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@movetowellness, @tomrenna, @denisepierce, et al:
I can relate to your frustration in obtaining advice of effective treatments for NET Cancer. We need to be positive and persistent to get expert guidance for our disease. Proceed until you get consultation (or 2nd opinion) with a NET Medical Oncologist specializing in your type and location of cancer. University Medical Centers, Cancer Centers, Mayo, City of Hope are among avenues available to locate the specialist most applicable to your situation. Our local Oncologists just don’t have the experience with our rare NET cancer - and we need expertise!
Whether surgery is recommended in stage 4 is variable; important to get opinion of NET surgeon in conjunction with a tumor board -then YOU decide if a less invasive treatment is best for you.
PRRT can offer you great shrinkage of tumors and elimination of others IF you are a good candidate - your tumors need to be Receptive (you need to have a Gallium68 PET scan to determine). This was the choice I made for my 80yr old body when tumors were progressing and surgery or treatment was my dilemma a year ago. I had great results with PRRT Lutathera and glad I did not choose the invasive surgery procedure.
I hope this info helps. dbamos1945
Replies to "@movetowellness, @tomrenna, @denisepierce, et al: I can relate to your frustration in obtaining advice of effective..."
Thank you for mentioning your age. We are in the same decade - I'm 85, as is my husband. My tumor appeared on my right calf, very small and I'm going through radiation post-surgery which was June 16. We're in FL, so Moffitt and Jupiter Medical Ctr were suggested. Looking at the treatments others have gone through, a huge concern for us is the cost of all this. We fall in the gray area of not being able to pay huge med. bills, but not qualified for low-income assistance. Anybody else in this position? Hugs to all who have endured so much!
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@dbamos1945
You are so right when you say, "Our local Oncologists just don’t have the experience with our rare NET cancer - and we need expertise!" We all need to look for NET specialists, rather than an oncology practice. There are listings of NET specialists available. Often, even a one-time consultation is helpful to be assured you are on the right track with a treatment plan.