Hi,
My post will sound somewhat like the others worrying about symptoms....what I am wondering, is did anyone else's cancer start the same way? or maybe it turned out to be something else? Everything points to oral/throat cancer but there isn't anything to biopsy according to my ENT ! I go back Wednesday, so I am hoping he has a plan B.
I've had head/neck CT scans - negative. Blood work good. Xray of jaw at dentist's and no tooth involvement and nolesion was seen (is this strong enough of an Xray??) No fever. No obvious mouth sores, but horrible pain under lower molars for almost a month. 3x prednisone, antibiotics, massage, muscle relaxer, magic mouthwash and antiinflammatories. All on one side, my neck hurts a lot and is slightly swollen but lymph node is not elarged. My tongue hurts on that side and feels like its being drawn back down my throat. I have an earache with a fluid like fulllness that echos. Hurts to talk, eat and horrible to swallow. Gums around the back 4 teeth are red, sore and swollen, along with throat.
I had Triple negative BC 2 yrs ago and my likelihood of recurrence is still high. Am I headed toward the inevitable? If so, ok, but the constant 24/7 pain is driving me nuts even with hydrocodone. Its been really really really (!) hard to work the last 3 weeks and I dread another week of eating bananas and hydrocodone, hoping no one will notice. Dr. will biopsy whatever I ask him to check and prob an MRI or PET scan, but actual diagnosis is probably a good 2 weeks away if not more.
Thank you for listening! What do you think?

It could be something with your teeth. You are doing the right thing by going to an ENT. Hope you get this taken care of quickly.

Best wishes!

I case anyone else is checking this thread out due to similar symptoms...I don't have an answer yet, but I am frantically working on it! Now my jaw hurts all the way to my chin. I have not slept well in 3 nights...I am so hungover from pain meds. I have a crown over the gum area that hurts most (8xrays and panorama= no infection) so I tried to pull it off with a pair of pliers tonight. I am desperate!! I don't know what I hoped to find. I hit the roof of my mouth so hard, it bled. Had some hot chocolate and called the ER# for my regular dentist. I told him about my mouth and he said he would see me 1st thing tomorrow am.
I think this frustration comes from the 2nd visit to the ENT today. I told him everything was the same and what did he have to offer? He didn't have a plan B I just got up and walked out. He came with me, didn't charge me and gave me the name of several neurologists. I called and the earliest appt. is in December. I am not going to make it to December. So I gave up on them. I called my onc, and she said I could have a pet scan, but will probably show inflammation and not provide a diagnosis unless I have rampant cancer throughout my brain and bones. That's a costly test too. And a week away with scheduling/ins/etc.
I am not going to be able to keep my job if I don't get well fast. Its only me here, and I'm so tired. any ideas?

Hi 2nd time. I am so sorry to hear about your struggles. It just amazes me that in this day and age there are still physicians out there who really don't seem to take a patient's symptoms into account and continue to probe for a diagnosis. I have been along the same path you have for the past 11 months. I finally referred myself to a Head and Neck Oncologist for another opinion after I got the runaround from my PCP, a General Surgeon and an ENT with months of vague symptoms. Started with a sore throat and dry cough, progressed to enlarged cervical nodes (1.3cm and 1.5 cm), feeling of fullness in my neck, pain in my neck which has now extended to my jaw, upper and lower back molars, along with numbness in my cheek area with pain radiating up to my ear. The Head and Neck Onc. has ordered 3 MRI's to be done ASAP (Wed. of next week) of my head, neck, and cervical spine. He feels that there is something definitely going on based upon my symptoms~ so at least I know I am not going crazy!

I would say to you please keep pursuing this, do not wait until December, keep going until you get to see someone who will truly listen to you! With your history of triple neg BC I would think your ONC would be more concerned and recommend a consult with a head and neck onc? Just a suggestion, but I certainely wouldn't wait until Dec! Hang in there and keep plugging away~ we must continue to advocate for ourselves for we know our bodies better than anyone! Hugs and prayers!

I am cruising thru this site again today trying to pick up some useful information, as my doctors are 'baffled'. Great.
Since I wrote, I've seen 3 dental specialists, had a tooth removed 11/16 and another one 12/5 in the hopes that it would solve the problem. Horrible jaw pain not as bad, but tori now ulcerating and oh so sore. The lump under/along my jaw is bigger and very very sore. Saw my onc and she said blood work is all borderline, but within limits. Also, that jaw cancer is so rare, I can be assured its not cancer. Saw my 3rd oral surgeon who is also a MD, and he said he was baffled and come back in 2 weeks. I cried and said that was not an option. So he got me in with the top ENT the next day. So they ordered a mri of head and neck DX benign jaw tumor. They are going to discuss and go from there. My trigeminal nerve now involved...tingling and twitching on upper cheek. My neck neck muscles are still so sore...I find that strange. The top mandible is now joining in the inflammation. What fun is life when you can't eat or talk and can only live to get thru the workday so you can continue paying the doctors? As I told them, I feel like I have the flu without the cold. And I am OVER the pain pills !!! It takes the edge off, but doesn't block the rawness in my mouth. I have viscous lidocaine, but its the same as my Anbesol and tastes worse! Ruthanne, thanks for the encouragement and 'listening'. I do have bone spurs in my neck...could this be aggravating facial and mandible nerves? The MRI better show something!!!!! I am losing my mind !! I dreamt my mother (gone for 5 years) took me to an insane asylum....

PS Both the oral surgeon and ENT say the neck lump and mouth pain are NOT related. Hmmm Oh yeah, my younger sister died from throat cancer 5 years ago. So having had HPV, TripNeg BC and that...you can see why I am alarmed aside from the constant pain.

Well I'm not sure what to tell you truthfully no one can say definitively that he neck lump and pain are not related as a lump coud be displacing other tissues and putting pressure on nerves. You're doing all the right things - push to have the lump removed if possible. Hugs and prayers to you.

Good luck with finding some answers. Could it be lymphdemia from BC surgery, if you had any, or late stage radiation effects, if you had that too or other association from BC? Maybe also see your Oncologust who originally treated you.

How frustrating it must be. Has the blood work that you have had done ruled out a autoimmune disease such as Lupus, which can also mess up your mouth and your peace of mind?

oh i ment to post this here:
i have similar pain on the right side too. Before I mention about my problem, I did have my tonsils/adenoids out at age 12 and had teeth problems since, very severe pain as a teen with cold weather, I now in my 50s have a full top plate and only front bottom and suffer daily with jaw pain.
It all kinda started after the 911 tragedy, that october i had this flu like problem lasted till the spring of the next year. After that i had had earaches, headaches, under my tongue. From that spring till today....I've been to multiple ENT, dentists, Neurology, medical physcians with no conclusive diagnosis to the pain. For a while they called it trygeminal myology (but the diagnosis didnt fit, it was under the face)and tmj and both were dropped as a diagnosis. I recently went to a civilian doctor who tested for "epstein barr virus" and turns out that it showed negative BUT showed that i had had it in the past. I do get rashes on my chest and neck, my under eyes are almost black now from years of pain and the symptoms are now and have been going down my neck to my shoulder, a little now on my back. MRI/sono-grams/cat scans show shoddy lymph nodes in neck and recently found a cyst on my thyroid. My Question is why haven't they wanted to remove these nodes that swell and are apparently getting bigger. they use the term small level 11...but there are numerous swollen lymph nodes. And the pain under my jaw feels like a horrible infection. Lately the pressure behind my nose and eyes/neck and jaw has cause worse dizziness....to the one point i almost past out.