Hello all,
First time poster in this section. So here’s an introduction!
Almost a year ago I was diagnosed with breast cancer. Had a large amount of breast removed where they found a new primary cancer, so two types in one breast. What fun!
Got through second surgery, and 4 weeks of radiotherapy all ok. Not fun but every day tried to make the best of things.
3 weeks ago I had a reduction of my ‘good’ boob as was very uneven. Surgery went well and I thought it was time to move onwards.
10 days post surgery I developed a clot in my leg which then travelled to my lung. Was rushed to hospital with breathing difficulties. Staff brilliant and got me on the blood thinners and on the CT scan within 4 hours so all good. Was asked to return the next day as they had seen some nodules on my lungs they wanted to investigate.
Returned the next day to find I’d been booked in for a CT scan of my abdomen, no idea why!
Back to the hospital again a week later (yesterday) to be told I’ve got a GIST and to await a biopsy and PET scan to explore further.
Still in shock but busy researching everything I can! I don’t even know what questions to ask!
Any advice would be appreciated.
Sorry for the long intro!
RS
Hi and a very warm welcome to the online community
Gosh, you have had a lot to deal with in the last year! It seems completely unfair that now you have to deal with a GIST.
I'm not a member of this group so don't have any experience with GIST but I noticed that your post had gone unanswered. By replying to you it will 'bump' it back to the top of the page where hopefully someone with experience of GIST can give you some advice.
As it's a type of soft tissue sarcoma you might also benefit from posting in that group which I see you've joined. Clicking on my link will take you there and you could copy and paste your post from here into a new one there.
I have found this information from Macmillan for you on GISTs which you might not yet have seen. You might also find this information on the sort of questions to ask helpful.
When you have a minute it would be really useful if could pop something about your journey so far into your profile as it 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 'Edit 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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"Never regret a day in your life, good days give you happiness, bad days give you experience"
Hi
Although it was nearly 3 years ago that I was diagnosed with cancer I do remember that feeling of shock very well 
Hopefully you'll get to hear soon what was discussed at the MDT meeting today. This meeting usually consists of a surgeon, medical and clinical oncologists, a radiologist, a pathologist and the nurse specialist who will be responsible for looking after you.
x
"Never regret a day in your life, good days give you happiness, bad days give you experience"
Sorry to hear that you haven't had any replies from anyone else who's had a GIST
Have you been assigned a cancer nurse specialist (CNS) as they would be your point of contact at the hospital. If you give them a ring they should be able to tell you what's happening.
x
"Never regret a day in your life, good days give you happiness, bad days give you experience"
Probably the best people to speak to if you don't yet have a point of contact would be the Patient Advisory and Liaison Service (PALS) at the hospital. They should be able to find out what's happening for you.
x
"Never regret a day in your life, good days give you happiness, bad days give you experience"
Morning
Were PALS able to help you yesterday?
x
"Never regret a day in your life, good days give you happiness, bad days give you experience"
