A Gastro-Intestinal Stromal Tumour is rare, but you are not alone!

MARTIN'S STORY

 

With wonderful hindsight, my wife, Pat, and I think that the first sign of trouble came in July 1999, when I was unexpectedly ill after a moderate walk over the hills in Scotland.

 

How it all started
The first clear sign came in April 2002, when I was ill with a fever and abdominal pain and then black tarry stools. The GP asked for a gastroscopy and expected it next week. He was not happy that it took the hospital two and a half months to arrange it. At that point they found a reddish patch in the stomach, and seemed rather unimpressed. I was put on Omiprazole, and told to avoid aspirin and anything containing it. I had been on a small aspirin a day for two or three years, as I had high blood pressure and my elder brother had a stroke (from which he largely recovered). They did not do a scan. When I got to the gastroscopy, I was impressed with their efficiency in handling a lot of patients. The delay was not due to laziness or lack of concern, but just due to overload of the NHS.

I have learnt since that the best tactic is to go to A & E, get admitted, and then they will do all the checks. They might have found it if I had done that. But I also reckon that if they had tackled it at that point, it could have gone wrong, and I might be worse off than I am now.

 

Over the next two and a half years I had a few minor recurrences of GI bleeding, and life was a struggle. I thought I was ageing too fast.

 

In September 2004, I was ill with very severe stomach pains, and difficulty passing water. As it was weekend, we called Doctors Out Of Hours, and got a good one, who asked several good questions and then called an ambulance. Hexham General Hospital relieved the water problem, took bloods and put me in a ward. Next morning, when the doctors had the blood results they apologised for not spotting earlier that I had peritonitis and septicaemia, and promptly put me on antibiotics. The next few days were "touch and go". I remember telling one doctor after four days that I felt I was just beginning to get my head up out of the swamp and looking around. The surgeon said later that I was more ill than his patients were after a major operation. I later told Pat that if I had died then, I would just have drifted away in a fuzz without bothering about it.

GIST finally diagnosed
In the midst of all this they gave me an ultrasound scan to check the waterworks. They moved the scan over the middle of my tummy, and there was a silence that said, "Hey what's this?" A CT scan confirmed a tumour, and a needle biopsy guided by CT eventually confirmed GIST. A doctor later said that I was very stoical when I was told about it. The truth was that I was too ill to care!

( I saw a paper with the equivalent number of chest X-rays to the CT scans I had to that point. The figure was somewhere around 348!)

The surgeon said that I was too ill to be operated on for at least three months, so after 13 days I went home. I was told to eat lots of protein and calories. I asked if that included large Mars bars and was told "Yes". (Pity they have given up making them!)

I began to recover, but then every three or four weeks I was back in hospital with fever and peritonitis. It was clear I had a chronically leaking gut. My case was referred to the area MDT, who seemed to take a long time to do anything about it.

 

Eventually in early Dec.2004, I saw an oncologist in Newcastle, who seemed to be well informed on GIST. She said Glivec had been approved for me and told us all about it, but there was an ongoing debate as to whether to operate instead. So we went away to wait to hear from the surgeon.

On Jan 5th 2005 we saw the surgeon, who was frustrated to find that all he had was the referral letter from the oncologist. But he did take a lot of time to listen to all that I had to say about it and said that it looked like he should operate, but he had to see the scans first (they got sent to him next day!).

Confusion over treatment
So we waited....... to hear what he was going to do. It was a very low time, because we reckoned that surgery was the only hope; because Glivec would not stop the leaking. We thought, I think rightly, that it was operation, or I would not see the end of the year. After two or three weeks we got notice of an appointment to see the oncologist on Feb 17th. We assumed that meant that they had decided not to operate (and wondered why the Onc was not acting sooner). So that was a very worrying time. When we got to Newcastle to see the Onc, she more or less said: "What are you doing here? Haven't you heard that they are going to operate?" We said: "No". It seems the MDT had decided that it should be surgery, so she rang the surgeon's secretary who confirmed it. The letter was on the doormat when we got home! The Onc appointment was an administrative routine follow-up, presumably generated by a computer!

 

So on March 19th 2005, I had a six hour operation to remove a tumour (10.5 x 9.5 x 9.5cm, 2/50 mitotic rate), and three sections of small intestines, and one bit of colon (including the worst of the diverticulitis), leaving me with a colostomy bag. I had been I touch with Judith, who was a great help to me over that time. Her symptoms were very similar to mine, so I was at least half expecting to wake up and find that I had lost half my stomach. It was such a relief to hear that my stomach was intact, that I was not too bothered about having a bag!

 

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.

 

Continuing chaos
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 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.

 

Extensive surgery and a long, slow recovery
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; 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 Bill Hampton, saying that he had the same thing happen to him; And he was just an extra three weeks in hospital and then recovered completely. Very many thanks to Bill for posting that, and to Judith and Dave and any others involved in setting up the MailServ, so that the communication was possible. It meant a lot to me.

 

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 Bill. 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 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 (April 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 end of April 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!

 

Coming back to normal life
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; realised how much more I could do with a milling machine; and also realised 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, (inspite 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 recognise 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.

March 2009 Update
For the past six months I have been rejoicing in being free of any pain in the tummy for the first time in four years, getting my muscles back, and doing some outside jobs that I have just had to watch rotting for the last five years for lack of strength to do them. I have also been enjoying the idea that I had finished with hospital wards. Over the last four and a half years I have had 62 nights in hospital and a total of 14 hours of anaesthetics. I conveniently blame the latter for any slight lapses of memory. (Surely it can't be old age! I am only 73!). Last week we saw the Consultant, (or rather his Registrar), for my annual checkup. Although I was slightly expecting it, it was a bit of a shock to find that the experts had decided that they should operate again; this time to mend a hernia that is the result of the bottom of the incision getting infected two years ago. They say that it will probably give trouble at some time, and it is best to mend it now, while I am fit. It is said to be similar to last year's surgery to repair another hernia. It should be done sometime between now and the end of July (to meet govt. targets). It should be about 4 days in hospital, and then six weeks before I can lift anything heavy. And we were just thinking that, at last, we had a clear Summer to get things done! Some might say that, as it will be about 18 months since my third surgery, I'm having another, just for fun. But they might not be quite right! But I should be all set up when it is all over. I am currently doing fine with five bits of plumbing missing. And the really good news is that there is no sign of the GIST cancer returning. :-)

And some final thoughts
I am well aware that in this country, 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)

 

New UK clinical practice guidelines for the management of gastrointestinal stromal tumours (GIST) published by British Sarcoma Group - NEWS >>>

GSUK's Chair Nic Puntis discusses the BBC's report on the Cancer Drugs Fund on BBC Wiltshire Radio - NEWS>>>.  

Michael Sayers...news

Update on GIST clinical trials that are recruiting and in the pipeline....

Forthcoming Patient Meetings

  • Friday 6th October in Cardiff
  • Thursday 7 December in Edinburgh
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More information will appear on this website in due course.

We have launched our first GIST patient survey and hope to gather a better understanding of the landscape for GIST patient treatment in the UK. The survey closes on 10th September 2016 so if you would like to participate please complete the survey by clicking this link

'ALT' GIST Trial to open in the UK soon! We have been alerted to a new trial that will be opening in the UK in the near future for metastatic GIST patients. Read more on our Trials & Research page 

PAWS-GIST Clinic 7 - Newsletter June 2016

GSUK attends Cancer52 parliamentary reception to raise awareness of rare and less common cancers.

GSUK Research Update 2016 - Read all about it here

NHS England's Sarcoma Service Specification consultation is open until Weds 20th April 2016.       Please register your views by responding directly via this link.                             GSUK's response can be viewed here

Cycle for GSUK! We have four allocated charity places on the RideLondon event for this year and also for 2017 and 2018. Go to our News page to find out more!

The Masitinib Trial is now open.  For further details of this trial, and to find out which centres and clinicians are involved, please go to our Research & Trials page. 

Regorafenib has remained on the NHS England Cancer Drug Fund List for GIST patients! Read more!

Can you help Professor Eamonn Maher with his research Study? If you have had, or have, two or more primary GISTs, or a GIST and another tumour, find out more at the bottom of our research page

PRESS RELEASE - UKTV announces GIST Support UK as its Charity of the Year 2015

TUMOUR BANK UPDATE: "We have been granted approval from the NHS ethics committee for our National GIST Tissue Bank which will store these valuable GIST tumour samples for research. If you are about to have an operation and would like to donate your tissue for research please email  with your contact details. Visit our Retention of tissue page for regular updates.

Scottish Sarcoma Network: Interested in attending their Sarcoma education days or finding out about the services on offer ? Read our News page

Use of human tissue
Do go to our new "Retention of Tissue" page and please sign a consent form!

GSUK funds research!
GSUK provides £20,000 from donated funds to help start a research project at the Royal Marsden. Visit our News page for further information and picture.

Funds being raised for UK PAWS GIST clinic
See our News Page for more information.

NICE approves improved treatment for ascites
The PleurX system allows the patient to drain fluid from the abdominal cavity without having to pay repeated visits to hospital. More information on our News Page.

European Commission approves three years' adjuvant use of Glivec
Visit our News page for more details.

Masitinib
A press release in February claiming the effectiveness of this drug as a replacement for Sunitinib appeared to be premature at the time. However subsequent news may be more encouraging! See our News page for more details.