Not arguing about the qualifications of my oral surgeon, his comment to me was prior to starting his local practice, his speciality training and practice was in head and neck cancer for several years. I don't know what that's worth. I had another MRI today with Fat suppression which is supposed to be the best for detecting oral cancer out of CT, PET and standard MRI based on my extensive research.....since I can not focus enough to work any more. Results tomorrow morning. I am blessed to have some experience and connections in the local medical community and have no tolerance for waiting.

On a side note, in spending a lot of time on this site, I would urge everyone to be assertive when scheduling tests. I called three different imaging centers and my first question was how quickly I could get in and how quickly I could get the results. Their attitude was totally different when they realized that I was not just going to use whatever center my doc wrote the orders for. I got in within 24 hours and was assured of the results within 24 hours. Having owned a medical facility, I can assure you that despite this being life or death to you and me, medicine is a business. I am not demeaning the medical community, but they are conditioned to give worst case scenario expectations on timeframes and then seem to adjust their performance accordingly. When you give them an opportunity to compete and excel, they will usually perform beyond expectations. It is simple human nature.

As I mentioned in my original note, I have repeatedly seen two different oral surgeons and two different ENT's over the past three or fours years, one of each in the last month.

If the MRI is clear, I have to make a decision to dive into a biopsy without any real target. Not sure how that will happen, but I can not function any more.

A couple more thoughts Harry;

many of our cancers were painless. This seems more often the case when in early stages.

Second, have you considered a neuralgia issue that might be causing this pain? http://en.wikipedia.org/wiki/Neuralgia paragraph 4 mentions glossopharyngeal neuralgia. I am no doctor so I am really not able to offer any more detail.

I can imagine that you want resolution to this but poking holes in your oral cavity willy nilly will cause additional pain. likely will come up negetive (because there is nothing to see). I really doubt cancer would go unnoticed by that many Docs and scans either. I am sorry that we have not been much more help to you so far.

Thank you for the neuralgia info. Certainly sounds like a possibility.

The fact that I have frequent pain and irritation, and as you say most confirmed cases had no prior pain, certainly offers some comfort that it is not ominous.

One of the most intriguing, for lack of a better word this late at night, aspects of this affliction is the inability to easily identify and/or rule out or confirm a malignancy in situations like mine. Obviously, having one's entire tongue cut out and biopsied is not an option.

My gratitude for this community is substantial. Your participation after this long serves as a source of comfort and I imagine a real inspiration to those fighting the fight.

Harry, in my case, the swollen part of my tongue was clearly down front, so my ENT did a punch biopsy from underneath into what he felt was the harder tissue -- This revealed the SCC with no need for any scan; the subsequent scans being used to determine the extent and base for a surgical plan.

I had no pain from the tumor itself, but the entire area was swelling and became sensitive enough to the point where I had pretty much gone back to a liquid diet because chewing and swallowing were becoming a chore.

My next outbreak was on BOT and was sensitive to the touch, plus was giving me ear aches -- It was clearly visible but even going back and looking at a CT scan from several weeks before, it pretty much didn't show (My surgeon, his residents and the CT radiology doc were all looking with benefit of hindsight path report of SCC and still couldn't see it -- However, it showed clearly on an MRI, on which my latest free flap was based).

BTW, the UWMC imagery dept is using a GE machine that was getting twice the number of scans in one take compared to the Siemens used at my former scan center.

Harry, I was contacted privately by another member that reminded me in their case pain was the first symptom. Here is my reply to that experience:

I know that there are almost unlimited ways that our cancers present themselves.

Some do have pain early too. Quite a few though, don't. My thoughts to him (Harry) rely heavily on A. the time he has been having this problem, and B. the fact that he is being seen by several
Docs and had a significant battery of scans. Over the amount of time, if cancer were the problem it probably would have grown to a point of being dectectable.

I would not tell him (Harry) that this couldn't be cancer either. One thing I've learned by being on the OCF forum is that this SCC can be sneaky.

I am adding this reply to clarify my thoughts. Not to eliminate cancer as a possibility but to introduce other ideas to help. Obviuosly, you are on a cancer forum and going to hear a lot about cancer. I think it wise to remember (out loud) that there are other thing that can cause pain. That does not mean I claim to know that this is or is not cancer.

Harry

My Base of Tongue cancer tumor was estimated to have grown slowly for about 7 years. Zero symptoms except two years of misdiagnosed ear pain. In all the subsequent MRIs, PET scans and CT imaging studies, nothing ever showed up on the tongue's surface just the BOT tumor and left neck lymph nodes. I have no medical expertise just experience, but this time the tip off to my recurrence was a "swollen tongue" but just on the left side. Luckily, I did develop a noticeable lump under the skin so I could and did get a biopsy yesterday. One thing I learned from this forum is that sometimes the cancer is very very slow developing and not detectable readily on imaging studies. I hope you do not have cancer, but if you do, it sounds to me like you will be catching it earlier enough to be "cured". Stage IV, not so much. Best wishes and good luck

Good luck with your biopsy results Charm.

Yesterday's MRI results came back negative this afternoon. I guess I should take it at face value and be thankful, but the apparent rate of missed diagnoses using imaging makes it all a little hollow. Tongue symptoms come and go throughout the day. Sense of fullness in my neck on the same side comes and goes as well. I guess the good news is that with all these MRI's, they don't subject you to radiation like PET/CT.

The thought of just continuing to see an oral surgeon and an ENT once a month for a complete exam, Velscope and periodic MRI's seems foolish, not to mention expensive.

I am going to try on Monday to get an appointment at MD Anderson and see if they have any different thoughts or approaches. The symptoms are all consuming and when they started three or four years ago, I would sometimes go for days and weeks with no symptoms at all, now it is virtually every day.

I know in my case that what one imagery system missed (CT with no PET) another caught (MRI), so I would personally feel OK if I had a battery of them.

However, you have symptoms of something that's affecting the quality of your life, so there's some personal urgency to get it diagnosed and treated so you can get on with the rest of it.

Don't overlook how successful it can be just to have an experienced set of hands feeling around there -- My most recent tumor was quite both visible and palpable once we started looking for it without relying on the CT.

Off to the CCC next week....

Charm - sorry to hear about the latest results. Your attitude is certainly inspiring.

I'm sorry, but I have to ask, did the new tumor show up on the MRI?

I am off to MD Anderson next week and am going to handcuff myself to the chair until I get an answer.