GIST

[reneeelizabeth]

Hey 🙂 I've just been diagnosed with a GIST tumour which from my understanding are pretty rare.  I'm wondering if there is anyone else going through something similar and can shed light on what their experience has been.

[Katekat]

Hi @reneeelizabeth,

Just bumping your post up and also wanted to check in with you to see how everything is going?

Has anyone else had any experience with GIST or Gastrointestinal stromal tumours?

The following might also be of help to you:

• Understanding Stomach and Oesophageal Cancers - pdf book
• Coping with a cancer diagnosis - podcast

We also have a service that may interest you, called Cancer Connect, which provides you with the opportunity to talk one-on-one over the phone with a trained volunteer who has had a similar cancer or experience. Please call 02 9334 1870 if you're interested, or send an email to onlinecommunity@nswcc.org.au with your phone number and I can arrange for someone to give you a call 

[Jan61]

I am sorry for your diagnosis.  It is indeed a very rare cancer. My neice was diagnoased with gist. She attended the Peter Mac centre in Melbourne as there were so few Dr's that knew anything about gist. They consulted with specialists in the US. There used to be a listserve forum online. 

[Debs56]

Hi there.....I have just had a GIST removed which was 7cm in length and attached to my bowel. Had a small bowel resection as well. I am seeing Oncologist to discuss of further treatment is needed. Even though the mitotic rate for the tumour was low he was concerned about the size which is moderate and could metastasize.

[Bellbridgebelle]

I see your post was from awhile ago... so you have most probably sorted yourself out by now! If you’re on Facebook, I’ve found 2 sites most helpful - gist survivors (from all over the world) and au-nz gisters for those in Australia and New Zealand. Everyone seems to respond to treatment differently but good to read some tips on how to survive side effects!!! Good luck!

[Bronwyn]

Hi

I was diagnosed with GIST nearly 18 years ago. I have had 2 surguries and have been on oral chemo called Glivec for 16 years. I am a success story and would love to chat. My experience of late though is that the treatment is really starting to affect my quality of life and I am seeking support and medical assistance to help with side effects. 

Bron

[Debs56]

Hi Bron,

18 years free is fantastic !  I am yet to see if treatment is recommended by oncologist yet.  After reading comments on the gist support group, I'm not looking forward to the side effects that come with the treatment. 

Hope the experts can sort your meds out Bron to better suit your course of treatment. Keep in touch via this contact, and let us all know your outcome.  Take care

[Debs56]

Hi, I have joined the gist support group and the au/nz Gisters.

I did get a little overwhelmed with all the posts.....I guess I need to keep telling myself that everybody is different and each of us respond to treatment in different ways. 

My journey has now begun, and now I join the long list of gisters !!

Good luck to is all.