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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
Hello. I am new to this forum. I have a 4mm rectal NET , well defined, grade 1 found during a routine colonoscopy (my first), on April 27, 2023. I saw a specialist on May 24 after pushing for an earlier waitlist appointment, and will have it removed on June 27, of course after calling for cancellations twice per week to move surgery up 3 weeks.
I saw the lab report on my electronic chart before speaking to my doctor. I called and asked him if it was cancer. He said it was like pre cancer and needed to be removed. Clearly the specialist was more up front, although my chart still says it’s benign. I am confused about the diagnosis. The specialist described it like a melanoma, and I will need to monitor after, but treatment right now is just removal since it’s so small. I don’t know where to find the best information from here. Any information would be helpful.
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Hello @merenyc and welcome to the NET support group on Mayo Connect. There are other members on Connect who have experienced rectal NETs. I hope they will join in this discussion including @4237220 and @maya8238.
Neuroendocrine tumors grow from neuroendocrine cells. These are a type of slow-growing cancer that can occur in different places your body, usually in the digestive tract (stomach, appendix, small intestine, colon, rectum) or in the lungs. It surprises me that doctors still refer to it as pre-cancer. While NETs are very different from other types of cancer, they are still considered a rare form of cancer.
You might want to educate yourself on this rare type of cancer. Here are some websites that you might find helpful. The Mayo Clinic website has a great explanation of neuroendocrine tumors, here is the link. I would encourage you to read it.
https://www.mayoclinic.org/diseases-conditions/neuroendocrine-tumors/symptoms-causes/syc-20354132
As you can see from the first and second paragraphs:
"Neuroendocrine tumors are cancers that begin in specialized cells called neuroendocrine cells. Neuroendocrine cells have traits similar to those of nerve cells and hormone-producing cells.
Neuroendocrine tumors are rare and can occur anywhere in the body. Most neuroendocrine tumors occur in the lungs, appendix, small intestine, rectum and pancreas."
The Carcinoid Cancer Foundation (CCF) also provides good information.
Here is that website, https://www.carcinoid.org/for-patients/
You might want to consider a consultation with a NET specialist as you journey with this rare form of cancer. While there are many oncologists available, not all have the special training to effectively treat NETs.
Mayo Clinic has great NET specialists at all of their locations. If you would like an appointment at any of the three Mayo locations, here is the website for requesting an appointment, http://mayocl.in/1mtmR63.
Here is another listing of NET specialists from the CCF website,
https://www.carcinoid.org/for-patients/treatment/find-a-doctor/
You are fortunate to have your NET found early on as I was. I am a 20-year survivor of NETs (in the duodenal bulb), having had my first surgery in 2003, my second surgery in 2005 and my third surgery in 2016. I was not having symptoms when my NET was discovered in 2003. It was found during a routine upper endoscopy.
It sounds as if your NETs were also found incidentally. Was that your situation as well or were you having problems that led to the discovery?