Interested in your experience with treatments of PRRT vs surgery

Posted by splendrous @splendrous, Aug 5 11:09am

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.

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Profile picture for vinnie694 @vinnie694

I also had 4 treatments at 2 month intervals, I was told that surgery was not an option, and if it was would be last option, basically because I don't have any blockages or any bodily function issues. He started with the least invasive, which was the injections,,,

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Thanks, Vinnie. Best wishes as you continue your treatment.

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Profile picture for dbamos1945 @dbamos1945

@splendtous: I hope you are getting helpful information to form your decision on NET cancer tumor progression.
You asked about proposed surgery plans: the NET surgeon I consulted with referred to current Dodotate Gallium PET scan. His plan was to remove 1/2 stomach, some small intestine (including primary), reconstruct stomach/intestine pathway, top of right lobe of liver (included the portal vein), spleen & gallbladder. I admit I tend to shy away from invasive procedures, but i had great concern for the prolonged time to heal resulting in return to a quality of life as before surgery. At my age I preferred taking the risks of radioactivity’s chance of leukemia. During my PRRT 4 Luathera treatments (from June-December 2024) I had no proof that my disease was responding well until my Evoist MRI in January 2025. I looked at this difficult decision as a “crap shoot”… no guarantees!
In this disease we are dealing with, we aren’t fortunate to look for “cures”, but rather trying to add more good quality of life to our existence.
I hope you will feel confident in your decision for treatment. I hope my words help in some small way. Best… dbamos1945

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Thank you so much for sharing the decision you made for PRRT. It is very helpful for me.

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Profile picture for zacharycat @zacharycat

I had PRRT from May to November, 2024.
At various times I had different doctors, who said different things about surgery. First that is wasn't feasible, then that it was an option but might require two surgeries. I had good response to PRRT with size reduction that made one surgery an option, as confirmed by scan in November. From some reading I've done this seems to be a common sequence.
In March the scan was even better, so much so that I at first dismissed some symptoms I had in late March/early April, 2025. In April I ended up back in the hospital, and the surgeon thought the best option was to go ahead while I was there and he had openings.

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Thanks very much for sharing the background on your treatments. Very helpful. Best wishes to you on your treatments.

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Profile picture for zacharycat @zacharycat

I had PRRT from May to November, 2024.
At various times I had different doctors, who said different things about surgery. First that is wasn't feasible, then that it was an option but might require two surgeries. I had good response to PRRT with size reduction that made one surgery an option, as confirmed by scan in November. From some reading I've done this seems to be a common sequence.
In March the scan was even better, so much so that I at first dismissed some symptoms I had in late March/early April, 2025. In April I ended up back in the hospital, and the surgeon thought the best option was to go ahead while I was there and he had openings.

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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.

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Profile picture for kim1965 @kim1965

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.

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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.

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Profile picture for kim1965 @kim1965

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.

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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?

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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.

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