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SMB (@sherryboynton)

PRRT Treatment

Neuroendocrine Tumors (NETs) | Last Active: Jan 3 1:16pm | Replies (79)

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Thank you Teresa.
In August of 2019 I went to the ED for abdominal pain, after lab work and testing (x-ray, CT, abdominal US) it was discovered that I had an ulcer in my duodenum, and was admitted for a few days. During my hospitalization I had more testing (EGD, CT with more images), with this it was found that I had a possible mass attached to the ulcer. At my post hospital follow up in GI I was scheduled for a second EGD, this time with ultrasound. During the follow up from that I was told that I should have the Whipple procedure done. Referrals and appointments made for me to to to Rochester. My GI provider then had me do a PET scan with dotatate. With those results in he called me with the unfortunate news of pancreatic neuendocrine cancer stage IV, and canceled the appointments in Rochester. I was then referred to the Cancer Center in Eau Claire. In October I started octreotide injections, which I get every four weeks. My CT and lab work for the end of Dec/ beginning of Jan was good. Then in March I had lab work and another PET scan, those results were not in my favor. The scan showed that the cancer had spread to more parts of my body. My oncologist gave me a couple of options, with the PRRT being one of the options. Karin

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Replies to "Thank you Teresa. In August of 2019 I went to the ED for abdominal pain, after..."

Hello @klpetts,

I am sorry to hear of your struggle with a NETs diagnosis. I can only imagine how disappointed you must be. If you don't mind sharing more, could you share what the other treatment option was?

I am wondering, however, why your appointments in Rochester (I'm assuming that you were going to the Mayo Clinic) were canceled.

All patients have the right to obtain a second opinion. Have you considered getting a second opinion at Mayo to see what other options may be available to you?

Here is a video presentation from Dr. Thor Halfdanarson, who is a world-renown NET doctor at Mayo. You might find his talk interesting,

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