After initial tests/consults at Mayo: When does NETs treatment start?

Hello @cewald62 and welcome to Mayo Connect. I see that you are planning on having NETs treatment at Mayo in November. On Connect there are several members who have received treatment (or their family members), and I'll tag them so that they can reach out to you and share their experiences with you. @kim1965 @tomrennie @tomewilson

As this is your first post, please share as you are comfortable doing so, a bit about your diagnosis and any treatments that you have had. Is NETs a new diagnosis for you?

I had a very small carcinoid tumor removed in 2015 on my first colonoscopy that was removed without major surgery. On August 8 of this year, I felt like I was having a gallbladder attack or an appendicitis. Instead, two neuroendocrine tumors were found on the CT scan. Recto Sigmoid Junction on the outside of the colon and Mets to the liver. Further confirmed by a special PET scan and liver biopsies. Both sites at this time are believed to be removal by surgery. If anyone has had either of these NETs, I'd like to know how treatment went for them and how soon treatment started after Mayo's initial consults and repeat tests are concluded.

We have a number of members in the NET support group who have discussed their experiences with Mets to the liver. Here is a link to many of those posts,
https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/?search=Liver#discussion-listview
I would encourage you to read these posts and then feel free to ask questions or make comments by clicking on the "Reply" button and posting your thoughts. You will see that there are several treatments for Mets to the liver, including liver embolization.

@cewald62, my wife has NET in the liver still after finding the primary tumor on the pancreas in April 22. Surgery wasn't an option at first, so she did 9 months of chemo (CAP/TEM), which greatly reduced the amount and size in all areas. This allowed for surgery and primary tumor, spleen, and gall bladder to be removed. During all this she was on monthly Lanreotide injections from initial diagnosis. Then our team had her do 3 cycles of PRRT treatment which further reduce the amount and size. Right now we are monitoring the NET, with MRI's every 90 days. In response to your question on Mayo, we only visited Rochester, to get a 2nd opinion on an option our team is suggesting of doing a liver transplant, so I can't respond how soon treatment started with them. With our team, everything went pretty quick once the biopsy's were completed and read. Were are in a good place now, just monitoring and preparing for our next steps if needed. Feel free to ask any other questions you may have and we would be more than happy to share ideas in all our fights against NET. We are all on the same team. We got this! 🙂

I was diagnosed with NETs in the liver December 2022, Had a PET scan to determine origin January 18, 2023. PET scan determined start was in my intestines,it also picked up something in my thyroid. Thyroid scan on Jan. 25, Biopsy on Jan31, Then Consult on Feb 6 2023 at Mayo Jacksonville, Dr tried to get me on the clinical trial, but I did not qualify due to a previous diagnosis of Prostate cancer.. I was told surgery was not an option, recommended Monthly injections they started February 16. 2023 Started with Lanreotide, for 3 months, they did not help with my Carcinoid Syndrome symptoms (hot flashes). Switched to ocreotide and have been on a 28 day cycle of 2 injections since then.. With hope and prayers that everything will work out for you….

My husband has been a patient at Mayo Phoenix for 3 years. He has been dealing with stage 4 pancreatic nets for 16 years. He switched to Mayo when we moved from California but he had been off of all treatments and in a wait and watch mode for 4 years after several surgeries and treatments prior to that. He was showing signs of progression for a year prior. After meeting with Mayo for the first time, things moved very quickly and he started treatment with oral chemo pretty quickly. The team there is phenomenal and extremely efficient at moving things along.