"In January 2012, I found a lump under my jaw."

By ROBYN WAGNER

In January 2012, I found a lump under my jaw, like a pea under my skin. After all available tests, the doctors said that it was secondary cancer, and that there was no sign of the primary cancer. Finding out I had cancer was devastating, not knowing where it was threw up even more emotions – all I could think was ‘how can they treat me correctly if they don’t know where all the cancer is?’

It’s classified as cancer of the unknown primary, or CUP. It’s one of the forgotten cancers that is drastically under-researched.

People diagnosed with CUP tend to feel pretty alone and confused as it not as well known by members of the public as other cancers such as breast, lung or prostrate. 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 and 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, due to bowel cancer and I often thought that if I was ever going to get a cancer, it would be bowel cancer.  I was six months pregnant when she passed away and grieving her loss made it difficult to enjoy the pregnancy and focus on being excited with the happiness and joy of expecting my second child.  But my determination and strong will got me through as I always choose the high road and focus on the positives in my life.

There isn’t as much information available on CUP and its hard trying to find someone going through the same experience, so it all adds 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?

All of the forgotten cancers need more support, but sadly, the survival rates for most of these cancers are low and as a result there are less people around to share their stories, raise awareness and encourage people to support these cancers, as well as the more common types.

I met some really inspiring people following my diagnosis – people who had been diagnosed with CUP and who were working with Cancer Council NSW to ensure there was information and support out there to prevent CUP patients from feeling so alone. I got involved and was filmed sharing my story. The videos are available on the Cancer Council website.

One particular lady campaigned for CUP endlessly, knocking on doors and making people listen. She really inspired me to help other CUP patients. Going public is a scary process however I am determined to continue to advocate for cancer of unknown primary and to offer as much hope and support as I can.

We need to get the message out there that more funding is needed to increase research opportunities.

Daffodil Day (Cancer Council’s key fundraising event) is raising awareness of forgotten cancers, including CUP. The funds raised will go to research and support that will benefit ALL cancer types. Anyone can join in – find out more by visiting the Daffodil Day website. 

To find out more about Robyn’s story visit Cup of Hope. 

Robyn Wagner works as a wedding celebrant and party organiser

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