My SCC BOT was visible on CT, as were affected lymph nodes, and it was easily visualized with the endoscope. However, it was too far down to be seen otherwise. The tongue itself was involved, not the tissue below it. It to me looked like a swollen area of the tongue when I viewed the video of my endoscopy. Hope that helps.

Good morning, I hope you and Kris are doing well and I'm praying for you continually. Did Kris tumor grow outwards or inside of his tongue? Also, did he have tongue pain at all?? I'm struggling with these symptoms and quite honestly there is no other explanation for my symptoms. I'm waiting a month a I'm going to demand a pet scan. Also, how is Kris doing after his surgery? You have been very helpful and I know I have not been diagnosed, but it is just a matter of time.
Hope you have a wonderful weekend.

"I got my biopsy report in and they said I have hyperplasia of tongue and tonsil"

Biopsies are the most reliable way to detect oral cancer. Just saying.

"there is no other explanation for my symptoms"

A tonsillectomy and biopsies of the tongue, throat and surrounding areas done a little over two weeks ago would definitely and without a doubt cause your symptoms. Just saying.

"T"

My symptoms were 6 months before the tonsillectomy and biopsy and are now back in full force after healing from surgery. Same location-same pain! I wish someone with BOT cancer would explain to me if these tumors are always seen. It's my assumption that they are not. Do they always grow outwards or do some grow inwards where it would be harder to see. Just need help. This is real and not something I just googled. This cancer is so easily missed and I just need to know what my next step would be. Would a MRI show this cancer better than CT scan? Thanks

6 months of pain in BOT, ear and throat is not just "nothing." Especially since I have been tested for everything else that possibly could cause these symptoms.
I'm concerned and this forum is my only help. Just because I not been diagnosed, doesn't mean I don't have the cancer. They only biopsied one small area of tongue and tonsil. Easily could have been missed.

Despite the biopsy results and the opinions of many, you truly believe you have cancer. I don't doubt for a minute you truly feel that way. I cannot even begin to imagine what it's like to live day in and day out with that kind of fear and anxiety. I'm a cancer survivor and I don't even come close to feeling as you do. No amount of re-assurance from anyone here or tests thus far can dissuade you from that belief and I can't see any one post or positive writing or encouragement that will change that.

With all due respect, your next step would be to stop trying to self diagnose whatever it is that's affecting you with Dr. Google. Reading everything you can and obsessing over this, even after exams, surgery and biopsies have shown otherwise, is not healthy, mentally or otherwise.

As was recommended prior, seek a professional that specializes in health anxiety issues or, if it means your own peace of mind, seek out an ENT at a CCC and get a 2nd or 3rd opinion.

Best wishes and good luck!

"T"

With so many here that have had a missed diagnosis, and with so many 4 year ENT's that have not dealt with OPSCC, (it's the realm of 6 year ENT's that become head and neck surgeons) I would recommend that you get another opinion at a CCC. That way one more issue with a potential diagnosis will be eliminated, the doctors there see these every day. You don't say in your profile exactly where you are. Give us a geographic area and let us help you find the best cancer center near you that you can self refer to, and see someone that looks at oropharyngeal cancers every day. They will likely repeat the tests. If you come out of there without a cancer diagnosis, I would feel more comfortable looking at other possibilities.

I live in Alabama, and I went the UAB and the doctor I used was a head and neck guy. I can't get into CCC without a diagnosis. I have already tried. Anyway, I'm sorry to bother you guys. I don't have psychiatric problems. I have "Severe constant pain" in BOT and ear. It's debilitating. So, yes maybe a xanax would help my anxiety, but nothing has helped this excruciating pain.

Please, anyone with BOT, please help.

According to US News and World Report's Best Hospitals list, UAB is #1 in Alabama and a NCI designated cancer center. It sees the highest number of cancer patients in Alabama and scores high in the latest technologies for detecting and treating cancer.

What could someone with BOT cancer say that would put your mind at ease? Why can't you see your ENT? What was his explanation for your symptoms?

It would seem to me that the dysplasia was the cause of your issues. You state they only took a small biopsy from one spot. If they took your tonsils, they were biopsied as well, thus the dysplasia diagnosis. Typically, if OC is suspected, they would take several samples from various locations in the oral cavity. I know as I had several taken on two occasions. And I can tell you from experience that the surgery was both very painful for several weeks and took a long time to heal.

I don't know what else to say. I feel bad for you

Positive thoughts and prayers you find some peace.

"T"

T,
Thanks for your kind response. My lingual tonsils are swollen also. Where exactly was your cancer? Where you having pain?
Maybe, should ask for multiple biopsies. My ENT said it must be neuralgia.
Although neuralgia is not constant pain, but short episodes of pain.
My tongue prior to surgery was very swollen on the BOT and from what I read neuralgia doesn't cause swelling. Oh well, guess I will just play it by ear for a couple of weeks and go from there.


Prayers for you my friend.