Gist diagnosis on Monday

I have found UKGisters on Facebook and am finding it a very helpful support group. I wonder if that's the one that was mentioned at your group. xx

Hiya Moy,

I also am on the GIST UK forum which I find helpful.

Hope your meeting went well at Brighton,were you diagnosed with inamitib?

Still recovering after op,does take a lot out of you.

Hope to are doing ok

Best Wishes

Hi! The appointment went well. Lovely oncologist but only arrived that morning having been working in London, so took some time to check my notes on the different systems! 

Unfortunately, the crucial bit of info was missing from my Royal Surrey notes so she has had to contact them to find out if I have the right mutation in the cells for the Imatinib to target. I rarely have something simple to deal with so am prepared to be one of the minority who can't have it and will be monitored - or maybe offered something else.

I have a phone consultation on Monday so should know then what the future holds. I am resigned to not having the op, which would have been a much bigger thing than I had initially expected, and prepared to give the Imatinib a go if I am, indeed, a suitable candidate. 

TBH the waiting is getting me down, but at least we can plan things a bit better now as not waiting for a date for surgery any more.

Hope things go well for you.

x Moy

Yes,hope all goes well for you also.

I’ll get the spelling of Imatinib right at last!

I am waiting for the staging now,can’t drive for 6 weeks after op though.Having to rely on lifts currently to go to doctors for dressing changes.Have had to cancel a hair appointment as can’t bend at the moment very well so be great maybe in a couple of weeks try to go,feel a bit more in the land of the living!

The forums are helpful aren’t they,you can learn quite a lot.

Did you have to have a biopsy to obtain the type of gist mutation?They have mentioned mitotic rate,that’s what my staging will tell me?Maybe they will advise me of the mutation as well.

Best wishes again for Monday.

Suki x

Nothing was mentioned about it when I had my biopsy feedback. I didn't know anything about it until the oncologist was telling me how the Imatinib works (targeted) and that it can only work if the cells have the right bit in them to target!  Royal Surrey hadn't mentioned anything about that. I hope I don't have to have another biopsy done to find out. I feel sure they must have tested it as they are the specialist centre, but you never know, do you?!

The oncologist told me last week that it is Stage 1, but the mitotic rate wasn't mentioned as far as I can recall. 

I actually think now that the operation would have been too much for my husband and me to cope with. I honestly thought it was going to be a small procedure when I was first diagnosed and had expected it to be all over by Christmas.  I was horrified when they said it was going to be 'massive' and they would need to take part of my pancreas, gall bladder, stomach, duodenum and colon to be sure of getting it all out! All because it's in a difficult location.  

At first, I just wanted it gone, but that's not going to happen so I've resigned myself to the possibility of the medical option and hope that it will do the trick.  I'm nearly 74 so if they can keep me going for a few more years, I won't have done so badly. Something else might get me first in any case, knowing my luck.

My husband reckons I'm trying to work my way through the medical dictionary!  He's 82 and hardly ever needs to see a doctor.  Since I retired at 59, it's been one thing after another for me. As soon as I've got one thing under control, something else rears its head.  Still, I'm still ok to enjoy plenty of things and we're not broke, so I guess it'll be worth hanging around for a few more years yet!

I'm so glad to be in contact now with others who have experience of GISTs as we all seem to know different bits of information and when you put it all together it makes more sense.

Take care and don't go overdoing things! I hope everything heals well.

x Moy

Hiya Moy,

Thank you for the information on imatinib,it was really helpful.

I think you are right about your operation.My GIST was in an awkward place also in the duodenum,my operation took 4.5 hours,so yours much have taken much longer with the additional organs.It does knock you about particularly when you get older.

Wishing you a positive consultation today.

Best wishes,

Suki x