Platinum Member (300+ posts) Joined: Jun 2013 Posts: 346 Likes: 3 | I would say, if it's not cancer (and it does sound like it's going to not be cancer), then ask them to tell you what it IS. Don't focus on chasing one particular diagnosis, because you're going to fret too much, and they'll take you less seriously. Do insist that they keep searching for AN answer, whatever that answer may be. It may very well be TMJ ... that can behave very oddly, and nerve pain can come out in odd places. But it might not ... it could be a thyroid issue, if you're being treated and not getting better. It could be anything. Doesn't have to be cancer. Hopefully it isn't.
I've had a few where I had to be persistent to get them to listen and take my concerns seriously, when things were beyond my primary's experience. (He's a great listener ... we need more like him.) I've 'fired' a few specialists for not listening or not considering other options that were more likely than what they had as preconceived ideas. (Those tended to be mental health specialists, alas, or obscure pain specialists.) My guesses weren't always right ... but answers were worth fighting for. An open mind helped, but I did stand firm on finding some sort of answer.
((hugs))
Surgery 5/31/13 Tongue lesion, right side SCC, HPV+, poorly differentiated T1N0 based on biopsy and scan Selective neck dissection 8/27/13, clear nodes 12/2/13 follow-up with concerns 12/3/13 biopsy, surgery, cancer returned 1/8/14 Port installed PEG installed Chemo and rads 2/14/14 halfway through carboplatin/taxotere and rads March '14, Tx done, port out w/ complications, PEG out in June 2017: probable trigeminal neuralgia Fall 2017: HBOT Jan 18: oral surgery
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