Stable metastatic NET – should I be pushing harder for PRRT?

@donbarks: I too have primary in small bowel (grade 1, stage4) with metastases in liver (no surgery), so I can relate to your situation.
I had 4sessions infusion Lutathera PRRT June-December 2024.
I had Lanreotide 28 day shots since diagnosis with my tumors very slow growth & mostly stable until they weren’t (3yrs). Surveillance MRI followed by Gallium-68 PET scan revealed 40% progression.
I consulted with City of Hope NET Oncologist and after much discussion chose their PRRT treatment. They are the best!
I had significant reduction in tumor size that has continued as of January 2026 MRI, and many of the small tumors were no longer visable. This is giving me more time and quality of life for now. Our NETs when metastasized, are microscopic and can appear anywhere and grow.
The research of Beta PRRT treatment mentions many health risk factors that you must consider carefully - the most critical in my view is risk of platelet changes leading to life-threatening leukemia. Our bodies react differently to radionuclides which accumulate to high levels.
So… if I were you I would treasure these days of NET tumor control, live a great life and stay vigilant with repeat scanning. If progression shows itself then look and discuss all of your options for treatment including PRRT. New treatments are on our horizon too! Stay informed.
Be happy. Be Healthy. 🙂

@dbamos1945 Amazing, thank you for your reply. I really appreciate the insight and advise! It’s reassuring to hear how effective PRRT was for you when progression was clear, and also helpful to be reminded of the long-term risks that need to be considered carefully.

Wishing you continued good scans and good health. Thanks again for sharing such a thoughtful perspective.

Hello @donbarks and welcome to the NETs support group on Mayo Connect. I'm glad to see that @dbamos1945 has already shared her experience with NETs and also with PRRT. I would also like to invite @vinnie694 to post with you, as he has also had a good experience with PRRT.

If you would like to read more about members who have had PRRT, here is a link to many of the discussions related to PRRT:
https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/
How are you feeling? Have these lesions and procedures created problems for you regarding eating or other digestive issues?

Stay the course. PRRT is not risk free. Lots of other treatments to use before that. If you aren't already seeing a net oncologist expert, I would recommend consulting with one.

@tfoucaul Sounds like you might have some experience with PRRT? If so, can you please share? Thanks.

@dbamos1945
@grange asked the following in a different post:
"My wife finished the 4 dose Lutathera treatment for NET’s about 45 days ago. She has persistent nausea and fatigue. She’s taking all the Rx anti nausea medication but not much help. Has anyone had the same experience and did you have success treating."
I thought that I would include him on this discussion. Thank you.

@grange: Regarding your wife’s Lingering side-effects from Lutathera PRRT… I can tell you my response in tumor shrinkage is still seen in my 3mo follow-up MRIs! It has been significant! I had mucho fatigue throughout the treatment and it very slowly disappeared as I forced myself to do more things every day, still allowing rest times & a nap when needed. I never had nausea, before/during or after treatment. Are you eating small meals and avoiding rich foods? I drink about 64 oz filtered water/day.
I am hoping she feels better soon and gets positive response for her NET tumors!!

November of 2024 was my last PRRT treatment and my results are still amazing
My tumors are still shrinking and still no new growth
I never had any nausea before during or after treatment but I do still have very major fatigue
Not sure if it is from the cancer the PRRT or the dose of octreotide I get every 28 days yo help keep everything stable
I am one of the lucky ones
My platelets dumped after my first PRRT treatment and finally came back up before I was due for my second treatment and after that they remained stable
I don’t like giving advice but!
There are plenty of people out there that are stable for many many years just continue getting your scans and don’t try to fix something that isn’t broken

The fact that things are stable is excellent! Frankly since there is no evidence of disease outside of the liver, personally I would avoid anything systemic, other than the laneeotide/octreotide injections. There are other liver directed therapies that I would do first, such as embolization; either chemoembolization, bland embolization or radioembolization. My husband had a 50% tumor burden in his liver and radioembolization killed almost all of it and what remained stayed stable for many years.

Endocrine tumors are difficult to diagnosed and in our opinion, difficult to treat. My husband was diagnosed late after numerous years of trying to figure out what was the matter. It was in his ilium but metastasized to his liver stage 4. They tried a different approach and suggested PRRT treatments first due to not being able to resect tumors in liver because too many. We felt it was a good gamble since < 1% chance of having further issues due to PRRT.
(the only area we didn’t investigate before the PRRT was checking on individuals who have endocrine tumors but chose not to take the PRRT, and what has been their outcomes.)
Good news with his PRRT, my husband had no problems with the treatments. (a little tired, but we tried to make certain to exercise and stay away from amines)
That being said, it was 1 ½ years later he became extremely tired. It was suggested to have a bone marrow biopsy and unfortunately discovered MDS, as well as stage 3 CKD. (in further research, it appears there is a greater chance than 1% of getting MDS)
He still receives his Lanreotide shots every 28 days and has for almost 3 years. Because of MDS, he is also receiving EPO shots when hgb is below 10. It appears most of his issues now have been due to the MDS.
The good news, the PRRT treatments appear to keep the tumors stable and each CT scan every 3 months have been good news since the PRRT treatments finished in Nov 2023.
Stay positive and wish you well in your decision!