← Return to Neuroendocrine Tumor - no treatment plan method
DiscussionNeuroendocrine Tumor - no treatment plan method
Neuroendocrine Tumors (NETs) | Last Active: May 5 8:09am | Replies (164)Comment receiving replies
Replies to "@dadcue That is great. Will you provide updates as you follow up with your appointments?"
Connect

@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.