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 | Jun 20, 2023

In reply to @hopeful33250 "Hello @merenyc and welcome to the NET support group on Mayo Connect. There are other members..." + (show)

@hopeful33250

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?

Jump to this post

Thank you! I was surprised too, then shocked when I sat with the specialist who was more clear about my diagnosis. The good news is that my specialist is at Mount Sinai, which is on a list of specialists I think you may have posted here. I’m still nervous, but a little less now.

Teresa, Volunteer Mentor | @hopeful33250 | Jun 21, 2023

In reply to @merenyc "Thank you! I was surprised too, then shocked when I sat with the specialist who was..." + (show)

Being nervous is very natural, @merenyc. I certainly can empathize with that feeling. Just keep asking questions and seeking support on Connect and we will be here when you need to share. After your surgery on the 27th, I'd love to hear from you again.

Has the surgeon explained how long you will be hospitalized after the surgery and what to expect?

rshea1204 | @rshea1204 | Jun 25, 2023

In reply to @hopeful33250 "Have you had surgery for the Squamous cell carcinoma, @jacqquie? If so, how long ago was..." + (show)

Mine was aggressive, the Docs here in AZ are great. It’s been harder than I thought… but that depends on the severity and where it is… mine was just a few hours.. no pain, good numbing. Long story. God bless. If you want to, stay in touch.

Colleen Young, Connect Director | @colleenyoung | Jul 3, 2023

In reply to @merenyc "Thank you! I was surprised too, then shocked when I sat with the specialist who was..." + (show)

@merenyc, you may also be interested in similar experiences by @4237220 @rshea1204 and others in this discussion:

- Confused about diagnosis: Carcinoid tumor in rectal area https://connect.mayoclinic.org/discussion/confused-about-diagnosis/

merenyc | @merenyc | Jul 3, 2023

Hi! It’s a confusing diagnosis. The short answer is yes, it’s cancer. I just had my tumor removed on 6/27. I had it done at Mount Sinai in New York. They have a NET specialty practice. Here is what I was told by my doctor after being first told it was pre-cancer. . . It’s cancer, but also the best and easiest to remove since it’s in the rectum. My doctor does not expect I will need additional treatment. They will class your tumor once it’s removed. I had a biopsy during a routine colonoscopy. Mine was grade 1, .44 mm. The biopsy tool takes a .7mm area, so it was a matter of going in to make sure it’s all out. I’m waiting on the pathology report, but there is also a grading system of cells I don’t understand. Mine was a k67 if I remember right. It means the cells decide slow and largely stay local. I had additional testing on 6/27, which was an ultra sound. No lymph node invasion. No other NETs found. Hang in there!

evee | @evee | Jul 4, 2023

In reply to @merenyc "Hi! It’s a confusing diagnosis. The short answer is yes, it’s cancer. I just had my..." + (show)

Thank you for the info. Have you been satisfied with Mt Sinai?

kdbug | @kdbug | Nov 1, 2023

Colonoscopy polyp ended up being a “profusely positive” NET. My GI doc stated he hasn’t had any experience with these and just recommended a recheck in 6 mo. Should I have some testing done of some kind to verify that there is no METs. I have had symptoms (loose stool, flushing) for sometime. GI doc doesn’t seem concerned. Should I be concerned or just let it go for now and wait it out?

smart1 | @smart1 | Nov 2, 2023

In reply to @kdbug "Colonoscopy polyp ended up being a “profusely positive” NET. My GI doc stated he hasn’t had..." + (show)

I recommend getting another opinion with a doctor that is familiar with NETS. A NET specialist would be even better. There are several tests that can be done to determine how extensive, functional/nonfunctional, etc. I, personally, would not feel comfortable waiting another 6 months. Since a NETS diagnosis is considered rare, there are doctors that are unfamiliar with it and which is why you will need to take action on your behalf to find someone that is knowledgable. Check out the Carcinoid Cancer Foundation for a list of NET specialists. Take care and if you have any questions this is a good place to be. You can check out the Neuroendocrine Tumors Support Group discussions area on this site, as well. Lots of questions have been answered there and can be helpful.

Teresa, Volunteer Mentor | @hopeful33250 | Nov 2, 2023

In reply to @kdbug "Colonoscopy polyp ended up being a “profusely positive” NET. My GI doc stated he hasn’t had..." + (show)

Hello @kdbug and welcome to Mayo Connect. I'm so glad that you found this forum. As a 20-year NET survivor, I understand how important it is to find a discussion group like this when you are dealing with a rare form of cancer.

I see that @smart1 has already responded to you and I agree with the suggestion that was made that you consult with a NET specialist (at least for one appointment, either in-person or virtual). Mayo Clinic has NET specialists at all three of their locations. If you would like to request a consultation, here is a link with information about a Mayo appointment, http://mayocl.in/1mtmR63. If for any reason, you are not able to see a specialist at Mayo, here is a list of NET specialists worldwide, https://www.carcinoid.org/for-patients/treatment/find-a-doctor/. You can check to see who might be available nearby. Often with a rare cancer, it might be good to travel a bit in order to see a NET specialist for at least one consultation to be sure you are on the right road for follow-up and treatment.

Your symptoms of flushing, loose stools can be symptoms of carcinoid syndrome. Since your current doctor admits to not being familiar with NETs, here is a list of suggested lab tests (blood and urine) that can be done to further determine carcinoid activity in your body, https://www.carcinoid.org/for-patients/diagnosis/diagnosis-and-follow-up-tests/. Have you had any of these tests?

I would certainly encourage you to educate yourself, as much as possible, regarding this rare form of cancer. It will help you ask good questions of your doctor and get the best treatment possible. The Carcinoid Cancer Foundation website is a good place to start,
https://www.carcinoid.org/for-patients/.
How are you feeling since the removal of the polyp?

kdbug | @kdbug | Nov 3, 2023

In reply to @hopeful33250 "Hello @kdbug and welcome to Mayo Connect. I'm so glad that you found this forum. As..." + (show)

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!