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I have a neuroendocrine tumour in the small bowel and liver lesions
Neuroendocrine Tumors (NETs) | Last Active: 1 hour ago | Replies (31)Comment receiving replies
@hopeful33250 forgot to say the nodule is now 23 mm ( it grew yearly from 8 to 10, 11, 13,15, 23mm). How do I find out if my thoracic surgeon is part of a NETs team? just ask I guess (?!)
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@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.