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Martin's Story
Part 1, June 2005
I thought I should add my tuppence worth, (or should that be two cents?), to the accounts of the various ways in which GIST can behave.
April 2002, June 2004, August 2004: GI bleeding, initially with fever. NOT diagnosed as GIST, but thought to be a stomach lesion due to aspirin (75mg/day).
September 2004: severe septicemia, which nearly carried me off. GIST found then, first by ultra-sound scan, then confirmed by CT and biopsy. I was then too weak to be operated on for several months. The septicemia was first thought to be due to diverticular disease, also found at that time. I was told the GIST was benign, and quite safe to leave for several months. It was 9.6cm.
By November, opinion was shifting to blame the GIST for the infections, which were continuing, and put me back in hospital in Oct, Dec., Jan, & Feb. A further CT scan was done to check on lesions in the liver which had showed up in Sept.They were found to have disappeared, showing them to be due to the septicemia, and not the GIST. GIST then 10cm x 8cm.
In December I was referred to the medical side of cancer treatment, and the use of Gleevec was discussed. Surgery was considered the preferred option, and it was referred to the surgeon. On Jan 5th I had an appointment to see the surgeon, and I assumed that he had seen the files and scans and had agreed to operate. We got there to find that he had just got back from holiday and had seen nothing except the referral letter. I was told that I would hear from his secretary within two weeks, but all I heard was an appointment made for me at the medical side, so we assumed that they had decided not to operate, and wondered why the appointment was 5 weeks off on Feb 17th. We got there to be told: "Why are you here. Have you not heard that they have decided to operate?" They checked up on the phone and, yes, the operation was going ahead, with a date to be fixed soon. We got home to find a letter from the surgeon in the letter box, saying just that. The operation went ahead on March 18th. Yes, we know that WAITING thing!
The operation took six hours. I was very glad to hear that it did not involve the stomach, spleen, pancreas, etc. I lost about 18 inches of small bowel in three sections, and the sigmoid (final) section of my colon, which was also heavily affected by the diverticular disease as well as being attached to the GIST. So I have a colostomy bag, which I am told can be put right again in something over three months. The surgeon seemed sure that he had got the GIST out cleanly. He said that the infection had been caused by the tumour leaking into the colon. I just hope that it was not leaking itself as well as the infection. Time will tell! The earlier bleeds must have been caused by the attachments to the small bowel, as the output was completely black. Even by the second day after the surgery, I could tell that I was free of the infection, and I have had no hint of it since.
I am told that the loss of anything less than about 3 feet of small bowel is no problem, and eventually the colon should be functionally normally. So far I seem to have got off very lightly. I am aware that after surgery, GIST returns in over 50% of cases. The surgeon said that it is most likely to return in the first year and after that the chance decreases. The Gist had grown considerably from the 10 x 8cm in Nov. to "A large mass, oh, about 20 cm" on March 18th. I knew it had been growing, because the holes in my leather belt told me so. We hope that neither the original biopsy (needle through the abdomen wall), nor the spread of infection, nor the growth , have resulted in spread of the GIST. Until proved wrong (by CT scan?), my wife, Pat, and I are daring to hope and believe that the Lord has given us several more years of active life to serve Him together (we are both 69, although next week Pat is a year older than me for six months!). We may have got it wrong, but this seems the right attitude for now. I hope Mel approves!
Because GIST is considered a new area of research, the NHS sends the tumour round three different path. labs before a report is issued. I imagine that this is partly so as to get a consensus of opinion, and partly to give as many lab technicians as possible a sight and experience of GIST. This sounds an excellent idea, but it means waiting two months for the report. The surgeon says he will discuss prognosis when he gets the report. Which will no doubt also reveal the actual size of the tumour.
The surgeon's "A large mass, oh, about 20cm" was accompanied by a gesture of the hands well known to fishermen! I am sure Ralph will understand! It is great to hear you are back, Ralph. I am about 10 days ahead of you in the surgery stakes. My view on recovery is that it progresses steadily, but that it is much slower and takes longer than you think it ought to. Apply much patience! I had a low day about 12 days post-op, when I slept all day and ate nothing. The appetite had to be slowly tempted back, and now after just over three weeks, the smell of food actually smells good. Incidentally this is nothing to do with Gleevec (I am not on it) , nor to surgery on the stomach (mine is intact), but is solely due to the operation. No doubt those other things add to it.
The NHS in UK does not fund adjuvant use of Gleevec (I am happy with that), but will put me on 400mg of Gleevec as soon as CT scans show a return. This will continue (for FREE!) for as long as it is seen to be at least halting progression.
I saw the surgeon on 21st April. He got called away, so I first saw another of the doctors who had been present at the operation. He gave us two encouraging bits of information: That the mitotic rate was 2/50 (in line with what I had been told in Sept 04). Also that the infection (forlast six months) was caused, not as I had previously understood by the GIST leaking into the Colon, but by the GIST having caused a leak in the colon, which was leaking its contents out into the abdominal space. This makes more sense, and removes the worry about what else the GIST was leaking. I have been completely free of the infection since the operation.(18th March)
Then, after a wait, the surgeon returned, and in his characteristic manner came right out with the fact that the really important thing in the path. report was the confirmation that the margins were narrow, and that therefore he expected the GIST to recur. (He got it out intact). He said that he could not get wider margins, as it was right up against the pelvis. If he had taken more, he was in danger of disabling the bladder, and things around it. He said that the reason that he did the
colostomy, instead of reconnecting the colon then, was that experience had taught him that, with recurrence likely, it was better to have the colon out of the way. All that seems to explain why the operation took six hours.
I see him again on July 21st, when he will arrange a CT scan for September (six months). The pathology report shows me to be KIT positive, and I will go on Gleevec as soon as evidence appears. If I am still clear at the next CT scan in March 2006, then he will consider restoring the colostomy. This at least means that I am not facing the restoring operation before then.
As I said before, this shows NHS policy being:- no adjuvant use of Gleevec: but its use from evidence till progression. It also seems to show that at least this part of the NHS has a policy of CT scans every six months initially. I am expecting a copy of the path. report in the mail, which should also show just how big the beast was.
Many thanks to all the posters on GSI, both high tech and low tech. You all supply much help and encouragement.
Martin in Northumberland, UK
Below is a photo of Martin, his wife Pat, and their dogs Brock and Simba.
Please look below the photo for Part 2 of Martin's story...
Part 2, May 2007
I have two reasons for writing the second chapter of my story (apart from being chased by Julie-- Thank you Julie for all you do!). The first is to encourage any newcomers to GIST that, although the road may be rough, there can well be light at the end of the tunnel. The second is to shed some light on what can be some of the consequences of just (!) major GI surgery. Those with part or all of the stomach removed, or those on Gleevec, may find it hard to tell which of their problems is caused or made worse by their particular condition, and what is just the result of major abdominal surgery. My stomach is intact, and I have never been on Gleevec.
It seems that chapter 1 was written about June 2005, so I take up the story from then.
Recovery was very slow, perhaps mainly because I had great difficulty over eating. Pat, who is well known as a good cook, was somewhat frustrated that she was doing her best to make interesting meals, and I was merely picking at little bits of them very slowly, purely out of duty, having no appetite. I found out much later that one of the pieces of the small intestine taken out was very close to the stomach, (part of the duodenum?), which would explain the lack of appetite, which went on for months.
In August 2005 I got an appointment for a scan, but no mention of a consultation to give me the results, so I queried this. It appeared to be a totally unknown idea! I had the scan in Sept., and saw the surgeon 5 weeks later in Oct. I commented on the strain of waiting five weeks for the results of the scan, and got a prompt promise that, I did not need not wait in future. If I rang up, he would ring back with the results. He also said that after the next scan he would reverse the stoma (colostomy bag). He was pleased with my recovery, and perhaps a bit surprised in view of the mess there had been. The scan was clear except for two lymph nodes of 1cm, which were judged to be borderline between being recurrence of GIST, and being just a response to the surgery. The next scan was booked for March 2006.
I heard on GSI of a case where someone had lymph nodes of 1.6 and 2cm, which did turn out to be GIST. I wrote to the onc, with a copy of that posting, and asked whether in the light of that they were sure that six months to the next scan was right. It was referred to the MDT, who recommended an earlier scan. The surgeon then arranged one for January 2006.
I waited a few weeks to be told the result and then started ringing the surgeon’s secretary. I rang ten times over sixteen days. Finally I got the answer that it was clear. They were just a reaction to the surgery and had gone down. When I later told the surgeon about this difficulty in getting the results, he was amazed. I also later asked what I should do if I thought I had a problem. He was definite that I should get the hospital switchboard to call him on his DEC phone, which he has with him, and he would answer when he could.
I was also expecting to hear when the promised reversal of the stoma was going to happen. Persistent requests for information both on that and the date of the next scan went unanswered. I was keeping my year free, expecting to be in hospital again soon. I eventually got an appointment for a scan in June 2006 and a consultation in July. This time I got the scan results by phone four days after the scan. Had I perhaps changed the appreciation of the need to let the patient know?!! The scan was clear!! I was put on the waiting list for operation to reverse the stoma a repair a hernia beside it. (Was the delay to keep the waiting list down??). I was booked for 26th Oct. That was cancelled a week before. Eventually another date of Dec 5th was given. That time I was starved, purged and was literally waiting for the porter to take me done to theatre, when they came to tell me that a liver had come in for transplant, so they had to put me off. . They might be able to fit me in late afternoon, so I was kept on “Nil by mouth”. At 4.00pm they decided they could not fit me in, so I was fed. The surgeon said that he did not usually work over Christmas/New year, but he was putting in some extra time to get caught up, would I like to be done then? Fearing what further delays would be the alternative, I gladly accepted. So I had a good Christmas with all the family, and went in on Dec 28th 2006 for operation on the 29th.
When I came round, I wondered why it appeared to have taken nearly the same six hours as last time. They told me that besides rejoining the colon and repairing a hernia beside the stoma, they had found a 3cm lump, and had taken it out with a further 10cm from about the middle of the small intestine. They thought it was a recurrence of GIST. I asked what the chances were of a further recurrence, and was told that it would depend on the rate of growth, as shown in the path report. When I thought that it had not shown up on the scan six months earlier, I thought that the growth rate looked like being high, and the prospects not good! But I thought I had better try and forget about that until I had recovered a bit. I had expected that they would have closed up the stoma, but it seems it was inflamed, (It had always been sore and uncomfortable), so they left it open to heal up naturally.
After four days, I thought I should be showing signs of recovery. I had been started on soup and sweets. But I was feeling worse and my tummy was tight and uncomfortable. On the fifth day, first the incision came open with infection, and then 12 hours later, in the middle of the night, the dressing came off the stoma hole and the pent up faeces in the tummy poured out everywhere. I was a bit miffed; because for a year and three quarters I had been super careful, (and successful!) in avoiding a major embarrassment with the bag; (Those with a bag will understand what I mean!) and then five days after it was supposed to be fixed and finished, I had a mega mess. It took the nurse an hour and a half to sort it all out.
The surgeon was most concerned. His comment to me was “Surgery is the great leveller!”. He is the top liver transplant surgeon for the area and is very highly respected. He said he would be very surprised if it was the colon join that came apart, as he had double checked and tested that. The possible treatments were either to operate again, or starve me and hope it healed up naturally. I think it was fairly clear that I was not just then in a fit state for a further operation. So they put me on TPN, (which I guess stands for Total Patient Nourishment), and after a few day arranged for me to have a “Hickman’s Line” put into a vein in my neck, as they rather expected to feed me that way for weeks. To everyone’s surprise, (and I think, very great relief!), the flow stopped the night after they put the line in.
At the bottom of that particular pit, I was very much encouraged when Pat brought in a printout of a posting from someone on GistSupportUK, saying that he had the same thing happen to him; And he was just an extra three weeks in hospital and then recovered completely. I was very grateful both to the person concerned, and to those who had set up the website and made that communication possible. It meant a lot to me. GistSupportUK is a bit like a local version of GSI. Both are a wonderful help.
I was on the TPN for over two weeks. It looks like a big bag of milk, and was specially formulated on the basis of my blood samples. During that time I was not hungry or thirsty. I was allowed a few sips of water, which was mostly used to take pills. And I was encouraged to suck boiled sweets and bits of chocolate, some sorts of crisps (Quavers etc); all of which apparently completely dissolve in the stomach and go no further. This maybe kept some of the eating systems going. Initially I had a 24 hour bag, but then they went to an 18 hour formulation, so that I had six hours each day to wander around without the post with the bag on it.
I got away better than the other person. I was just over two weeks extra, making 23 days in all. Some have wondered how I stayed sane with so long in hospital. My approach was to largely consider the outside world a closed book, and live the life in the ward. I did have the Patientline TV and radio, and bought a Daily Telegraph. Wrestling with the Sudoku and Kakuro puzzles in the Telegraph kept the little grey cells going and maybe helped them to recover.
A week after leaving hospital, I was back again to have the Hickman’s Line removed. I asked if the Path report had come, and could I have a copy. The doctor went off to see and came back to say that he could not give me a copy just then, but he had looked at it and it said that the lump was NOT a recurrence of GIST, but just a reaction to the previous surgery. PHEWWWW!!!
In Feb. 2007 I had a follow-up consultation, and got a copy of the path report. . They were very pleased with my recovery. I have a further consultation booked for Aug. 2007. They said they would book a further scan then. They did not reckon me to need one before then, as they had a good look around inside, and that was far better than a scan. When I took my dog (a Newfoundland) in to the vet for a check-up, I mentioned to him that they did not need a scan just yet. His comment was:-“They had the gearbox out.” I replied:- “That’s what it felt like!”. That about sums it up!
I did ask the surgeon about frequency of scans. His reply was that the only safe frequency to be quite sure of catching GIST was once a week, which was obviously impractical for several reasons. The considered opinion of the MDT is that the right compromise for those with complete resection and apparently NED was six months.
Currently (May 2007), I am doing very well. This time round I could eat anything as soon as I was allowed to, and have a good appetite. I am sure this has greatly helped recovery compared with last time. I lost twenty pounds in hospital, but have put it all back, and my problem with eating now is restraining myself, to stop the bathroom scales from being too rude. Twenty years ago I put my back out, and it has been minor nuisance occasionally since. But it seems to have taken advantage of my general weakness after the operation to pop out again. A few weeks ago it had just got right and I decided to have a bath, not having had one for two years while I had either a bag or dressings on my tummy; I lay back in the bath, and it went again! Now, at the beginning of May, it is just about right again. Maybe it has been a useful ball and chain to stop me doing too much too soon. Maybe I can now start to do a bit more, and keep those bathroom scales in order.
I was glad to see a comment some time ago from Bev on GSI. She said; “The tummy does go down”. This gives me encouragement and hope. I hope to get back into the trousers that I was wearing three years ago. The tummy should get less. After all, apart from the tumour, they took five pieces of it out!
A little cameo on where I am now:-
About three years ago I started to pick up again some model engineering that has been on the shelf for 25 years. I have a 5 year trade apprenticeship and a BSc in mechanical engineering, but have done various other things since, with the engineering in the background. It feels like coming home. I have my father’s lathe, which I inherited; but I note that these days “everyone” seems to have a milling machine as well. I have dated printouts that show that a week before my first operation I was looking at possibilities. I decided then that my prospects of getting reasonable use out of one were far too small to make it worthwhile.
A few weeks after this last operation I was offered a secondhand one, smaller than I had thought useful, but better than nothing. I bought it; realized how much more I could do with a milling machine; and also realized that I was originally right as to the size I needed.
So I have now bought a larger one, very similar to the ones I was looking at before the first operation.
So, why have I now gone and spent quite a lot of money on a machine that I can’t use for ever? (I am 71). I think the answer is a mixture of two factors, and I am not sure in what proportions!
The first is a wild, irresponsible, celebration of coming out of the end of the tunnel, (and hoping that there is not another tunnel around the corner!). The second is the hard fact that Pat and I are now counting our future active time, (in spite of our age!), in years instead of the months that we have used for some time now.
My present mental attitude is to assume that I am one of those who will remain NED, until it is proved otherwise. I am encouraged in this (I hope not too naive) opinion by hearing that mitotic rate is much more important than size (mine were 2/50 and 10.5cm), and also that whereas for most cancers it is important to get wide margins, with GIST what matters is to get a clean margin and an intact resection. My tumour was very close to the pelvis, and the margin was very small. I believe that I owe a lot to the skill and perseverance of the surgeon for getting it out intact with a clean margin. I suspect that it is one of those cases where a lesser surgeon would either have declared it inoperable, or failed to get it out intact. I am very thankful.
A thought on medical mistakes:- These days people seem to rush to blame someone, or claim compensation. The basic trouble with all medical services is that they are run by human beings. Now, human beings have a big problem:- They do make mistakes! (Hands up all those who never made a mistake......mmmmm I thought not!). My experience is that surgeons go to great lengths to explain the dangers of operations to patients. The plumbing leak that I had was specifically mentioned as a risk on the green consent form that I signed before the operation. The best doctors recognize their mistakes and know how to try to put them right. Going in for an operation is a risky business. The doctors know it and try to tell us. I respect their courage in tackling risky procedures.
When we get a diagnosis of GIST, we all have to find a way to come to terms with the possibility of death a whole lot sooner than we had expected. At 71, this is less of a shock than for some who are younger. When you get past our allotted time of “threescore years and ten”, you no longer count remaining years in decades.
I am well aware that in the UK, at present, the usual response to a mention of God is an embarrassed silence. (Unless someone is using His Name as a swear word). But I have to say that from the time that I recovered from being too ill to care, I found that although I was deeply concerned about those I would leave behind, and all they would have to cope with, I myself had the peace of knowing where I would be going, and that it would be far better. To avoid the usual misunderstandings, let me say that this is not because I am “good”. But because, as someone who has failed God, I have accepted the redemption that He has provided in Jesus Christ. To my surprise, I found (way back in 1958) that when I gave my failed life back to Jesus, He accepted it and gave me new life in Him. I belong to Him and He will take me to be with Him. I am hoping for many more active years to live here for Him. But it is a major factor in my coping with GIST, that I have no fear of the future after that. I do sometimes hope that the passing will be as easy as it would have been when I had septicaemia.
But that may be treated as just my personal position. Each must find their own answer to the challenge that we are faced with. It needs to be a good one.
Having GIST inevitably makes you wonder when and how you will die. I am hoping to be amongst those who, having had a clean resection, have many good years of life without Glivec.
But:- “I know whom I have believed and am persuaded that He is able to keep that which I have committed unto Him against that Day”. (2 Timothy 1:12)
Martin
