Husband has miliary seeding metastasis

@tiambeth70: You have found a good source of information, both from Mentors and NET peers going down a similar path. Good news is that most NET cells grow slowly and we have successful treatments available now and more are in clinical trials.
You mentioned “seeding” and I assume you are referring that your husband’s primary in the small bowel has metastasized to the liver. His diagnosis is very similar to mine that has been treated for over 4 years to control tumor growth. Many of us were started on a drug called Lanreotide. It is a hip injection that is given every 28 days by the Oncologist office. This shot drastically helped me by controlling the diarrhea, etc. (any soreness is worth it to start to feel human again). I’m sure scans, blood and urine tests have been completed, but there are more scans to be done to keep vigilant on the tumor's progression.
I believe a consultation with a NET specialist to discuss scans, surgery, and most importantly, future treatment for tumor management. Since we have a rare disease it does not act like other cancers, nor is it treated in Oncologist fashion. We need specialist care and decisions for our best outcome (ask the Mentor for NET Specialists in USA).
This is a scary time for both of you, but search Internet for NET Support, for they will offer you information you need to navigate this new lingo. We have all been in your shoes, the more you become familiar with this disease the better your survival decisions will be.
We are here. You are not alone! 🙂

Hi @tlambeth70. Welcome to Mayo Connect. As @dbamos1945 suggested, here is the link to find a NETs specialist:
https://www.carcinoid.org/for-patients/treatment/find-a-doctor/
I have a pancreatic neuroendocrine tumor that has spread primarily to my liver. I was diagnosed about 3.5 years ago. I am doing great. Being treated by a NET specialist is very important. Do you have any other questions at this point?

Yeah I would recommend you find a net specialist (mayo, ucsf, u of iowa). Depending upon the age of your husband, he most likely in the 1st inning of a very very long baseball game. Once you get over the fact that nets are incurable, you can start to live. Your husband might be around for another 10-30 years. At his stage, it'll be treated as a chronic disease so it is critical to keep working so you can afford the out of pocket maximum for insurance. Plus, if you stop working, you have to buy insurance from the exchange which usually doesn't cover the experts. Good luck.

Hello @tlambeth70,

I would like to join @dbamos1945, @tomrennie, and @tfoucaul in welcoming you to Mayo Clinic Connect. I see that they have offered you some great ideas as you face this NETs journey with your husband. As one of the posts said, any type of cancer is a journey. It is best to consider this a chronic condition that you will monitor for life.

The good news is that many new treatments have been found for NETs. That said, having at least one consultation with a NET specialist is especially important. Not all oncologists are NET specialists, so it is important to seek the opinion of a NET specialist early on.

What are your husband's most difficult symptoms post-surgery?

For many NET patients, clinical trials are a wonderful way to explore new treatments. Please be aware of this seminar, which will explore upcoming clinical trials for NETs:

The Latest in Neuroendocrine Clinical Trials will be held on February 20. This webinar is provided by the Neuroendocrine Cancer Foundation. If you cannot attend the webinar on the 20th, you can register to view it at your convenience. Here is the link with information about the webinar, as well as the link for registering:
https://www.ncf.net/events/feb2026

@tlambeth70, how did the appointment go with oncologist? Did you learn of the treatment plan for your husband? How are YOU doing?

@tlambeth70: You have not been forgotten, we care about how your Husband’s NET cancer is behaving. Reaching out to NET specialists can be a transportation problem and I hope that you have located great medical treatment from a cancer facility or University Medical Center. Hopefully he has recovered from surgery and NET digestive problems have been addressed.
No question or concern are too small to ask us. We want to help you both.

@dbamos1945: We have a PET SCAN this Wednesday. My husband is struggling with digestive issues. He's lost almost 30 lbs since his January 8th surgery. He's weight was 158 he's now 130.
Treatment will begin after the PET SCAN.
PRRT and also hormonal treatment every 28 days.
They are scanning from his head to mid thigh looking for other tumors. Some tumors removed showed slow growing and some were intermediate in growing.
Thank you all for the support.