Gist

Hi Malik87

I get what you mean about "not saying cancer" since when my wife was diagnosed with Leiomyosarcoma it was only when I looked it up that I found out what it meant. For GIST we have quite a bit of information on our main site here and there is even more detailed information available on the sarcoma uk site.

So good to hear that you are talking, and great to to see you here, we list many benefits in talking here.

Most often a diagnosis is only confirmed on biopsy - but sometimes the result can be inconclusive. It can be hard to know if that answer is actually worse because whatever got your partner to this point what many people feel is they want to get whatever treatment started as soon as possible.

What might help you some is to look through Looking after someone with cancer, and remember, on here our family is here for you.

<<hugs>>

Steve

Hi src 60 Thank you for your helpful reply.Well talking not going well!!! He just wants it whatever it is dealt with.This has not really been a sudden development.It started last September 2021.He had an endoscopy and a letter arrived after he had chased for some kind of report near 2 months after the first endoscopy.Said tumours but no other information of course what sort of tumour we needed to know.Getting any further information/help was like climbing a mountain.His doctor had to be pushed so many times to help it was as if no one was listening,all the time the worry grows.Back to doctor further referrals which ended which ended up 7 months later with last endoscopy and phone call.Still feel in the dark.We had to go to hospital oncology unit for the urgent blood test, so cancer immediately comes to mind but it seems,by reading about gist  that it could just be removed to prevent. This not knowing for so long now is driving my partner to depression,  he is such a lovely man its hard to see and yes I feel pretty helpless.

Hi, I’m 78 and had a history over several years of intermittent pain on the right side of my stomach, which eventually resulted in a scan when a small cyst was found as well has a small hernia. I had several scans over time until I was told the cyst had changed and that surgery was required to remove it.  I had this in November 2020 when part of my small bowel and the tumour was removed, along with a hernia repair and the rest of what had been left behind from an old hysterectomy and in January started taking imatinib.  I made a good recovery, but  I didn’t like the side effects of the drug and so after 6 months decided to stop taking it.  I knew there was a chance it could return but reasoned as it had taken so long to reach the stage of surgery, I would chance it. I immediately felt better, although I was needing a hip replacement which I had expected to take place in mid 2021.  This didn’t happen and in November 2021 saw the consultant who asked me to sign another consent form as they had apparently lost the first which I had signed in Jan 2021.  I was now at the top of the waiting list, but developed an irregular heart beat which took till the end of March to be told it was now ok.  In the meantime I had been removed from the hip surgery list because more than 3 months had elapsed! I complained and was reinstated.  However early in March 2022, I had discovered a lump at the side of my operation scar near my belly button. A few days later I found another and by the end of a week or ten days I had a string of them across my abdomen, one very large and growing. Today, I have been told it is a return of the GIST which is inoperable.  Nor can I now have my hip replacement, which was my biggest worry as I haven’t been able to have a normal walk for at least 2 years.  I am trying to be positive, but dread having to tell my family and friends as I tend to set off crying which only makes me feel worse. I now expect to have to go back on imatinib. I’m sure this isn’t everyone’s experience, but as there is an 85% chance of return I don’t suppose I am the only one either.  I certainly did not expect it to return in the way it has.  I can’t offer any advice, except that you think carefully about taking the pill after the op if it is offered.  I don’t regret the decision I made, but do regret not being able to have my hip replacement.  

Hello L17 Thank you for your kind response.Gist is rare so I don't expect many replies.What a lot went wrong for you it must have made you so mad.I have had both hips,knees and shoulders replaced so I can really feel how down you feel at not getting your hip replaced.Keep your positive head on.We all make choices and yours was valid and reasonable for you.To have the gist return so suddenly and a bit different from what you expected, must have been a shock.Tell your family, they may be worrying and need to know,nothing worse than worrying because they don't know.Crying is such a normal reaction, so your feelings in that respect is normal!!! It is your body relieving pressure,so let off some of that steam. It is my partner who has been told he has gist.He has a CT with contrast booked in two weeks time covering everything from neck to full abdomen,liver and kidneys..His G.P today said she knows very little about gist never had a patient with it before.Told him to phone Macmillan for advice!!!She referred to the lump as a nodule.So the lump has gone from tumour to nodule!!! When did you get told it was cancer? Its been 9 months since tests started,big delay was when one department did not respond and the whole line of communications within the system just disintegrated.You say 85% chance of return,that is very high.I do hope you find strength within yourself to say sod it cancer I am going to live life full on my way!!! 

• Hi, thank you for replying.  I don’t think the word cancer was ever used last time, but it was obvious as the drug prescribed was ‘not chemo’ but should help to stop it coming back.  It has been used this time though not over-emphasised as it does seem to be of a different sort than others.  I had no lump with the first one, as I was only being investigated for this long standing pain in my side, which was possibly caused by the hernia, so the cyst which turned into being called a tumour was only discovered during scans for that.  When the lump appeared in March this year the GP thought it was a lipoma but referred me for an ultrasound scan, but when I hadn’t got an appointment after a few weeks, I discovered I was only down as routine. However, more lumps had arrived so I went back to the GP who agreed it had grown.  It has since. Continued to grow. The others seem deeper inside, but I can feel them when I stand up.  I have now told all my nearest and dearest and told them I don’t want to talk about it every time I see them as I am going to try and carry on as normal. We will probably buy a lightweight wheelchair so enable us to go further.  My husband is wonderful. He does all the cooking and is very helpful in every way.   We have been involved in volunteering all our lives and currently run a village history group which followed on from an oral history project.  I wrote a book about that and am expecting delivery of a second print run today as it has been so popular.  On Friday we are having our Jubilee party when 30 are coming so that will be great fun.  I still have little weeps but hope they will reduce now everyone knows.  Again, thank you for replying and I hope your partner will feel better about it all soon.

Hi Malik.  I was diagnosed with gist cancer too, back in April.  It's not a carcinoma but a sarcoma so treatment is quite different.  If you contact gistcancer.org.uk they are really helpful.  I hope you find answers and peace soon. 

Hi,  good news today.  Following on from my previous reports, we bought a wheelchair and began to go out on lovely visits a couple of times a week.  I then started on a reduced dose of Inatimib on 16 June, taking them each morning.  I have been sick a few times but not too bad.  I thought there had been some reduction as I couldn’t feel the lumps in September.  I had a scan on 23 September and have just heard today that the lumps have in fact reduced in size and if the surgeon is happy I might even be able to have my hip replacement or go on holiday.  So, some good news for a change.  Let’s hope it continues.   One bad thing, though.  A month ago, I fell in the bedroom, which I don’t remember anything about, and ended up in hospital with terrible bruising on my face plus a big bump and haematoma on my eye, which I still have though it is smaller now and the bruising is going gradually.  Just hoping now that this won’t interfere with a possible hip replacement.