Complicated NET Surgery Needed

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.

@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.

@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.

As the others have said, this is your body and your decision. I would definitely want to hear from a medical (i.e., not surgical*) oncologist to weigh options ... you DEFINITELY have options besides surgery. My original tumors led to a resection of the ileum (2004) with a subsequent surgery resecting any remaining ileum as well as the ileocecal valve (2011). Note the dates ... at the time, there really weren't options other than removal. I also ended up with gall stones and a gallbladder removal in 2014. The removal of all of that plumbing definitely has resulted in life-long side effects (I can expand on that if you'd like). I would definitely ask about PRRT treatments like Lutathera ... I completed a 4 infusion course of that in '23 with essentially no or minimal tumor activity since. Knowing the side effects of bowel resections and such, I would be highly resistant to leaping into surgery w/o exploring options with a medical oncologist.

* Not a knock on surgeons ... just that a surgeon's tool is surgery and sometimes old adages like "When you have a hammer, everything looks like a nail" can be true. You need the perspective of a medical oncologist, too!