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Stable metastatic NET – should I be pushing harder for PRRT?
Hi everyone,
I’m hoping to get some perspectives from others who have faced similar decisions around PRRT.
I’m a 40-year-old male with a well-differentiated Grade 2 neuroendocrine tumour, originally diagnosed in 2020. Primary tumour (upper bowel) was surgically resected at diagnosis (initially staged T4N1M0).
In 2023, follow-up imaging identified multiple small liver metastases. These were treated with radiofrequency / microwave ablation, with good response. Since then, imaging has shown small-volume residual liver disease, all lesions currently ≤ ~11 mm, with no extrahepatic spread.
Recent imaging (MRI and PET-CT) shows:
- Disease is radiologically stable overall
- One lesion has shown very slow growth over time
- No new liver lesions
- No disease outside the liver
- Ongoing somatostatin receptor positivity
I’m currently on long-acting somatostatin therapy and otherwise clinically well. Blood markers are generally stable.
My oncologist and interventional radiologist feel that:
- Lesions are currently too small to justify further ablation
- PRRT is not recommended yet given stability and low tumour burden
- Plan is continued surveillance, with reassessment if progression becomes clearer
I understand the reasoning, but I’m also conscious that PRRT is often described as most effective before tumour burden becomes larger, and I want to make sure I’m not missing an opportunity by waiting too long.
So my questions to the group:
- For those who have had PRRT: what triggered the decision to proceed?
- Did anyone pursue PRRT while disease was technically “stable” but slowly progressing?
- Are there downsides to waiting until clearer progression versus treating earlier?
If you were in my situation, would you push harder for PRRT now or stay the course? I have a good relationship with my care team and don’t want to be reckless — just trying to be proactive and well-informed.
Thanks in advance for any insights or experiences you’re willing to share.
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HugInterested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
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@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. 🙂
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5 Reactions@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.
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4 ReactionsHello @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.
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2 Reactions@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!!