Confused about diagnosis: Carcinoid tumor in rectal area

My original surgery for rectal cancer (when they closed the anus) was three years ago, following massive doses of chemo and radiation. A few months after that surgery I had 52 hyperbaric treatments in an attempt to get the surgery site to heal. The site did heal eventually (after a fashion) but never did feel "normal." Regular CT scans after that showed no sign of cancer. A couple of months ago the burning at the "old" surgery site became intense to the point where I couldn't stand it. I went back to surgeon who performed my surgery and he said, "I'm not going to touch that. It will never heal." Eventually I ended up with another surgeon who did a biopsy on the lesion which was labeled Squamous Cell Carcinoma. That surgeon sent me to a radiologist to get her opinion. The radiologist ordered a PET Scan which confirmed the Squamous Cell Carcinoma, but found no evidence of metasis. The radiologist and the surgeon then conferred and decided to try surgery on the skin cancer, hoping it will heal better this time because there has been no radiation to that area in over three years. I am meeting with the surgeon on Monday to finalize the plan for surgery.

Hi @4237220, any update? Has your cancer been staged? What are your treatment options?

@jacqquie, how did the meeting with your surgeon go?

I had no other options besides more surgery, which I had yesterday. They THINK they got all the cancerous tissue removed. I know I will have a very sore bottom for a long time because it is of course an open wound. But...you do what you have to do. They hope it will heal better this time because there has been a 3-year time lapse since the last radiation versus the 3-week time-lapse last time. I did go into A-Fib right after surgery, but they got it controlled rather quickly with medication. I will be seeing a cardiologist this week.

My best wishes to you.

This is why I continue to be confused about my diagnosis. I met with a different colorectal surgeon. My oncologist sent me to a new one. The original surgeon had opted for a PET scan that the insurance eventually denied. When I went back to my oncologist, he disagreed with the order of the PET scan and said it was not necessary. The new surgeon ordered a sigmoidoscopy immediately (which is this Wednesday) and surgery to remove what is labeled as “malignant tumor” on my paperwork (that surgery is next Wednesday). I will be having a low anterior resection done. I did ask that surgeon about whether it is cancer or not. He said that it was not exactly but that they treat it like cancer. That carcinoid tumors and endocrine. That left me more confused. The surgery he is performing is one is saw listed for stage one of colorectal cancer. His explanation didn’t make sense to me.

Thank you for this link. It was very helpful. I have done a 24 hour urine test. What should I look for with the results?

@4237220

After rereading many of your posts with Colleen, @colleenyoung, I think you would be wise for you to see a NET specialist. Carcinoids and/or NETs are definitely cancer but not the typical cancers that general oncologists see in the majority of their patients. If you could get even a virtual consultation, that might be very helpful to you in putting all of this together and getting the best treatment plan in place. Here is a list of these specialists, https://www.carcinoid.org/for-patients/treatment/find-a-doctor/.

If you have any problems with insurance coverage, please know that you can appeal any insurance denial. The process is different with every insurance company, but many patients have gone through this process.'

I would like to follow up with you. Will you let me know how this Wednesday's appointment goes?

Hello @4237220

I was noticing that your last post was a couple of weeks ago and I was wondering how you were doing?

I look forward to hearing from you again. Any new information from your doctor?

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.

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?