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Welcome to the NETs Group! Come say hi.

Neuroendocrine Tumors (NETs) | Last Active: Nov 29 1:22pm | Replies (429)

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@hopeful33250

@taneall
Hello Terri and welcome to Mayo Connect. I'm glad that you found this support group so early in your husband's journey with NETs. I will gladly join you in praying for a good outcome for your husband. I am also a NETs survivor after having three surgeries for NETs in the upper digestive tract over a period of 13 years.

I am very pleased that your husband's doctor suggested that you do research on NETs. That is a wise thing to do. As you probably know by now, NETs are a rare form of cancer and often treated differently than other cancers. Mayo Clinic's website has good information on NETs and also the Carcinoid Cancer Foundation has excellent information for patients. Here is a link to their website:

--Carcinoid Cancer Foundation
https://www.carcinoid.org/for-patients/
The Mayo Clinic in Jacksonville, FL hosts a virtual support group via Zoom on the first Thursday of each month from 5:30 until 7 p.m. EST. This is a great support group where there will often be guest speakers from the Mayo Clinic staff as well as an opportunity for discussion with other NET patients. I encourage you to register for these meetings so that you can receive the Zoom link.

I see that your husband's NET was discovered incidentally during a surgery for a hernia. Many of us were diagnosed incidentally as well, including myself. Was your husband having any symptoms before the finding of the NETs?

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Replies to "@taneall Hello Terri and welcome to Mayo Connect. I'm glad that you found this support group..."

Thank you Teresa for the information on the carcinoid cancer foundation site and the Mayo Clinic Zoom meetings. I’ll definitely check those out.
My husband was not having any symptoms except a hernia he’s had for 10 years became angry. It’s really a blessing the ER surgeon looked at his small intestine and noticed that it didn’t look right. He did a resection on it, took out 3 inches and that’s where the tumor was. After the pathology came back we knew to go looking for metastasis.
I found some helpful podcasts on the NET research Foundation site. Very helpful information.
Thank you again for replying and for your prayers.
How are you doing after 3 surgeries in 13 years?
Terri