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!

@frankwc

I don't recall the exact reason why PRRT wasn't recommended for me. There was something about chronically elevated liver enzymes and the possibility of micro lesions in my liver. Doing PRRT might make surgical resection more difficult and maybe even prevent surgery in the future. I was disappointed the medical oncologist (NET specialist) also said surgery was his first recommendation.

I opted for Lanreotide as the 2nd best option because it would still leave the option for surgery available for sometime in the "near" future -- I'm scheduled to see the surgeon again in 6 months. I wasn't ready to contemplate surgery being my first option because of everything that might need to be surgically removed. I might cancel my next appointment with the surgeon. I guess it would be useful if you would expand on the ramifications of removing too much plumbing.

I think age needs to be a factor since I'm 72. I told my doctors that surgery at this stage in my life doesn't seem like a good option to me. I have another surgery that is still pending whenever I'm ready. The surgeon who did the surgery prior to the one that is pending said that I should never have surgery ever again. I think that meant never to have orthopedic surgery but I'm not sure. My immune system is called "deranged" but it is currently medically subdued.

@hammerhead: It’s been a while since your post regarding your pancreatic NET progression. Have you made your decision to have major surgery? I am inquiring about the condition and healing of your body post surgery. Since many of us NET patients face test results showing tumor progression and the many treatments available, it is most helpful to share your experience of surgery. We all wish you your best health and quality of life. Thank you for sharing your thoughts.

Hello @dadcue

You posted about starting Lanreotide injections. Have you scheduled your first injection yet?