Cara's Story

On the morning of the 9th of June I started to feel unwell at home. I couldn't explain to anyone how I felt, just weak, lethargic and had an awful headache. I took some pain relief and continued my day going to work like normal. I was a young girl in my 20's; I just thought it was a virus. Later that day I was driven to A+E by my manager as my symptoms became worse, to the point of not being able to stand. That evening I was admitted to hospital for multiple blood transfusions - I was experiencing a massive internal bleed due to a ruptured ulcer in my stomach, which was also accompanied by a large tumour which had been growing for many years, going undetected. Throughout the weeks of my hospital stay, I learnt that the tumour was a malignant, rare Gastro-Intestinal Stromal Tumour (GIST), a type of Sarcoma cancer.

The weeks in hospital passed and I was stabilised, with a planned referred surgery at the BRI, Bristol to remove the tumour to avoid another large bleed in the future. The surgery date arrived, but I was woken up early. It was unsuccessful, due to them finding the tumour had spread through my gastric wall up to my oesophageal junction, now measuring at 6cm diameter. It was too dangerous to proceed, with a high chance of losing my whole stomach. I was sent home to be managed by the oncology unit. The oncology appointment arrived a few months later where I was told they weren't too sure how to progress, and the medication ("Imatanib") that they normally use to downsize GISTS that are inoperable would "probably" not work on me, as my GIST histology was highlighting as a "Wild Type GIST" a rarer cancer than originally thought. Myself and my family felt helpless. This was then where we went on to find a second opinion and the charity "PAWS-GIST". This is a charity who have set up a clinic in Addenbrooke's hospital in Cambridge for paediatric and adolescent patients with this rare type of cancer. The clinic is run by specialists across the UK who want to progress the understanding of this rare cancer, all through voluntary work. We emailed the charity's founder Jayne, who quickly communicated back, and arranged for me to have a second opinion consultation with a specialist, Dr Ramesh Bulusu in Addenbrooke's. He gave us all the answers we needed and began to work along side the BRI to help with my care and treatment going forward.

Since being under the care of Addenbrooke's and Bristol, I underwent my surgery in January of this year. Where all of the tumour was removed, with successful margins and losing only 20% of my stomach capacity. I am still under treatment with the oncology team at the BRI, and still awaiting genetic testing, but the road seems clearer now. There have been extremely difficult times, but I’ve learned a lot about myself because of this condition and wouldn't be in the position I am today with the help of the PAWS-GIST charity.

I want to raise awareness of this special charity, and advance the research and treatment of this rare cancer, so no-one has to go through what I went through.

Myself and Shepton Vets are fundraising for GIST Cancer UK's PAWS-GIST campaign. Your donation will help to run the PAWS-GIST clinic, support PAWS-GIST patients and their families, and fund research into PAWS-GIST cancer.

For more information about PAWS-GIST please visit https://www.pawsgistclinic.org.uk/ and https://www.gistcancer.org.uk/paediatric-paws-gist/