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Lost with no confirmation of NETs origin: Innumerable liver lesions
Neuroendocrine Tumors (NETs) | Last Active: Mar 31, 2023 | Replies (77)Comment receiving replies
Hi I was diagnosed in June of2021 with lung to liver net Ki67 1-5% with two grade 2 carcinoid in lung with large and 25 small lesions in my liver. Mine are non functioning so was told by a gruff specialist all the things that were off the table. I had to request if there was anything was told Affinitor and also chemo drug as second choice. This first doctor was very negative and unhelpful. Then went to Mayo treated more respectively which makes a huge difference. Also I had done about 1000 hours of research on nets and by now about 2000 hours. And attend the support group, exercise, counseling accupuncture and this group. I had continued to be asymptomatic as mine is non functioning. The afinitor worked for about a year with few to no side effects. Had to switch to Captem cocktail chemo pills 10/13/23 which caused fatigue some nausea and constipation it also seem to make things worse in the liver with new growth. My lungs are stable though and it has not spread beyond lung and liver so I feel the Afinitor worked for me. I have now requested a intervention radiology consult to occur this week My goal is hopefully to have bland embolization, or freezing or heating the liver tumors to decrease tumor load. My liver is working fine but if the load needs to be decreased and would like to get back on afinitor as I feel it did 80% of its job with stable lung and no other spread to rest of body except for increase in liver mets. I believe a nuanced approach is needed with this unique proliferation of cells. The most hopeful helpful discussion for me is the ABC.s of neuroendocrine cancer provided by expert doctors across the country. My question is has anyone had bland embolization or cryo ablation for liver mets and any side effects. Thank you and best to everyone,
Replies to "Hi I was diagnosed in June of2021 with lung to liver net Ki67 1-5% with two..."
In reply to Blue Dane:
I was very recenty diagnosed with 1 NET in my liver and 1 NET my lung. I have had biopsies on both, It was determined that the NET on my liver can be removed by Microwave Ablation by Vascular Interventional Radiology and I will have this procedur done on March 10th.
I am so new to this that I don't always understand the lingo and what people are talkin about. Pease be patient with me. I will be having another (3rd) PET Scan on my Lung NET next Friday using some "special dye" for NETs.
Hello @bluedane and welcome to the NETs discussion on Mayo Clinic Connect. I am so glad that you were able to be seen at Mayo Clinic. It sounds like this was a better experience for you than that of the original doctor that you saw.
I have had three surgeries for NETs (over the last 20 years) in the duodenal bulb, with no apparent metastasis. I am also asymptomatic.
You were inquiring about anyone who has had "bland liver embolization." We do have other members who have discussed this procedure including @sturns
@sophiarose and @trivia. I hope that they will post with you about their experience with this treatment.
I'm glad that you have done a lot of research on this topic. NETs aren't something that come up in ordinary conversation, so it is important to be proactive and research as much as possible.
Has your medical team suggested bland liver embolization as the next step in your treatment?
@bluedane, I noticed that you wish to post a link to a video with your message. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post is not spam. Allow me to post it for you.
ABCs of Neuroendocrine Cancer: 2020 Update
from the Carcinoid Cancer Foundation
https://youtu.be/Fe6C7oAsQBs
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I also had multiple small lesions in my liver and a few larger ones. I decided on SirSpheres Y90 embolization which did a great job on the small ones and reduced the larger ones. I did get radiational pneumonia from it though. They did microwave ablation on the larger ones later when my ileum primary was resected. A minute bowel leak kept me having recuring abdominal abscesses for the next year. From now on I will let one thing heal before having something else done.