I am not ok with this at all

Posted by freeangel @freeangel, Sep 24, 2019

Hi, I’m 48 years old. I’ve been seeing doctors for years because of profound fatigue, headaches, trouble swallowing and on and on. Basically have been told I’m fine, I just need to eat this or do that.
My primary care nurse ordered a couple extra labs this month, chromogranin A and 5HIAA. I got a message saying they were out of range, I repeated, the 2nd chromogranin A came down a lot, but was still 5 points out of range. The nurse didn’t say much but referred me to GI. Tonight I logged on to the patient portal and a technician left a msg for me saying that the nurse really wants me to make an appointment with gastro because of a « possible carcinoid tumor. » Nice way to find out. At 2AM in my messages. I’m a little freaked out.

@tomewilson

Most insurance plans will let you go out of network for a second opinion. You can also build an argument that they don’t resources who are NET specialists. I’d be happy to help you with such an out of network letter

Jump to this post

Thank you. I see the new oncologist on the 21st. We'll see how knowledgeable he is about NETs. Then I'll build my case from there.

REPLY
@feebee

Thank you. I see the new oncologist on the 21st. We'll see how knowledgeable he is about NETs. Then I'll build my case from there.

Jump to this post

I appreciate your update, @feebee. I look forward to hearing from you after your appointment on the 21st.
Will you provide an update after you see this new oncologist?

REPLY
@hopeful33250

I appreciate your update, @feebee. I look forward to hearing from you after your appointment on the 21st.
Will you provide an update after you see this new oncologist?

Jump to this post

I sure will!

REPLY
@freeangel

Thank you for your kind words. I couldn't tell if my first msg posted, so that's why I wrote another one. Thanks for your help. Yes, freaked out is a good term. I did talk to the office about removing those diagnoses – the most they would do is move the breast cancer over to "inactive problems." Yes, I made an appointment with GI for thursday. Thanks so much!

Jump to this post

Hello @freeangel,

The last time you posted you were going to see a GI doctor. I hope that appointment went well. How are you feeling now?

REPLY
Please login or register to post a reply.