GIST tumour

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Hi,

I’ve been just been diagnosed with cancer, after severe bleeding from the bottom and multiple transfusions I was given a CT scan where they found a large mass in my small bowel.

I was operated on the next day and they found a GIST tumour which is rare apparently and doesn’t respond to chemo or radiotherapy.

I’m having a PET scan to see if it’s spread and I’m so terrified as they said it’s incurable and I will be on immunotherapy either way to stop any further growths if they they are any, or to stop the cancer coming back. I’m a 45 mum of 6 boys and married and I just feel very alone.

has anyone been on immunotherapy and or had this kind of tumour?

BrenW 5 days ago

Hi positive thinking,

Wow what a diagnoses you've had. I am currently on immunotherapy and I also have small bowel cancer which in itself (so I am told!)

I was diagnosed in 2023, I had the tumour removed and then some supposedly adjuvent chemo afterwards as it was found in some lymph nodes that were removed. A scan at the end of last year showed a spread to lymph nodes around my abdomen so I started immunotherapy in December.

I will say the waiting for a plan is awful, Im a similar age to you and I have a daughter so that adds an extra layer of worry as well. Once I had a plan I felt better about the situation.

To reassure you about immunotherapy, it's I really tolerable treatment, the only side effects I have is some fatigue and my platelets are also a bit low but nothing compared to chemo and I had an immediate response to it, I had some pain that went within a week of my first dose - could be coincidence but I tell myself it isn't! Technically my cancer is stage 4 and therefore not curable but it is still treatable.

Let me know if any questions you have about the treatment or drop any worries into the thread, that's what the forum is here for.