Looking for neuroendocrine tumor (NET) with carcinoid syndrome support

Hello @hopeful2,

Yes, there are specialists who treat NETs at Mayo Clinic. In order to make an appointment with any of the Mayo facilities here is a link with information on how to schedule that appointment, http://mayocl.in/1mtmR63.

There is also an online support group for NET patients and family members that meets on the first Thursday of each month at 5:30 p.m. EST. If you are interested in attending that support group please contact, Candace Porter, LCSW-Oncology Social Worker, who facilitates that group. She will gladly send you the information you need to register for the July meeting. Just send her a post at @candacep or you can call and leave a message for her at 904-953-6831.

@hopeful2. Is this a new diagnosis for you, or for a friend or family member?

Thank you for your swift answer. This is for me. Still along way from deciphering the source. I am near a small rural hospital that has ignored many warning signs for a long time. I need expert advice soon, I cannot afford to lose any more time.

@hopeful2, I add my welcome along with Teresa's. You'll notice that I moved your post to the Neuroendocrine Tumors (NETs) support group https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/

I noticed that you originally posted to the Lung Cancer group. Do you have NETs of the lung?

It is too soon to tell where. I posted at that site because I could not find the NET group through the search engine. You have no idea how much I appreciate this Mayo service. I have been so alone in all of this. I wish that I had found you sooner, maybe I would have gotten a correct diagnosis sooner. You are very caring people. Something that I need badly about now. Thank you.

@hopeful2,

I look forward to learning more about your journey with this health issue. Would you be comfortable sharing more about your symptoms and what your current medical team is doing to rule out NETs?

I would strongly recommend that you seek care from a NET specialist. They are the best ones to diagnose and treat this rather rare form of cancer. If you would like to consult with Mayo Clinic, either in person or by video, here is the link where you can start this process,
http://mayocl.in/1mtmR63
I look forward to hearing from you. Will you post again?

Thank you for your concern. I will post again. I am waiting for more test results to come in. I really appreciate your advice to seek out a NET specialist. That is what my intuition is telling me as well.

My PCP ordered a 5HIAA based on his opinion that I have carcinoid syndrone. It came back in the normal range today. I do not know if that means I don't have cancer or what. I think I read on one of the medical clinic websites that one should go ahead and run other tests such as chromagranin-A (CgA). I live in a rural area with overworked PCPs. Any direction on this? My GASTRO says I also have EPI which I am having trouble finding a medicine I can tolerate. I wish I lived near a large city where I had access to specialists. I am just lucky that a GASTRO is 200 miles away. All other specialists are 3-400miles away. Appreciate any advice.

Hello @hopeful2

More than one test is needed to determine the possibility of carcinoid. Has your doctor ordered a serotonin blood test? A high serotonin level can also be indicative of a carcinoid problem. If your GI specialist is not nearby perhaps you can ask for a video consult. This might be a good option.

Given the EPI problem, have you had a CT scan or an MRI of the stomach?

@hopeful2,

Here is a listing of tests that can be used for the diagnosis and follow-up of carcinoids. This link is from the Carcinoid Cancer Foundation. It can give you some guidance for the tests that you need to be having, https://www.carcinoid.org/for-patients/diagnosis/diagnosis-and-follow-up-tests/. You might check to see how many of these tests you have had.

Thank you for your swift reply. In May 2022, I ended up in ER in April of 2022 with sudden onset chronic constipation and no anomalies were mentioned about my bowel only fluid filled loops in small bowel. In May of 2022 I was diagnosed with torturous colon and a 12 mm serrated polyp (benign) removed during a colonoscopy. In June of 2022 I was diagnosed with EPI and low sodium. I am 69 and well past menopause. I will ask that PCP conduct the CgA test and see if he balks. The symptoms that he said sounded like carcinoid are terrible night sweats, weakness, unrelenting Raynauds, agonizing gut and arm and leg pain and weight loss, new onset skin rashes and burning skin. He spent 16 months testing me for autoimmune which always came out normal. I see that I need to do the basic tests to see if he is on the right road after reading your carcinoid list of tests.