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Just diagnosed with pancreatic NET stage 1

Neuroendocrine Tumors (NETs) | Last Active: May 14 8:56pm | Replies (152)
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@mmerry

I would like to thank you so much for this reply and the link for the NET specialists. I was diagnosed with a 1.7 cm PNET in the tail of my pancreas in January 2023 incidentally and it appears to be non functioning. I am in Canada and went to the one of best cancer hospitals in Toronto, Canada. They have run many tests and scans including PET scan and CT's but in 8 months I have yet to speak to one doctor. Not one. So I have no one to ask questions of such as "Shouldn't we do a biopsy or is it to risky to biopsy when the NET is in the tail" .
They have put me on the 6 month watch and wait scan approach which I am grateful for but sure would like to have a doc to ask basic questions of. So thanks for this list as I will make my way to one of the Canadian docs on this list.

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Replies to "I would like to thank you so much for this reply and the link for the..."
Teresa, Volunteer Mentor | @hopeful33250 | Sep 2, 2023

Hi @mmerry

If you read through the posts in the NETs group, you will see that many of the members are also on the "wait and watch" approach. It seems to be a common approach. Most patients who are following this protocol feels like you do, they want answers, a biopsy or just something to make sure they know what is going on. I am glad to hear that you are with a good cancer center in Toronto.

I'd love to hear from you again. Will you continue to post updates and questions as you continue on this NETs journey?

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ricki8 | @ricki8 | Sep 5, 2023

Hi @mmerry
I am on the other side of this big country - Vancouver, and with BC Cancer (which is also highly recommended). I was fortunate to get into a 'Clinical Trial' which guarantees a lot of attention from assorted professionals for NETs. My Oncologist told me that mine was slow-growing. Two months after my last PET scan, some symptoms appeared that made me feel I should get checked out at the hospital E.R. They took more tests and found that my multiple liver tumours had grown 20% (in 2 months!). I was given morphine (I could barely walk) and sent home with the same drug.
That got the attention of my Oncologist and she set up a surgical team. My suggestion: be your own advocate, ask a lot of questions and don't be afraid to take charge. This type of cancer is not a 'one size fits all'. I wish you the best 💝

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