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Gynecologic neuroendocrine metastasized to lungs: Need a specialist
Neuroendocrine Tumors (NETs) | Last Active: Feb 21, 2023 | Replies (15)Comment receiving replies
Hello @nwilson03 and welcome to Mayo Connect. I can understand the frustration you must be feeling. Your mom is a fighter, but you seem to be having a hard time finding the right back-up team in order to help her fight.
Are you aware that there are NET specialists at Mayo Clinic in Jacksonville, Florida? I would recommend calling them to see if they will give your mom an appointment. Here is a link to give you information to schedule an appointment, http://mayocl.in/1mtmR63.
If for any reason, she is not able to be seen at Mayo Clinic, I recommend that you look at the Carcinoid Cancer Foundation (CCF) website and look for information on a NET specialist there. Here is the link to the CCF website, https://www.carcinoid.org/for-patients/treatment/find-a-doctor/.
If your mom cannot comfortably travel to personally see any of these doctors, you might want to see if you can get a virtual appointment for your mom.
You mentioned that your mom had chemotherapy. What type of chemo was it?
Replies to "Hello @nwilson03 and welcome to Mayo Connect. I can understand the frustration you must be feeling...."
I have to look again. I believe one was toposar? And I have to check the other and I’ll get back. The makers show next treatment t should be immunotherapy.
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Hello, I have NET related pancreatic cancer. My mother died of pancreatic cancer which was diagnosed literally the day she died. I was diagnosed with NETabout a year ago. I was treated at The Moffitt Cancer Center in Tampa with great results. I underwent the Whipple procedure in Oct. 2022. My surgeon is an extremely competent, Dr. Mokenge Malafa. They went in expecting a few tumors and found 16. The surgery was very successful in that I did not require chemo or radiation. The whole process at Moffitt was very organized and professional.