Confused about diagnosis: Carcinoid tumor in rectal area

My guess is that it’s early enough that once it’s removed nothing further will be needed.

Welcome, @4237220. I agree with @maya8238 that it sounds like the cancer has been caught early and surgery may be the only necessary treatment. The information you've been given so far does leave the door open for asking more questions. I think you need better clarification.

Carcinoid tumor is a type of neuroendocrine tumor that grows from neuroendocrine cells. Carcinoid tumors 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.

@hopeful33250 is familiar with carcinoid tumors of the GI tract. She may be able to help you with questions to ask your cancer care team.

@4237220, has your surgery been scheduled already?

No, doctor would like to do PET scan first. I was told we were going to be doing a “lower anterior resection.” PET scan was denied by insurance (not sure why. Waiting to hear back.

Sorry to hear what you are going through. If they already did the MRI which shows a problem insurance should approve the pet scan. Maybe find out why insurance denied it. I had a problem getting my pet scan for a problem area. We had to do a CT before they would approve it. Now we just watch it. My issue is in my thymus.

Hello @4237220

I would like to join @colleenyoung in welcoming you to Mayo Connect. I can certainly understand your confusion and your concerns. I have had three surgeries for carcinoid cancer (2003, 2005 and then again in 2016). Carcinoid cancer can be a very slow growing cancer. It is, however, a rare form of cancer, and can be baffling for a patient (and even for oncologists who are not Carcinoid specialists). Carcinoids do represent a type of cancer. Have you to read the biopsy reports in order to better understand this diagnosis? If not, please do so. The reports will probably be available on the patient portal. If you don't have access to a patient portal, your doctor's office will be able to give you a copy of all of the reports.

I would encourage you to do a little research on your own to understand a bit more about carcinoid cancer. The Carcinoid Cancer Foundation (CCF) is an excellent resource that offers patient support and information. Here is the link, https://www.carcinoid.org/for-patients/. You can find a great deal of information at this website.

Blood tests and a 24-hour urine test are important tests to be done when carcinoid cancer is discovered. If you look at the patient resources on the CCF website, you will have some background as to the type of testing that needs to be done. This will give you an educated starting point for talking with your oncologist, the surgeon as well as the insurance company. It is important, if possible, to consult with a Carcinoid specialist. If your doctors are not carcinoid specialists, it is important that you be as educated as possible.

Like you, I at first thought that Carcinoids were a precancerous condition. However, I've learned that is not the case. While it is slow growing, it is a rare type of cancer.

What type of blood tests have been done? Have you had a 24-hour-urine test?

@4237220 it’s good to know it was caught early.
Regarding the insurance denial, It’s not unusual for insurers to deny some claims or say they won’t cover a test, procedure, or service that doctors may order. You can appeal many types of health insurance decisions – sometimes it is possible to appeal even things that are written into your health plan’s contract. If the insurer denies a procedure, it must explain to you your right to appeal the decision. If you ask for it, they must give you all the information about the decision. You can ask for this information from a customer service representative or case manager at your insurance company before you make a formal appeal. You can appeal the decision with a copy of the denial letter and your doctor's explanation, along with any other written information that supports using the test or treatment that has been denied. Sometimes the test or service will only need to be “coded” differently. If it still denied, Request a written response. (Keep the originals of all the letters you get; your doctor’s team may be able to help you make copies if you need them.)
Keep a record of dates, names, and conversations you have about the denial.
Formally appeal the denial in writing, explaining why you think the procedure should Be approved.
Get help from the consumer services division of your state insurance department or commission.

It’s a process but it’s something to consider for
You need certain procedures to confirm a diagnosis and move forward with treatment.

I hope this helps and my prayers are with you.

Is Squamous Cell Carcinoma a Carcinoid?

Hello @jacqquie,

As you probably know, Squamous Cell Carcinoma is a type of skin cancer. Here is a link to the American Cancer Society website that explains the three major types of skin cancer,
--American Cancer Society
https://www.skincancer.org/skin-cancer-information/
Carcinoid cancer usually is found in the digestive tract or the lungs, although it has been found in other organs. Has a doctor (or a biopsy report) indicated that this type of cancer is carcinoid?

No medical personnel suggested Carcinoid cancer. In the course of doing some research, I read a short snippet about Carcinoid cancer that made me wonder if it might be a distant cousin of my diagnosed Squamous cell carcinoma - which I know is skin cancer. Thanks for the clarification and for the link to the skin cancer site. I appreciate it.

Have you had surgery for the Squamous cell carcinoma, @jacqquie? If so, how long ago was the surgery?