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@hopeful33250

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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Replies to "Hello @kdbug and welcome to Mayo Connect. I'm so glad that you found this forum. As..."

My GI doc (whom I work with…I’m a surgery RN) removed the polyp with a cold snare and said he ‘believed’ he got it all. I still have the same symptoms though. Whether or not they are or were due to the NET is unknown. Normally when a suspicious polyp or growth is removed, a tattoo is placed to mark the location so that additional tissue can be removed if the margins of the biopsy aren’t clear. Since mine just looked like a normal polyp, this wasn’t done. I think since NETs are considered slow growing and mine is described as a grade 1, the Dr figures, no rush. But I’m still concerned that all the margins of the tumor weren’t removed. Sorry…. Rambling…and scared!