An advocate for research – Ray’s GIST cancer story

By Ray on 24th March 2023

Ray’s experience with GIST cancer and long term need for Imatinib makes him an advocate for research into rare cancer. He shares his experience to help others reliant on taking drugs long term and highlights why research is so important.

I was diagnosed in April 2012 while living in France after an endoscopy detected a tumour which I was assured was “ce n est pas grave” or not serious. I was referred to a hospital in Bordeaux where it was arranged to remove the not serious tumour in June as it was deemed not urgent.

The tumour was removed by laparoscopy and I was discharged after 6 days, after being advised that I might need some light chemo-therapy , nothing too difficult to tolerate.

An appointment at a more local hospital was arranged for October 2012 where the protocol for the administration of Imatinib was arranged and explained. The plan was for Imatinib to be taken for 3 years with 6 monthly CT Scans and monthly blood tests.

By this time I had started to investigate the type of tumour I had because I had received a biopsy report which detailed some of the finer points. I did begin to feel more concerned by now because the 3 year plan seemed to leave me liable to recurrence as initially the first scan would be at 4 years but the Doctor agreed to a scan at 6 months and again at 12 months.

All was well until the 4 year scan detected a tumour on my liver and I was then prescribed Imatinib at the same dose with 6 monthly scans. The first scan showed good results and the tumour had ceased growing and was now necrotic and I was advised that I would continue with Imatinib for the future with regular 6 month CT scans. I questioned the option of surgically removing the liver tumour and was advised that was not an option.

Ray GIST Cancer

I did feel a bit isolated living in France but I had discovered the GIST UK website which gave me a lot more information but the possibility of Imatinib ceasing to work in the future was worrying and the uncertainty of the next course of treatment in France.

A small tumour was also discovered on my left kidney which was dealt with by RFA and I was advised that it was not related to GIST. The treatment in France was excellent but the assurance that it is not too serious while leaving me not anxious initially; however it was a shock later to discover that it was serious and quite rare.

I returned to live in the UK in October 2018 and my main concern at that time was how to arrange a continued supply of Imatinib as it is not available by a GP and needed an oncologist to prescribe. I was able to obtain 2 months’ supply in France so I needed to arrange to find an oncologist before the supply was exhausted. The local GP referred me to Northampton General Hospital and I delivered all my CT scan and treatment details which I had obtained before I left France.
Their plan was to arrange for a liver resection to remove the tumour but not until I had ceased taking Imatinib for 6 weeks and I was advised that after the resection I would not need to continue with Imatinib. This did not seem to agree with the information I had and I wanted a referral to a GIST specialist hospital but this proved difficult to facilitate and I somewhat reluctantly agreed to the liver resection.

The liver resection went without any problems but at a follow up appointment with an oncologist in Northampton General Hospital I was advised that I did not need Imatinib anymore and I was cancer free. I requested a referral to Dr Peake at Queen Elizabeth Hospital Birmingham, as by now I had more details about specialist Gist hospitals and within 2 weeks I met Dr Peake who confirmed my information that I should continue with Imatinib for as long as it continued to be effective. Dr Peake explained that if the cancer had metastasized to the liver it confirmed the cancer was still in my system and could metastasize again without Imatinib control. After an MRI scan and later a CT Scan I was prescribed Imatinib and 6 monthly scans which continue to date without cancer recurrence.

I am very happy with the treatment at Q E Hospital Birmingham but I am still surprised and concerned to read via Gist Cancer UK of new Gist sufferers not automatically being referred to a Specialist Hospital in spite of NHS guidelines.

The treatment for GIST that I have received has been excellent but I do feel fortunate that my Exon11 type is one that responds well to Imatinib but I am a little anxious that Imatinib may stop being effective in the future. I do feel that other Exon types are less fortunate and more research is required to find a treatment that is effective.

I heard about RareCan through GIST Cancer UK which is very informative for GIST patients and I am happy to help with further research to find effective treatment. I hope that RareCan is instrumental in furthering the research into GIST and other cancer treatments.