This is a story which illustrates how difficult it can be to diagnose a rare cancer, simply because even the consultants may not have seen it before. The cancer referral guidelines do not always help either.

In my case, because my GP knows me, she knew that the epigastric discomfort I had was not just me being a neurotic, late middle-aged woman. The consultant I saw within six weeks, did not know me, of course, and I did not fit the typical cancer patient image. I was not losing weight, I was eating well, there was no bleeding, just this intermittent discomfort, unrelated to what or when I ate.

So I was reassured that it was nothing serious, and he would do a gastroscopy to make sure, but it was not urgent.

I waited.

The discomfort became less intermittent, and then I had a gastric bleed. It only lasted for about three days, but I went back to my GP who wrote asking for me to be put on the urgent gastroscopy list.

I waited.

The discomfort was turning into mild pain and nothing seemed to help. I went back to the GP who was horrified that I had heard nothing. She phoned and found out that her letter had got lost. Then I had the gastroscopy within a few weeks, but nothing was found, except a slightly inflamed area. More reassurances. “We’ll do an ultra-sound just to make sure.” Sometime.

I was given an appointment by phone and then got no paper-work. When I turned up, they had not got my notes. They did agree to do the ultrasound and when my name was called, TWO Judith Robinsons stood up! They had not checked the dates of birth! The other lady had wondered why she had kept getting letters.

I had gone to the appointment alone, thinking they would find nothing. However, the radiologist got quite excited. “We have found the cause of the trouble”, he said, “and it is big. The size of a grapefruit.” I had very mixed emotions. I was relieved that it had been proved that it was not all in the mind. But I realised that surgery loomed. I do not think the radiologist realised the effect his new would have. I was in shock. I do not know how I drove home without hitting anything.

Then things did move fairly fast. I saw the consultant again and he said that most of these things are benign, but it would take about six months to get over the surgery. I had a CT scan and I then saw the surgeon. I began to realise the seriousness of the situation when I was told that only the top surgeon would do, and he would fit it in before his holiday.

Only when the surgery was booked did the discomfort become pain, so I can well understand the difficulties of the consultant in realising that I was ill. The surgeon was wonderful and told me all about what he was going to do, and then what he had done. I had lost the tumour, about half my stomach and my spleen. He also said that the huge (15cm) tumour was probably benign, and that there was no sign of any spread.

When the pathology report arrived, a registrar talked me through it, but I was still in the dark. He did not use the word “cancer” and there were lots of long words I did not understand. I was not allowed to read the report myself, nor to take it or a copy away. The fact that I would be referred to the Royal Marsden Hospital was the only clue I really had that it was cancer.

It took a long time to get the appointment, and the wait was very difficult. I expect the RMH knew that there was not going to be any further treatment, so to them it did not matter, but it did to me. However, when I eventually did go, they explained that it was a very rare kind of cancer called a GIST, that it had not spread, and that there was a 30% probability that I would have no further trouble. I was to have regular CT scans, and could phone if ever I was worried. If I did get a recurrence, there was an experimental drug on trial which was giving excellent results.

I then tried to find out all I could about this GIST thing. There was nothing in print. The doctor at RMH had told me about an American web site which we found. It was full of obituaries! I would have loved to have found another patient to talk to, but how? I phoned BACUP who were very helpful, and I phoned Macmillan Cancer Relief to see what they had to offer. I was invited to join the RCF. At the first meeting I met two people who had had similar surgery, and they were so helpful. It was wonderful to talk to people who knew what I was talking about.

That was in 2001. So far so good. I feel very well if I eat according to the rules my new stomach dictates. There is now a great wealth of information about GIST on the web and in print. I have now met a number of other GIST patients, some face to face, some on the phone, and others via the Internet . The experimental drug, Glivec now has NICE approval, so things have moved on.

I am more and more convinced of the support patients can give each other. The doctors are great: without them I would not be here. Specialist nurses, if you can find them, are wonderful, but another patient is able to give something quite different, and very special.