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Neuroendocrine Tumor - no treatment plan method
Neuroendocrine Tumors (NETs) | Last Active: 6 minutes ago | Replies (141)Comment receiving replies
@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.
Replies to "@hopeful33250 I had my visit with the NET specialist (endocrinologist) a few days after the NET..."
@dadcue From someone that’s had 2 bowel obstructions due to NETS, don’t wait too long for surgery. I had vomiting, cramping & abdominal pain that doubled me in half; took 15-30 minutes each time for it to pass. Usually happened 4-5 times per day until a PET scan found the obstruction, surgery was a relief. Also, have them take your gallbladder out too, that will make things much easier if you will be treated with monthly injections. Good luck!
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@dadcue
I am glad that you were able to meet with the endocrinologist. It sounds as if you got some good information and direction. I know that others have taken the monthly injections, but each person's situation is very different.
Will you be having the CT scan with contrast before you receive the injections? Do you have an appointment scheduled for your first Octreotide injection?