Jeezzz... o.k was dx in June with scc of tongue, i have had 4 surgeries and the last was to remove 3 1/2 cm , came back cancer free, that surgery was on 11/19/13. A couple weeks ago I felt the same stingy feeling, and there is a white spot, of course I am thinking it's possibly just scarring from my four other surgeries, but I am freaking out because it is the same looking and the same feeling. I am going to surgeon in morning, here is my major issue. My CCC blows me off every time i go to them, the dr has said all (4) times that it does not appear to be cancer again and since the CT SCAN, and PET scan were negative he is not concerned..... am i just freaking out? This last surgery was pretty bad, and i refuse to go to that dr again, so i am going to see my ENT surgeon who has been the one who actually done the surgeries, I am just so confused, guess i should see what he thinks i know, but i am thinking it isn't looking good.

NO YOU ARE NOT FREAKING OUT. You need to see someone else... making a mistake once... is okay. (particularly if you are not part of the demographic who is normally associated with Oral Cancer (in the past - old men (particularly) - heavy smokers and drinkers)

HPV is generally NOT a cause of oral tongue cancer. It's not unheard of but unlikely.

So as I said - making a mistake once is marginally okay- BUT not listening to you and repeated making the same mistake (hello??? proven wrong once is usually a heads up to not rule anything out the next time...) is just bad medicine.

If you want to stay at that hospital then do so... but find out who the top ENT is there and ask to be referred to him/her.

This person is playing with your life and not taking you seriously can be deadly.

Also a PET and CT can turn up negative when the cancer is microscopic. Cancer can seed to the nodes and not be seen on a scan until it is a reasonable size. I've had a 3mm node highlight. But I've also had a 1.5 cm node (that was verified cancer) not.

My dr. (ENT) who is amazing never speaks in absolutes. His experience has taught him that not everyone is textbook.

best of luck.

You have to have confidence and trust in your doctors. If for any reason the current doctors do not allow you to be fully at comfort that they are fully capable of managing your health it is time to change now. Going through this experience is tough enough. It is only made more difficult when you are not able to trust your doctors.

Im so sorry you are upset .... who wouldnt be? If you are not satisfied with your current treatment center, try getting a second (or even third or fourth) opinion at another top notch treatment facility. If you are not comfortable then you will always be worrying about "what if". This whole thing is already hard enough and to have a medical team who isnt as supportive as they could be sure makes it harder.

Best wishes!