Good morning,
I have several questions, and would sure love the any input that would be helpful.

Please note, I am just looking for help and so concerned. You don't have to respond, but I would be more than grateful.

As you know, I have discovered a large mass in my clavicle area. I have also for six months been experiencing tongue pain (burning) throat pain and a earache and toothache that has been unilateral up until the last month or so. Now, it is on both sides. I have a MRI scheduled for two weeks which I think is way to long and have put a call in to my doctor. In your experience is a MRI better at detecting BOT tongue cancer and cancer in the lymph nodes than a CT scan?

I have heard so many stories of CT scans that didn't show any cancer. Also, I know PET scans are not always accurate and can show imflammation and so forth, but if there was cancer there would it light up?

Also, please anyone who suffered with ear pain, please describe your pain and if it was on the same side as the tumor? I know most BOT tumors aren't always symptomatic, but I also know they can cause extreme pain also.

Are BOT tumors hard to the touch? Even if it couldn't be seen by flex scope would a capable doctor know by feeling it?

Thank you for all help. You're all in my thoughts and prayers!

Hi there... a scan of any kind doesn't show up microscopic cancer it has to be a certain size to be picked up. All scans show up inflammation, infection, and healing areas, as well as cancer. It takes a trained professional to figure out what is what on a scan, but even the best can't know for sure without a biopsy to confirm. As far as I know an MRI is more comprehensive that a CT. and a PET is as well. But PET's do have a history of false positives because they pick up high sugar counts in your body. Now cancer is a sugar hog but there tends to be a high amount of carb activity when there is healing or inflammation, etc... taking place. Where I live some drs. still don't trust PETs they generally go for the CT or MRI, but I know in the states they are widely used and popular.

I'm sure someone else will be along to offer more info.

best of luck.

Kris had ear pain for 6 months. It was only in his R) ear and the tumour was on the R) BOT. Kris's ear pain was not constant.
He had an MRI after the ENT scoped him but could find nothing of concern in his oropharynx.
The MRI showed the tumour on his BOT. The ENT was then able to scope and locate the Ulcer on the BOT. He then proceeded to Biopsy which showed SCC HPV +ve.
Hope this helps,
Tammy

Tammy,
Was Kris BOT tumor not visible to the ENT with the flex scope? Surely, there was some indication of a tumor. Color change, size, something? This is so frustrating and hopefully my MRI will give me some answers. I can't believe how long it takes people to find this out. Very sad.

It is sad that this takes time. The ENT was able to DX with his fingers that something was up on BOT. He decided to do the FNB to confirm. This after ultrasound by Dr 1 and CT by Dr 2. So FNB was final confirmation leading to biopsy of BOT for HPV + DX. This was a six week process for me and I felt all had a sense of urgency. So frustration with time made me grateful for right diagnosis. Patience is a must.

Portland, that's correct. The ENT found no abnormality in the oropharynx, though it was a difficult scope as Kris did not tolerate the scope well.
Yes, his tongue was a pale pasty cream colour, not nice and pink as is normal. His tongue also deviated to the right, he was unable to stick it straight out. This was because the enlarged lymph node was pressing on the hypoglossal nerve causing a palsy or paralysis of the muscles on the right side of his tongue. By this stage also his speech was slurred due to the tongue palsy. Kris had been visiting his Dr for 6 months with severe ear pain by this stage. I insisted on a MRI at this stage as I knew something was seriously wrong. But, I never imagined a tumour in his oropharynx.
Hope you get answers soon and that you too are not facing this.
Tammy

Just answering the question. A tumor can be in the BOT, even Tonsil, that may not be seen, felt or have pain. That area is highly lymphatic, BOT has deep musculature, and relatively is painless area, especially with HPV being its transformation to cancer is different than tobacco caused. My lymph nodes tested positive SCC, CT, PET showed tumor in Tonsil, BOT, Valleculla, but was not seen on three flex scopes by two different ENT's, and oropharynx looked fine, but they knew I had cancer from FNAB. A direct biopsy under anesthesia confirmed cancer in the tonsil. Good luck.

Hello James,
What were your symptoms that made you concerned that there was something going on? You're in my thoughts also.

Portland, you can easily check the symptoms James (or any other member) had by clicking on their name and on the drop down menu click on view posts. Go to the first post Jame (or any other member) wrote and you will find the answer to your question. Im mentioning this as I noticed you have asked this to quite a few members and its easy to get this info by reading their posts.

I understand you are looking for similarities with other cases and yours but you may not find it as every person is slightly different and can have different symptoms or even none at all. I really hope you can find the answer to whats going on soon. You have an incredible amount of patience!

Paul,
I see you have had a lot going on lately. Please know that I'm thinking of you and saying prayers for you as well. What was your PET SUV when you had it done if you don't mind me asking. I appreciate any advice you can give. Thank you

Varied from 1.8, 3.0, 4.3, 8.0 off the top of my head being cancerous. Anything above 2.5 is suspicious, but doctors rule out other factors to attribute to this, and is not relied on solely, a biopsy usually is.

[quote=PaulB] a biopsy usually is. [/quote]

Exactly!

"T"

"T"
You seem to have a problem with my comments. Please, I'm very concerned and really don't need any sarcasm and negativity in any way. You don't know the extent of my biopsies and things could be missed as I have read my so many people. Please, I'm scared and don't need this kind of response from anyone. If you don't have anything good to say-please keep it to yourself.

You don't know what's wrong with me....it could be cancer as it has all the symptoms. Positive thoughts your way and I would like the same.

Just agreeing with Paul is all.

Good Luck!

"T"

There are some oral conditions that periodically come and go, which can cause pain, other issues. The names don't come to mind off hand, but hope to find, if I can.

Paul,
That would be great. Thank you

My ENT-HNC surgeon mentioned to me that while doing his fellowhship at MSKCC, only 12 fellowships are granted as this prestigious institution, the head of the place stated SUV stands for Simply Useless Value.

He clarified that SUV does have meaning but it is just one of MANY indicators that are used to determine neoplastic tissue.

I just mention this so maybe you can climb down the SUV tree.

Just wondering if you pursue other possible medical reasons for your symptoms besides cancer. The reason I ask and suggest you do look elsewhere is you have spent a huge about of time and energy on this one thing. It seems you might get some good ideas that it could be something entirely different.

Portland,

You are being told the same thing by everyone but you simply refuse to accept it. You are your best advocate but if doctors won't give you chemo and radiation, there isn't a lot of options available.

Go to a pain management specialist and have them kill the pain first. That will help you identify where it is at least and you can go from there.

I had BOT cancer primary and had no symptoms. I had and have SUV values 2-5 but no sign of recurrent disease.

I knew someone once that insisted he had ALS. He went to many neurologists who insisted he didn't have ALS. He had a blood circulation problem and before they found it he died of a heart attack. Many things in these complicated bodies can go wrong and cause a seemingly infinite list of possible causes. By going to whatever doctors you are recommended to go to, you will find your answer sooner. Arguing with everyone and insisting everyone is wrong only gets you to an oral cancer forum full of survivors and caregivers. There will most likely be no life-saving interventions here like there are minute-by-minute at medical facilities.

Don't give up but don't beat a dead horse. There are about 9,000 members here. Most are survivors and caregivers. Please don't ask them all.

Thank you.