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NET not found on PET/CT

Neuroendocrine Tumors (NETs) | Last Active: May 4 9:38pm | Replies (14)

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@kim1965

@gig666
We can't say what treatment to do, but what we all can say on this site, is you need have a NET Specialist involved, or part of a multi-disciplinary team which directs your treatment. Don't wait, find the assistance you need, either at a Mayo site, or other hospitals having the same type of team with a NET Specialist. My wife is two years in her fight from being diagnosed with NET, with mass on pancreas, and too many tumors on liver to count. Technically, a stage 4 diagnosis. Now she has done the chemo for 9 months, has surgery to remove the primary, and debulked as many of the tumors as possible, finished 4 treatments of PRRT, and have knocked down the NET to much smaller levels and we have options to continue the fight. My message to you, is you can do this, get a good team on your side, start the fight, and beat NET's. You can do this!

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Replies to "@gig666 We can't say what treatment to do, but what we all can say on this..."

Thank you,,,, l called Dana Farber, Boston for second opinion. Will see May 10th.
I do not understand how do many NETS are not found anywhere, with the high tech 68D pet/scan!
My lungs lite up, but my liver nothing showed only a "mean liver," SUV. 9 .96. My specialists blew it off, it might not be your liver, the uptake is pointing too!
Frustrating!