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.
Have had PRRT as well as distal pancreatectomy, but my tumors were quite visible. I can say that the PRRT had very few side effects, and I was functioning almost as well as before the disease. Had 4 sessions, would have preferred 6 or even 8, as the lanreotide didn't stop my progression either.
Surgery was open incision, went pretty well. They did RFA liver ablation as well as remove the spleen and gallbladder. No food for a couple days, was walking a little within a day or two, don't remember too much as I slept a lot. Was discharged about a week later. Recovery was good though there is still some stiffness in the abdomen.
@splendrous: I was in this situation last June (2024) - small intestine/stomach primary with liver mets… most tumor progression up 40%. Specialist Surgeon & Oncoligist leaned towards major abdominal surgery, but I chose PRRT Lutathera 4 infusion sessions. You have undoubtedly done research on Everolimus, Hystotripsy, PRRT vs. major abdominal surgery (with recovery time) like I did! Since I was 79ys, long-time diabetic, osteoporosis, Hypothyroidism, plus this NET metastases, I chose the Lutathera PRRT 4 session route. The side effects were next to nothing and after the conclusion of treatment all remaining tumors were stable, most had dramatically shrunk in size and some in the liver were gone! My primary tumor is smaller than when I was diagnosed in 10/21! I chose to be vigilant with Evoist MRI scans every 3 months… my safety net.
8 months after treatment I have regained most of my energy & feel mostly like the ‘ol me! My docs are very happy with “their” decision of PRRT treatment. 🙂
You have a difficult decision to make. There are risks and predicted side-effects to be considered. Listen to your body, get opinions from your peers on their treatment choices and the tumor responses. You will make the best decision you can!
Also, then I suggest you concentrate on this treatment resulting in control of your disease with every thought and action. Prepare yourself physically strong, spiritually at peace and mentally positive! This really helped me! Hope this helps, Bette.
Best of health to you Splendurious!
Everyones situation is different, I started with Lanreotide, for the first 3 months, then switched to Octreotide Although the injections did stop the development of new tumors there were a few that continued to grow, After 4 treatments of Lutathera, the MRI shows that the tumors were shrinking.. I was blessed that I didn't have any bad side effects from the treatments other than fatigue. My best to you on your decision..
What was the timing of the two treatments PRRT and surgery? Which came first and do you know why they chose one to go first? Did you have growth in the tumors and then they decided on the next treatment? Thanks for sharing your experience.
Thanks Vinnie 694. Was there any discussion of surgery as a potential treatment? The PRRT that has been discussed with me is 4 treatments each two months apart, so over 8 months. Was that the way your was done as well? Wonderful news that your tumors are shrinking! So Thanks again for sharing.
Thanks so very much for sharing your experience. Did the doctors give you their reasons for recommending surgery vs PRRT? I am glad you seemed to do well on the PRRT treatment and got outstanding results. i know what they have discussed with me is 8 months of treatment. One every two months. So if I understand I should plan on 8 months of threatment and another 8 months afterwards to feel like I have regained energy. I know everyone is different, but i am 78 yrs old also. Trying to understand what the treatment might mean for travel plans. Thanks again for sharing.
Given a choice, I would choose the least invasive/time consuming procedure that was effective! I’d do Hystotripsy first, PRRT second & last choice would be major surgery.
@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
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,,,
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.