Confused about GIST

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I've recently been diagnosed with a GIST and been told I need a total stomach removal, then two years on targeted chemotherapy.

I haven't been given any information really about what it is, but the first nurse to give me my biopsy results over the phone said it wasn't cancer, but after reading information on GIST UK, University College London Hospital and various websites about GISTs, they all say GISTs are a rare form of cancer.

The surgeon told me it's something in the middle (also over the phone).

Can anyone tell me what is correct?

Feeling super anxious about surgery, and not really knowing what my diagnosis means is making me even more anxious.

Thanks.

src60 over 1 year ago

Hi Sara J

Our page on GIST is here so I wonder if there might me some confusion over "sarcoma" and "cancer" - I know when my wife was first diagnosed with Leiomyosarcoma I did not understand that meant cancer.

I can certainly understand your concern about the lack of clear information. It does sound like you are on a fairly standard treatment path though. Where will the surgery be performed - there are a few specialist centres for sarcoma - we are quite lucky to live quite close to Oxford so rather simple for us.

<<hugs>>

Steve

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Confused about GIST