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?

Jump to this post