← Return to Carcinoid Tumorlets Neuroendocrine tumor/Cell Hyperplasia - DIPNECH
DiscussionCarcinoid Tumorlets Neuroendocrine tumor/Cell Hyperplasia - DIPNECH
Neuroendocrine Tumors (NETs) | Last Active: Dec 28, 2023 | Replies (42)Comment receiving replies
Replies to "Has anyone else been diagnosed with this condition? Please share your experiences…. Thank you!"
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.