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Confused about diagnosis: Carcinoid tumor in rectal area
Neuroendocrine Tumors (NETs) | Last Active: Nov 3, 2023 | Replies (35)Comment receiving replies
Colonoscopy polyp ended up being a “profusely positive” NET. My GI doc stated he hasn’t had any experience with these and just recommended a recheck in 6 mo. Should I have some testing done of some kind to verify that there is no METs. I have had symptoms (loose stool, flushing) for sometime. GI doc doesn’t seem concerned. Should I be concerned or just let it go for now and wait it out?
Replies to "Colonoscopy polyp ended up being a “profusely positive” NET. My GI doc stated he hasn’t had..."
Hello @kdbug and welcome to Mayo Connect. I'm so glad that you found this forum. As a 20-year NET survivor, I understand how important it is to find a discussion group like this when you are dealing with a rare form of cancer.
I see that @smart1 has already responded to you and I agree with the suggestion that was made that you consult with a NET specialist (at least for one appointment, either in-person or virtual). Mayo Clinic has NET specialists at all three of their locations. If you would like to request a consultation, here is a link with information about a Mayo appointment, http://mayocl.in/1mtmR63. If for any reason, you are not able to see a specialist at Mayo, here is a list of NET specialists worldwide, https://www.carcinoid.org/for-patients/treatment/find-a-doctor/. You can check to see who might be available nearby. Often with a rare cancer, it might be good to travel a bit in order to see a NET specialist for at least one consultation to be sure you are on the right road for follow-up and treatment.
Your symptoms of flushing, loose stools can be symptoms of carcinoid syndrome. Since your current doctor admits to not being familiar with NETs, here is a list of suggested lab tests (blood and urine) that can be done to further determine carcinoid activity in your body, https://www.carcinoid.org/for-patients/diagnosis/diagnosis-and-follow-up-tests/. Have you had any of these tests?
I would certainly encourage you to educate yourself, as much as possible, regarding this rare form of cancer. It will help you ask good questions of your doctor and get the best treatment possible. The Carcinoid Cancer Foundation website is a good place to start,
https://www.carcinoid.org/for-patients/.
How are you feeling since the removal of the polyp?
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I recommend getting another opinion with a doctor that is familiar with NETS. A NET specialist would be even better. There are several tests that can be done to determine how extensive, functional/nonfunctional, etc. I, personally, would not feel comfortable waiting another 6 months. Since a NETS diagnosis is considered rare, there are doctors that are unfamiliar with it and which is why you will need to take action on your behalf to find someone that is knowledgable. Check out the Carcinoid Cancer Foundation for a list of NET specialists. Take care and if you have any questions this is a good place to be. You can check out the Neuroendocrine Tumors Support Group discussions area on this site, as well. Lots of questions have been answered there and can be helpful.