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GIST REMOVED 3rd November 2017

8 Mar 2018 10:30

I had a gist removal surgery on the upper part of my stomach resulting in loss of part of my stomach.The surgeon also removed my spleen as the tumour was growing towards it. The histology report confirmed that it was a complete removal and that there was no malignancy. My surgeon referred me to an Oncologist who studied the histology report and concluded that if removal was complete and the tumour was not malignant, it was pointless to place me on imatinib.

My Surgeon has been saying I should get Imatinib whilst my onclogist says its not necessary as the histology report says all cancer cells were localised and surgery was my cure.

He has however suggested endoscopy checks every 6 months.

Recently I have been experiencing stomach pains after eating certain foods like Pizza, roast chicken and dairy products.

I need advice from some with similar experiences as to how I can manage the Surgeon, Oncologist and the issue of my diet.


Re: GIST REMOVED 3rd November 2017

8 Mar 2018 11:11 in response to Willygist

Hi Willygist

Apart from the nurses, we're not medically qualified and so can't really offer medical opinions. You can speak to the nurses on 0808 800 4040 or by posting in the Ask The Nurses section.

I'm definitely not a doctor, but I have a perspective as a cancer survivor.

All tissue that is removed in surgery as a matter of course goes to the path lab for detailed examination. The surgeon sees what he or she removes, but of course is really concentrating on other matters during the operation. It's actually the pathologist who gets to see the bigger picture. Sometimes the bigger picture is good news, and sometimes it's bad.  In your case, it's good news. You had a non-malignant tumour removed completely. That's excellent news. So, as a lay person, it seems to me that the oncologist is spot on by saying that you don't need follow up treatment.  The endoscopy checks are simply a prudent step.

Of course, from the point of view of a worried patient, you've had a brush with cancer and it's not pleasant. Although you might know intellectually that a non-malignant tumour isn't actually cancer, I dare say that for some months, your mind will feel completely differently, and your body will be telling you that more needs to be done.  I know this feeling myself. I had a brush with a possible cancer over Xmas, and although I got the all clear over a month ago, I still feel somewhat apprehensive, but that fear is gradually settling down. 

As for the stomach pains, you've had major surgery in that area, and your body is still coming to terms with the changes that the surgeons have made inside you. You name three items that I have to eat carefully otherwise they bring on indigestion! In fact, I can hardly cope with dairy at all. Couple that with the continued worry you're feeling then maybe you shouldn't be surprised that your stomach is protesting.

You can go to your GP and say you've got digestion problems, and also discuss the need for further treatment. Your GP can set your mind at rest, and possibly prescribe (or change) a drug to help your indigestion. 

As I said earlier, I'm not a doctor and this is simply a personal view. 

Re: GIST REMOVED 3rd November 2017

8 Mar 2018 12:44 in response to telemando

Thank you for the share. I appreciate