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Hello @lenny48ca and welcome to the NETs discussion on Mayo Clinic Connect. I don't suppose there is an answer to your question about a mortality rate for NETs. Like any cancer, NETs does not follow a particular pattern and each person's journey is unique to them.

If you read through the other discussions in this support group, you will find different stories of treatment and of life after treatment. For example, I am a 20-year survivor of NETs in the upper digestive tract, having had my first surgery in 2003 and my last surgery in 2016. I have had no symptoms; my NET was originally found incidentally. So far, surgery has been my only treatment and there appears to be no indication of metastasis.

There are some things that are important after you receive a NET diagnosis, though, which can certainly help you. First, learn all you can about this rare form of cancer. The Carcinoid Cancer Foundation (CCF) is a good place to start. Here you will find videos of NET specialists talking about the ways to diagnose, follow-up as well as the latest treatment modalities. Here is the website:
Second, it is important to have at least one consultation (in-person or virtual) with a NET specialist. Here is a link to a list of NET specialists throughout the world,
–Find a Doctor
I hope that this helps you as you begin this journey with NETs. If you are comfortable sharing more, I wondering: How was your NET diagnosed (what tests were done, etc.); what, if any, were your symptoms, has any treatment been suggested?

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Replies to "Hello @lenny48ca and welcome to the NETs discussion on Mayo Clinic Connect. I don't suppose there..."

I discovered my tumor putting on underarm deodorant when I felt a lump in my right armpit. A needle biopsy was done as well as c/t and pet scans followed by an MRI, which revealed an abnormality on my pancreas. I’m undergoing a biopsy on that abnormality on Friday. My oncologist tells me one of three possible outcomes are possible. The abnormality could be 1) nothing or 2) a new cancer or 3) the same cancer as in my armpit. The worst outcome is the last, I think. I have surgery scheduled for the May 26th, although my surgery might be canceled followed by palliative care. It is upsetting that I will have to wait three more weeks after the biopsy for the tumor in my armpit to be removed. It’s grown now to the size and feel of an almost ripe avocado.