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Tue, Sep 24 9:36am · I am not ok with this at all in Neuroendocrine Tumors (NETs)

Dear @freeangel, I read your post with a growing dread. I was first diagnosed with a rectal carcinoid during my first colonoscopy in 2000. It was removed during the colonoscopy. It was small and had not produced symptoms. My gastro, internist and oncologist all told me the problem was gone, don’t worry and a carcinoid isn’t really cancer anyway. After 5 years of worrying and being rebuffed, I followed my instincts and found a specialist — on my own — a plane ride away from my Texas home. He refuted everything my local doctors had told me. There are more chapters to my story, but my point is: Find an experienced specialist and see him/her asap. Almost 20 years later, those people exist all over the U.S. If you cannot quickly see the first specialist you call, hang up and call another. You have suffered too much emotionally, if not health-wise. The kind support people here can direct you to sites where specialists are listed. I have learned to research for myself by reading everything from newspaper articles to articles in medical journals — to understand what docs tell me, to ask questions, to challenge, if necessary. I know you can find someone who knows what tests to order and is familiar with paths forward, if a carcinoid diagnosis is, in fact, accurate. Use your understandable anger to help yourself get answers, to propel yourself forward toward the best help possible.

Dec 12, 2018 · New to Mayo: MEN1 with duodenum NET G1 in Neuroendocrine Tumors (NETs)

I, too, was told after 10 years I could relax. But in year 10, my gastroenterologist saw a “skin tag” in the same location as original rectal carcinoid. So now, Teresa, you have caused me to have questions. If they are too personal, please just ignore me. Are “increased pancreatic cysts” related to the duodenal tumors? If so, is there no treatment for them? Are they believed to be harmless? When you say bone pain, can you differentiate from aches caused by, say, flu or osteoarthritis or inflammation? Thank you.

Nov 20, 2018 · My son's neuroendocrine tumor in Neuroendocrine Tumors (NETs)

Maybe the list is not up to date.

Nov 20, 2018 · My son's neuroendocrine tumor in Neuroendocrine Tumors (NETs)

Well, I imagine this is a blow. You will have to trust your mother’s instinct. I was not treated at Mayo so I cannot offer you personal experience. Perhaps someone else knows this doctor? As someone who went through this twice and had to educate my own local non-specialist docs (admittedly in 2005), however, I felt vast relief when I consulted with a specialist on that list. If nothing else, I would tell your son’s doc that you are seeking a second-opinion consult with someone on that list. If you decide you feel more comfortable with the specialist, then switch. If all the insurance issues are in your favor, of course.

Nov 12, 2018 · My son's neuroendocrine tumor in Neuroendocrine Tumors (NETs)

Yikes. THREE in the same place? Has your specialist ventured any theories why you keep getting them? Does the small size of yours mean, as in my case, the likelihood it has spead is small? Do you have an annual upper GI like I have an annual colonoscopy?

Nov 12, 2018 · My son's neuroendocrine tumor in Neuroendocrine Tumors (NETs)

There are some differences among carcinoids, depending on where the primary tumor is located. That is my understanding from two consultations with a specialist. But NETs are slow-growing. It took 10 years for my recurrence to be visible to the doctor using the scope. In my case and perhaps with your son’s, the tumor usually does not metastacize if it is under 2 centimeters. Maybe you and your son can find some comfort in that. Also, did your son see a doctor at Mayo whose name you find on the link provided you in the first email? If so, good. If not, I strongly encourage you to consult with a specialist on that list.

Nov 12, 2018 · My son's neuroendocrine tumor in Neuroendocrine Tumors (NETs)

Did the path report tell you the size of the tumor? The fact that your son has no symptoms is a hopeful sign that the disease has not spread. I was found to have a rectal carcinoid in 2000 as a result of my first colonoscopy. My gastroenterologist, internist, consulting oncologist and a research oncologist at the University of Texas Southwestern Medical School all were wrong about my prognosis. Five years later I could no longer ignore my instincts and found one of three specialists at the time. He refuted everything I had been told by the five Dallas doctors. In 2010, the cancer returned and was removed via surgery. Probably due to an errant cell left behind when original tumor was removed. I had no symptoms. I continue to have an annual colonoscopy and blood-work. Now, the medical profession is more aware of neuroendocrine cancers. But I urge you to consult with a NET specialist.