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I have a neuroendocrine tumour in the small bowel and liver lesions
Neuroendocrine Tumors (NETs) | Last Active: Oct 28 10:09am | Replies (44)Comment receiving replies
@mhcohan
NETs specialists are few and far between. I'm not sure what part of the country you live in, but getting a consultation with a NET specialist right at the beginning of diagnosis and treatment is very important. @californiazebra might be able to tell you how she found a lung NET specialist.
Mayo Clinic has NET specialists at all three of its locations. Here is a link with information about obtaining a consultation with Mayo http://mayocl.in/1mtmR63.
If, for any reason, you cannot be seen at a Mayo facility, here is a listing of NET specialists worldwide, with U.S. doctors listed first (from the Carcinoid Cancer Foundation website).
https://www.carcinoid.org/for-patients/treatment/find-a-doctor/
Yes, asking the surgeon and the oncology team about their experience in treating NETs is undoubtedly a good idea as well. However, a NET specialist is still the best. NETs are a rare form of cancer and can best be treated by a specialist in the field. They tend to know about the best treatment options.
Replies to "@mhcohan NETs specialists are few and far between. I'm not sure what part of the country..."
@hopeful33250
My pulmonologist was the one who let me know NETs specialists existed. He recommended one in the next county. My local oncologist then recommended another in the next county when I asked. If the NETs specialist isn’t close to home they will work with your local oncologist to minimize travel. My NETs oncologist orders the octreotide injections but I receive the injections at my local oncologist who treats my breast cancer. Best to you.
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@hopeful33250 thank you so much for the wonderful information. I appreciate it very much. I live in Central Virginia, which is about 2-3 hrs to DC and northern VA and about 3 hrs to the border with NC. Unfortunately, do not live near Mayo. thank you for all the links you sent me.