it’s definitely 

funny to see your mates 

yelping and squirming their 

way through it! 12 miles and 

22 obstacles of facing fears. 

Drudging through mud. 

Jumping and falling into 

cold and muddy water. And 

lifting and pulling anyone 

who needs it isn’t easy, but 

it makes for great memories! 

Michael Maguire 

There are many ways in which you can help us raise awareness during this 

week and beyond! Remember the ‘Many faces of sarcoma’ online photo 

montage of anyone touched by sarcoma Thanks to over 300 of you – 

patients, carers, friends, family and healthcare professionals who put your 

picture up on our website. It’s back again for Awareness Week 2013, but 

with a twist! This year, we are asking you to become a ‘Sarcoma Voice’ 

and “Speak out!” about your personal experience of sarcoma (postcard 

enclosed). Every face tells a story – log on to www.sarcoma.org.uk/voices 

and share yours today! We want everybody to get on board and shout 

louder than ever before! 

sarcoma voices “speak out!” 

Are you enthusiastic 

Would you be willing to share your sarcoma experience 

Who 

Sarcoma Voices are people 

like you, who have been 

affected by sarcoma cancer, 

either as a patient, carer 

or family member, who 

want to share their story 

to help raise awareness and 

improve services. 

Sarcoma Voices are people with 

experience of any type of sarcoma – 

bone, soft tissue and GIST. They are 

from any age group and live anywhere 

in the UK.. 

What can you do 

• Use your experience to improve 

sarcoma services 

• Use your experience to raise 

awareness of sarcoma so that more 

people understand more about it 

17-23 June 2013 

The bone & soft tissue cancer charity 

do it! 

how do i get involved 

Log on 

www.sarcoma.org.uk/voices and tell us your 

story and add your photo! 

Email us 

voices@sarcoma.org.uk with a short 

summary of your personal sarcoma story and 

contact details 

Phone us 

020 7250 8271 to talk to a member of 

the team 

8 


“Following my sarcoma diagnosis and treatment, I was motivated to set up a sarcoma 

support group with the assistance of Sarcoma UK and my consultant oncologist. The 

group gives members the chance to share experiences and identify areas of common 

concern around, for example, information provision and rehabilitation services. The 

group has begun to use its collective ‘voice’ to work collaboratively with sarcoma 

health services to improve patient experiences and outcomes.” 

Tony Grover, East Anglia sarcoma support network 

www.sarcoma.org.uk



Face your fears: freefalling 

I7 April 2013... That’s a date we will never forget; 

and if the date does manage to fade away from 

our memories, the experience we shared that day 

is as set as the grooves one would find on a rock.... 

permanent. 

Our group of jumpers, “The Earth Watchers”, 

included Mrudula Jadhav, Ketaki Purohit, Pranali 

Deshmukh, Sherron Furtado and myself. We could 

hardly dare imagine what we would feel like during 

those few seconds of free-fall! The 45-minute wait 

after getting registered and harnessed-up at the 

meet-and-greet just fed our collective anxiety and 

while the shouts and screams of plunging jumpers 

did not help that nagging feeling of “It’s still not 

too late to quit!”, the smiles on their faces 

just encouraged our curiosity to hold on 

to the mission at hand. On top of the 

Transporter Bridge, it was an altogether 

different story; at 160ft above ground you tend to see the world 

in a different light and we realise we might be a little in over our 

heads. But we remembered that we were expressing our support 

for the brave individuals who face fears similar to ours; similar yet 

more real and serious than anything we had awaiting us. When 

someone faces fear and conquers it on a day-to-do basis, our 

concerns with taking a leap into the known appeared trivial... and 

trivial it was indeed! 

The seemingly never-ending seconds of free fall... the feeling of the 

wind getting sucked out of you... the tug of the rope at your ankles 

and your body going stiff... And when you realise that you don’t 

have to fight it, but rather work with it... That’s not a life-changing 

experience, it’s a life making experience! To all those who fight the 

good fight; you have our support and respect and you are not alone. 

Together we will fight sarcoma in whichever way we can!. 

Aravind Rajagopal 



First army finisher – support from the 

Falkland islands 

Running the Port Stanley marathon was one on the 

toughest things I have done to date. I trained for just 

four weeks beforehand after I found out that my younger 

sister Verity had a nasal sarcoma. It was diagnosed 

as quite an aggressive cancer and grew at an alarming 

rate. I thought that the marathon would be a perfect 

opportunity to raise awareness and hopefully raise her 

spirits a bit and help her in her fight against cancer. I 

found out about Sarcoma UK and immediately set up 

the webpage through JustGiving. My 

fiancée Alice publicised the website 

amazingly and filled it with pictures 

of me and Verity. 

The response that we got was 

amazing. We were all overwhelmed 

by the kind donations and messages 

of support that we received from 

family and friends old and new – not 

to mention the kindness of strangers 

from all over who showed their 

support for our cause. In the end 

we raised £3,285 for Sarcoma UK 

including one mystery, anonymous 

donor of £510. The last few miles of the marathon were 

incredibly tough, but I was undoubtedly spurred on by 

all the support that we had received and the inspiration 

that is my little sister Verity, who manages to stay 

positive through thick and thin and is one of the bravest 

people I have ever met. I ran in a time of 3hrs 19minutes 

and I have no doubt that I shaved a fair few minutes off 

through strength that I drew from my sister. When I 

returned to the UK, Verity was finally operated on. The 

surgeons at the Royal Marsden have done an excellent 

job and completely removed the tumour from her face. 

Early signs are very encouraging and she now faces a 

course of either chemo or radiotherapy. It has been a 

rough ride so far but we are increasingly positive. I was 

incredibly proud to run the marathon for Sarcoma UK 

and for my sister Verity and I wholeheartedly thank all of 

those who helped and supported us along the way. 

David Landon 

rolling into the right 

side of the weekend! 

Sarcoma UK came to Bristol on the 

do it! 

evening of Friday 3 May. After a 

london-brighton 

long week’s hard work in the office 

the descent began to the local 

sunday 8 september 2013 

pub, Slug and Lettuce St Nicholas 

Street. There we were armed with 

Snap up one of our places in 

Sarcoma UK literature, T-shirts, wrist Tabitha and Peter 

this momentous cycle ride, 

bands, jewellery and DJ H’Inglish 

power to the pedal! 

to start the weekend vibe. Guessing games to win a bottle 

Psyche yourself up to sign up 

of bubbly, raffle tickets galore with wonderful prizes saw us 

for the 54-mile for Sarcoma UK! 

raise £200 for Sarcoma UK. Thank you to everyone involved 

Registration Fee: £25 

to make this small affair a successful one. We look forward to 

seeing you at the next event. 

Sponsorship Level: £100 

Tabitha Taya 

Book your place today! www.sarcoma.org.uk/Fundraising 


Research 

New sarcoma research grants 

Following our rigorous peer review process and meetings of our Research Advisory Committee and Board of 

Trustees, four of the highest quality sarcoma research projects from across the UK were selected for grants 

worth a total of £100,000. The projects range from working directly with sarcoma patients to improve 

rehabilitation after treatment, through to research carried out in the lab to discover new drug targets that may 

develop into new treatments for patients in years to come. They will be carried out in centres of excellence 

across the UK from London to Aberdeen. Read on to find out more... 

10 

Looking for new targeted treatments for 

high grade sarcoma… 

Validation of clinically relevant oncogenic 

receptors in high grade human sarcoma as 

potential drug targets 

Professor Ted Hupp, University of Edinburgh 

Funding: £17,000 for one year 

Despite advances in conventional chemotherapy and 

radiation, complete cures for most cancer types, including 

sarcoma, remain elusive. The challenge is to develop 

highly targeted therapies that kill cancer cells but leave 

normal cells healthy. A big advance in cancer treatment in 

the past 20 years has been the discovery 

and application of ‘targeted 

therapies’. Targeted therapies 

are medicines that 

specifically act on parts 

of the sarcoma cells and 

either kill the cells or 

stop them growing. As 

they act preferentially 

on the sarcoma 

cells they cause less 

damage to normal 

calls and have fewer 

side effects. So far, the 

use of targeted therapies in 

sarcoma has been limited. This 

team in Edinburgh plans to rectify 

this situation. 

The first step in producing targeted therapies is to identify 

‘drug targets’ by using cutting edge instruments that can 

capture targets from very small biopsy samples. They 

will be focusing on ‘high grade’ sarcoma, as this is one 

of the most aggressive types affecting a relatively large 

number of people. This project builds on pilot data that 

has already identified three promising ‘drug targets’ from 

biopsies. Professor Hupp and his team aim to investigate 

these targets to determine whether they should be 

‘shortlisted’ into a larger therapeutics programme aimed 

at improving the health and longevity of patients with 

high grade sarcoma. 


“Professor 

Hupp and his team 

aim to investigate these 

targets to determine whether 

they should be ‘shortlisted’ into 

a larger therapeutics programme 

aimed at improving the health 

and longevity of patients 

with high grade 

sarcoma” 

Dr Henning 

Wackerhage 

and his team in 

Aberdeen 

Investigating Rhabdomyosarcoma… 

TAZ & Rhabdomyosarcoma: TAZ expression 

in human samples, TAZ transformation of 

myoblasts and YAP/TAZ drug discovery 

Dr Henning Wackerhage, 

University of Aberdeen 

Funding: £24,080 over two years 

This project is based at the University of Aberdeen, but 

will involve collaborators from London (Institute of 

Cancer Research) and as far afield as Switzerland (Swiss 

Institute of Bioinformatics). Rhabdomyosarcomas are 

cancers where cells resemble dividing muscle cells. These 

cancers are aggressive and occur mainly in children. In 

this project, Dr Wackerhage and his team will study a 

gene called TAZ that they have found to be highly active 

in rhabdomyosarcomas. 

During the project, the team will study various aspects of 

the relationship between TAZ and rhabdomyosarcoma. 

They will then go on to screen around 300 natural 

compounds to search for ones that will inhibit this 

gene, as such compounds could be future drugs to treat 

rhabdomyosarcoma patients. 

Further, they will develop 

assays (experimental 

procedures) that can 

be used in future to 

test for drugs that 

could be used to treat 

rhabdomyosarcoma. 

“They will 

screen around 

300 natural 

compounds to search 

for ones that 

will inhibit this 

gene” 

www.sarcoma.org.uk

Research 

The search for new chordoma treatments… 

New therapeutic agents for chordoma 

Professor Adrienne Flanagan, 

University College London Cancer 

Institute 

Funding: £28,000 over two years 

Professor Flanagan is considered a leading expert 

in the field of chordoma research, both in the UK and 

internationally. Chordoma is a 

primary cancer of the bone 

that occurs in people of 

all ages. Due to the 

size, location and 

“Thanks to 

these efforts, the 

scientific community 

now has the opportunity for 

the first time to test compounds 

on a number of chordoma 

cell lines to see if there is 

a drug that can stop 

the tumours 

growing” 

nature of these 

tumours, surgeons 

can often find them 

difficult to remove 

fully. Despite 

this, surgery is 

the mainstay of 

treatment because 

the tumours are 

resistant to radioand 

chemotherapy. This 

project is undertaking lab-based 

experiments to identify new therapies to treat this 

disease. Professor Flanagan and her team have made 

5 chordoma cell lines (chordomas that grow in the 

laboratory and can be used as models of the disease). 

Thanks to these efforts, the scientific community now 

has the opportunity for the first time to test compounds 

on a number of chordoma cell lines to see if there is a 

drug that can stop the tumours growing. 

Richard 

Whitehead with 

grantholders, 

Craig Gerrand 

and Sherron 

Furtado 

tracking equipment, will provide new, meaningful 

information about physical activity and functioning 

in adults who have been treated for lower extremity 

bone or soft tissue sarcoma. Following a successful 

application to Children with 

Cancer to investigate 

these technologies in 

survivors of childhood 

bone and soft tissue 

sarcoma, Sarcoma 

UK is providing the 

Newcastle team with 

a further grant to 

extend their findings 

to cover all age groups. 

“Researchers 

in Newcastle have 

been working on two 

new devices which 

can directly measure 

physical functioning 

in hospital and at 

home” 

Researchers in Newcastle 

have been working on two new 

devices which can directly measure physical functioning 

in hospital and at home. One is a digital activity monitor, 

similar to a pedometer, and the other is a wireless 

motion tracking system, similar to those used in the film 

industry. 

If this study shows the devices to be useful, there is a 

good chance that the use of these devices would become 

a more standard part of the assessment of physical 

functioning in patients after treatment for sarcoma. 

This in turn may help us better understand the impact 

of different treatments on the lives of this complex and 

varied group of patients. 

They will study the effects of approximately 1000 

different compounds on the 5 cell lines they have 

created, and on a further 3 chordoma cell lines that 

others have made. Any compounds that look promising 

will be tested in various ways using forefront technology. 

They hope to find a small number of ‘hits’ that will stop 

the tumours growing, and this will lead to clinical trials 

where drugs related to the successful compounds could 

be used in the treatment of chordoma patients. 

Studying the impact of treatment on 

sarcoma survivors… 

Evaluation of physical functioning 

in survivors of bone and soft tissue 

sarcoma – a feasibility study of two new 

technologies 

Mr Craig Gerrand, The Newcastle Upon 

Tyne NHS Foundation Trust 

Funding: £30,040 for six months 

The aim of this project is to test whether two new 

devices, a digital activity monitor and Xsens motion 

www.sarcoma.org.uk Connect • Sarcoma UK • Spring/Summer 13 

11

Support & information 

Support groups around the UK 

Join the Sarcoma UK community! 

Scotland – Glasgow 

Meets: Third Wednesday of every month, 2.30pm - 4pm 

Venue: Maggie’s Centre, Gartnavel General Hospital, 1053 Great 

Western Road, Glasgow G12 0YN 

Contact: Dawn Currie, Sarcoma CNS, 0141 301 7599 

Fiona Murdoch, Maggie’s Centre, 0141 330 3311 (Mon-Tues) or 

0141 357 2269 (Weds-Fri) 

Newcastle and Tyneside 

Meets: First Monday of every month, 7-10pm 

Venue: Function Room, Education centre, Freeman’s Hospital 

Contact: Cuth Earl, Group secretary, 0191 520 1824 

E: cuth_earl@yahoo.com 

Merseyside and Cheshire Sarcoma Support Group 

Meets: 3 - 4 times a year, 4-6pm 

Venue: Roy Castle Foundation, 200 London Road, Liverpool L3 9TA 

Contact: Sarah Massey, Acting Sarcoma Nurse Specialist, 0151 7065997, 

mcsarsup@gmail.com 

Rob Myers, Patient, 07710 123960, rob.myers51@googlemail.com 

Lesley Abraham, Patient and Sarcoma UK Trustee, 

lesleyabraham@hotmail.com 

Always check 

Exeter 

with your local group 

Meets: Next date to be confirmed, likely to be in direct before attending, in 

October. 10.30am – 12.30 pm 

case details have changed. 

Venue: FORCE cancer centre, Corner House, 

Barrack Road, Exeter EX2 5DW 

This information is provided by 

Contact: Robert Oliver, 01392 406 151 

the individual support groups 

Manchester 

and is the latest we 

Meets: On the fourth Tuesday of May, Sept and Nov, have received from 

from 7pm to 8.30pm. 

the groups. 

Venue: Manchester Royal Infirmary, Seminar Room 1 

(adjacent to Ward 1) from 7pm 

Contact: Lena Richards, Specialist Sarcoma Physiotherapist at the 

Christie, 0161 446 3795 and 0161 446 3000 (bleep 12539) 

Ann Buchan, Sarcoma Clinical Nurse Specialist at the Christie, 

0161 446 3094 or 0161 446 3000 (bleep 12906) 

Helen Murray, Sarcoma Clinical Specialist Nurse at the MRI, 

0161 276 6167 (Pager 07659 537596) 

Maxine Cumbo, Specialist Sarcoma Physiotherapist at the MRI, 

0161 701 0267 or 0161 276 1234 (bleep 1954) 

Contact: Vicky Wren, Associate Advanced Nurse Practitioner, 

01865 738 282 or 01865 741 155 Bleep 173, vicky.wren@ouh.nhs.uk 

Wendy Perrin, Specialist Nurse Practitioner, 01865 737 861 or 

01865 741 155 Bleep 221, wendy.perrin@ouh.nhs.uk 

Website:www.oxfordsarcoma.co.uk 

Bristol and South West England 

Meets: Third Monday of alternate months, 4-6pm. 

Venue: Jones Lang LaSalle (Boardroom), Berkley Square (top left hand 

corner of square), Clifton. Bristol BS8 1HU 

More information: Next meetings – 17 September and 19 November 

Contact: Leigh Collins, Saroma CNS, 0117 342 4849, 

leigh.collins@UHBristol.nhs.uk 

Chris Millman, Sarcoma CNS, 0117 340 3381, 

christine.millman@nbt.nhs.uk 

Website: www.bristolsarcomasupport.co.uk 

South of England 

Meets: Southampton (July 10th, Nov 13th); Bournemouth (June 22nd, 

Sept 11th ). The group is from 2-4pm 

Venue: Sunrise of Bassett, 111 Burgess Rd, Southampton SO16 7AG, 

(02380 799449) and also in Bournemouth at The Grove Hotel, 

2, Grove Rd, Bournemouth BH 1 3AU (01202 552233) 

www.thegrovebournemouth.co.uk 

Contact: CNS Helen Coundley (Southampton) and Imogen Batty 

(Royal Bournemouth Hospital –Nurse Practitioner 01202 704938) 

W: www.sarcoma-support-south.org.uk 

London 

Meets: Alternate first Wednesdays and Thursdays (once a month) 4-6pm. 

Venues: First Wednesdays of alternate months: Ground Floor Physio 

Gym in The Markus Centre, Royal Marsden Hospital, London SW3 

6JJ. (NB: Easiest access to this). 

OR First Thursdays of alternate months: The Seminar Room, RNOHT, 

Central London Outpatient assessment Centre, 

45 Bolsover Street, London W1W 5AQ 

Website: www.londonsarcomasupport.net 

East Anglia Support Group 

Meets: Last Friday of every month 1-3pm 

Venue: The Big ‘C’ Centre, Norfolk and Norwich Hospital, 

Colney Lane, Norwich, NR4 7UY 

Contact: Tony Glover on 07941 434351 or eassn@talktalk.net 

12 

Sheffield (and surrounding areas) 

Meets: Second Friday of the following alternate months (January, 

March, May, July, September and November), afternoon and 

occasionally evening 

Venue: Cancer Support Centre, 23 Northumberland Road, just behind 

Weston Park Hospital, Sheffield or Royal Hallamshire Hospital 

Contact: Maxine Eades, Clinical Support Nurse 

E: maxine.eades@sth.nhs.uk 

East Midlands and eastern counties 

Meets: Third Tuesday of every month, 5-7pm 

Venue: Helen Webb House, 35 Westleigh Road, Leicester, LE3 0HH 

E: emssg@live.co.uk 

Oxford (including Thames Valley, south and parts of 

south west England) 

Meets: First Thursday of every month, 2-4pm 

Venue: The Oxford Centre for Enablement (OCE), 

Nuffield Orthopaedic Centre, Windmill Road, Oxford OX3 7HE 

More info: Contact below to find out which room/confirm dates etc. 


Rehabilitation factsheet 

We are currently developing our range of information materials 

so we can help provide an even greater source of support. 

We have recently updated our popular factsheet, 

Rehabilitation for sarcoma patients. 

This factsheet is for anyone who has been 

diagnosed with sarcoma. It explains what services 

are available, how they can benefit your recovery 

and how you can be referred to these services. 

Available July 2013 

Pre-order your free copy 

on 020 7250 8271 

or info@sarcoma.org.uk 

www.sarcoma.org.uk

Information Research 

Ten years on… 

Our founder, Roger Wilson CBE, looks back at Sarcoma UK’s newsletter 

How can it be ten years ago 

that we sent out the first 

sarcoma newsletter! Our 

approach was unusual in the world 

of cancer patient information and 

support. Most small cancer 

patient organisations were 

membership organisations, 

run like a club. They 

relied on their members 

for funding and their 

ambitions were limited, 

even if admirable. We 

knew that there were 

very few sarcoma 

patients and that they 

were widely dispersed. 

We knew that quite 

often patients did not 

meet others facing a 

similar diagnosis. We 

also knew that many of 

the leading doctors treating 

sarcoma wanted sarcoma specific 

information for their patients. If we 

provided it, they would distribute it. 

We decided to focus on information 

and foster contact between patients. 

We set out to deliver information 

to a standard which respected our 

readers. To do that, design and 

content were important and we felt 

that print quality had to be the best 

we could afford. Leading doctors 

gave us information and checked the 

medical accuracy of our articles. The 

first edition came out in April 2003 

and was distributed by specialist 

doctors and the (then very few) 

sarcoma specialist nurses. 

However good the newsletter 

looked the organisation behind it 

(Sheelagh and myself) was seriously 

challenged! The kitchen table was 

submerged in paper – envelopes, 

labels, stamps. Journeys to the 

car with boxes of newly printed 

newsletters, parking on the double 

yellow lines by the Post Office, the 

adventure grew with each edition. 

We had a commitment as a patient 

Honorary 

President, 

Roger Wilson 

CBE with his 

wife, Sheelagh 

and a carer to help things change, 

but we really did not know how this 

would help, we just believed it could. 

Looking back at the content of the 

first edition it seems very naïve 

today. We reported on a one-day 

meeting at the Royal Marsden 

hosted by Professor Ian Judson for 

50 specialist clinicians. We looked 

at the incidence of sarcoma – the 

best data we could find suggested 

about 1800 cases per year in the 

UK, but we did say that seemed to 

be an under-estimate. We looked 

at what a MultiDisciplinary Team 

(MDT) meant for patients (and 

got ticked off by a radiologist 

for confusing radiographers and 

radiologists!). We noted that where 

there was a regional centre offering 

specialist treatment, the process of 

diagnosis and the time to treatment 

was better than where there was 

no centre. We looked at research 

and identified a number of new 

drugs in clinical studies. Looking at 

these drugs today one of them has 

failed to show any benefit, two of 

them are now licensed and are 

mainstays of treatment, and a 

fourth is currently in a major 

study. 

As a snapshot of where 

we were in 2003 it is 

interesting to make a 

comparison with today. 

Professor Judson’s 

meeting has evolved 

to become the British 

Sarcoma Group – with 

over 250 delegates at its 

last three day conference in 

March. 

The work of the West Midlands 

Cancer Intelligence Unit (page 

15) as a sarcoma lead registry for 

the National Cancer Intelligence 

Network tells us that the incidence 

of sarcoma in the UK is at least twice 

that reported in 2003. This does not 

mean there are many more cases – 

it is just that they are being better 

identified and the data submitted 

about them to the cancer registries 

is accurate and more complete. 

The MDT is at the heart of all 

treatment. The majority of patients 

now go for treatment at a centre 

with a specialist MDT because of the 

NICE Guidance which was developed 

between 2004-2006 by a small 

team of specialist doctors, patients 

and NHS managers. 

And what you are reading now, is 

our latest newsletter, Connect – 

ten years on! Collated and edited 

by a team of professional staff at 

Sarcoma UK’s Headquarters and over 

5,000 copies distributed. Something 

tells me that these ones are not all 

hand stamped! 


News 

14 

News round-up 

Find out what’s been happening in the world of sarcoma and 

see how you can get involved! 

Patients & Relatives: 

Lectures & Forums 

for those we serve 

Venue: Nottingham Conference 

Centre, United Kingdom 

Date: 8 September 2013 

The Centre for Spinal Studies and 

Surgery of Nottingham University 

Hospitals would like to invite you 

to our NSpine patient day! This will 

take place on Sunday, 8 September 

2013 at the Nottingham Conference 

Centre located in the heart of the 

city centre. This day will be full of 

lectures on popular spinal conditions 

and coping strategies, as well as 

forums led by our participating guest 

charities. These lectures will be 

hosted by our own faculty, as well as 

patient organisation representatives, 

addressing any questions you may 

have about the spine. This is a great 

opportunity to meet our faculty and 

find out what support is available 

for you. 

Thanks to the exclusive sponsorship 

of the League of Friends of the 

Queen’s Medical Centre, 

registration is free of charge; 

however we will be accepting 

donations which 

will go to all 

participating 

charities 

present on 

the day. 

Registration 

is now open, 

come along and 

meet Sarcoma UK! 

“Highly 

motivating to 

meet patients 

and share insights 

into their challenges.” 

Challenges in Sarcoma 

attendee 

Visit www.nspineforpatients.co.uk 

for more information! 


“Very 

valuable exchange 

of experience 

into their 

challenges.” 


attendee 

British Sarcoma Group 

conference report 


East Midlands Conference Centre, 

Nottingham - 27 February 2013 

In partnership with Sarcoma UK, 

GIST Support UK, and Bone Cancer 

Research Trust 

Almost 200 delegates took part in a 

working day that brought together 

people affected by sarcoma and 

professionals in the sarcoma field. 

Hosted by the British Sarcoma Group 

as part of its Annual Meeting, this 

was the first time that a whole day 

was dedicated to sessions for patients 

and professionals together. 

Delegates were people personally 

affected by sarcoma who actively 

raise awareness, campaign, 

run support groups, or act as a 

representative on health bodies. 

The day provided opportunities 

for them to meet professionals in 

the sarcoma world and take part 

in interactive workshop sessions. 

Liposarcomas account for 11-12% 

of all soft tissue sarcomas. 

They develop from the fat 

cells (adipocytes) found all over 

the body, and so can occur at any 

anatomical site. The overall age 

standardised liposarcoma incidence 

rate has increased significantly over 

the last 25 years, from 3.8 cases 

per million in 1985-87 to 6.2 cases 

per million in 2007-09 (Figure 1). 

Liposarcoma incidence rates are 

significantly higher in males than 

females, with age standardised 

rates of approximately 8.0 cases per 

million in males and 4.4 cases per 

million in females in 2007-09. Further 

research is required to investigate the 

significant increases in male agestandardised 

incidence rates in more 

recent years. 

Historically, most liposarcomas 

were classified as liposarcoma 

NOS (not otherwise specified) 

or myxoid liposarcomas. More 

recently, three major specific 

sub-types of liposarcoma have 

been identified: well-differentiated 

liposarcoma (now synonymous 

with atypical lipomatous tumour), 

pleomorphic liposarcoma and 

myxoid liposarcoma. There were 

6,370 liposarcomas diagnosed in 

England between 1985 and 2009. Of 

these, 49% were liposarcoma NOS, 

24% were myxoid liposarcoma, 14% 

were well-differentiated liposarcoma 

and the remaining 13% were 

pleomorphic liposarcoma. In 2007- 

09 the incidence rates of the four 

main sub-types were significantly 

different, with liposarcoma NOS 

being the most common (2.5 

per million), followed by welldifferentiated 

liposarcoma (1.5 per 

million). Myxoid liposarcoma and 

pleomorphic liposarcoma were the 

least common specific types, and 

showed very similar incidence rates 

(1 per million). 

Liopsarcomas occur in adults of 

all ages, but are most common in 

people aged 50-79 years (Figure 

2). They are exceptionally rare in 

people under the age of 30. The 

difference between male and female 

liposarcoma rates becomes greater 

with increasing age. Age specific 

www.sarcoma.org.uk

Statistics 

Liposarcomas 

The West Midlands Intelligence Unit continues its articles for Connect, with a 

specific focus on soft tissue sarcomas – Liposarcomas 

incidence rates in males climb at 

a faster rate than female rates, to 

the extent that incidence rates in 

males are double those of females 

in patients aged 75 years and over 

(Figure 3). 

Liposarcomas most commonly arise 

in the limbs (35% of diagnoses), 

the connective tissue of the trunk 

(20%) and the retroperitoneal cavity 

(20%).This distribution is very 

similar for all four common subtypes, 

with the exception of myxoid 

liposarcoma, 55% of which arise in 

the limbs and less than 10% in the 

retroperitoneum (Figure 4). 

Survival rates for patients 

diagnosed with liposarcoma have 

improved significantly since the mid 

1990s. 

Key facts 

• Most common sites of diagnosis: 

soft and connective tissue of the 

trunk, limbs, retroperitoneum 

• 6,370 liposarcomas diagnosed in 

England 1985-2009 

• Age standardised incidence rate: 

6 per million persons 

• Number diagnosed in 2008 and 

2009: 398 and 361 

• Sub-types: 

– Liposarcoma NOS: 

3,153 diagnosed 1985-2009 

– Well-differentiated 

liposarcoma: 

877 diagnosed 1985-2009 

– Pleomorphic liposarcoma: 

843 diagnosed 1985-2009 

– Myxoid and round cell 

liposarcoma: 

1,498 diagnosed 1985-2009 

Figure 1: Variation in age standardised liposarcoma incidence 

rates with sex (England: 1985–2009) 

Figure 2: Variation in number of liposarcoma cases with sex and 

age group (England 1985-2009) 

Age standardised rate 

(per 1,000,000 persons) 

10 

8 

6 

4 

2 

Males 

Females 

Number of cases 

500 

400 

300 

200 

100 

Males 

Females 

0 

85-87 

87-89 

89-91 

91-93 

93-95 

95-97 

97-99 

99-01 

01-03 

03-05 

05-07 

Year of diagnosis (3-year rolling) 

07-09 

0 

0-4 

5-9 

10-14 

15-19 

20-24 

25-29 

30-34 

35-39 

40-44 

45-49 

50-54 

55-59 

60-64 

65-69 

70-74 

75-79 

80-84 

85+ 

Age group 

Figure 3: Liposarcoma age specific rates in males and females 

(England: 1985-2009) 

Figure 4: Liposarcoma variants in the most common anatomical 

sites (England: 1985–2009) 

Age specific rate 

(per 1,000,000 persons) 

25 

20 

15 

10 

5 

Males 

Females 

Well 

differentiated 

liposarcoma 

Pleomorphic 

liposarcoma 

Myxoid 

liposarcoma 

Liposarcoma 

NOS/rare 

312 

336 

1090 

885 

50 155 

573 

142 

0 20 40 60 80 100 

112 

Diagnosed (%) 

188 

681 

195 

272 

79 61 

51 

130 

330 

0 

0-4 

5-9 

10-14 

15-19 

20-24 

25-29 

30-34 

35-39 

40-44 

45-49 

50-54 

55-59 

60-64 

65-69 

70-74 

75-79 

80-84 

85+ 

Age group 

Other sites Male genetalia Gynaecological organs 

Skin Organs within trunk Breast GI tract 

Connective tissue of trunk Retroperitoneum 

Head, face and neck 

Limbs 

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