ROGER’S STORY

June 2005. I had known Roger for only four weeks when I was rung to be told that he had collapsed at home and been rushed to hospital. I found him in the Royal West Sussex Hospital in Brighton. (Why on earth have they decided to place the general hospital for the whole of West Sussex at the other end of a giant, permanent traffic jam?)

Roger was severely anaemic and the staff at the Digestive Diseases Department pumped him with antibiotics and gave him three endoscopies during the week he was there. Although I am sure the doctors did not see anything, they confidently declared it to be a duodenal ulcer and sent him home with another tablet for the morning medicine cabinet.

January 2006. Roger and I were heading for the Digestive Diseases Department to have an endoscopy. Roger had found a palpable lump in his abdomen and his GP sent him straight off for tests. The Royal West Sussex Hospital is built on the side of a cliff and whichever access you use involves climbing a steep incline, however unwell you feel. Roger complained that his legs were like lead and he could hardly lift them. Sure enough - severe anaemia - and he was kept in for tests. He was with a different specialist who suggested a CT scan as an afterthought (perhaps the lump was a bit of a giveaway), and there was the GIST, in the muscle tissue on the outside of Roger’s stomach. No amount of endoscopies on the inside would have revealed it. He also had a small tumour above the primary GIST on his oesophagus. We christened them Gordon the GIST and Charlie the Chest. Naming them helped to reduce the fear of them.

Before Roger was discharged we saw a surgeon because he had had experience of GISTs. He told us that Gordon was so large that he could not operate to remove it because he would have to remove the whole stomach and that would kill Roger. He said it with such assurance we took his word for it. Glivec was described as a wonder drug that would reduce and remove the tumours without surgery. Sure enough, after a while the tumours changed their consistency and became soft like jelly.

Soon after Roger started on 400mg Glivec a day, he moved to Hampshire to be with me and he transferred to Southampton General Hospital. Several things were disconcerting, including the fact that we did not have a key worker assigned to ring up whenever we had questions or worries. The oncologist was quite reticent and did not tell us much after each CT scan. We felt very adrift and alone.

March 2007. The oncologist hinted that it might be possible to remove the tumour.

July 2007. Roger was very anaemic again and had to have a blood transfusion.

Aug 2007. The oncologist could not show us the latest CT scan because the computer was down. We were disappointed. He also discounted the idea of surgery. We joined the Gist Support Mailtalk at this point because we felt very uncertain about everything. This Mailtalk group made it very clear that we should get a second opinion and to go to a centre of excellence. Winchester is not far from London so we had a referral from Southampton to the Royal Marsden Hospital. After informing the Southampton oncologist that we would like a second opinion, he started to talk about surgery again and said he would arrange for a surgeon to see Roger.

September 2007. The oncologist showed us the scans at last. He said the tumour was getting bigger again, but he did not elaborate.

Later in September we went to the Royal Marsden Hospital to see Professor Ian Judson. He gave us a detailed description of what was going on – Gordon has developed a resistance to Glivec and shows evidence of blood vessels in places around its surface. Charlie is still responding to Glivec and shrinking. He said he would discuss Roger’s case with his TEAM – a word we had not heard in any other hospital. In particular he wanted to talk to his surgeon, Mr Satvinder Mudan.

Two weeks later we saw Mr Mudan, who was very upbeat and said he thought surgery was possible and he wanted to get on with it and was setting up all the necessary pre-operation tests as we spoke. He suggested that it was unusual for a metastasis to grow above the primary tumour and in a later letter surmised that what Roger has is a dumbbell-shaped tumour and Charlie is an outcrop of Gordon.

Eighteen months after initial diagnosis, Roger is preparing for an operation which will include removal of his stomach, a procedure we had originally been told was not possible. Roger is now undergoing pre-op tests, heart tests (he has a history of heart disease) and finally he will have an endoscopic procedure under general anaesthetic before the big one. We received an appointment to see the surgeon in Southampton only after Roger was well into the tests at the Royal Marsden. Now that Gordon is growing again time is running out and we feel aggrieved that the regional hospitals did not refer Roger to the Royal Marsden Hospital for advice, since that is the place where the frontline research is being done. We now feel that at last Roger is being looked after by a team of doctors who really know about GIST.

Roger is keen to get Gordon and Charlie removed because he can feel that things are changing.