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Diagnosis Frustrated: How you were diagnosed with NETs?
Neuroendocrine Tumors (NETs) | Last Active: Apr 4 12:28pm | Replies (78)Comment receiving replies
@spaztwobe
I feel your frustration. It took 12 years to correctly diagnose my lung NETs and DIPNECH after 50+ nodules were seen on my CT scan. Lots of wrong guesses. I wouldn’t agree to an open biopsy so we waited until they could do a needle biopsy. It actually took 30 years to diagnose me from the time chronic coughing, mucus and shortness of breath started. I’ve been taking octreotide injections for 4 years now and it has been life changing to control my respiratory symptoms. I am being treated by a NETs team at a teaching hospital. My local doctors were not familiar with it all especially DIPNECH. I hope your NETs team meets your needs.
Oh, I do get flushing on one side of my face all the time as well as itching on the front of my neck.
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@californiazebra I remember you from this time last year. I see the date on your post, so I think I am correct. I don't remember people posting about DIPNECH or octreotide at the time. Not sure how I missed it. I'm next to positive my surgeon, who was working with my pulmonary Dr. does not know about either one of these. He told me to just come back every 3 months for scans, and let me go basically. My question to you is, did your doctor do a baseline blood work-up (thyroid, sugar levels, gallbladder ultrasound) or anything BEFORE starting the octreotide? It just seems like common sense to me since this medicine can cause some pretty bad side effects. Thanks