← Return to I have a neuroendocrine tumour in the small bowel and liver lesions

Discussion
Comment receiving replies
Profile picture for Teresa, Volunteer Mentor @hopeful33250

@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.

Jump to this post


Replies to "@mhcohan NETs specialists are few and far between. I'm not sure what part of the country..."

@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.