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NIH clinical study looking for the gene causing carcinoid cancer

Neuroendocrine Tumors (NETs) | Last Active: Aug 13, 2017 | Replies (6)
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@hopeful33250

@collielady

Hello Faith:

I appreciate your sharing your family's story. I am so sorry to hear of all the NET diagnoses in your family. I'm sure that you know much more about NETs than many of us. We have several members who have others in their family with a NET diagnosis. I am sure that they will find this NIH study of interest.

I had not heard of Merkel cell carcinoma before but Mayo Clinic has some information about it on their website, http://www.mayoclinic.org/diseases-conditions/merkel-cell-carcinoma/home/ovc-20165247. It is apparently a NET that results in skin cancer.

Are your family members involved with large medical centers who are following their treatment? What type of treatments are available for the Merkel cell carcinoma?

Teresa

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Replies to "@collielady Hello Faith: I appreciate your sharing your family's story. I am so sorry to hear..."
Faith M | @collielady | Aug 12, 2017

Hi Teresa

My sister went to a hospital near her in Delaware. Not sure which one but I do think it is a large one. Her tumors were found accidentally when she fell and thought she had broken a rib. Chest x-ray showed the tumors which turned out to be carcinoids. She is being followed with CgA marker tests every six months.

My nephew (not her son BTW) lives in Florida. His insurance would not cover him going to Tampa where the NET specialists are. His has had many basal cell and squamous cell cancers treated with surgery and radiation. His dermatologist sent him to a local surgeon for removal of the Merkel Cell tumor that was on his collar bone. And a breast cancer surgeon removed a few sentinel lymph nodes that were negative. His only followup will be with his dermatologist who checks him every few months.

I have just started reading "But You Look So Good..." and it seems that many patients have recurrences in the future. As far as I know neither my sister or nephew have problems with carcinoid syndrome.

Faith

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Teresa, Volunteer Mentor | @hopeful33250 | Aug 12, 2017

@collielady

Thanks for providing more details about their problems. While I have had 3 surgeries for carcinoids, I also do not have carcinoid syndrome, with the flushing, diarrhea, etc. The recurrences are stressful, though.

Teresa

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