Text Results and Pain - Not sure best direction


Hello - I hope someone has some idea. 

Currently, I have carcinoid with lymph node and liver mets diagnosed in 2009 -- very very slow progression on the last FDopa in 2016. 

The last two years on and off my lower jaw hurts terrible and usually comes with night sweats, underarm pain, naseau, but it goes away. 

I had a regular pet scan (versus FDopa) while the jaw was hurting, It says under Head and Neck:"Left level I hypermetabolic lymph node with maximum SUV of 3.3 is likely reactive."

We never did anything about it. They suspected it was from a tooth infection. Well... I have no teeth left in that jaw area! 


This time it has lasted five days. The ER started me on antibiotics but could not see an infection and did not provide a diagnosis. They took x-rays of the painful area. 

They did say see an oral surgeon asap. (I have no teeth in this area, but I did it) 

The first oral surgeon I went to looked at the Xray and said they don't handle this "issue." They did not even set an appointment. 

I have scheduled with my oncologist and made an appointment with another oral surgeon without showing the xray first. I sent the ER referral with the copy of the xray by email. 

I cannot find a single xray image online similiar to my xray. 

I put the xray in this link https://drive.google.com/open?id=1aEtBpmQWdmjr5wkPlSLZwtuLU6mhj5ax






  • Curlyn
    Curlyn Member Posts: 189
    edited February 2018 #2
    Hi rica, sounds very

    Hi rica, sounds very frustrating. The only thing that I would say, is to find an ENT who could assess you and do a biopsy. Not trying to scare you but "likely" is really not a definitive diagnosis. I hope you are able to find answers soon.

  • bebo12249
    bebo12249 Member Posts: 181 Member
    I’d be more interested in the

    I’d be more interested in the guidance offered by your oncologist and would see her/him first if possible. Bill

  • Frances_S
    Frances_S Member Posts: 54
    Hi Rica,

    Hi Rica,

    I would go and see a head an neck oncologist, because this is there area of expertise.