As most of you know I have been trying to find out what has caused my terrible tongue pain (constant) for over nine months.

I recently had a hyoid bone tip removed that was poking in the spine which they thought may possibly be causing some of my symptoms, but not the tongue.

I am 3 1/2 weeks out of surgery and the tongue pain is still there. I have had small biopsies on my base of my tongue and lingual tonsil removed which did not cover as much area as I thought. I also as you know had tonsillectomy, MRI, CT scan, and PET scan which did show slight uptake in this area. 4.1 SUV.

My question, is it possible that a area was missed that could be cancer? Is possible to be that small and look completely normal like tongue tissue? I am not very convinced by the MRI, CT, and Pet because I know of so many individuals whose have been missed by these test.

Please any insight would be helpful. I am tired of this pain and there is NO other explanantion. Should I biopsy the two remaining areas that the doctor missed? I don't want to have cancer, but I don't want it to be missed either. I have known and personally talked with people who have had all testing done that I did and even biopsies that were missed. Please help. Does this cancer grow on the surface of the base of tongue or could it be under the regular tongue tissue.

I'm so literally mentally exhausted and this pain is horrendous. My pain started in March with dry mouth, then no taste in back of mouth, then tongue pain and burning started, later ear pain and tooth pain on same side.

Please, no negative comments. I'm worried sick and only need positive people leaving comments. Thank you

Anything is possible, but maybe not probable with all these clear tests, minus the hyoid bone. I would think at 3 weeks there still may be pain. I probably had 26 or so scans, FNAB, and none proved inaccurate, except for one MRI, just did't see the cancet, but was baked up by doing a PET/CT. Uptake can be from anything, and is not solely relied on for diagnosis. Yes, the BOT has deep musculature, and can go deep, being undetectable by palpable exam, but would think one of the other scans would pick it up too.

I hope you find answers, and it's not cancer until proven otherwise. Good luck.

Hi there... okay I don't want to feed your fear. Realistically speaking anything is possible. As paul said three weeks out pain is possible due to healing and scar tissue. It depends on the size of the area removed an how quickly you heal. I would say the pain should be gone within another week.

You do have reason to be afraid, I hear that, since you have had some uptake on your scans. However scans also pick up inflammation, infection and healing areas that are hypermetabolic.

Does cancer grow only on the surface? No, it can grow in the muscle or wall of the area/tongue and be invisible. Usually though when it gets big enough to cause a problem, even if it's hidden under the surface, there will be some indication. possibly a protrusion, small sore, lump... etc.

If you have a large area that should be biopsied then often doctor will take a few samples from places that cause concern for them.

I want to say wait and see if you heal. However trust in your dr. is important - if you are concerned they missed something go to someone who knows oral cancer.

best of luck.

Cheryl,
My doctor is a H & N cancer doctor. My pain is in the exact place it was before the surgery and my doctor said I had healed perfectly. I don't want to seem crazy, but dangit I want some relief from this pain. Once again, my pain is BOT, ear, back molar and same side as my uptake on PET Scan. Even though I had uptake, my Pet scan did say no mass definite indicated. I'm not sure if that is promising. My doctor did take out 9 lymph nodes with my Hyoid bone tip and they were benign as well as my lingual tonsillectomy. Quite honestly, their are only two more areas left to biopsy which are the areas I have been most concerned about. I thought he would get them in the lingual tonsillectomy, but he didn't.

All my testing seem to be promising, but same pain isn't.
I'm at wits end with this. He wants to send me to Neurologist, but Neuralgia pain is not constant, and mine is.

Thanks for insight and I appreciate you so much. I just want results and to be pain free.

What does it mean on PET scan when it says Mild Uptake seen of 4.1, but no definite mass seen? Does PET scan show mass or Ct done with Pet scan?

Changed my mind....

Good Luck!

Have you gone to a pain specialist? That may be a place for you to get some relief from the constant pain you have. So sorry to hear you are still not doing better. I was hoping you would be able to move on after finding the bone problem.

Good luck!!!

Here is another tip which might help. This is not meant to be taken in any way other than as a way to help you. Instead of posting bits and pieces of the pathology report and asking us to try to interpret it, how about going back to one of your doctors and ask them to fully explain it. Im not trying to be offensive in any way. I know you are suffering and need help so this is an idea I had for you to get the path report understood. Just remember none of us are medical professionals with years and years of medical training and hands on patient experience. We dont know your entire medical history and wouldnt know what the implications of different ailments would have on the tests given. By returning back to your doc and asking for them to explain it in detail (line by line if necessary) you are advocating for yourself and the doctor should give you respect and realize your situation and hopefully put your mind at ease. I feel just awful that you are suffering for months and that even after finding the bone problem it hasnt worked to cure you.

Good luck, I hope you find the source of your discomfort. I also hope that the answer isnt cancer.


PS... If its nerve pain you are having, ask to try gabapentin. It worked wonders for me when I was having that type of pain.

I'm very sorry you are still in so much pain. Your surgery wasn't that long ago, so you could still be healing. Remember we are not doctors here, and can only offer support and advice, not answers. If your doctor wants you to see a Neurologist, why don't you make an appointment? If he or she cannot provide answers, ask them what the next step should be. Repeat as needed until you find the answer!

If you haven't done so already, get copies of all the medical tests you've had and bring them all with you to any new doctor you see. (I've scanned most of my medical records so they are readily available if I need to see a new specialist.) Does your main doctor have all these reports? Also, write down all your symptoms, when they started, and any other information that is relevant. If you go to a new doctor, it helps to be prepared and be able to provide a complete medical history.

Good luck!

Christine,
Thank you for your response. I have been on Neurontin for 6 months along with Lyrica which are both suppose to help with nerve pain. My ENT put me on this in the very beginning.

My pain is localized to the back of my tongue. My ear and back molar hurts as well. This is constant pain and agonizing.

I have healed perfectly from my surgery according to the doctor. The pain is the exact pain I was having before. It's crazy. Now, I don't have that poke feeling any longer from the hyoid bone tip so that is a positive.

My worries are truly that I have tongue cancer with my symptoms and light up on the PET scan. The doctor hasn't biopsied the main area I am hurting. I thought he would have got that area with the lingual tonsillectomy, but he got just below it.

My medical history is simple. I have had every blood work up possible, Endoscope, MRI, CT Scan, and Pet Scan along with Tonsillectomy, Lingual Tonsillectomy, and 9 lymph nodes taken while removing hyoid bone tip. All negative.

I have another checkup with my ENT in a week and I will discuss all of my problems and test as well. I am very thorough. I have questioned him on everything and usually stay in his office for an hour. I have all my medical records as well.

My tongue just hurts so bad, and it can't be just nothing. We all know that this cancer can be hidden and missed. I've seen people with same testing missed over and over......sad but true!

Thanks for all the help. Any other info would be appreciated.