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Welcome to the NETs Group! Come say hi.
Neuroendocrine Tumors (NETs) | Last Active: 2 days ago | Replies (410)Comment receiving replies
Hello,
New here, found the group when searching NET on the Mayo Clinic website. My husband has NET found in his small intestine during an emergency hernia surgery. We are under the care of an Oncologist and now a surgical Oncologist. Have had a PET scan and now diagnosed stage 4 because of spread to the liver and 4 or 5 nodes. Waiting for surgery date, need to get an echo, new CT and blood work before surgery. We had homework from the doctor to research NET's and so just adding on here for support. Maybe run things by this site for future treatment. I'm glad people gather to talk and support. We give all our glory to God who is in control of our lives. Praying for a good outcome. Terri
Replies to "Hello, New here, found the group when searching NET on the Mayo Clinic website. My husband..."
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@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?