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Neuroendocrine Tumor - no treatment plan method
Neuroendocrine Tumors (NETs) | Last Active: 6 minutes ago | Replies (141)Comment receiving replies
@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.
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@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.