PAWS-GIST Patient Stories

Thank you to the following patients who have shared their PAWS-GIST stories with us.

Andrew's Story

"This disease has affected me and my family.

The following is a very long story made short….

Believe me I could write a very inspiring book based on my experience. An experience that engaged desperation, fear, courage, determination, help, assistance and above all else the most important things human beings can gift each other….. love and support.


It was the 13th December 2019 and life was going as planned for me and my family. Whilst treating my daughter Ava (aged just 12 at the time) and her twin sisters Holly and Abbie (aged 9 that weekend) to a Christmas grotto theme park weekend away at Gulliver’s World, our world changed drastically.

>> Read Andrew's Story

Vicky's Story

"On Christmas Eve 2007, I had a tumour removed in an emergency operation after an ulcer ruptured in my stomach. I was lucky to survive the operation. My sons were only 4 years old and 22 months at the time – one minute their mum was there, the next she was gone for 5 days.

I was signed off work for six weeks whilst I recovered, but just as I returned to work, I learnt that the tumour was malignant, a very rare wild-type Gastro-Intestinal Stromal Tumour (GIST), a type of Sarcoma cancer.

At the time, there was no further treatment offered and so I was monitored via regular CT scans. Although initially very shocked with the diagnosis, I continued to work part time. I didn’t seek any counselling or support at the time – I just wanted to get on with my life, return to normal and focus on each day...

>> Read Vicky's Story

Jo's Story

Jo's Story"In 2014, I began having recurrent abdominal pain, initially putting it down to being female and “time of the month”, then blaming things I’d eaten (too much, not enough,, too much fizzy drinks, not drinking enough and being dehydrated).

After 3 months (September 2014),I decided to speak to the GP. Thankfully, he sent me for an ultrasound scan."

>> Read Jo's Story

Pippa's Story

Pippa's Story"I was diagnosed with a Soft tissue Sarcoma cancer known as Paediatric Wild-Type GIST in 2009 and it took years before I was diagnosed.

I want to share my diagnosis to highlight both the importance of early diagnosis and to raise awareness of my cancer symptoms which may not be ‘as expected’ when thinking of the typical cancer symptoms (ie. finding a lump)..."

>> Read Pippa's Story

Rachel's Story

"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.

>> Read Rachel's Story