Good morning all!
I'm Moy and I posted a while ago but a lot has happened since then.
I have a GIST in my duodenum. Unfortunately the position of it meant I would need a Whipple procedure (may not be spelled correctly) which could take up to 8 hours.
I was sent for a CPEX assessment where I had to ride an exercise bike whilst heart and lungs were monitored electronically. Unfortunately, I needed a minimum score of 11 to have the op but only managed 8.5 and so the op has been denied.
This came as a huge anticlimax / disappointment yet also relief!
Instead, I am being referred to an oncologist to discuss oral medications to shrink the tumour and keep it small.
I have mixed feelings. Clearly, my comorbidities compromise the functioning of my heart and lungs too much for them to take the risk of operating. I was told they could not guarantee a good outcome or an acceptable post op quality of life. However, I'm now having to go down another new path and start all over again.
I don't have a choice in the matter now, so will have to go with the flow, but I am wondering how long you can be treated for a GIST before it stops responding to the meds. If it had been the best option they would not have been keen to offer the op in the first place and a lot of time and effort has been spent on checking my suitability which suggests I have won the consolation prize. I am not yet 74 (May birthday) and hope to have a good few years ahead of me. I hate the thought that I have to live with this thing inside me for ever which is not yet cancerous, but may become so.
Can anyone relate to this please? Is anyone else living with a similarly placed GIST and just taking medication? Any thoughts on how long it can continue?
I will see the oncologist on January 27th, and until them I'm on my own with it! Any advice or words of encouragement would be welcome, or even just to know I'm not the only one in this position.
x Moy
Hi Moy
My wife has a gynecological Leiomyosarcoma rather than GIST but in terms of relating to what you have said otherwise I can very much relate.
My wife was referred for a hysterectomy but due to comorbidity the consultant was not happy to proceed. Long story but ended up with her LMS being seeded in to her lung and an emergency hysterectomy.
Anyway when the oncology finally worked out she actually had LMS they offered chemotherapy - the first was fairly successful in terms of the cancer but the side effects were difficult. Later they tried a different chemo and it seems to have put the cancer to sleep - and it has been like that now for over 10 years.
It took a while for us to become comfortable with the idea of living with cancer - but it sure is better than the alternative.
<<hugs>>
Steve
