Searching for info re NETs and heart issues

Posted by allan2022 @allan2022, Feb 12, 2023

I was diagnosed in Feb. 2022 with a NET tumor in the small intestine that was determined to be stage 4. I just returned for MDA and was very disappointed in the nonchalant attitude from the doctor I was assigned. The only good thing I got from this visit, if you can call it "good"--- his diagnosis of an enlarged heart that could be affecting my blood pressure (on the high side all the time). He suggested I see a cardiologist ASAP. Has anyone had this diagnosis with their NET?

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

Colleen Young, Connect Director | @colleenyoung | Feb 12, 2023

Hi @allan2022, welcome. I moved your message to the Neuroendocrine Tumors (NETs) Support Group here https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/ where you'll meet many other members with NETs and with NETs of the small intestine like @hopeful33250 @harley4650 @emmiel14 @christine714 @kellywally @dbamos1945 @monkey5333 and more.

My dad had a similar issue where his heart issues had to be taken care of before he could proceed with treatment for colon cancer. His left ventricle didn't pump well and may have been an issue he lived with all his life, but they wanted a cardiology consult to confirm his heart issues were managed before proceeding with surgery and chemo.

Existing heart issues can be a concern with some treatment options. You may ask about a cardio-oncology specialist or department.

Mayo Clinic offers a program to address heart problems associated with cancer treatment called cardio-oncology or for people who have a pre-existing heart condition when diagnosed with cancer. The Cardio-Oncology Clinic (https://www.mayoclinic.org/departments-centers/cardio-oncology-clinic/overview/ovc-20442193) evaluates people prior to cancer treatment and patients who have experienced side effects due their treatment, and can help evaluate treatment when you have both cancer and heart conditions.

Do you have access to a similar cardio-oncology program?

Teresa, Volunteer Mentor | @hopeful33250 | Feb 12, 2023

Hello @allan2022, I would like to join Colleen, @colleenyoung, in welcoming you to the NET discussion on Mayo Connect. I have known of other NET patients who have experienced Carcinoid Heart Disease. I did a bit of research and found this article on the National Library of Medicine website. I don't know how it might relate to your specific question, but I thought you might be interested in the details:
https://pubmed.ncbi.nlm.nih.gov/19402369/.
I would strongly recommend that you seek out a NET specialist. Here is a list of NET/Carcinoid specialists. This list comes from the Carcinoid Cancer Foundation website.
–Find a Doctor
https://www.carcinoid.org/for-patients/treatment/find-a-doctor/
If you look at these specialists, you will see that Heidi M. Connolly, MD (Cardiology at Mayo Clinic) is listed. She deals specifically with carcinoid heart disease.

Were you aware of this heart problem before the doctor mentioned it? Are you having any heart-related symptoms?