Rachel's Story (PAWS-GIST Patient)

"Hi, I'm Rachel,

I have been living with GIST for nearly 21 years. I was diagnosed when I was just 15 years old. At the time I was a gymnast, training everyday after school and either training or competing at weekends. As a result I was incredibly fit and healthy, or so I thought. My only symptoms were feeling tired and stomach pain, both of which I brushed off as training too hard.
Eventually I became more poorly and totally run down. I went to see my GP who did blood tests. As it was back in 2001, blood tests still had to be sent away, so the GP said it would take a few days for the results to come back. However, unexpectedly, they rang back the very same day and told me to go straight to hospital! The test had shown an extremely low blood count indicating that I was slowly bleeding internally and needed an urgent blood transfusion.

After a further few months of tests, including a CT scan, endoscopy, and a biopsy, I found myself in a hospital room with my parents being told I had a rare form of sarcoma known as GIST.

Unfortunately my doctors thought I may have had GIST for up to 5 years, so I already had over a dozen tumours, one as big as a melon, around my stomach. This meant surgery wasn't an option for me. It was extremely scary being told this as a 15 year old. My only chance was to get on a trial drug which had only just come out known as Glivec. My hospital and doctors had to apply for me to get on the trial on "compassionate use".

I'm so thankful that I got on that initial trial and a further 2 more trials after that, even though these drugs only held my cancer stable for so long before they stopped working, they bought me time.

I have also had 3 surgeries; two which were to control bleeding and my last really big surgery was in 2012 at the Royal Marsden Hospital in London. Because of the size of my tumours I was in excruciating pain so I had what they call a debulking surgery. I had 90% of my stomach removed which meant I had to relearn how and what to eat. I now know to eat little and often and to avoid too much dairy. This is a common struggle for people with GIST so I learnt a lot by talking to other Gisters which really helped!

All of which means, I'm still here fighting on 21 years later, which is amazing considering how little was known about GIST when I was first diagnosed.

Living with cancer for so long has been extremely hard, but I'm hopeful that one day there will be a cure for me and all GIST sufferers".

Many thanks to Rachel who shared her PAWS-GIST story with us.

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