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