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Confused about diagnosis: Carcinoid tumor in rectal area
Neuroendocrine Tumors (NETs) | Last Active: Nov 3, 2023 | Replies (35)Comment receiving replies
My GI doc (whom I work with…I’m a surgery RN) removed the polyp with a cold snare and said he ‘believed’ he got it all. I still have the same symptoms though. Whether or not they are or were due to the NET is unknown. Normally when a suspicious polyp or growth is removed, a tattoo is placed to mark the location so that additional tissue can be removed if the margins of the biopsy aren’t clear. Since mine just looked like a normal polyp, this wasn’t done. I think since NETs are considered slow growing and mine is described as a grade 1, the Dr figures, no rush. But I’m still concerned that all the margins of the tumor weren’t removed. Sorry…. Rambling…and scared!
Replies to "My GI doc (whom I work with…I’m a surgery RN) removed the polyp with a cold..."
Rambling and scared are all part of this diagnosis, @kdbug. No need to apologize. Your doctor is right that NETs are slow growing and rectal NETs are usually not as aggressive as NETs in other locations.
Still, I respect your concerns, especially since clear margins were not determined for sure. Follow your feelings and your concerns. If a second opinion/consultation with a NETs specialist would ease your mind, then I encourage you to do so.
Will you continue to post and let me know how you're doing?
I had my rectal NET discovered May 2023 during a routine colonoscopy, and my GI doctor scheduled me a lower EUS on Aug, 2023 to remove more tissues around the original polys. Before my 2nd appointment with my GI doctor, I followed advise on this forum to see a NET specialist, and had PET/CT scan.
Neither Biopsies of the 2nd GI visit nor PET/CT scan found anything concerning. But I am certainly released after those checkups.
I just watched this video about rectal NET from Youtube (https://www.youtube.com/watch?v=icRCKPZDO30).
Best wishes on your journey with NETs!
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My margins were not clear in June either, so I go back in January. My doctor at Mount Sinai (part of an NET center in NYC) said that prior removal, first from the biopsy, then surgical procedure, leave a scar, so they map the scar and will remove more in January, if necessary. I have photos from the procedure, so I could make out a bit what he was talking about before he removed more.