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Lost with no confirmation of NETs origin: Innumerable liver lesions
Neuroendocrine Tumors (NETs) | Last Active: Mar 31, 2023 | Replies (77)Comment receiving replies
Hello @mbg20
It looks like you have received a lot of good feedback from members of this discussion group. I see that you are looking for an experienced oncologist. This is a wise idea.
NETs specialists are well trained to both diagnose and treat this rather rare form of cancer.
Have you considered having a consultation with Mayo Clinic? There are three campuses in Jacksonville, FL, Rochester, MN and Phoenix, AZ. Each campus has NET specialists. If you are interested in an appointment, here is the link that will get you started, http://mayocl.in/1mtmR63.
If you are not able to be seen at Mayo, here is a listing of NET specialists from the Carcinoid Cancer Foundation website,
--Find a Doctor
https://www.carcinoid.org/for-patients/treatment/find-a-doctor/
Have you had the PET/CT DOTATATE scan yet? Is your appointment with the surgeon scheduled already?
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Right now I’m being seen at Johns Hopkins. Because of a developing bowel obstruction the procedures have happened pretty rapidly. I’ve had a PET/Ct DOTENTATE Scan, a scan with iodine contrast at JH which provided a lot of information, and a second CT contrast scan last weekend because of fear that my small intestines were blocked. In sum I have a 5 cm mass in the mesentary, entangled small bowels, a suspected mass in the small intestine, uptake in some abdominal lymph glands, a right thyroid which show a lot of uptake and I’m awaiting a fine needle biopsy on it. So far my liver and pancreas seem free. Also some suspicious areas in T9 vertebrae and right collar bone. I started lanreotide under a John Hopkins doctor who works on NETs. I am also seeing a surgeon who works on NETs although he does other types of small bowel oncology. Because of concerns about obstruction i’m et for surgery tomorrow.