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Ruth Ann (@amyh2439)

Carcinoid cancer: Want to meet others

Neuroendocrine Tumors (NETs) | Last Active: Aug 7 1:15pm | Replies (93)

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@hopeful33250

My last experience (the best yet) I went to U of Michigan. They have a doctor there who removed a small lesion through an endoscopy procedure. U of Michigan also has a doctor who specializes in carcinoids, his name is Del Valle. I have an appointment with him next week. I believe it is important to be connected with a good teaching/research institution when you are dealing with something unique or rare, the hospital in your neighborhood might not be your best choice. It may involve some extra driving but it is worth the time and expense.

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Replies to "My last experience (the best yet) I went to U of Michigan. They have a doctor..."

thank-you i have been looking for someone that specializes in carcinoid tumors in the michigan area because i live in michigan…i will check out del valle from U of M. thank-you so much!!!

ralph

Ralph:  If you live in Michigan you might already be aware of a Carcinoid Support Group.  They are on the western part of the state, Grand Rapids.  So far, I’ve only been in contact with them though email and phone calls, since I’m in SE Michigan, however, the leader of the group has a lot of personal experience with carcinoids and has great info that he can send you.  He was the one who told me that many of their members have seen Dr. Del Valle , at U of M. Here is the website to find all of the carcinoid support groups in the U.S. http://www.carcinoid.org/resources/support-groups/directory/. Best wishes, Ralph!

I can second Teresa’s advice. My rectal carcinoid was discovered by accident during my first colonoscopy. But that doc and three specialists were wrong about the disease and prognosis. Five years later I found a specialist in another state who correctly predicted my type of carcinoid might return, when and where. Now there are more specialists than just the three I learned of in 2005. You MUST find a specialist and then thoroughly research his/her credentials and experience. You may have to travel, but it is your life.