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Large mass on neck my PCP says ' monitor'r
Hi - I have had a visable mass on the side of neck since 2023. My PCP ordered an ultrasound thatcame back w very small multiple nodules . And the decision at that time was to monitor.
Since then the mass has gotten larger and my voice has changed. In fact sometimes I can't really speak, and now I can no longer sing in my church choir ( never know what sound may come out of my mouth!
The PCP barely touches my neck when I express my concern. She is dismissing this ?
I am someone with a couple of big chronic diseases and specialists - I am wondering if PCP is just tired of me
I have my annual status review w PCP coming up - I want referral to ENT . What should I do?
Thank you
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@coffeeplease
How frustrating. This is a situation where you need to be your own advocate. Especially when effecting your quality of life.
Have they run thyroid blood test?
Have you asked your PCP directly for a referral to ENT? Be insistent, it has been monitored too long and needs to be investigated ! Make sure you tell them about inability to speak and something is interfering with your airway or larynx.
Are you able to make an appointment with ENT yourself or need a referral?
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3 ReactionsHello @coffeeplease. You do need a new PCP. If she is only monitoring this mass despite your progressive changes then it is time to insist on further investigation with a referral. I had to do that to get my cancer diagnosed after multiple visits to local ENTs brought no answer to my ear pain.
If you know of an ENT that you would like to see then request a referral there. If that does not produce the diagnostics that are needed, then another referral. I went through 3 local ENTs then requested a referral to a big teaching hospital an hour away from home. There I finally had a diagnosis. You are your own best advocate for your health care so be vocal and insistent until you get results.
Your insurance will dictate whether you need a referral or can schedule an ENT appointment yourself.
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3 ReactionsI second you need a new PCP. I would have a qualified ( head and neck surgeon) ENT perform a laryngoscopy ( throat scope). It is a procedure to examine the throat, larynx, and vocal cords using a scope with a camera. The procedure can be done with a thin, flexible scope inserted through the nose or a rigid scope inserted through the mouth. They should be able to see if you have anything going on and take a biopsy sample while in there to test. The procedure is relatively pain free and takes about 5 minutes. If it is HPV related it is highly treatable with excellent outcomes but the sooner caught the better. I urge you not to wait.
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3 ReactionsThank you all for swift responses!
I will request referral to ENT at large research medical center. University of California San Diego Medical Center is where I already have have neurology team treating me for a rare complex disease- autoimmune encephalitis ( 20 years).
Autoimmune Encephalitis is inflammatory disease of brain and CNS. I do have lesions in my brainstem and show obvious symptoms of cranial nerve damage.
It is possible my voice change is part of AE (cranial nerve ). But investigating the neck mass is priority - what ever is going on there let's find out.
My hormone / thyroid blood panels are in average range.
My PCP appointment is Nov 5th . I will review ENTs at UCSD medical center to see who is accepting new patients - yes that's a problem
Always something - right?
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