Complicated NET Surgery Needed

Posted by hammerhead225 @hammerhead225, 14 hours ago

They believe they found the original NET in my lower ileum. The plan or removing that part of the small intestine, appendix, and part of colon depending on involvement. Then rerouting the small intestine into the large. They call it a ileocecal resection. Then will travel north to the liver and attempt to resect multiple NETs in my liver. They will also remove my gall bladder. A bit overwhelming to say the least. I will start Octreotide injection this week and have 3 before surgery in August. Just curious if anyone here has had a similar surgery to remove tumor burden before starting other chemical therapy?

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I'm facing the same surgery including the removal of my gall bladder . Apparently this is a standard preventive measure for patients starting long-term lanreotide or octreotide. It was explained to me that long term lanreotide will probably cause me to have gall stones.

I'm delaying surgery until I see what lanreotide does. It should decrease hormone production and possibly decrease the size and spread of my primary NET in my ileum. Postponing surgery too long was not advisable because "it would be just a matter of time" before I would have a bowel obstruction. I would then need surgery under emergency conditions whether I wanted surgery or not.

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@hammerhead225: I received similar advice from a surgeon when my NET sm. intestine primary w/ liver met tumors showed progression in size.
I rejected their suggestion of major surgery and chose PRRT Lutathera series of 4 infusions. I continued my monthly Lanreotide shots throughout (& probably forever!).
I am very grateful to receive the tumor shrinking & disease control my body needed. I declined the touts of “disease cure” for a non-invasive, comfortable PRRT NET treatment that has offered me good quality of life with NO recovery time (except some fatigue). This treatment continues to show improvement in my remaining tumor sizes after 2 years since PRRT.
By researching the treatment options that you may have vs. the advice of a surgeon and then compare best decisions with your NET medical oncologist.
It is not an easy decision… but this is YOUR life! Whatever your decision I wish you peace and healing.

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@hammerhead225 Were any other treatment options presented to you? I was diagnosed with a pancreatic neuroendocrine tumor that has spread primarily to my liver in 8/22. I have been using chemo since to shrink the tumors and lesions and a reduced about to keep them stable.

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