New to the forum and just diagnosed with G.I.S.T.

Moy 26 days ago

2 replies
12 subscribers
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Good morning everyone!

I have just found your forum and am desperate to share what's been going on for me, so I hope you'll forgive me if I splurge! But first, I'll share a bit about myself. I'm 73 and have a long and loving marriage (54 years!). I have two grown up children - one who lives locally and one who lives at the other end of the country! I have three granddaughters and two grandsons ranging in age from 9 - 19. The families are both busy, busy, busy - just as I was when my kids were young.

Recently I fell and had a CT scan which picked up an abnormality between my Pancreas and Duodenum. Yesterday, I had a gastroscopy and it was confirmed that I have a gastro intestinal stromal tumour (G.I.S.T.). More tests are to follow to see how deep the tumour has gone etc.and any treatment, or non-treatment will be discussed at a later stage. My next step is to have an endoscopic ultrasound - no date yet.

So far, no one at the hospital has mentioned the word 'cancer' but, having looked up GIST I see it is a soft tissue sarcoma and outcomes can vary according to whether or not it has spread.

I have been told that a Macmillan nurse will contact me within two weeks and that she will now coordinate my appointments etc and will be there to discuss what is happening to me.

Now this is great - but I need to get some things off my chest right now!

Firstly, I have a loving husband who clearly has no understanding of what is going on and how it may be making me feel. He blots out medical information like I blot out what he tells me about his classic cars! Yesterday at 6.00 pm we were in discussion about the gastroscopy results at the hospital and this morning he is helping to set up a field for a three day car event.

I have a daughter who is staying in London yesterday and today with my three granddaughters who are all 'Swifties' and two of whom will be at the big Taylor Swift concert in Wembley tonight. It's no good trying to talk to my daughter today as the excitement levels with the girls are far to high with the girls for her to take any notice of what I'm saying. My son is working. I can speak to him later, but need to get my ducks in a row first.

I don't know which way is up! I am on a see-saw of emotions thinking, 'The tumour has been measured at 1.6mm so far so it may be kept under surveillance.' to, 'The cancer may have spread and the depth may be greater when measured by the ultrasound endoscopy and I could be in for a lot of unpleasant procedures and treatment, depending where it has ended up!'

I am concerned because the CT scan also identified a lung nodule. I had one picked up three years ago which was under the size threshold for surveillance. If it is the same nodule, it has grown. I have one in the other lung that my respiratory consultant isn't worried about, but he is concerned about this one and wants me back at the beginning of October to see what's what!

I have polyps being removed from my colon in two weeks time and they will also be tested for cancer.

I've had blood tests relating to cancer but don't get the results until Sept 5th (coincidentally, the day of my next colonoscopy). I only know they're relating to cancer because I read the name of the test on the blood test form and it tells me what the test means on Patient Access.

And STILL, no one medically involved has actually come out and used the word 'Cancer'!

I'm sorry to have dumped all this here, but believe me when I say that just writing it down has already helped.

I welcome any replies, but even just knowing other people are out there is a great support.

I have chronic respiratory conditions and so also post on the asthma + lung forum, but don't think this is appropriate to post there.

Thank you, if you have taken the time to read this.

xx Moy

L17 26 days ago

Dear Moy

I too have a GIST cancer. It is a rarer form of cancer. It was discovered when I had an operation for a ‘cyst’ and a hernia. They ended up taking the rest of a hysterectomy away, plus repairing the hernia and removing the so called cyst with part of the small bowel. I then took Imatinib tablets for 6 months until I asked to stop them as they were depressing me. A year later a scan showed it had returned and I began taking a lower dose of Imatinib, which made be sick now and again, but which is rare now.

Two years on I am now told it has spread to the peritoneum, which is like the lining of the stomach. I have a scan booked for 8 September, but after two separate doses of constipation lasting 2-3 days, my GP has requested an earlier scan as it may be related to the cancer. We will see. A different drug with more possible side effects has been suggested which I don’t like the sound of. Survival rate of this is not high.

I am now 80 so can expect this I suppose, though I am reasonably healthy despite other failings! I recently had a hip replaced having waited 3 years for it and am walking better though not very fast and have an irregular heartbeat, but we are expecting to go to Madeira for 3 weeks n September. All fingers and toes crossed!

I have been on this site for a few years now, but rarely respond as no-one has had what I have. You seem to have different health issues from me so may not have the same treatments, as I have had no other invasive treatments, only CT scans thank goodness.

My husband of nearly 60 years is very caring and supportive and does all the cooking and heavy work in the house. His relief is the garden which needs a lot of attention as though not massive is full of shrubs and perennial flowers.

i wish you all the best with what is to come.

Liz

Moy 25 days ago in reply to L17

Thank you for your reply. It's good to hear from you. You've certainly had a lot to contend with but I love the fact that you're planning to go to Madeira. We've given up going abroad now as both had some issues that caused problems while we were away. My husband is 82 now and is not keen on the idea of either being in hospital himself or visiting me there if we're in a country where we don't speak the language. Personally, I would like to go away again somewhere warm and interesting!

I won't get the results of my biopsy for a few weeks and the blood test results won't be available until the beginning of September so I'm a bit in limbo at the moment, also waiting now for an appointment for the endoscopic ultrasound. I'm not very good at living with 'may be' and just want to know what's going on and how it will be dealt with, I realise, though, that I have to be patient - not really my forte!

I think it will be helpful to hear from the Macmillan nurse who, I'm told, will phone me within two weeks. I have a few questions to ask her and may feel a bit less in limbo after that.

Meanwhile, I feel better for having got the gastroscopy out of the way. Now, I'm 'looking forward' (not really!) to a colonoscopy on September 5th as when they did the last one they found polyps and want to remove them. I was cross that they didn't do them at the same time, but apparently I was only booked in for a 'diagnostic' procedure then, so have to go back for the removal. Anyone could have predicted polyps as they've had to remove them several times in the past so I was a bit annoyed at having to go through it again. Still, it will be good to get it done, I suppose.

I bet you feel a lot better for having had your hip done. I hope you're able to go away for your break and enjoy getting around without the pain.

Thanks again for your reply. It's much appreciated.

x Moy

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