oral cancer foundation

A cancer on the rise, and the vaccine too late for Gen X

Source: www.cnn.com
Author: Martha Shade

(CNN)The vaccine given to prevent cervical cancer in women could end up saving men’s lives, too.

Evidence is mounting that the HPV vaccine is also effective in preventing other HPV-related cancers, including those of the head and neck. Although most people who get HPV do not develop cancer, rates of HPV-related head and neck cancers are dramatically rising for men aged 40 to 50, according to Dr. Maura L. Gillison, the Jeg Coughlin Chair of Cancer Research at the Ohio State University Comprehensive Cancer Center.

When Gillison recently gave a presentation showing the increasing rate of HPV-related head and neck cancer among men, her audience was shocked. “I’ve never shown a slide where the audience gasps,” she said.

Related: Yes, oral sex can lead to cancer

“The risk of getting this cancer is strongly related to when you were born. If you are currently a 40- to 45-year-old man, your risk of getting this cancer is dramatically higher than a 40- to 45-year-old man three or four decades ago,” Gillison said.

Today’s 40- to 50-year-old men have had more sexual partners and have engaged in more oral sex than previous generations, according to experts, significantly raising their risk of an HPV-related head and neck cancer.

Actor Michael Douglas made headlines in 2013 when he announced he was battling an HPV-related cancer and that he got it from performing oral sex. Douglas was 68 when he was diagnosed, but many of the men being diagnosed with these HPV-related cancers are much younger.

What’s a Gen X’er to do?

HPV is usually acquired when young. It can lay dormant, and most oropharyngeal cancer (a type of head and neck cancer) is diagnosed decades later, beginning around age 40 to 50. And the more partners you have, the greater your risk.

HPV vaccines weren’t recommended and approved in the United States until 2006. And the vaccine was not even recommended for boys until 2011.

So what’s an aging Gen X’er to do?

“You’re starting to get colonoscopies; you’re starting to get checked for prostate cancer. This is one more thing to add to that list that you really have to watch for,” said Brian Hill, founder of the Oral Cancer Foundation.

Warning signs of HPV-related head and neck cancer

• Persistent lump on neck

• Persistent earache on one side

• Swelling or lump in the mouth

• Chronic sore throat

• Difficult or painful swallowing

• Change in voice

Source: Oral Cancer Foundation, Dr. Carole Fakhry

Symptoms of HPV-related head and neck cancer include a change in voice, a sore throat that doesn’t go away, an earache on one side and difficult or painful swallowing.

Hill’s story is typical: His doctors initially assumed he had an enlarged lymph node due to an infection. Two doctors gave him antibiotics before he was diagnosed with late-stage oropharyngeal cancer. His experience led him to form the Oral Cancer Foundation.

Finding the disease at an early stage is lifesaving. When it’s diagnosed early, these HPV-related cancers are survivable, according to Dr. Carole Fakhry of the Johns Hopkins Head & Neck Cancer Center. “If you have a lump in your neck, make sure to get checked.

“A very common story is: ‘I was shaving and I noticed this lump in my neck,” she said. “And he goes through two or three rounds of antibiotics and then someone finally thinks about cancer.”

‘Dental hygienists are becoming the best screeners’

Traditionally, cancers of the head and neck were often linked to alcohol or smoking, and these non-HPV cancers tend to be located at the front of the mouth and the voice box. Incidence of these cancers are dropping.

“The truth of the matter is that smoking-related cancers are declining,” Fakhry said. “On the other hand, cancers related to HPV are increasing.”

HPV-related cancers usually originate in the back of the mouth. “Most of these cancers are tonsils and back-of-tongue cancers,” she said. “Tonsils are basically these crypts, and tumors grow deep within these crypts, so these tumors can be hard to find.”

Since tumors are often hidden, dentists and dental hygienists are becoming the first line of attack. Men may also be more likely to visit a dentist regularly than a doctor, according to Hill.

“Dental hygienists are becoming the best screeners for this. They’re becoming the point at the end of the spear when it comes to screening and finding abnormalities,” he said.

Dentists and hygienists are encouraged to look for telltale signs of HPV-related cancer: asymmetrical or swollen tonsils, or a lesion in the back of the throat. But these cancers are notoriously tough to spot and tend to be diagnosed after patients develop a lump in the neck.

So what can you do?

“Make sure you get your kids vaccinated (for HPV),” Fakhry said.

Dr. Dan Beachler, lead author of a new study that found further evidence the HPV vaccine protects against multiple types of HPV-related cancers, agrees: “We still don’t know that much about oral HPV. Primary prevention through vaccination might have the most potential.”

Besides the cervix and the head and neck, some strains of HPV can also lead to cancer of the anus, penis and vulva.

A preventive HPV vaccine is most effective when given to children before they become exposed to HPV. The three dose series is recommended at age 11 or 12.

Initially recommended just for girls, the Centers for Disease Control and Prevention now recommends that boys be vaccinated, too. In addition, vaccination is recommended through the age of 26 in women and through age 21 in men who were not vaccinated previously.

“Young people do not avoid oral sex. That being a given, the best thing we can do is increase the vaccination rate. The second thing we can do is be highly aware of signs and symptoms,” Hill said.

And don’t panic. Although HPV-related cancers are on the rise, they’re still uncommon.

“Even though the rates are dramatically increasing, it’s still a relatively rare cancer. We don’t want to create a panic. We just want to raise awareness,” Gillison said.

Patient Support in Oral Cancer: From Sydney to New York to London, survivors and patients interact through an important portal to get through difficult times

Source: www.prnewswire.com
Author: Press Release

NEWPORT BEACH, Calif., Sept. 28, 2015 — The word “cancer” will incite fear in anyone. When that word comes at the end of a sentence that began with your name, the impact can be life changing. “I had a great job, a beautiful house and a happy family life,” recalls oral cancer survivor and Oral Cancer Foundation (OCF) Director of Patient Support Services, Christine Brader. “All that changed once I got sick.” Those affected by oral cancer, like Christine, are saddled not only with the physical challenges of treating and surviving the disease, but they must also live with the emotional uncertainty and anxiety that accompanies a diagnosis. OCF’s Patient Support Forum (oralcancersupport.org) was created specifically to provide patients with the information, guidance, and support they need to face a cancer diagnosis. Now in its 15th year, it has helped tens of thousands navigate a difficult path.

It was nearly 16 years ago that oral cancer survivor and OCF founder Brian Hill began his search for answers. “When I was first diagnosed,” Hill recalls, “I was scrambling for the right information. Once inside the treatment world I was faced with decisions about which treatment path was right for me, uncertainties of what would lay ahead, the arrival of complications unexpected, pain, and ultimately a sense of the loss of control and a resulting fear.” While hospital support groups and some online chat rooms existed at the time, they fell short of providing the insights, guidance and accessibility necessary to have real benefit to a newly diagnosed cancer patient undergoing treatment. “My problems were complex and changing daily. Every day it seemed that something new was occurring that complicated matters, and I needed to talk with someone who could help me digest everything from the new medical terminology, to dealing with side effects of what I was undergoing.” It was through building relationships with other survivors and exchanging stories and information that Hill was able regain hope and envision life after cancer.

In 2001, seeing a need for patients to connect with one another, Hill worked to develop an interactive online forum where patients and survivors could share their knowledge and tell their stories. Christine Brader joined the forum after her first oral cancer diagnosis in 2007. “When I was diagnosed I didn’t know which way to turn, and by finding others who had gone through it, I gained significant peace of mind,” she recalls. “After my third cancer recurrence, I lost 65 pounds, was hospitalized twice for dehydration and malnutrition and was ready to quit. The doctors don’t always prepare patients for the realities of the difficult treatments.” It was the advice from other survivors, words of encouragement and support from the OCF forum community that convinced Christine to continue her treatments and gave her hope. “There’s a whole world of people who have gotten through it and survived, they are living in a world after cancer and are thriving” she says. “Given the extensive disfiguring surgeries, and compromises that I would be forced to live with, I was uncertain if there was even a place for me in the world after fighting to survive. Single, unable to work in my previous vocation, I could not wrap my mind around how I would fit back into a world where everything from esthetics, to the ability to speak clearly carry so much weight. But through this online vehicle, I built friendships, and through one person in particular I was repeatedly told that there can be a rich vibrant life after this terrible cancer, which can leave its visible damage even after survival, no matter how different I was after it all. The transition was not easy, but they were right. Life after my battle is rich in relationships, and meaningful work.” Now, as the patient support administrator for OCF, Christine offers her experience-based insights and emotional support to others just beginning their own battles.

Unlike public chat rooms and social media based groups, OCF’s Patient Support Forum was designed with the users’ privacy and safety in mind. OCF’s forum users’ personal information will never be marketed to by outside companies, and they will never be exposed to advertising; both considerations associated with social media platforms. Anonymous screen names protect privacy and facilitate an open dialogue for difficult topics such as intimacy and depression. “It was important to develop rules to ensure that the information on the forum is reputable, and accurate. Misinformation can facilitate poor decision making, and harm people,” says Hill. To that end, the forum is heavily monitored by volunteer staff with diverse medical backgrounds including dentistry, oncology, research, and nursing and of course long term survivors themselves. Both Hill and Brader agree that the survivors are often the most adept at answering questions correctly and sensitively. “Survivors direct experience many times trumps clinical experience of professionals, though we would never suggest that they have the same level of knowledge. But living on the receiving end of the treatment process definitely provides you with a much different perspective. We don’t let inaccurate information live on our boards,” says Hill, “and we will correct or eliminate the information/comments that are incorrect or scientifically unsupported.”

It is this kind of monitoring and oversight that earned OCF’s websites, oralcancer.org and oralcancersupport.org, Health on the Net’s HONcode certification. The HONcode is a designation reserved for online publishers of trustworthy and reliable medical and health information who have volunteered to adhere to hundreds of strict guidelines and Health on the Net’s code of ethics. This certification is an oversight process that is ongoing, to ensure the consumer that information presented is trustworthy and scientifically accurate; and that protocols for proper informed interaction are in place. With the understanding that poor information can lead to poor choices, OCF has gone to great lengths to protect its members from misleading information.

Today, the Oral Cancer Foundation is working hard to make patients and their families aware that support and answers are available online, for free, 24 hours a day by visiting the web based forum. In keeping with OCF’s missions to reduce suffering and save lives through prevention, education, research, advocacy, and patient support, the forum has been designed to fulfill the need for reliable medical information and emotional support. With over 10,000 active members, thousands more who visit the site, read the threads of discussion without becoming members or posting themselves, and over a quarter million archived threads of information, the forum has grown into the largest and most well curated databases of oral cancer information and emotional support on the internet. Members now span across the globe and dozens of countries. Even oncology researchers have looked to this online community to develop answers and insights into understanding the patient experience, and improving the ways in which they interact with patients, and anticipate their needs both physical and emotional.

When discussing the relationships he’s made on the forum, Ed Brown, now a 12-year oral cancer survivor says, “Finding each other is the greatest thing that has ever happened to us. When you feel like you’re some kind of freak and struggling alone with your issues, it’s the best feeling to find out there is someone else out there who has dealt with the same thing, someone who knows what it’s like, someone who understands the “work-arounds” for some of the complications of treatments that we all deal with. Thanks to the forum I now know 10,000 survivors who because of our shared experiences are a resource I can turn to.”  Few people can comprehend the pain and hardship of undergoing treatment for a life threatening illness, fewer are aware of the emotional isolation and lonesomeness that accompanies the disease. Only survivors, other patients, and their caregivers live the intimate struggles and battles of will that take place when fighting for your life.

“The support forum became a second family really, not just a bunch of patients or survivors, but a community that I was a part of. We’ve all shared a common experience, endured treatment, survival, complications, and funerals. The camaraderie in the community is the heart and soul of what OCF really is – a group of people helping other people,” says Hill. The individuals who use the support forum have made lifelong friendships and passed along their experiences and knowledge to others.  Brown says, “For every success I’ve had on this journey, likely a thousand people will have known about it.” Sharing in the successes of others and giving back to a community that has embraced you during your difficult times are important reasons why many of the thousands of forum users continue to use the site after they’ve been declared “disease free.”

Hill has called the patient support forum the “heart and soul” of the foundation. Given the foundations many diverse activities; from sponsoring research to advocacy, those that populate the OCF forum, who choose to spend part of their new lives in service to those behind them on the path, he feels they are the palpable core of what OCF is. Few face-to-face support groups can deal with the daily needs of patient ups and downs, as they most often meet once a month, and have less depth of experience to draw from as there are fewer individuals to share their experiences, and fewer survivors attending as they move on from their cancer experience. The OCF forum idea, created well before Google was the major search engine we know today, and before any social media companies like Facebook even existed, has a decade and a half of experience as an Internet based platform to help others… as often as they find a need for it.

Oral cancer is not fought with treatment staff and medicine alone, but in conjunction with reliable medical information to facilitate good decision making, and emotional support and guidance when the questions and weight of the experience seem overwhelming. OCF’s Patient Support Forum is a resource rich with answers, accessible anytime, from nearly anywhere, anonymous, monitored and safe, and free to anyone in need.

For more information about the Oral Cancer Foundation and the Patient Support Forum, please visit oralcancer.org and oralcancersupport.org.

About the Oral Cancer Foundation:
The Oral Cancer Foundation, founded by oral cancer survivor Brian R. Hill, is an IRS registered non-profit 501(c)(3) public service charity that provides information, patient support, sponsorship of research, and advocacy related to oral cancer. Oral cancer is the largest group of those cancers that fall into the head and neck cancer category. Common names for it include such things as mouth cancer, tongue cancer, head and neck cancer, and throat cancer. The Oral Cancer Foundation maintains the web sites: www.oralcancer.org, www.oralcancernews.org, www.donate.oralcancer.org, www.oralcancersupport.org and www.ocfstore.org, which receive millions of hits per month. Supporting the foundation’s goals is a scientific advisory board composed of leading cancer authorities from varied medical and dental specialties, and from prominent educational, treatment, and research institutions in the United States. The foundation also manages the Bruce Paltrow Oral Cancer Fund, a collaboration between the Paltrow family represented by Ms. Blythe Danner (Paltrow), Gwyneth Paltrow, Jake Paltrow and the Oral Cancer Foundation.

Cowboy with a statement on smoking

Source: www.vp-mi.com
Author: Adam Robertson
55f20e17c6255.imageA cowboy stands against smoking
Above: Cody Kiser holds on as his bronco goes wild during the Sanders County Fair rodeo; Kiser has teamed up with the Oral Cancer Foundation to raise awareness of the dangers of tobacco products through the rodeo.


PLAINS – Tobacco use has been a big part of the rodeo for years; one participant of the Sanders County Fair is in the forefront of changing this, though, by promoting a tobacco-less lifestyle through the sport.

Cody Kiser, a cowboy who rode bareback broncos at the Fair, has teamed up with the Oral Cancer Foundation’s ‘Be Smart, Don’t Start’ campaign to help teach kids about the dangers of tobacco products and oral cancer. According to their website, the campaign is part of the foundation’s rodeo outreach and attempting to “become engaged where the problem lives.”

“While other [groups] are focused on getting users to quit, the Oral Cancer Foundation is reaching out to young people to not pick up the habit that they may see one of their rodeo heroes engaging in,” stated information provided by the OFC.

To help with this, Kiser and the foundation have been working to present role models within the rodeo world who do not use tobacco products and actively advocate against their use.

“How do you change that?” Kiser asked, regarding the tobacco-use culture. “I think that is in kids; you have to get to the kids and get their opinions changed.”

The foundation’s main focus has been on reaching out to middle school and high school students, though getting their message to any kid is helpful. They try to inform the kids of the dangers of tobacco products, with a particular emphasis on chewing tobacco, which is heavily linked to developing oral cancer.

“We’re not here to tell anybody how to live their life or anything, if they’re already chewing or smoking,” said Kiser. “Just give information … and hope we reach out to the kids. That’s the main thing.”

During the Sanders County Fair rodeo, Kiser only wore sponsorship logos for the OCF. He also took time to talk to kids at the fair and give out pins, bandanas as well as other items with the foundation’s message on them.

It was noted there are other rodeo riders who do not smoke or chew tobacco, though it is rare. This has been turning around in recent years, though, and there are organizations promoting tobacco-free rodeos, where only people who do not use tobacco products participate. Other organizations, like Project Filter and reACT, are also working to educate kids about tobacco use through the rodeo.

“There are groups who are doing this now,” Kiser said. “It’s not just us … There is some move towards it. It’s in its infancy right now, but there people who are doing stuff.”

He also recalled a number of athletes had used tobacco products and reported regretting it later in life; some hall of famers have said they would do things differently, in regards to tobacco use, if they could go back. The main goal of the OCF and its ‘Be Smart, Don’t Start’ campaign has been to help kids avoid having those regrets.

The foundation hopes to set up public speaking arrangements at schools for Kiser and their other ambassadors in the near future, though for now their outreach is limited to rodeos. Going directly to the schools would help them reach out to kids more and spread their message further.

Tobacco use is strongly linked to oral cancer, which has several severe impacts on the body; everything from losing teeth to serious oral sores or even death. The effects do not stop at a personal level either and can spill over to other people’s lives as well.

According to the OFC, approximately 46,000 people are diagnosed with oral cancer each year. This translates to almost 115-120 people diagnosed each day.

More information on the Oral Cancer Foundation can be found at www.oralcancer.org.

*This news story was resourced by the Oral Cancer Foundation, and vetted for appropriateness and accuracy.

Raising awareness at the rodeo

Source: www.dailyrecordnews.com
Author: Nicole Klauss


A rodeo barrel racer from California is helping spread the word in Ellensburg that people shouldn’t start using tobacco.

Carly Twisselman competed at the Ellensburg Rodeo slack Thursday night. She also helped share the message of the Oral Cancer Foundation, which is “Be smart. Don’t start.”

While attending and competing at rodeo events, Twisselman reaches out to youth to encourage them not to pick up the habit they may see their rodeo heroes have.

“The rodeo is known for having a lot of chewing tobacco. … The rodeo is such a small community and the heroes in it, the children look up to,” Twisselman said. “When they see their hero, growing up they think ‘I want to be like them.’”


The Oral Cancer Foundation teamed up with Twisselman and bareback bronc rider Cody Kiser to spread the word in the rodeo circuit. The goal of the campaign is to spread awareness of oral cancer and the dangers of starting tobacco use. Twisselman often spends time talking to children and hands out buttons and bandannas to spread the message.

Smokeless/spit tobacco is one of the historic causes of deadly oral cancers, and is more addictive than other forms of tobacco use, according to a news release from the Oral Cancer Foundation.

According to the Oral Cancer Foundation’s website (www.oralcancer ocw.upc.edu.org), mouth cancers are newly diagnosed in about 115 people each day in the U.S., and worldwide new mouth cancer cases exceed 450,000 annually. When found at early stages of development, people with oral cancers have an 80 to 90 percent survival rate.

Twisselman has never used tobacco, though some in her family have. Her two brothers both used chewing tobacco, but quit on their own before Twisselman got involved with the Oral Cancer Foundation campaign.


Twisselman grew up on a cattle ranch in central California and comes from seven generations of ranching.

“I’ve been riding horses and competing in rodeos since I could walk,” she said. “I won the youngest rider award from my fair when I was 2. It’s pretty much been in my blood and my lifestyle forever, and it’s something I’ve always been passionate about.”

She went to school in Los Angeles, Calif., to study communications and pursue an acting career. Today she is the host of a show on the Ride TV channel. She balances that with rodeo activities.

*This news story was resourced by the Oral Cancer Foundation, and vetted for appropriateness and accuracy.

Rodeo Competitor Speaks to Youth to Spread Anti-Tobacco Message


Source: www.prnewswire.com
Author: Oral Cancer Foundation
Unknown-1Cody Kiser prepares for competition while sporting the Oral Cancer Foundation’s message – Be Smart. Don’t Start.


NEWPORT BEACH, Calif., Aug. 14, 2015 /PRNewswire-USNewswire/ — The traditional image of the American cowboy is one of strength, rugged determination and courage. In the world of professional rodeo competition, that image is no different. Cowboys—and increasingly so cowgirls—are held in esteem and looked at as heroes by young and old alike. The power of the cowboy as a compelling figure has not gone unnoticed by the tobacco industry, whose marketing campaigns have sought to tie the ideals of the cowboy with the use of their products. The western/rodeo environment in the US has had a long-term relationship with tobacco, and until 2009 The Professional Rodeo Cowboys Association (PRCA) and the rodeos that they sanctioned had a lengthy history of tobacco money funding the sport. While that has ended at PRCA events, tobacco use and smokeless/spit tobaccos are still popular within the sport.

The Oral Cancer Foundation (OCF) believes that in order to solve problems you must engage the problem at the source. As a small and growing non-profit, OCF is not afforded the luxury of relying on conventional methods of outreach utilized by larger, more established charities. To enact meaningful change and bring awareness to the public, OCF must employ ingenuity and creativity to address the problems at hand. Within the world of professional rodeo, that problem remains to be the glorification and pervasive use of tobacco products amongst athletes and fans. The Oral Cancer Foundation is the first non-profit charity to ever sponsor a rodeo competitor, and in doing so is able to introduce a new type of role model into the rodeo world.

In 2014 OCF partnered with Cody Kiser, a young, personable, up and coming bareback bronc rider to promote the foundation’s anti-tobacco campaign. As a spokesperson for the foundation Cody hopes to serve as a positive role model for children and teens that look up to cowboys as their heroes in the rodeo world. Research shows that as many as 15% of high school boys use smokeless tobacco in the United States. With the nicotine content in a can of dip equaling approximately that of 80 cigarettes, this addiction can be one of the hardest to break, which is why The Oral Cancer Foundation hopes to educate parents and youth about the dangers before they even get started.

On June 11th Cody attended the Montana High School Rodeo Association’s (MHSRA), reACT Tobacco Free Rodeo Finals, in Kalispell, MT, speaking to youth and their parents. ReACT Tobacco Free Rodeo is a campaign sponsored by the Montana Tobacco Use Prevention Program empowering teens to take a stand against tobacco and honoring rodeo athletes who pledge to live tobacco free. This year reACT awarded five MHSRA Seniors with $5,000 scholarships towards their college educations, and 14 high-scoring student athletes received breast collars in recognition of their achievements and commitments to living tobacco free.

As motivational speaker, Cody discussed how Rodeo culture has been inundated by tobacco companies, and how this is a new generation that can make a difference by taking a stand against tobacco companies that use the country way of life to market a deadly product. The forty-five minute presentation focused on how living a tobacco-free lifestyle has assisted Cody in making good choices and accomplishing his dreams. Cody stressed to the teens in attendance that they each had a choice, and in choosing to live tobacco free they also had the power to fulfill their own dreams and enact meaningful change.

While adults certainly have the right to make any lifestyle choice they desire, they inadvertently expose impressionable young people to what are sometimes harmful habits through poor examples like the use of tobacco products. This is particularly harmful as kids look up to athletes, not just in rodeo, but major league baseball and elsewhere, as heroes that they aspire to be like. Unfortunately, no hero is ever perfect. OCF uses its Rodeo Campaign to put alternative role models out in the world of rodeo cowboy athletes, with the intention of reaching young people before they make addictive choices that will harm them later in life. The foundation’s message is simple and straightforward: Be Smart. Don’t Start.

About the Oral Cancer Foundation

The Oral Cancer Foundation, founded by oral cancer survivor Brian R. Hill, is an IRS registered non-profit 501(c)(3) public service charity that provides information, patient support, sponsorship of research, and advocacy related to this disease. Oral cancer is the largest group of those cancers that fall into the head and neck cancer category. Common names for it include such things as mouth cancer, tongue cancer, head and neck cancer, and throat cancer. OCF maintains a web site at http://www.oralcancer.org, which receives millions of hits per month. Supporting the foundation’s goals is a scientific advisory board composed of leading cancer authorities from varied medical and dental specialties, and from prominent educational, treatment, and research institutions in the United States.

HPV Persistence Predicts Poor Prognosis in Head/Neck Cancer

Source: www.medscape.com
Author: Roxanne Nelson, RN, BSN

Among patients with human papillomavirus–positive oropharyngeal cancer (HPV-OPC), persistence of HPV following treatment is associated with a poorer prognosis.

Results of a new study show that the persistence of HPV16 DNA, detected in oral rinses after treatment has ended, may be predictive of disease recurrence.

In a cohort of 124 patients with HPV-OPC, HPV16 DNA was detected in oral rinses from 54% (n = 67) of patients at the time of their diagnosis. Following treatment, it was detected in only six patients after treatment, including five patients with persistent oral HPV16 DNA that was also detected at diagnosis.

All five patients with persistent HPV16 experienced disease recurrence, with three eventually dying of their cancer. Conversely, only nine of 119 patients without persistent oral HPV16 DNA developed recurrent disease.

“Our findings indicate that persistent HPV16 DNA in oral rinses may be a useful early marker of disease that has either recurred or never fully responded to treatment,” said first author Eleni Rettig, MD, of the Department of Otolaryngology–Head and Neck Surgery, Johns Hopkins University School of Medicine, Baltimore, Maryland.

“In the clinical setting, this could one day be a part of routine surveillance after treatment for HPV-positive oropharyngeal cancers, in addition to clinical examination and imaging,” she told Medscape Medical News.

The study was published online July 30 in JAMA Oncology.

Biomarker Potential?

In an accompanying editorial, Julie E. Bauman, MD, MPH, and Robert L. Ferris, MD, PhD, both of the University of Pittsburgh, in Pennsylvania, point out that HPV-specific biomarkers in oropharyngeal squamous cell carcinoma (OSCC) may be used to improve clinical outcomes, and “this pioneering study demonstrates an association between persistent oral HPV16 DNA detection and recurrence.”

But an ideal biomarker for recurrence, they say, should have a number of characteristics, including high sensitivity to identify the population with salvageable locoregional recurrence, a high positive predictive value (PPV) so as to avoid the economic, physical, and emotional costs of false-positive evaluations, and accuracy for detecting subclinical locoregional recurrence.

The prevalence of a positive oral rinse at diagnosis, however, was only 54%, and so the “low sensitivity of the assay, even with gross disease present, raises legitimate questions regarding its utility for diagnosing subclinical disease,” they say.

Of the six cases in which posttreatment HPV16 DNA was detected, five patients developed recurrent disease, representing a PPV of 83%, the editorialists write. When restricted to the five cases with persistent HPV16 DNA, the PPV then becomes 100%.

Although this looks impressive, they point out that “persistence can only occur in those who initially test positive — making this recurrence biomarker irrelevant for half of patients with HPV-positive” disease.

In addition, they add, the PPV can apply to any recurrence, including presentation with distant metastases, and “unfortunately, early diagnosis of disseminated OPSCC [oropharyneal squamous cell carcinoma] has not been associated with improved survival.”

“Operating characteristics, including low sensitivity, low confidence in the PPV, and high NNT [number needed to treat], preclude immediate clinical adoption,” say Dr Bauman and Dr Ferris. They add that incorporating an HPV-specific biomarker in future surveillance guidelines will require some refinement, including improved sensitivity and perhaps combining it with other serologic markers, such as HPV16 DNA or E6 antibodies.

“Meanwhile, the high negative predictive value of oral rinse HPV16 DNA detection raises the promise of deintensifying surveillance visits and/or costly imaging, particularly if on a prospective trial,” they conclude.

Dr Rettig agrees that more studies are needed before this test can be recommended. “For example, we need to understand when and how frequently to administer the test, what exactly we should do with a positive result, and what the cost-effectiveness would be, given the small number of individuals who actually have persistent oral HPV16 ― only five of 124 people in our study,” she said.

“We also can’t say for sure that all of the HPV16 DNA comes from tumor cells, and in some cases, it might just come from an oral HPV16 infection,” Dr Rettig explained. “For all of these reasons, right now, this test should only be used in the research setting until we have more information from additional studies.”

Associated With Recurrence

In this study, Dr D’Souza and colleagues examined HPV DNA detection in oral rinses after treatment for HPV-OPC and how it related to disease recurrence and survival.

This prospective cohort study included HPV-OPC patients diagnosed from 2009 to 2013 at four centers. Oral rinse samples were collected at diagnosis and after treatment (9, 12, 18, and 24 months after diagnosis) and were evaluated for HPV DNA. One or more posttreatment oral rinses were available for the 124 patients included in the study.

The median follow-up time was 33 (24-41) months, during which there were 14 recurrences and six deaths — all due to recurrent disease.

Two years after diagnosis, disease-free survival (DFS) was 92% (95% confidence interval [CI], 94% – 100%), and overall survival was 98% (95% CI, 93% – 99%).

The presence of HPV16 DNA in oral rinses at the time of diagnosis was not associated with either DFS (P = .15) or overall survival (P = .14), but on univariate analysis, persistent HPV16 DNA detection in oral rinses (eg, both at diagnosis and any time after treatment) was associated with a greater than 20-fold increased risk for recurrence (hazard ratio [HR], 29.7; 95% CI, 9.0 – 98.2) and death (HR, 23.5; 95% CI, 4.7 – 116.9).

It still remained associated with both DFS (adjusted HR [aHR], 35.8; 95% CI, 8.6 – 149.1) and overall survival (aHR, 16.1; 95% CI, 2.8 – 92.7) after adjusting for pack-years of smoking and tumor stage.

This research was supported financially by the Johns Hopkins Richard Gelb Cancer Prevention Award (Dr D’Souza), the Oral Cancer Foundation (Dr D’Souza), the National Institute of Dental and Craniofacial Research, and the National Institutes of Health Training in Otolaryngology grant (Dr Rettig). Several of the authors report relationships with industry, as noted in the article. The editorialists report no relevant financial relationships.

JAMA Oncol. Published online July 30, 2015. Abstract, Editorial

*This news story was resourced by the Oral Cancer Foundation, and vetted for appropriateness and accuracy.


Guest View: Stampede riders take stand against tobacco habits

Source: Prospect Magazine
Author: Natalie Riggs

Smokeless/spit tobacco is one of the historic causes of deadly oral cancers, and is more addictive than other forms of tobacco use.

As a national nonprofit seeking to spread awareness of oral cancer and the dangers of starting terrible tobacco habits, the Oral Cancer Foundation has teamed up with professional barrel racer, Carly Twisselman, and bareback bronc rider, Cody Kiser, in an effort to spread the word in one of the biggest arenas of tobacco using patrons — the rodeo circuit.

While others are focused on getting users to quit, the Oral Cancer Foundation is taking a proactive stance against tobacco by reaching out and educating youth about the dangers and risks of the habit. The message is simple and non confrontational: “Be Smart. Don’t Start.” With the strong addictive powers of smokeless tobacco, we have to engage them early.

The Oral Cancer Foundation is a big believer that in order to solve problems, you have to become involved where the problem lies. The western/rodeo environment in the U.S. has had a long-term relationship with tobacco, and until 2009, the Professional Rodeo Cowboys Association and the rodeos that they sanctioned had a lengthy history of tobacco sponsorship money funding the sport.

While that has ended at PRCA events, tobacco use, and smokeless/spit tobaccos still thrive in the sport.

As a national nonprofit, OCF is taking a stance against tobacco with the help of both a cowboy and cowgirl who value their choice of not associating or partaking in this act; making them alternative positive role-models for the adolescent age group whose minds are so easily molded.

Carly Twisselman comes from a seventh-generation ranching family in California. Rodeo has always been a family sport for her and she feels it is important to protect that family lifestyle.

Besides her work with the foundation, Carly can be found as a TV host on the new Ride TV cable channel, in Hollywood as a stuntwoman for popular television shows such as: “Glee,” “Vegas” and the motion picture film “Crank.” OCF is very proud to have her as a spokesperson in our “Be Smart — Don’t Start” program.

Cody Kiser is your All-American cowboy. He graduated with a degree in engineering from University of Nevada, Reno. Cody has worked in Hollywood as a professional stuntman and can be seen in the recent blockbuster film “American Sniper,” starring Bradley Cooper. Cody’s desire to put forth effort to try to make a change in the world with his stance for non-tobacco use, while encouraging youth to make the decision against tobacco, is admirable. It is important for our youth to have positive role models who practice healthy habits, and OCF feels that Cody is the perfect candidate.

Both Cody and Carly will be riding this weekend at the Marysville Stampede.

Natalie Riggs is director of special projects for the Oral Cancer Foundation. For more information, visit the website: http://www.oralcancer.org.

Oral Cancer Survivor Eva Grayzel Talks About Her Efforts to Make A Difference

Source: www.lehighvalleylive.com
Author: Andrew James Sheldon


As an oral cancer survivor, Eva Grayzel knows how lucky she is.

She organizes an annual awareness walk for what she says is an often overlooked disease.

“I was diagnosed sixteen years ago and I am so lucky to be articulate,” she said. “I can’t ethically live my life as I do without doing whatever I can to make sure what happened to me doesn’t happen to other people.”

Grayzel survived stage four oral cancer, which is the most serious of the four stages. She has served as the chair of the oral cancer awareness walk in Bethlehem Township, Pennsylvania, for six years. This year’s walk is Sept. 27.

Grayzel says that raising awareness is the key step to catching the disease early before it can do the most damage. Other survivors will join her in the walk.

“There are going to be 20 survivors who have all been diagnosed late and most of them have facial disfigurements. They can’t speak normally, some of them can’t speak,” she said. “It’s devastating. Oral cancer steals things we take for granted such basic human needs, everything social.”

Grayzel’s group helped organize a continuing education class for dentists to learn about oral cancer and its connection with the human papillomavirus. Symptoms of oral cancer are sometimes unrecognized by sufferers and doctors.

Eileen Ciszak lost her daughter as a result of a misdiagnosis.

“The doctor gave her an antibiotic and told her to see her dentist, that she probably had a cracked tooth,” she said. “By the time she got there, the dentist knew immediately she needed to pursue this and the next day she was having a biopsy done.”

Thanks to the support of people like Ciszak, the walk has been growing. They had attended the walk once several years ago, but stopped after their daughter died.

“The first year we attended the walk, at that time my daughter had just had her oral cancer surgery, and we wanted to show our support,” Ciszak said. “Ten months after we attended the walk, she had passed away and it was just very difficult for us to really get involved at that point.”

After some healing, Ciszak decided to return.

“We just wanted to try to help organize, to create awareness with our story, be there to support others who have lost loved ones and support the survivors,” she said.

Eva GrayzelEva Grayzel, walk chairwoman, attended the 2013 Oral Cancer Foundation Walk for Awareness with her husband, Ken Cohen.

*This news story was resourced by the Oral Cancer Foundation, and vetted for appropriateness and accuracy.

HPV Can Damage Genes and Chromosomes Directly, Whole-Genome Sequencing Study Shows

Press release from the James Cancer Center 


COLUMBUS, Ohio – The virus that causes cervical, head and neck, anal and other cancers can damage chromosomes and genes where it inserts its DNA into human DNA, according to a new study led by researchers at The Ohio State University Comprehensive Cancer Center – Arthur G. James Cancer Hospital and Richard J. Solove Research Institute (OSUCCC – James).

It’s long been known that cancer-causing types of human papillomavirus (HPV)  produce two viral proteins, called E6 and E7, which are essential for the development of cancer. However, they are not sufficient to cause cancer. Additional alterations in host-cell genes are necessary for cancer to develop. Here, scientists identified a new mechanism by which HPV may damage host DNA directly and contribute to cancer development.

Published in the journal Genome Research, this laboratory study used whole-genome sequencing to investigate the relationship between the HPV and host genomes in human cancers.

“Our sequencing data showed in vivid detail that  HPV can damage host-cell genes and chromosomes at sites of viral insertion,” says co-senior author David Symer, MD, PhD, assistant professor of molecular virology, immunology and medical genetics at the OSUCCC – James.

“HPV can act like a tornado hitting the genome, disrupting and rearranging nearby host-cell genes,” Symer explains. “This can lead to overexpression of cancer-causing genes in some cases, or it can disrupt protective tumor-suppressor genes in others. Both kinds of damage likely promote the development of cancer.”

“We observed fragments of the host-cell genome to be removed, rearranged or increased in number at sites of HPV insertion into the genome,” says co-senior author Maura Gillison, MD, PhD, professor of medicine, epidemiology and otolaryngology and the Jeg Coughlin Chair of Cancer Research at the OSUCCC – James. “These remarkable changes in host genes were accompanied by increases in the number of HPV copies in the host cell, thereby also increasing the expression of viral E6 and E7, the cancer-promoting genes.”

HPV causes about 610,000 cancers annually worldwide, including virtually all cervical cancers, and many anogenital and head and neck cancers. How it causes cancer isn’t completely understood.

The two cancer-causing proteins, E6 and E7, silence two key tumor-suppressor genes in host cells, contributing to cancer development. “E6 and E7 are critically important for the virus to cause cancer. Our findings shed light on how HPV, and perhaps other viruses, can disrupt the structure of host chromosomes and genes and thereby contribute to cancer development,” Gillison explains.

For this study, Symer, Gillison and their colleagues examined 10 cancer-cell lines and two head and neck tumor samples from patients. Along with whole-genome sequencing, the scientists used several molecular assays, including RNA sequencing, spectral karyotyping (SKY) and fluorescence in situ hybridization (FISH).

Key technical findings included:

• The genome-wide analysis, at single nucleotide resolution, identified a striking and recurrent association between HPV integrants and adjacent genomic amplifications, deletions and translocations;

• The HPV integrants mapped broadly across the human genome, with no evidence of recurrent integration into particular chromosomal hotspots;

• The researchers proposed a “looping” model by which abnormal viral replication results in the extraordinary damage that occurs to host chromosomes at the sites of viral DNA insertion.

“Our study reveals new and interesting information about what happens to HPV in the ‘end game’ in cancers,” Symer says. “Overall, our results shed new light on the potentially critical, catastrophic steps in the progression from initial viral infection to development of an HPV-associated cancer.”

Funding from the Ohio State University Comprehensive Cancer Center – Arthur G. James Cancer Hospital and Richard J. Solove Research Institute (OSUCCC – James), the Ohio Supercomputer Center, an Ohio Cancer Research Associate grant, the Oral Cancer Foundation and the Intramural Research Program of the National Institutes of Health, National Cancer Institute Center for Cancer Research, supported this research.


A great company teams up with great employees to raise money for Oral Cancer

As a result of a great company and their employees, at a second annual 5K run and two mile walk for Team Berry at a local event this year in South Carolina, their efforts have raised more than $2,900 which was donated to the Oral Cancer Foundation to be used for oral cancer research.

Shelly BlevinsSixty-four employees, spouses and children of Berry Home Centers and Berry Iron and Metal Company participated in the 5K and walk this year, more than double the participants last year, because the companies were running for a cause. Both were running for Jeremy Blevins, 42, who passed away Aug. 3 after a courageous battle with oral cancer, and his family. Jeremy is the nephew of Tom and Kyra Bishop who own Berry Home Centers and Berry Iron and Metal Company and also the nephew of Steve Kegley, Kyra’s brother and manager of the Abingdon Berry Home Centers’ store.

Berry’s offered to donate $20 for every mile walked or run by employees in this year’s race to the Oral Cancer Foundation in Jeremy’s honor. Employees completed a 145.1 miles during the 5K and 2 mile walk, so Berry’s donated $2,902 to the Oral Cancer Foundation as a result.

Jeremey Blevins wife, Shelley Blevins, pictured above with their son, Bise, and friend, is also coordinating the inaugural Oral Cancer Foundation Run For Awareness in Memory of Jeremy Blevins on Saturday, February 1, 2014. The event will take place at Springmaid Park located at Baxter Village. Please visit the event page at: http://donate.oralcancer.org/index.cfmfuseaction=donorDrive.event&eventID=583

In difficult times like these, when great individuals team up with great companies, great things can happen.