NETs: Anyone has Liver debulking for liver metastasis?

Hello @mkmm and welcome to Connect. I understand that you are interested in finding someone else who has had debulking surgery for NETs in the liver. If you care to share more, how long ago were your NETs discovered? What type of symptoms were you having that led to the diagnosis?

While we wait for someone to post, I found some information on the National Institute of Health website titled, "The efficacy of tumor debulking surgery is improved by adjuvant immunotherapy using imiquimod and anti-CD40." Here is the link to the article,
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4320570/
It looks like debulking surgery is most effective if it is followed up with Adjuvant immunotherapy. Has your medical team spoken of follow-up treatment?

I had emergency surgery in Dec of 2020. That is when the tumors were found. However, I had symptoms of years of vomiting. I was dismissed by several GI specialists as having chronic vomiting syndrome. I have since learned that the tumors have metastasized to the liver. I am a now patient at Mayo. Thank you for your input. MKMN

Hi @mkmn, I'd like to add my welcome and am tagging fellow @pjsheridan2022 @immmm @gulzar as they also have experience with NETs and liver metastasis and may have had liver debulking.

I'm glad to hear that you are in good hands at Mayo Clinic. What treatments are you having?

Hello Everyone I also have NETs that has metastasized on the inside of my Liver. I have been on the Lanreotide injection for about 18 months now, and so far I have been doing well with it. I just wanted to know What is liver debunking I’m so sorry I just never heard of that term. I’m a two time heart attack survivor and I have stage 4 liver cancer that started in my small intestine and metastasized on the inside of my liver and I have CKD stage one which there’s nothing much I can do about that because it’s hereditary. I don’t think I’m a candidate for surgery on my liver though. I just wanted to share that with you all.

Hello @cu2

We have some other members who have discussed liver tumors related to NETs. I'm going to invite them to discuss what they know about this procedure with you, @mkmn @pjsheridan2022 @immmm @gulzar.

I found an article from the National Library of Medicine on this topic. Here is the link, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4320570/.

You say that you don't think that you are a candidate for this type of surgery. I'm wondering, have you discussed this with your doctor yet?

No I haven't yet but I'm thinking about my heart disection and heart disease probably why I may limited for some procedures.

That may be so, @cu2. Perhaps you should inquire as to other treatments that might be available to you. The more information you have helps you to make the best decisions.

Thsmxs all I will definitely bring it up for decussion and it's definitely something to consider also.

Hi, I am going thru my second surgery for Bland Liver Embolization tomorrow (they do one lobe at a time). I won't know if they are successful in cutting off the blood supply to the tumors until I do a scan; probably February. I had never heard of it before it was suggested by my Neuroendocrine specialist. It involves glass beads so small that they are not visible to the naked eye, injected thru a catheter into your liver artery. They are guided by xray to make sure they get the correct lobe/spot in the liver. So far so good. No chemo or radiation involved in this type, but there are embolizations that involve chemo and radiation too. The idea of Bland Liver Embolization is that its a mechanical angiogenisis. It cuts off the blood supply to the tumors. I have multiple; both large primary and small.

Hello @trivia

I appreciate you describing Bland Liver Embolization. I had not heard of this procedure before. It sounds like a good tool in the journey with NETs.

How are you feeling after the procedure? I suppose this is done under anesthesia. Since this is done via a catheter is this an outpatient procedure?