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What do I need to know about NETS?
Neuroendocrine Tumors (NETs) | Last Active: Sep 11, 2023 | Replies (43)Comment receiving replies
Hello, I had a 6.8cm pheochromocytoma and had a right adrenalectomy March 17th. My scans do not show metastasis to other organs but pathology shows invasive cells. Where do I go from here? My primary doctor is sending me to talk to our local cancer doc. I want to be proactive and if there are meds to take to try to suppress further tumors, I want to find these. Do I need a neuro endocrine tumor specialist? I live in a rural areA- my primary has only seen pheo once on med school. I just want to do everything I can to keep well for as long as I can.
Replies to "Hello, I had a 6.8cm pheochromocytoma and had a right adrenalectomy March 17th. My scans do..."
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Hello @sidmom347 and welcome to the NETs discussion on Mayo Clinic Connect. I so applaud you saying, " I want to be proactive..." This is especially important when dealing with a rare form of cancer. You say that you live in a rural area, and you are being referred to a local oncologist. I would strongly encourage you to have a consult with a NET specialist. These oncologists are especially experienced in the treatment of NETs and it will be a good investment in your future health and wellbeing. After a consultation, it may be possible to be treated nearby with advice from the specialist.
There are NET specialists at all of the three Mayo locations. If you do not live near a Mayo facility you could consider a virtual consultation Here is a link that will help you get an appointment at Mayo Clinic, http://mayocl.in/1mtmR63.
If an appointment at Mayo is not readily available, please consider a NET specialist from the following list of doctors in the U.S. and worldwide:
--Find a Doctor
https://www.carcinoid.org/for-patients/treatment/find-a-doctor/
How are you feeling? Was the discovery of the NET a result of symptoms you were having?