So I am in a high risk group as my mother died from a ViPoma. Been have slight symptoms for over a year and during the CT Scan they discovered a growth on my pancreas. Passed out to Upper GI, NET(MDT) team and Pancreatic team. Gut hormone test and Tektrotyd scan have been completed.
My growth is 6mm and is comparatively tiny compare to some tumours when first found ( so i was told) No hormone changes were detected though my somatostatin is the high end of normal but still normal. It didn't pick up any tracer and I was told that was expected due to its size.
the upshot being i wasn't actually diagnosed with anything, yet I'm not being discharged and I'm due a rescan under the NET team in June. They are not doing any investigations into other types of pancreatic cancer. When asked if its was a strong belief thats its a NET nobody would confirm or deny,
So far its not cancer but I still have a growth and I still have symptoms and while I know we have caught it almost too early, and Im still on the radar i dont know how I should be feeling. . Its been three weeks since this and I have to sit and wait in limbo. Part of me is worried that it grows too quick and then I worry about it wont grow at all and the limbo continues.
Has anybody had the watchful waiting and how did it go?
Thank you and positive vibes to you all
Abby
Hi Abby and welcome to the online community
I'm very sorry to read that your mum died from a ViPoma which puts you in a high risk group and I can totally understand how worrying this must be for you.
I don't have any experience of this to share with you but I noticed you hadn't had any replies to your post yet. You can find others who have posted about being on watchful waiting by typing 'watchful waiting' into the search bar in the group. This will bring up any previous posts which mention it. You could have a read through those and then reply to any of the more recent ones if you think the poster may be able to help you further.
x
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