What's your NETs treatment and surveillance protocol?

My first tumor was in the small intestine (2014) and successfully removed. The second tumor was in a lymph node (8/2022) and successfully removed. I am receiving a hormone treatment, a once a month injection of Somatuline Depot. However, I am wondering how effective or necessary this treatment is. My understanding is that hormone treatments are not necessarily protocol. I would love input on this. Thank you.

The protocol used by most oncologists is based on the National Comprehensive Cancer Network's recommendations, and those are based on the site and stage of the disease. So I would think the best way to get this information would be to talk to your doctor.
I was diagnosed in March 2018 when I had a blockage in my small intestine, which turned out to be a neuroendocrine tumor. But they also found one in my stomach which was determined to be "too dangerous to remove". So I have been on monthly injections of Octreotide since. There was another blockage in my large intestine in July 2019 which required more surgery. I had PRRT treatment at Mayo in 2021. Because my condition is considered "stable", my protocol is Octreotide injections every 28 days, labs (Chromogranin A, CMP, CBC, Serotonin levels) every 3 months and visits with the oncologist.
So yes there are general guidelines and protocols but individualization within those. They should also consider patient preference, so doing your own research is very important so you can be an advocate for yourself.

Hello @frenchmustard and welcome to the NETs discussion group. I appreciate you sharing your journey with our community. You ask some good questions. There are routine tests/scans that are usually done. An oncologist, who is a NET specialist, will most likely be aware of the follow up tests that need to be done on a regular basis.

Here is some information from the Carcinoid Cancer Foundation (CCF) listing some of those important tests that are used for diagnosis as well as follow-up,

--Diagnosis and Follow Up Tests - Carcinoid Cancer Foundation
https://www.carcinoid.org/for-patients/diagnosis/diagnosis-and-follow-up-tests/
Are you going to a research-oriented health care center? What type of follow up tests are being recommended by your oncologist?

Hi this is monkey 5333 and I was replying to someone in this
Group about follow up tests for NETs. I lost the connection and if the person who contacted me would contact me again I would appreciate it.

My oncologist is affiliated with a "teaching" university. Follow up tests include Chromogranin testing and other blood work.

Hello @catob and welcome to the discussion group on Mayo Connect. I appreciate your posting about your experience with NETs. Each of us travels a different road, but we all have much in common as we seek to find the best treatment possible. I have had three surgeries (2003, 2005 and then again in 2016) for NETs in the upper digestive tract.

You mentioned that you are having injections once a month. Are these injections being used to treat symptoms of carcinoid syndrome or are the injections being used as treatment for the recurrence in the lymph node?

the recurrence in the lymph node?

oops. My reply was not a question. I was told that it was hard to tell if this cancer is spreading through the lymph system so my treatment is to slow the occurrence of any new tumors.

Monkey, are you looking for this discussion?
- Pain control using a heating pad https://connect.mayoclinic.org/discussion/pain-control-using-a-heating-pad/

If you go to your profile and then click Comments, you can find all your previous posts.

Hi! I am also getting 4th mo SamotulineDepot injections due to small intestine NET primary with metastasis in liver. Question: about 2 weeks after shot a wave of depression hits me hard for about a week. Have you experienced this?