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Teresa, Volunteer Mentor (@hopeful33250)

Welcome to the NETs Group! Come say hi.

Neuroendocrine Tumors (NETs) | Last Active: Sep 5 7:47am | Replies (383)

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Hi everyone
I hope everyone doing great! About a few days ago we were informed my wife has been diagnosed with Neuroendocrine Tumor. We are based in Atlanta , GA. There are not many options here as you know is a rare type. I'm worried and still haven't seen her general oncologist yet to hear what they say. They say she needs more tests. It has spread in multiple locations. They gave it number 8 and say it's not aggressive like number 20. They haven't been able to find the root. I'm thinking to move to places such as mayo or Anderson. Please advise.

Greatly appreciate

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Replies to "Hi everyone I hope everyone doing great! About a few days ago we were informed my..."

Hello @aliatl and welcome to Mayo Connect. As you are aware, NETs is a rare type of cancer and it is certainly wise to be looking for a NET specialist. General oncologists often do not have the same level of experience in working with NET patients, so seeking out a NET specialist is so very important. Mayo would be a good place to seek a second opinion. There is a Mayo facility in Jacksonville, FL which might be convenient for you. If you would like appointment information, please look on this link, http://mayocl.in/1mtmR63.

As you are comfortable doing so, could you share a little about your wife's symptoms which led to her diagnosis?

Hi @aliatl, I'd like to add my welcome along with @hopeful33250. I moved your message to this intro discussion:
– Welcome to the NETs Group! Come say hi. https://connect.mayoclinic.org/discussion/welcome-to-our-new-group/

I did this so you can read previous posts and connect easily with fellow members, especially @ceavce @tomewilson @kim1965 @markmark007 and others who are caring for a spouse with NETs.

I know you are worried. Who wouldn't be? You've just been thrown into a foreign zone and things are turned upside down for you and your family. There are quite a few members here who go to Mayo Clinic Jacksonville. Dr. Starr's team specialize in NETs. Should you decide to get a second opinion at Mayo Clinic, I know you'll be in good hands.

NETs often involves multiple test to confirm details of the diagnosis and to dtermine the best treatment specific to your wife's tumor and health status. Do you know what tests she is scheduled for? Do you have any questions about what to expect?