Question,
I understand the anatomy completely of the base of the tongue. I fortunately one
Who can stick my finger all the way down to the end. My question is to all bot
Friends. Was your tumor on the actual tongue or lymphatic tissue below it? Did all of your tumor show up on ct or mri?

I am not sure you could really touch the base of your tongue. I saw my tumor with a dentist's mirror and it was pretty far down my throat. Are you sure you aren't thinking the floor of your mouth as in under the tongue? My actual tumor was closer to being on the epiglottis.

Yes, that is where I'm talking about. I pointed down my throat and
The ent put scope up my nose and said the lymphatic tissue below base of tongue looked a little irregular. Just a little more prominent than other side. So, yours actually looked like a tumor? What where your symptoms and did it show up on CT or MRI?

Hmm. I do not think you can touch the base of your tongue. It is a long way down, deep in the throat. Your fingers would have to be at least 10 inches long.
Kris's tumour was on the right side of the BOT and had metastasised to the right tonsil and 1 lymph node. He was completely unaware of it. Only when he developed slurred speech as a result of the node pressing on his hypoglossal nerve did we know anything was amiss.
Tammy

Did ct scan show the tumor?

I was diagnosed BOT and there was no indication of any pain or discomfort so I never bothered looking down my throat, Lo and behold look at the nasty beast right there. It was necrotic and ulcerated and was located BOT so it is not that far down there.

THE BEAST

Kris's tumour certainly did show on CT scan. As did the metastasis on the R) tonsil and lymph node.
He also had the typical ear pain that often goes with a tumour in this location.
Tammy

John's tumour did not show on the first CT scan. It took a quadroscopy and actual biopsy. It was "inconclusive" for a long time.

[quote=portland72]Yes, that is where I'm talking about. I pointed down my throat and
The ent put scope up my nose and said the lymphatic tissue below base of tongue looked a little irregular. Just a little more prominent than other side. So, yours actually looked like a tumor? What where your symptoms and did it show up on CT or MRI? [/quote]

Mine probably looked more like an open sore. Check out the pictures on the main website. I had a scratchy throat for 2 or 3 winters with a slight but persistent cough. I also had developed obstructive sleep apnea which went away after treatment. Other than an annoying lump in my neck, no other symptoms.

The base of tongue is the I/3 posterior of the tongue where lingual tonsils are atop, so it's possible, in some, to see, feel, it, if the mouth can be opened wide, tongue can be extended, have no gag reflects to tolerate. That's one area the doctor checks on a palpable exam. Most HPVSCC have no visual indication for cancer, as opposed to tobacco related cancer with ulcerizatipn, etc. I had three flex scopes, and cancer was not seen, but was on the CT, and PET, which was confirmed by a direct biopsy. The nodes were checked by FNAB before that, and confirmed metastatic cancer cells,, , so they knew it was most likely coming from the oropharynx.

[quote=portland72]Did ct scan show the tumor? [/quote]

My husband had no symptoms other than the enlarged lymph node in his neck. His tumor did show up on the CT Scan.

Tamvock,
Did you have reconstruction after glossectomy? If so, how is that going?

Kevin's tumor was only found, as far as seeing or physically touching, in surgery to remove it. It showed up on the PET, so the ENT knew where to look. Even with Kevin asleep he still couldn't see it. When he felt it, it was concave in nature. He had to cut by feel. Did not show up on the CT.

My tumor was on the left side of the back of my tongue..I didn't see it but it felt like an open sore.

Hi Portland,
Kris did have reconstruction. They took a flap from his abdomen to reconstruct the tongue . However this just fills the space where the tongue sits in his mouth. It is all sutured down and has no movement or taste.
However he is able to swallow all his nutrition, though it is just liquid. He also seems to have a reasonable amount of taste. There are taste buds throughout the mouth and nose.
Remember that Kris had a complete total glossectomy so he has no part of his original tongue left. This is not a common procedure. Most BOT tumours are cured by chemo/radiation treatment.
Tammy

How long was it inconclusive? Did they find or see it during the scope?
Where did he think it was? Could he point to the pain?

Tamvonk,
How large was Kris initial tumor? I'm glad he seems to be doing better.

Kris had a large T4 tumour. He was initially treated with chemo and radiation. His first post treatment PET was clear but he had a local recurrence 10 months after finishing treatment . The huge surgery he then had was of a curative intent. Remember, very very few follow this disease course.
Kris is doing very well, surviving very well and living his life.
Tammy

Will chemoradiation not cure tongue cancer??

Cancer is not always cured by surgery, radiation, chemoradiation, other factors are involved. Was your symptom diagnosed as cancer by a biopsy?

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.

If the ENT says neuralgia perhaps they could get you referred to a neurologist. Neuralgia is a catch all to mean nerve pain. It can take on many forms and constant stabbing pain like a toothache would be neuralgia. Any type of constant pain in a given area could trigger an inflammatory response that could include swelling. Many drugs could be tried although neuralgia is hard to treat per se.

Just curious but have you seen a neurologist? From my experience, nerve pain is the worst of all pain. Things like ion channelopathy could cause swelling and/or intense pain. If one doc says nerve pain, ask for a referral.

I have neuropathy in my toes from chemo. No pain now but I really can't feel them anymore. However, I can attest to the severity of nerve pain as I developed it from the top of my head to my torso and arms about a month ago. It was difficult to wear clothing. My team attributed it to neuropathy caused by the chemo. I was prescribed Lyrica and Tramadol which cleared it up within 5 days. It came back two weeks later from my waist down. Again, a round of Lyrica took care of it.

Yep... treatment... the gift that keeps on giving!

"T"

I have severe neuropathy for almost 4 years now from chemo, 24/7, in the hands, legs, causing muscle paralysis. It got somewhat better, but still can't feel or move my feet or move my toes. Nothing has helped. Most clears up in time, a few months, but in some cases can last as long as 17 years, and depends on the type of chemo, the amount, infusion rate, duration, and any underlying medical issues that can contribute to neuropathy.