I took my best friend to the dentist twice this month. Last time the dentist told me that he was almost 100% certain that my friend had SCC (I understand in his inner cheek, affecting severely his gums). My friend is HIV positive, so it could be something else said the HIV doctor yesterday. However, only the biopsy will tell. I have been researching on the Internet for the last 24 hours, but can't find anything on what percentage of biopsies tend to confirm oral cancer according to "visual inspections" from dentists? My friend doesn't have any problems swallowing, any neck issues (as checked by the HIV doctor), all is within his mouth. Usually HIV positive patients can get severe cases of gingivitis, but I have not been successful is this could be confused by oral cancer symptoms.
Happy Valentine's to everyone ... I am very blessed for founding this forum ! May everybody get lots of love today!

MEMO,
1."It's not cancer until the biopsy says so"
2. Search this forum for "statistics" and you will see that the %'s are more scary than accurate predictors as each individual case is just thaty - individual.
3. Relax because until you know for sure there what is going on is nothing other than praying that you can do now. Once you have an answer you will either be relieved of the need to search further or you will have a direction for your search.
4. If you have the time, sample the various posts on this forum and many questions you have will be answered before you can ask them.
5. Positive research you could do would be to get information on treatment facilities. Check the main website for Comprehensive Cancer Centers and links to other useful sites. Be aware that some facilities or doctors are better than others in specific areas. Also search for NJ and NY on this site as some of the posters can give you advice about specific doctors.
6. You can click on anyone's profile for information on how to contact them if you have specific questions.

Best wishes and my prayers for a good outcome,
Malka

Memo,

The answer to your question is right in your post. Only the biopsy will tell. The biopsy will come back either positive or negative for scc. It's as simple as that. I'm not quite sure what exactly you were looking for while searching the internet.

I hope your friend doesn't have cancer and please let us know the results.

Jerry

If you go here, you will see what a good exam is:
http://www.oralcancerfoundation.org/dental/how_do_you_know.html
A dentist I went to recently told me he did exams for oral cancer "every time he gets a new patient" but the exam he gave me was not the kind described in the above article. I don't believe all dentists are aware of the type of exam needed. Not all have the specialized equipment but whether they do or not, a biopsy is the only way to tell for sure. Perhaps in asking about percentages, you were hoping that there was more a percentage for it to be wrong (indicating no cancer)? It's difficult to give percentages because of the variables involved like how thorough the exam, whether it included specialized equipment (vizilite?) and the dentist's own experience. One who has had oral cancer I would think, would be more aware. I have a teeth cleaning appointment in March, and you can be sure i am printing out a copy of the above article to bring to my dentist. I may even drop it off ahead of time so he can read it and be ready for me!

You're opening a can of worms here! There is no consistency and you can thank the ADA (who need to get off their dead asses) for that. The insurance companies, no doubt, also play a role here. They have to be willing to reimburse for the procedure and since this is more medical than dental it falls into a crack.

It ranges the gamut from responsible dentists, like Jerry, who voluntarily ponied up a lot of his personal fortune for the latest detection equipment to hygenists doing a cursory "exam" (like mine did), missing a 6x3cm tumor that was so large it was displacing my uvula (if they do any exam at ALL). My dentist doen't even have brush biopsy equipment but does note every anomoly (now) and routinely refers me to my H&N surgeon (which sees me regularly anyway). Some of these so called screening exams are so poor you might be better off with a Ouija board.

Until I am convinced that until there is an early detection STANDARD exam (like the Mammography Quality Assurance Act) I recommend seeing an ENT or H&N surgeon WITH H&N cancer experience. If you are a tobacco user or have other risk factors for oral cancer, pay out of your pocket for the ENT. It might be the smartest 75 bucks you ever spent. Get regular exams.

The excisional or "snip" biopsy is the gold standard. FNA biopsies can miss sometimes. I haven't seen data on the false positive rate for brush biopsies so if someone has more info please add it here.

It might take malpractice lawsuits to get their attention.

In all fairness however, many dentists may only see a few H&N patients in the entire course of their career.

Well i am into the third and final stage of legal proceedings against robins dentist.the General Dental Council have charged him with failing to daignose and refer Robs cancer in a timely manner.I am charging him with being a lying SOB who will say anything to save his own skin.The case has been referred to a team of medical malpractice lawyers who will now review th evidence and advise the code of practice committe on the likely punishment.

My gut tells me he will get away with this,and there is nothing i can do about it,but we will see what happens at the court case which i will be asked to give evidence at.

Gary - please take a look at www.oral-cancer.info for some blogs about the brush test.

OCF is in the final stages of issuing a standard of care for general dentists on oral cancer screening and early detection. It is being written by thee oral medicine specialists. I would welcome Dr. Wilke as a reviewer and you as a patient advocate to help with the final draft. I am proposing a face to face meeting sometime next month where everyone can get together in a common location and cocoon in a hotel to hammer out the final verbiage.

I would like to say that the link posted by Anne-Marie above, gives an excellent description of how an oral cancer exam should be done. It is an excellent idea to get this information to your dentist and if he/she still doesn't perform an exam that meets with this description in that article, it's time to find another dentist.

Gary, although the cost of a VELscope light is $5,000, it is a small price to pay for adding an extra level of confidence to doing a thorough clinical exam. And the fact that it could help save someone's life, makes it even more important. Perhaps some may consider it a fortune, but as I have told many of my colleagues, I didn't purchase it to make money, but to provide a potential life saving service. However, that being said, even charging a minimal amount to cover the cost of the light and disposable supplies, I have more than recouped my investment. Whether our patients choose to have a VELscope exam or not once a year (about 98% do), they still have a clinical and palpation exam done every 6 months and there is no charge for that exam.

Brian's link to the article on HPV is also an excellent article that gives a clear description of what is going on in the research world about HPV and it's connection to oral cancer. I printed it out and will be giving it to the producer from my local CBS affiliate that is coming to my office next Tuesday to do a piece on oral cancer detection and the link between OC and the HPV virus. It will provide her with some excellent background information.

For those interested in a visual description of what they should be having done in the dental office, I would recommend this link http://www.sextetscreening.org/index3.php By the way, this site was started by two OCF members and has some excellent information for dentists, hygienists and patients.

Brian, I would be happy to help out in the "standard of care" statement and although it may be dificult for me to attend a meeting, I would welcome the opportunity to participate by phone or email, if that is possible. Please let me know.

Jerry

Someone said something about biopsy being the gold standard...well, it may not be because it depends on who is reading it.
I had a sore bump on my gum that developed a white patch.
The dfferential diagnosis from the first (snip)biopsy was fungus or buccal squamous cell carcinoma. Recommended a larger biopsy.
Second biopsy - diagnosis was squamous cell carcinoma.
Saw head/neck surgeon who said, "this doesn't make sense." I had no risk factors, the carcinoma said "buccal," even though it was on my gingiva, it just popped up, & each dr. who looked at this said he hadn't seen anything like that before.
Had CT scan - it was negative (normal).
Another set of drs. looked at biopsy & diagnosed it as severe dysplasia, with a strong suspicion of carcinoma.
Everyone who looked at biopsy said - remove the lesion. So, I'm having a right marginal mandibulectomy (removing 4 teeth) June 17 because they treat it as if it is cancer. I would not want to jeopardize my health, but this is confusing & disturbing because it's like they're saying - you don't have cancer, but you might.
Aside from that, I have no idea what comes after this surgery. I realize it's minor, compared to what many of you have had, but can someone tell me what I have to look forawrd to?
Thanks,
Marlene

Marlene.....I had a partial maxillectomy, not a mandibulectomy, but that's now why I am writing. What you are facing...and what I endured..and others in differing degrees...are all serious, and none are minor. I have at times felt a little guilty because my loss is perhaps not as great as someone else's. Please don't allow yourself to think this way. All loss is serious, and we all share many of the same problems, and emotions. I can't imagine having such confusion and still having to proceed, so that's a problem that you have that I don't.

Is there another place where you could get one more opinion?? It is likely something that can't remain in your mouth, because if it isn't cancer now, it will likely be cancer before long, from what you have said, but still I know that you would feel better if you could know for certain.

I suppose that they will know more after your surgery.

But in the meantime, don't belittle your procedure or your experience. It's a difficult experience, and you will need the support of your family and your friends, along with your NEW friends.....US!!

XO--Colleen