1. < Neuroendocrine Tumors (NETs)

Confused about diagnosis: Carcinoid tumor in rectal area

Posted by 4237220 @4237220, Jan 12, 2023

I am confused about my diagnosis and the information the colorectal surgeon gave me. My oncologist has referred to what they have found as cancer but the surgeon referred to is as if it is precancerous. I had a colonoscopy that found a tumor. That was tested and it was a carcinoid tumor. I then had a sigmoidoscopy which produced removal of a polyp. Finally, recently I had an MRI of the pelvis that showed a tumor in rectal area. Oncologist sent me straight to surgeon. Surgeon and oncologist noted needed removal of tumor with surgery. After reading about the surgery proposed online (Mayo clinic)it seems to be stage 1 rectal cancer. Is this cancer?

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

merenyc | @merenyc | Nov 3, 2023
In reply to @kdbug "My GI doc (whom I work with…I’m a surgery RN) removed the polyp with a cold..." + (show)
@kdbug

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!

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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.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Nov 3, 2023
In reply to @kdbug "My GI doc (whom I work with…I’m a surgery RN) removed the polyp with a cold..." + (show)
@kdbug

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!

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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?

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Nov 3, 2023
In reply to @merenyc "My margins were not clear in June either, so I go back in January. My doctor..." + (show)
@merenyc

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.

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Hello @merenyc,

Your post was very informative as well as helpful. I appreciate you sharing your experience with @kdbug and the group as a whole. It sounds like it was helpful for you to have the photos from the procedure. Your doctor sounds very thorough.

How are you feeling since the first surgery?

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merenyc | @merenyc | Nov 3, 2023

I’m happy it helped. I actually have photos from the colonoscopy when they discovered the NET, too. The second procedure was more intense and more tests were done at the same time to see if there were other NETs too small to see on the regular colonoscopy in the area. My doctor was great. As you see from above, the first doctor said it was not cancer. Basically, rectal NETs are the easiest to treat, so, with humor, my doctor told me before surgery that it’s the best kind if you are going to have cancer at all.

I feel fine, although I have had weird hot flashes and fatigue. This may also be menopause, though. I really have just put it out of my mind. I can’t change the diagnosis, I can only follow up as ordered. I did not know when I got the first colonoscopy that Mount Sinai had an NET center, so I was lucky to be in the network already. My primary is with Mount Sinai too.

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mikecincy | @mikecincy | Nov 3, 2023
In reply to @kdbug "My GI doc (whom I work with…I’m a surgery RN) removed the polyp with a cold..." + (show)
@kdbug

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!

Jump to this post

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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