In my book you are willing to fight or you are not. Are we suggesting here that fighting for a 50% chance is worth it, and for a 30% is not? In my book I'll take getting burned, emotionally beat up, fatigued, and poisoned for the chance of life. I was a stage 4 patient, essentially circling the drain. I'm here 6 years from diagnosis in spite of the statistics. Everything on that list of side effects of treatment is transient. While life itself is transient as well, I choose not to go gently into the night

Hi all,

Someone sent me a good quote re this thread:

"Statistics can be tortured to confess to just about anything."

Cheers!

Tizz

First of all, tomorrow is promised to no one. You could be hit by a car and die instantly, this afternoon! Moreover, if the odds are 50% survival, that means half live. If it is 30% that means 1 in 3 live. You could be that 1 and THAT is why it is worth the fight. People DO survive. It is when it is zero that you might want to weight quality of life issues, but when people do survive, I think you should go for it - you could be that 1 in 3 because Somebody is going to survive and it could be you. The statistics vary depending on the population included, it may include many seniors, people in their 70s, who may not live very long without the cancer. Heavy smokers/drinkers are more likely to be on the losing side. People who don't undergo treatment are almost certainly going to die. I say go for the probability of survivng, not the certainty of dying! People do survive and thrive. The key thing to remember is that if 1 in 3 live, this means people DO survive! Be that one! - Candace

Another side of the statistics coin -- why are they so poor? One reason is -- late diagnosis. Too many people like my husband are diagnosed in advanced stages III and IV, even though they go regularly to a doctor or dentist. Read what ADA says (on the OCF web site) about dentists' responsibilities. Yet my husband, who goes 4x a year to his (supposedly top) dentist for cleaning never had his enlarged tonsil or the growth at back of tongue noticed (when I looked, obviously assymetrical amounts of tissue in both sites).

One thing to improve statistics that we, as patients or caregivers of patients, can do is improve the rate of oral cancer screening and educate our friends and relatives about getting screened, especially if they smoke.

I think it is pretty bad that there is still no routine screening for SCC cells in at least those parts of the mouth reachable by a "brush" (like that used for pap tests) -- while women have been screened for over 35 years for cervical SCC. Barry was tested at Hopkins for HPV and they also took tissue, using the same type of probe as is used for pap tests, ran it over his tonsils, back of tongue, soft palate and under tongue and smeared the scrapings on a slide, again same way as for a pap test. Then off to the pathologist.

Maybe in the future there will be some better screening method than just a casual glance by a dentist or doctor who is not really paying attention...

Gail

Gail,

There is a product called ViziLite which is recommended to be done once a year as a screening for cells that have changed and are not visible to the naked eye. You can read about it on the web site by checking under "Products" then "products for dentists". You can also read about it at this site http://www.zila.com.

We have recently added this product to our oral cancer screening protocol in our office and will be recommending this procedure to our patients on a regular basis (once per year).

I have to admit that although this product has been available for quite some time, it took my cancer to get us to start using it in our office. We also do the brush biosies also discussed in the same area of this site.

With or without the use of ViziLite, it appears that your husband's lesions should have been detected during a routine oral cancer screening. I am truly sorry to hear that it was missed.

I hope that Barry is doing well. I have been away since July 17th which is around the time that you joined this forum and I am not familiar with his current status.

Jerry

The Visilite has been on our web site in the products section since before it was actually available in the marketplace. This technology while helpful is far from foolproof and has distinct limitations. I know, I was a consultant to Zila when they acquired the product from the original developer. The secret is really in the vinegar (acetic acid) but that is a whole 'nuther story. It is very unspecific, but if it gets people to take the time to look properly it a good thing in my book. The fact that dentists and their staff miss this too frequently of do even engage in oral cancer exams is a disgrace. I just isn't that hard. In the dental section of this web site there are numerous articles in the additional information section written by the NIDCR science staff which attest to this lack of involvement. Dr. Wilck is wise to have adopted an annual screening in his office. I spend part of my time as an expert witness, usually representing people who are suing dentists, and ENT's for failure to diagnose, or failure to meet standards of care. They universally lose, or are settled out of court. My greatest hope is that now that we have a convert in our midst that he will be an articulate and informed disciple of the early detection saves lives OCF mantra to his colleagues. Hearing it from one of their own carries so much more weight than my words.... Already he has had a wonderful story published in the news media about his disease and transformation. I think it's time to make him a TV personality......

I went to multiple Drs, and 2 different local dentists AFTER I had a LARGE, SWOLLEN, HARD, NON-MOVABLE node on my right neck.

Not one of them even examined my tonsils, much less felt it to see if it was a likely primary.

Maybe wouldn't have made any difference in my case, maybe not...

I might have been Stage III at the time, who knows.

Bear in mind that the tonsils are hard to see - they hide along the side of the tongue. Dentists don't typically have the specialized mirrors that ENT's use and it might be much more difficult for them to visualize the tonsils and larnyx area. Although I am all for any kind of screening, I am not convinced that dentists are going to catch everything. Whenever they are screening me, they invariably check all of the highly visible areas that I could see myself - tongue, under the tongue, gums, inner cheeks, etc. I wouldn't rely on it as 100% screening. Some screening is better than no screening.

In my case the tumor got SO large that it was readily visible and they STILL couldn't figure it out (this large, 6x3cm, tan rubbery blob). They said that from literally thousands of patients they rarely have seen any oral cancer - maybe 2 or 3 at best. They were performing regular cancer screening long before I got my oral cancer and are much more careful about it now (because of me). My dentist is in an affluent area and maybe that's a factor. A big city dentist may see more oral cancer cases.

My gp missed it as well but at least he eventually gave me a referal to an ENT after 2 rounds of antibiotics did nothing.

My opinion now is that if you have engaged in risky behaviors such as using tobacco products, excessive drinking or have had viruses such as EBV or HPV than you should be examined annually by an ENT or H&N surgeon as a component of a regular annual physical exam.

Rod had a few teeth pulled a few months prior to his diagnosis. Even as close as 2 months before.His ENT said his tumor on his tonsil was so large (and the lump protruding from his neck) he cannot believe a dentist missed it. The truth is, some dentist are not doing screening for oral cancer,they are doing dental work. Thanks to hearing about Rod, the dentist I work for is now doing screenings and has just sent a lady to her ENT for something on her tonsil he didn't feel should be there. She said it's been there for months & her medical doctor checked it and gave her antibiotics????? Who knows what the answer is but I agree with Gary on the risky behavior aspect. Only trouble is like Rod at 37 years old, oral cancer isn't really on your mind.Hopefully more & more oral cancers will be found at an early stage.

Brian, I am hardly the TV type.

I am more confident now that my office has added the ViziLite exam to the cancer screening protocol that we have always followed. Although it will not help to pick up everything, it will show areas which are not visible to the naked eye and that need further examination and followup. My entire staff, from the receptionists to the chairside assistants, are very motivated in promoting early detection.

Gary, you are correct that a dentist will not be able to fully visualize the tonsils as well as the back of the mouth and throat. An ENT has the equipment to do that. Since my situation was different than most, as I went directly to the head and neck surgeon, I did not have an ENT involved in my treatment. I recently had a gastroenterologist do an endoscopy for another problem and he saw nothing. However, he said that he does not examine the tonsils and behind. Therefore, I am seeing an ENT at the end of this month. I have had 2 followup exams with the surgeon and he checks the surgical site, remaining lymph nodes, but not much else. I am not confident having him as the only one (besides my partners) being responsible for checking me.

As an aside, I am hoping to visit the NYU dental school with Eva Grayzel in the fall. She is hoping that my being there will help make a bigger impact on the dental students. Eva has been doing these speaking engagements for quite a while, but it will be new to me.

As far as the article that Brian mentioned is concerned, my office administrator was instrumental in getting the reporter out. We thought it was a good message to bring to the public. The article was published on July 17th, the morning I was leaving for Ireland for 2 weeks and I am first going back to work today. My undersatnding is that 10 people (not patients) called and came in for ViziLite exams. People do read the paper.

For those that are intertested, I just found a link to the article: http://www.phillyburbs.com/pb-dyn/news/111-07172005-515499.html.

You will, however, have to manage without the photos that were in the paper. You're not missing much.

At some time in the future, Brian hopes to get the article on the web site.

Jerry