Laparoscopic Possible Open Surgery Resection - Small Bowel NETS

Teresa, why am I not receiving the daily emails for the NET support group anymore?

Hi @stevestenberg31,

I'm really sorry that you haven't been getting the notifications from the NET support group. The best way to resolve this is to go to the Mayo Connect Help Center. Here is the link. https://connect.mayoclinic.org/help-center/

After you get to the Help Center, click on "Get Technical Support." Someone will then respond to you. If you have further problems, send me a PM and I'll see what I can do to help.

Hi Steve @stevestenberg31, If it's just the NET support group you are not receiving email notifications for new posts you might want to make sure you are still following the group. Go the NET support group home page that lists all of the discussions here - https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/.

Then check to make sure it says Following. If it says Follow, then click on the button to change it. If it says Following and you still are not receiving email notifications, see the topic How to Set Notification Preferences in the Help Center listed under How to use Mayo Clinic Connect. Here's the Help Center link from Teresa's @hopeful33250 post - https://connect.mayoclinic.org/help-center/.

Let us know if you still aren't able to receive the email notifications.

TY

I would contact your insurance and ask for special approval to see a qualified surgeon. Most insurances also pay for a second opinion consultation. The insurance rep on the phone may say, “no,” but you can ask to speak to a supervisor, and keep taking it up the ladder to seek approval. Your insurance may have a formal application or process by which you can request specialized care, appeal, etc. I would get your PCP and others involved by having them write letters to the proper insurance rep supporting your need for a specialized surgeon.
You might also speak to Mayo. Most insurances have out-of-network benefits and Mayo might accept that as payment.
Good luck to you!

I was diagnosed a year ago with a NET on the valve that connects the large and small intestines. My surgery was completed by a local general surgeon with the blessing of my oncologist at another facility. I had similar concerns prior to surgery and spoke to oncologist who reassured me. If you have an oncologist, perhaps you could speak to them first?

Good tips, @kgrear. One often has to be persistent.

You sound like you know the importance of getting a second opinion and specialized care. Are you also living with neuroendocrine tumor(s) (NETs)?

Yes, I am. I have Stage Four carcinoid cancer. The original site was my ileum. It has metastasized to my liver.

So kind of you to ask. Are the support groups available in person at Mayo Jax? I was thinking it would be good for me to attend. I could use the support of meeting others who have NET tumors.

Happy holidays to you! 🙂

There is a monthly Neuroendocrine Cancer Support Group Meeting hosted by a Mayo Clinic JAX social worker. However the group meets online on Zoom. The meetings are held on the first Thursday every month from 5:30 to 7:00 p.m. Eastern time. You would be very welcome to join in. See more info here:

- Neuroendocrine Cancer Support Group Meeting https://connect.mayoclinic.org/event/neuroendocrine-cancer-support-group-meeting-8/

Thank you kindly.