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Complicated NET Surgery Needed
Neuroendocrine Tumors (NETs) | Last Active: Jul 8 9:03pm | Replies (21)Comment receiving replies
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!
Replies to "As the others have said, this is your body and your decision. I would definitely want..."
@frankwc I had my 1st Lanreotide injection and it halted the symptoms very well. I have a follow-up tomorrow 7/9 with my medical oncologist. I will be having the surgery as it is necessary to debulk the tumor burden so other therapies like PRRT will be more effective. My medical oncologist explained it like this...using PRRT or other advanced therapies with the amount of tumor burden would be like throwing a pebble into a lake. There's just too much cancer in my liver for it to be effective. I received a second opinion from The Johns Hopkins tumor board as my local health care team Wellspan and Hopkins work hand in hand. Both tumor boards suggested the surgery initially to reduce the tumor burden. I really didn't feel like there is much choice with both Hopkins and Wellspan Tumor boards in agreement based on my case.
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@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.