Gynecological neuroendocrine cancer

Posted by margaret2 @margaret2, Fri, Feb 8 4:22am

I am curious if anyone else has had a gynecological neuroendocrine tumor. I had 2 separate neuroendocrine cancers. One was stage 3 ovarian with involvement in the omentum.
The other was a stage 2 breast cancer.
The information on this is almost impossible to find
Maybe someone else has had experience.

Hello @margaret2

Welcome to the NETs discussion on Connect. While I have had three surgeries for NETs they have all been in the digestive tract. I'm sure that it must be difficult finding information about gynecological NETs.

Are you seeing a NETs specialist?

Hello @margaret2

After doing a little research I did find some information from the National Institute of Health, https://www.ncbi.nlm.nih.gov/pubmed/21621706. Of course it says it is rare, but I hope it may provide you with some more information.

Here is the website from the Carcinoid Foundation https://www.carcinoid.org/ As you can see, there is a list of doctors who specialize in NETs throughout the world. If your current doctor is not on that list I would encourage you to at least consult with one and then follow up with your local oncologist.

Just wondering: Is your breast cancer also a NET?

Hello @margaret2

As other Connect members have not yet responded to your question about gynecological neuroendocrine tumors, I was thinking about you and wondering if you have come up with any plan for treating these.

Could you post an update as you feel comfortable doing so?

@hopeful33250

Hello @margaret2

Welcome to the NETs discussion on Connect. While I have had three surgeries for NETs they have all been in the digestive tract. I'm sure that it must be difficult finding information about gynecological NETs.

Are you seeing a NETs specialist?

Jump to this post

I had ovarian cancer and also stage 3c with omentum removed.
I’m a year and 1/2 out of chemo. My scans are clear, but, I have nausea still a year after. I still have fatigue also. I guess this is called living with cancer.?

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