The Swallows Australian Edition Magazine

CUP
- Robyn Wagner
In January 2012, I found a lump under my jaw,
like a pea under my skin. I was immediately
sent for a scan and biopsy. The results came
back as a SCC (Squamous Cell Carcinoma).
The tests showed this was my secondary
cancer. After all available tests, there wasn't
any sign of where my primary cancer was.
Finding out I had cancer was devastating, but
not knowing where it was raised even more
emotions – all I could think was ‘how can they
treat me correctly if they don’t know where all
my cancer is?’
I was diagnosed with Cancer of Unknown
Primary, or CUP. It’s one of the forgotten
cancers that is drastically under-researched
here in Australia. Statistically I was told I had
65% chance of surviving three years, and 85%
chance of surviving five years. Weeks and
weeks of tests followed but my primary site
was never found. I eventually had a full neck
dissection, followed by six weeks of daily
radiation on my neck. I suffered many after
effects from the radiation, especially tingling in
my jaw and constant dry mouth.
People diagnosed with CUP tend to feel pretty
alone and confused. CUP is not as well known
by members of the public as other cancers
such as breast, lung or prostate. It made telling
my family and friends even more confusing – “I
have cancer but I don’t know where”.
I am a very strong minded and positive person.
I have had health challenges in the past,
having had emergency surgery for ruptured
appendicitis at 18, and my gall bladder out at
age 35, but a CUP diagnosis was a real shock.
I lost my beautiful mother 21 years ago to
bowel cancer. I often thought that if I was ever
going to get a cancer, it would be bowel. But
my determination and strong will got me
through. I always choose the high road and
focus on the positives in my life. My cancer
battle was the same. Another mountain to
conquer.
There isn’t much information available on CUP
and it was difficult trying to find someone going
through the same experience. This added to
the emotional rollercoaster of dealing with a
cancer you can’t even picture in your body.
At times, it would make me angry. How can
something so life threatening come into my
body, do damage and disappear without
leaving any trace of where it had been?
My friends ask me when I’ll be in remission and
the honest answer is probably never, because
they haven’t found all the cancer. There’s a
great need for more awareness, support and
funding for CUP, and I want to help others get
through their journey.
I met some really inspiring people following my
diagnosis. I was invited to speak at Cancer
Council NSW in Sydney as they were
conducting a research study on CUP. They
released a short video and I was able to share
my story. The videos are available on the
Cancer Council website. Going public was a
scary process. However, I am determined to
continue to advocate for Cancer of Unknown
Primary and offer as much hope and support
as I can.
I have just passed my five-year anniversary. I
am still being checked every 12 months.
When my treatment finished I made a bucket
list of all the places I wanted to see in the world
and have been in awe at what my husband and
I have achieved.
Embrace life every day. Life is a precious,
priceless gift that should never be taken for
granted.
To find out more about Robyn’s story visit
www.cupofhope.net.au
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