Neuroendocrine Tumor - no treatment plan method

@hopeful33250

I saw a surgeon who is part of the multidisciplinary NET team of specialists. Surgery was recommended but it wasn't clear to me how soon the surgeon would do the surgery. I read the post-visit notes which implied that I was the reason for delaying surgery.

"Offered surgical resection, patient deferred for now. We recommended upfront resection of the lesions and discussed resection versus watchful waiting. The patient expressed a strong preference for waiting."
-------------------------
We talked about the "potential problems" I could have if surgery wasn't done. The surgery sounded extensive to me and included the removal of my gallbladder. The reason for removing my gallbladder is so I wouldn't develop gallstones. Removing the gallbladder during the initial surgery prevents future, urgent, or emergency surgeries to treat gallstone-related pain, infections, or blockage. The anticipated treatment with medications like octreotide or lanreotide was the reason to remove my gallbladder.

I was somewhat overwhelmed by everything the surgeon said. My follow-up with the surgeon is in 6 months. I'm not inclined to do the most invasive thing first. I wish to be treated and I will see an endocrinologist that is a NET specialist this upcoming week on Tuesday. I was happy about the 6 month reprieve.

A CT-scan with contrast will be done which will give the surgeon more information than a capsule endoscopy so the latter was cancelled.

My question for anyone is:
What are the alternatives to immediate surgery if I take the "wait and see" approach to treatment.

The surgeon said he could see a tumor that wasn't reported on a CT-scan without contrast that was done in 2020. That CT-scan was done because I had abdominal pain caused by a kidney stone that was moving into a ureter and causing an obstruction. I still have multiple uric acid kidney stones in both kidneys that aren't moving so they don't cause any pain. I don't like abdominal pain and I don't want anymore obstructions or blockages anywhere.

@dadcue

Your story is similar to mine. During my second resection surgery for NETs, the surgeon removed my gallbladder, and it was found to be full of stones. So, the decision to remove the gallbladder if you have the resection is probably a good idea.

I'm wondering about your kidney stones. Has it been determined that your kidney stones are a result of hyperparathyroidism? Has the parathyroid hormone level been checked? The combination of hypoparathyroidism and NETs can indicate a condition called MEN1. If you don't already know the answer to this question, it might be a good topic to bring up at your appointment with the endocrinologist this week.

Keep learning and posting your questions. I'd enjoy hearing from you after your appointment with the endocrinologist. Will you post again after your appointment?

@hopeful33250

Interesting thought about hyperparathyroidism. I have kidney stones because of a high uric acid level. Nobody seems to know why my uric acid level was so high. It is normal now because I'm taking allopurinol for gout.
https://pmc.ncbi.nlm.nih.gov/articles/PMC12300645/
---------------------------
I took Prednisone for decades until I was able to taper off prednisone. My problem with chronic inflammation was attributed to a genetic disorder called HLA-B27 syndrome. Don't answer this --- I surely can't have more than one genetic disorder?
https://www.ncbi.nlm.nih.gov/books/NBK551523/
---------------------
I have never worried about my hormones but I have multiple hormone imbalances. The hormone imbalances are attributed to being on Prednisone for such a long time. I have multiple autoimmune conditions so that was why I needed Prednisone for so long. I was able to taper off Prednisone about 5 years ago when an IL-6 inhibitor was tried. That cytokine apparently plays a role in the development NETs.
https://pmc.ncbi.nlm.nih.gov/articles/PMC11480914/.
---------------------------
I'm just tired of everything. When I was able to taper off Prednisone, I thought the worst part was over. Now I'm beginning to feel like the worst is being saved for last. There is a geneticist on the multidisciplinary NET team. I wonder if I will be seeing them after the NET endocrinologist.

This will be the second endocrinologist I see. The first one was treating me for metabolic syndrome caused by long term Prednisone use. The first endocrinologist referred me to the NET specialist endocrinologist. The first endocrinologist might manage my NET treatment after receiving recommendations from the NET endocrinologist.

Before surgery happens I need to visit with my rheumatologist because the surgeon says my IL-6 inhibitor called Actemra (tocilizumab) needs to be stopped for a month before surgery and a month after surgery. I don't see how that can happen. The surgeon said prednisone would be a worse medication to be on prior to NET surgery.

All my problems seem to come in multiples and they have a tendency to multiply!

@dadcue
You have dealt with a number of problems. From what I understand, it seems that the prednisone use has caused a lot of hormonal imbalances. I hope that the endocrinologist will sort out all of these issues for you.

I look forward to hearing from you again.

@hopeful33250
I had my visit with the NET specialist (endocrinologist) a few days after the NET specialist (surgeon). I liked the direct and to-the-point approach. We discussed surgery and some of the obstacles (real and imagined) that I have for surgery.

A CT-scan with contrast might provide more information than the Dotatate scan for assessing how soon I might need surgery. Regardless of the tumor size and amount of obstruction I currently have, I was given a 100% guarantee I will have a bowel obstruction at some time in the future. At that time it will be an "emergency surgery" under circumstances which will be worse. I might have some "early warning" signs that I shouldn't ignore.

For now ... octreotide injections will be initiated to see if things improve. I said that I wasn't having any "major" problems while being honest about my symptoms. The specialist thought I had carcinoid syndrome already.

Is anyone ever treated medically instead of surgically in the beginning? There was some evidence for a NET six years ago so I guess I'm not exactly in the beginning stages of this. Waiting six more months to plan for surgery doesn't seem too long to me.

My doctor has recommended Lutithera as my next treatment I am worried about the side effects and wonder if anyone has experienced this treatment? Thanks for your reply

Same here,they had another check 8 months after surgery,when they couldn’t find it, during this they ruptured an artery in stomach lost 1 litre of blood. Due to see specialist next week. Have malabsorption of B 12 .
Any suggesti9ns for questions. Thanks