Does anyone have neuroendocrine small cell carcinoma of the liver?

Hello @ggp and welcome to Mayo Clinic Connect. I can certainly understand your confusion, and I appreciate you wanting to help your sister. A cancer diagnosis is generally difficult to face, but connecting with others does provide some comfort, just knowing that you are not alone. I found Mayo Connect after my second recurrence of NETs. I have had a total of three surgeries,

On Connect, several members have NETs in the liver (or have loved ones with this type of NETs). I will invite them to post with you, including @splendrous, @lindabees, @sophiarose, and @vinnie694

This sounds like a new diagnosis. Have any treatments been suggested by her medical team?

I'm so sorry your sister has to go through this. My husband was diagnosed with stage 4 pancreatic neuroendocrine tumors 19 years ago. However, a carcinoma diagnosis is, unfortunately,
a more aggressive form of neuroendocrine cancer. Also, it is extremely rare for it to originate in the liver. Most neuroendocrine tumors of the liver are mets from another, primary site. Is she confident in this diagnosis of the liver being the primary site?
Is your sister seeing a neuroendocrine cancer specialist? This will be crucial in order for her to get the appropriate treatment as most general oncologists don't have needed knowledge of this rare disease to ensure that appropriate treatments and appropriate sequencing of those treatments is applied.
I would encourage her and you to learn everything you can about this disease and be your own strongest advocate. There are sites that are extremely helpful for this such as
http://www.netrf.org
http://www.ncf.net
This is page is a good place to start:
https://www.ncf.net/newlydiagnosed
There is a directory of net specialists by state on the netrf site
Please ask whatever questions you have here. There are many who may be able to help guide you and your sister.

Your sister is very lucky to have you
The journey is very long and decisions are sometimes difficult
7 years ago I was diagnosed with NETs of the liver after my liver resection I was told they got it all
I was stage 2
I have to agree with Lindabees that NETs don’t start in the liver it metastases there
I was good for about 2 years no new growth and then tumors started to return in my liver I was told the tumors were metastatic
I am now stage 4
I am a lot more educated now and realized you need to get more than 1 option
Keep a journal and copies of everything it is so hard as time goes by to remember and getting copies later is always a nightmare and definitely get ALL scans on a CD
The mayo site is having a round table on Thursday 4/2 register and join in everyone is knowledgeable and a really group of fantastic people
Good luck to your sister and you I hope you will join

I also have been diagnosed with liver NETS here in Panama. My oncologist started me on monthly octreotide injections since August 2025. Lanreotide was not available in Panama so there was no choice. So, after 7 shots and consistent results I had a second opinion at the Mayo Clinic in Jacksonville. A wonderful facility I must say. My
Oncologist there, Dr Starr and his staff were fabulous I did have a Petscan while there and Dr Starr determined that the protocol I was following was exactly what he would have prescribed so we continue to treat my NETS as a chronic disease with a watch and see protocol. I feel great, no chemo,
PRRT or side effects. I would be happy to share any information or experiences I have had along the way. Good luck. Stay positive and enjoy every day
Regards
Mark

I was diagnosed with NET's in my Liver back in December 2022, started Lanreodide for a couple of months, but it did not control my Carcinoid syndrome hot flashes. Switched to Ocreotide I believe it was April of 2023 and since then ("NO hot flashes!) Surgery was not an option and for about 2 years everything was calm. I started having some growth in some of the Tumors, and decided to try Lutathera (PRRT) treatments. After 4 treatments the smaller tumors were barely visible and the larger ones were shrinking. I go May 6th to see if the trend is continuing. I am fortunate and blessed to live 25 miles from Mayo Jacksonville, The head of my team is Dr. Starr, of whom I trust totally with my care plan.. Mine originated in my small intestines, and metastasized to the liver. You are definitely in the right forum to learn , or at lest where to get information to learn My best wishes for your sister, she is fortunate to have you to help..