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GIST Support International - Some Words of Encouragement
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Some Words of Encouragement

by Martin Leigh

These are what I hope will be some words of encouragement to three groups of people, which I have been thinking about for some weeks:

1. For those recently diagnosed, or who just had initial surgery:

This Listserv is, quite rightly, mostly taken up with people who are struggling with progressive disease and the side effects of Gleevec or Sutent etc, or are searching for the next drug that might be effective. But this hides the fact that there are a lot of people whose GIST was found before it had spread, and it was taken out cleanly and intact. In that case, it is quite likely that they will have no further trouble with GIST, and they quietly disappear to get on with their lives. Size of tumour and mitotic rate have some influence on the risk of
recurrence; but they are not hard and fast guidelines. In my case, the mitotic rate was a nice low 2/50, but the tumour size was 10cm, which puts it at the top end of intermediate risk. Also it was removed cleanly, but with absolute minimum margins, because it was very close to the pelvis. It seems that GIST does not usually spread through its margins, but through the blood supply. So, unlike most cancers, wide margins are not critical. I have never been on Gleevec. Back in 2004 GIST was found when I had severe diverticulitis, which gave me septicemia, and very nearly carried me off. As the diverticulitis kept repeating, they decided to go ahead with surgery rather than put me on Gleevec. I had the tumour out in March 2005, and there had been no sign of recurrence since. (Next scan October!....)  So take heart. If your tumour was, or is, removed intact before it spread, there is a very good chance that you have seen the last of GIST.

2. For those facing, or recovering from, major surgery:

A.  Recovery takes longer than you think it should.
B.  But, it keeps on going on and improving for a long time.

I have been told, by someone with experience, that two years after a major surgery you feel fine. Since my first surgery in March 2005, I have yet to get to that point. Although last year's was only a "minor" hernia repair and for the last six months I have been enjoying getting my strength back. My first included taking out a 10cm tumour and three sections of small intestines linked to it, and a section of colon affected by diverticulitis, leaving me with a colostomy bag. The second, a year and three quarters later, reversed the  colostomy, (I was glad to see the end of that!!), and they thought they had found a 3cm recurrence of GIST, so they took that out, along with a further 10cm of tubing. ( I found out 4 weeks later that the path lab said it was only a reaction to the first surgery. Much relief!). But four days after the surgery it became evident that the latter join in the tubing was leaking. And the bottom of the incision was infected. I was 23 days in hospital, which was a lot less than everyone expected. That event resulted in a hernia beside the colostomy hole, which was mended in Jan 2008, and also caused a hernia beside the incision, which is now planned for mending. So I seem to have had a succession of repair jobs, and lots of recovery. I can say that recovery keeps on going, and gets there, (in spite of old age!). I can now eat anything I want, except that I give peas and beans a miss, to avoid any extra embarrassment from wind. The last few weeks I have been busy mending field fences. I found that eighteen months after he first surgery, I could still look back over that last month, and see that I could do more than I had been able to a month before. So take heart. You will not get back to full strength in a day, a week, or even a month; but you will continue to improve for a long time, and get there in the end. ( I think I had better get remembering this one myself!).

3. For Carers, and those who have Carers:

The Carer often carries a lot more stress and strain than the patient. A classic example is my first surgery. We were told it would take about two hours. My wife rang up at two, three, four and five hours, only to be told each time that I was "still in theatre". The first I knew about it was when I was just coming round in the Recovery Room, and someone handed me a phone, and said: "You have better try and speak to your wife, she is getting a bit worried!". On the several occasions when I was very ill, I knew very little about it, and she was worrying hard. Then when I got home, she was doing her best to produce nice appetizing meals for me, and for what seemed like weeks and months, I was just picking very slowly at little bits of it.  During long recoveries, she was concerned about how she was going to cope if I was not able to get back to doing things again. We live in a lovely spot with a large amount of garden/wilderness. She was appalled at the prospect of being left to cope with it on her own, and last year we seriously considered moving  house. My getting back to something like normal in the last six months has led to a decision to stay put for a few years yet (partly helped by the present housing market!). So, both patients and Carers should not underestimate the burden on the Carer. The Carer should not be surprised, or feel guilty, if the burden sometimes seems too much for them to bear. And us patients should be very thankful for, and appreciative and considerate of those who care for us.

Martin in the UK

You can read Martin's story on our Stories of Strength page:  link here.



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