David's story

Hi, I’m David and it's difficult to say when my GIST journey started, as it took a while to get diagnosed.

I had been visiting my doctor since around 2016 with abdominal pains and given many different possible diagnoses of IBS, appendicitis, gastritis to name a few. It wasn’t until I took myself to A&E with acute stomach pain on the 10th of March 2022.

I was just on the way to work in Leeds on the train and...

I got stomach ache again but this time it was really painful and I ended up making my way to Leeds General Infirmary A&E. At first, they didn't know what it was and suspecting appendicitis, they transferred me to St James’s Hospital in Leeds, where I then spent 4 days. Here they started the investigations, where a CT scan and a biopsy were carried out. The surgeon on call confirmed there was a large unknown mass in my small bowel, and I would have to wait for the results of the biopsy to come back to confirm exactly what it was.

10 days later...

I had my appointment with the surgeon, he confirmed that the mass in my stomach was cancer, a rare type of cancer called GIST (which I had never heard before). The tumour in my small bowel which was measuring 7cm by 7cm had perforate and that was the cause of the pain. It was too close to important blood vessels, so I was advised against surgery straight away and Imatinib was recommended to shrink the tumour before considering the removal.

I didn't start the Imatinib straight away because...

I had just got married, we were two weeks away from going on our honeymoon, which unfortunately we had to cancel, but most importantly we were wanting to start a family. We were advised to freeze some sperm so IVF would be possible in the future. This was done and I started the taking Imatinib a month later in April 2022. Thinking about the imatinib medication and the side effects I encountered, I mainly started off with headaches, sickness and fatigue. The hospital has changed the medication manufacturer a few times and some of the brands had more symptoms such as cramps in my hands and fingers, but I think I have now found the best option for me. I also take the anti-sickness medication in the evening after food, which I find this very helpful. I have good days and bad days, but I feel I cope better now with the medication than when it was first prescribed.

The imatinib worked well to begin with and shrunk the tumour to about 5cm by 5cm by July 2022. Unfortunately, by Oct 2022, the tumour had become cystic and grown to 8cm by 8cm. The hospital gave me a choice, either keep taking the imatinib to see if it shrinks further or go for surgery, I chose the surgery which took place on 1st of December 2022 and was successful. The GIST was actually a bit bigger at 10cm x 10cm by the time it was removed. The surgeon undertook two resections, one to remove the GIST and the other to remove an inflamed diverticulum. I stayed in hospital for just under a week then I was allowed to go home.
I was advised to keep taking the Imatinib for at least 3 years after my surgery - possibly life long due to the fact that my tumour had perforated and was categorised as high risk of recurrence.

Looking back at the last few years...

The cancer diagnosis of the GIST has been a rollercoaster of a ride for my wife and I. I have been very lucky to have been supported by my employer who I have to say have been great every step of the way, I feel this cancer journey that I am on would have been a lot more difficult without the support of my them. I am also happy to say that we have now completed the IVF process and have a beautiful 8 week old daughter called Connie.

I can’t explain how much my outlook on life has change in these last few years from wondering about my own life and how long I had left to now being lucky enough to guide another little human through life the best I can.

I hope that me sharing my GIST journey can help others the same way that the patient stories I read helped me when I first stumbled on the website.