My GIST Journey
On a bright morning in May 1998 I went to Oxford Volvo and ordered my new car. In the afternoon at my son’s school to attend a parents’ briefing, I started to feel unwell. Overnight I had a painful, sleepless night and neighbours took me and my wife to John Radcliffe A&E where I started my GIST Cancer journey that, now 23 years later, I am still on.
I was operated on under the belief it was an appendix operation. I was left till last in the operation list believing I was the lowest priority. However, when I came around, I knew it was more than that with the volume of pipes plumbed into me. After recovery I was diagnosed with GIST cancer (my tumour was sent to USA for a diagnosis). Initially, 5 years of CT scans and follow ups showed no evidence of disease and I was given the all clear.
A New Challenge
In 2009 with us having moved to Lincolnshire, I was on the beach taking photos with my daughter when I experienced massive pain which subsided but did not disappear completely. I spent a day in Boston hospital under investigation and was going to be sent home with diagnosis of hiatus hernia, but I insisted on a scan of some sort and grudgingly was given an ultrasound. Once I told the operator where to look, she literally gasped but would say no more.
‘This was the first real indication that not all medical staff understand how rare cancers develop and led to me to conclude that you have to be the expert until you find one.’
The doctor said something was on my liver but said it was a cyst and was quite off at my suggestion of GIST, saying, ‘No, GIST does not go to the liver’. This was the first real indication that not all medical staff understand how rare cancers develop and led to me to conclude that you have to be the expert until you find one.
After a delay of about 6 months, I had to go into Queens Medical Centre in Nottingham for a tumour to be dissected. It was almost at the limit of size that could be operated on and I was lucky to survive. I got very depressed because I had been told that first, I was disease free and had no more chance of getting a recurrence and second, that my disease did not go to the liver.
Finding GIST UK and Further Research
My wife decided to take charge and went online to find support and knowledge. She found the GIST Support site and GIST UK. From there I found that secondary cancer in the liver was common. I was also recommended by GIST UK to see a professor at Sheffield Western Park Hospital. I got medical help with my depression and put on a trial of Glivec as a preventative, which I was on for two and half years. I was also told my diagnoses changed to Wild Type GIST (unknown driver) later part of PAWS GIST. In 2012 I came off the Glivec.
In 2014 Lincoln Oncology picked up from a CT scan a small tumour in the liver again but my surgeon at Nottingham ordered a PET scan to check and found another tumour in the bowel area. So, another operation to remove both of those. I continued with scans at Lincoln and, unfortunately, in 2015 another large tumour was found. I say ‘unfortunately’ because it was missed by an early scan. The oncologist basically told me nothing could be done which I refused to accept, and because of my connections with GIST UK and their association with Addenbrookes Hospital in Cambridge, I referred myself there. I was given surgery after another PET scan to check it was just one tumour and that was successfully removed.
In 2017 the shock of another three tumours appeared and basically surgery was no longer an option, but I was given targeted radiotherapy at Addenbrookes over a week. That held them for a year, but another tumour appeared and there was evidence that the other three were growing. My doctor was looking for trial drugs that I might qualify for but at that stage, no treatment options. I volunteered to help in early-stage trials and had an interview and further blood tests to make sure I understood everything. My doctor got the news that because of these blood work ups and analysis of my ‘banked’ tumour tissue, a new diagnosis for my GIST came out. No longer Wild type but a rare exon 8 deletion driver. This opened up a treatment path and the surprise was it was Glivec again but at a higher dose. I have been on that treatment path since 2018. Keeping the tumours at bay. Not a cure as such, but as my doctor said to me, ‘the plan is, Steve, to keep you alive until something else gets you!’