Help and advice on GIST

Hi 

I'm afraid that I don't have any personal experience with GISTs but I noticed that your post hadn't had any replies yet so I thought I'd pop on to see if I could help.

If you type 'GIST' into the group's search bar you'll find quite a few previous posts which mention it. You could have a read through those and respond to any of the posters if you think they could help you further.

You might also want to copy and paste your post into a new one in the soft tissue sarcoma group, which I can see you've joined, as GISTs are a rare type of soft tissue sarcoma.

When you have a minute it would be great if you could pop something about your journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

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Hello Weemee

I hope this message finds you calm and on your way through a treatment plan under the care of some of the amazing specialists that are out there for GISTS.

I have just joined the group having been finally diagnosed with a very large GIST in my abdominal cavity that is attached to my stomach. I am 57 years old and generally healthy. Once I got my diagnosis things moved very quickly for me too. For months and only after being in intensive care with Sepsis, did my diagnosis change from a suspected pseudocyst which needed drained to a very large GIST. I owe great thanks to a wonderful team of doctors at the Glasgow Royal Infirmary. Only when a stent was put in to drain fluid was my diagnosis made from a biopsy. I am now under the care of a wonderful team of doctors at The Beatson hospital, Glasgow. 
I am interested in how your journey is going? I hope you are well. I have been put on Glivec to shrink the tumour prior to surgery. Unfortunately, my white blood count keeps going low so there is a bit of a battle going on. I am still only four weeks in. Surgery when it does happen will remove most or all of my stomach however I have read many peoples stories about how well they are surviving post op. I hold that optimism close to my heart. I had a PET scan that showed a small area of concern in my liver but was told not to worry about that at the moment and was given a liver MRI for the benefit of the surgical team in the future. I am still awaiting results.

I wonder if you can relate to parts of my journey. I hope you are doing okay and would live to know how things are going?

Sending huge hugs

Anne

Hi. Sorry to read about your Gist cancer and impending surgery. I trust things are now moving on in terms of information and advice? My Mum has just been diagnosed with Gist between stomach and spleen. We have very little info about it and she is quite unwell. It’s difficult to know how to help her but I am hoping for more guidance and support soon. I hope you have now had your surgery and that your recovery has been smooth.

Best wishes.