Anyone experienced intense itch with pNETs mets to the liver?

@tomrennie thanks, I'll check it out.

@timaudette Hi and welcome to Mayo Connect. Thanks for the great information. Have you been battling neuroendocrene cancer for a long time? Where is yours?

I was diagnosed in September of 2025, but the Mayo Clinic has said that I've had it since at least 2017. It was misdiagnosed for many years. I had surgery February 2026 at the Mayo, I can't say enough about the Mayo team, they are the ones that properly diagnosed me, they listened to me and the symptoms I talked about and gave me expert answers in a way I can understand. My primary tumor was in my Duodenum bulb, the largest tumor they removed was in a lymph node and has metastasized to my liver. They were able to remove 5 lesions in my liver, but there are at least 10 more spots. After surgery, they diagnosed it as incurable, but very slow growing. I've been taking Lanreotide injections since October 2025 and will start those again this month. It sounds like I will be on Lanreotide infusions long term with 6 months to annual scans to monitor.

@timaudette I was diagnosed in Jan.2025 with a tumor on the distal end of my pancreas and metastasis to my liver. Treatable, slow growing grade 2, well differentiated. Started immediate lanreotide injections with follow up CT's every 3-6months. No side effects other than rash and severe itching which may be from bile salts not controlled by liver? Specialist and oncologist don't really know. Looking at radioembolization for control? Unique case. Fortunately my treatment is all covered in Canada,

@timaudette You have had quite the journey, but it seems that the worst is behind you. Good for you. Your treatment moving forward is the lanreotide shots? How often will you get follow up tests/scans?

Lanreotide every 28 days, starting with 4 month scans and moving to 6 months scans, if the spots in the liver aren’t growing.

@billbo I’m glad to hear your treatments are covered. Fortunately for me, my treatments have all been covered, with the exception of some copays. It sounds like we have very similar situations. In it for the long haul. I heard a quote the other day, “Now that I have years added to my life, I need to make sure that I add life into every year!” It’s not easy to overcome the anxiety and some of the fear that comes with all of this. I hope I can add a lot of life to every year I have!

@tomrennie

Hear! Hear!

Has anyone experienced intense bouts of overall body itch as result of liver malfunctioning due to pNets metastasis to liver?

Yes, some people with liver metastases from pancreatic NETs do experience intense itching, especially if the liver is not functioning normally or if there is impaired bile flow.

Itching can occur when bile acids build up in the bloodstream, even before jaundice becomes obvious. It can range from mild to severe and can affect the entire body.

If this is a new symptom, I would let your oncology team know as soon as possible. They may want to check liver function tests, bilirubin, alkaline phosphatase, and imaging to see whether the itching is related to the liver or another cause. Sometimes medications can also contribute.

The good news is that there are treatments that can help if the itching is due to liver dysfunction or bile acid buildup, so it's worth bringing it to your doctor's attention rather than trying to manage it on your own.