Interested in your experience with treatments of PRRT vs surgery
I am grade 2 metastatic to the liver of unknown origin. diagnosed in Oct 2024. Dr suspects it originated in the GI Track. Octreotide has not stopped the growth of the tumors so looking to start at different treatment. Surgery and PRRT are two options. Surgeon says he would be able to see tumors that are not visible on the MRI and remove them as well as look in the GI Track to see if he can feel the small tumor that is there as the origin but not picked up by MRI or dotatate scan. Different views of a local treatment (surgery) or systemic treatment (PRRT). I know surgery is a long recovery and potential side effects of PRRT. I also have appts for Histotripsy consult. Interested in others experience. Which potentially would be the first choice of treatment. Thanks for sharing.
Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
Thanks, Vinnie. Best wishes as you continue your treatment.
Thank you so much for sharing the decision you made for PRRT. It is very helpful for me.
Thanks very much for sharing the background on your treatments. Very helpful. Best wishes to you on your treatments.
In my wife's case, we did the surgery first, removed primary from lower pancreas, removed spleen, gall bladder,ablated some of tumors on liver. This reduced our our tumor count by about 70%. Our team then recommended 3 cycles of PRRT, which further reduced what was left to only the liver. At that point our team recommended a liver transplant, as the PET scan only showed at that point tumors in the liver. After multiple 2nd opinions, she had the tranplant in January 2025.
Interesting. Did they use TAE also to reduce liver tumors? That was one of the first things they did to me. Not sure how much it helped, but gave me a high fever and zero appetite for several days.
I recall mentioning transplant offhand to the doctor doing the embolization. He wasn't too positive due to high recurrence rates. One problem he mentioned was that drugs needed to prevent organ rejection could interfere with cancer treatment. I doubt I would qualify anyway due to age and high grade NET.
Hello @kim1965,
I hope that your wife is recovering well from her transplant. Was the transplant done at Mayo? What type of follow up will she be having?
The transplant was not done at Mayo, at Froedtert Hospital in Milwaukee, WI. The recovery has been very challenging at least the first six months. After 3 additional surgeries, and 4 procedures, some liquid was collecting around her lungs. That has cleared, but there has been some breathing issues, greatly limiting her ability to walk much yet. Our team believes overall, with the new liver working good, she should continue to have a good recovery, its just going to take time, at least a year for her to get back to near normal.