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@larenn

I was diagnosed with atypical carcinoid neuroendicrine tumors in March of 2022. I underwent surgery to remove a tumor from my lung and a smaller tumor just under my skin on my side. (There were many of these small tumors that had cropped up over the course of a year, before my diagnosis.) The smaller tumor turned out to be the same cancer. I had four chemotherapy treatments composed of Atezolzumab, Carboplatin and Etoposide, one every three weeks. Scans after the treatment showed no recurrence of tumors in my lung. The smaller tumors under my skin, however, were not affected, so my oncologist changed my treatment to an injection of Octreotide every 28 days. This week I have two scans scheduled to assess the effectivity of the Octreotide. As far as I can tell, the small tender tumors have not subsided; in fact, there are some newer ones. I'm very discouraged. Has anyone else had these small tender spots under the skin? They're too small, or thin, to light up on a scan, unfortunately, which just adds to my frustration.

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Replies to "I was diagnosed with atypical carcinoid neuroendicrine tumors in March of 2022. I underwent surgery to..."

Hello @larenn and welcome to Mayo Connect. It sounds as if you have a rather complex cancer diagnosis. I can certainty understand your concerns and frustration. It is good that there has been no recurrence of the lung carcinoids.

Am I correct in my understanding that the tumors under your skin are a type of Carcinoid Neuroendocrine tumors? Are these tumors painful?

Are you currently seeing a NETs specialist? If not, I would highly recommend that you, at the very least, have a consult with one. These specialists are the best qualified to know the best treatment plan for you.

How are you feeling since your March surgery?