1. < Neuroendocrine Tumors (NETs)
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S4, G2 NETS in mesentery. Declined Exploratory Surgery

Posted by nofire @nofire, Nov 6 1:00pm

I was diagnosed with S4, G2 NETs in my mesentery. Suspected start in intestines but not definitive. After discussion with surgeon who recommended looking and trying to remove tumors and affected intestines, I declined the surgery. I was told he may or may not be able to get them, and he may or may not be able to get it all. It sounded like it would begin as a small surgery but could develop into a large undertaking with no guarantees. It sounded risky with many potential problems. I am now receiving Octreotide injections monthly. I have taken 4 injections with no problems. My plan is to see if there is any progression after 6 months when I will get another scan. I am not opposed to surgery, if need be, when/if the time comes. Has anyone else made the same choice and what were the results? I would love to hear what others have to say about my plan. Best wishes for healing to all!

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kg | @kgrear | 4 days ago
In reply to @siluka "@kgrear I live in Cairns australia. No net specialist here. I have a fantastic medical team...." + (show)
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@kgrear I live in Cairns australia. No net specialist here. I have a fantastic medical team. in 2022 i had 1.5 m of ileum removed and 10 lymph nodes (4 cancerous) now have liver lesions that are stable. Med team said if liver lesions grow and they are 100% sure they are nets then liver surgeon will do resection. CT MRI and Pet scan show the same liver lesions stable but knowing that it will be stage 4 i am confident they will resect the buggers, if you feel that you want to remove them then seek other opinion.

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@siluka
You are right to recommend a second opinion. My liver NETS are very tiny, but scattered throughout my liver and so they can’t do a resection. I wish you the best of luck! Please do keep in touch.

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siluka | @siluka | 4 days ago
In reply to @kgrear "@siluka You are right to recommend a second opinion. My liver NETS are very tiny, but..." + (show)
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@siluka
You are right to recommend a second opinion. My liver NETS are very tiny, but scattered throughout my liver and so they can’t do a resection. I wish you the best of luck! Please do keep in touch.

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@kgrear mine are tiny too. another recommended treatment for multiple liver lesions they may try is microwave ablation let me know how you go.

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