Oral Cancer Answers Podcast

Eva Grayzel⁠, a professional interactive performance artist, was diagnosed with late-stage oral cancer at age 33 and told she had a 15 percent chance of survival. A non-smoker, she was bounced among dental professionals while the ulcer on her tongue grew more prominent and painful. “My first biopsy was misread by a general pathologist as hyperkeratosis, when in fact it was moderate dysplasia which had a chance of turning into cancer. I didn’t know there were ⁠specialists in pathology⁠, nor did I know that biopsies are not 100% definitive. It was two years and nine months from the first biopsy until the day I was finally diagnosed with late-stage oral cancer. During that time, bouncing back and forth between my dental practice and oral surgeons, no one EVER mentioned the words ‘oral cancer’ as a possible cause. Finally, I made an appointment with ⁠Dr. Mark Urken⁠, head and neck surgery chief at Mt. Sinai Hospital. I took the bus into Manhattan on the fateful day of April 1, 1998, not having the slightest idea that what was on my tongue was remotely serious.”

Eva endured the removal of 1/3 of her tongue, a partial tongue reconstruction, a modified radical neck dissection, and a maximum dose of radiation therapy. Through an extraordinarily successful treatment plan, Eva not only survived but also regained her ability to speak clearly. With a second chance at life, Eva couldn’t let the same thing happen to someone else.

A champion for early detection, Eva founded Six-Step Screening™, an oral cancer awareness campaign for dental professionals and the general public. The ⁠American Academy of Oral Medicine⁠ recognized her initiative and awarded ⁠her honorary membership⁠.

“I share ⁠my personal story⁠ , hoping it will inspire dental and healthcare professionals to perform oral cancer screenings on all their patients and educate them about what they are looking for and the early signs of oral cancer. It’s more than my mission to educate. It’s my tribute to all those who came before me and my obligation to those who will follow.”

Eva celebrated her 10th cancer-free anniversary by founding ⁠Talk4Hope⁠ , which includes two ⁠children’s books⁠ to promote dialogue and minimize fear around cancer, and ⁠My Story Legacy⁠, a 12-page guide to document personal stories, a gift as valuable as material possessions.

Oral Biopsy "Save Lives" with Dr. Sahar Mirfarsi & Stephanie Govea is about how a grant and a passionate oral medicine doctor can make a difference in people's lives. It was recorded with Kyle from OCF.

Guests:

Dr. Sahar Mirfarsi

Stephanie Govea - 4th Year Medical Student

Oral Cancer Answers - Dr. Parul Dua Makkar

The Human Immune System Basics

In a time of a Covid pandemic, and the rapid development of several life-saving vaccines to address it, the world has seen the possibilities that vaccines offer. But none of this has come without something unexpected given the hundreds of thousands who have died; vaccine hesitancy. One of the primary drivers for the last 20+ years of oropharyngeal cancers has been a virus, HPV. In 2006 a vaccine was made available in the market that will prevent HPV infections in the future generation that gets vaccinated now as children. Here in our head and neck/oral cancer world, there was also a huge opportunity, marred by some vocal anti-vaccine voices that have held back, through disinformation, the full potential of this cancer-preventing technology. OCF decided that we needed not just to argue with those in opposition to all vaccines, but to educate people with solid, science-based information so that they would feel more secure protecting their children while the pre-exposure window existed to use the vaccine. This task means that first, we have to ensure that individuals have a working understanding of the immune system itself, second that they understand how it protects us from various threats, and third what we can do to educate the immune system about threats it needs to recognize and protect us, pre-infection....ie through the use of a vaccine. Hesitancy or uncertainty about vaccination can only be eliminated through a thorough understanding of it,  not arguing against people who want to fight through the use of disinformation campaigns and lies. Armed with facts, the decision to be vaccinated is much easier.

This first of three podcasts will give the listener a sound understanding of how our immune system works, how it defines what is a threat,  and what components of it are put into action to protect us. To do this well we have enlisted the help of OCF's long-time friend and colleague,  Dr. Ross Kerr from NYU to act as the OCF moderator for this episode, and he has chosen  Dr. David Levy as his well-versed and informed partner in the discussion. Dr. Levy has been working in the area of immune system research for decades. It is a privilege to have both of these distinguished doctors on this podcast. We would like to mention that this podcast was produced by the Oral Cancer Foundation in partnership with our long-term partner in many endeavors, The American Academy of Oral Medicine.

Dr. David Levy

PROFESSOR OF PATHOLOGY AND MICROBIOLOGY

Dr. Louis A Schneider Professorship in Molecular Pathology

Director, Molecular Oncology and Tumor Immunology Training Program

Faculty Liaison Director, Advanced Research Technologies

Department of Pathology

New York University School of Medicine

Cancer doesn’t stop for anyone or anything. With the first phase of our First National Virtual Fundraising event drawing to a close, we wanted to shout out and feature the top 3 fundraisers who have been a powerhouse during this event. All 3 have raised over $1000 for OCF and have been a huge encouragement for those who would also like to do good. 

Nick Kuehl – Nick is a Squamous Cell Carcinoma Survivor and is approaching his two-year anniversary of being diagnosed. To quote Nick, “My journey is not more special or unique than anyone else. We all have our own challenges to overcome. We all know someone who has, is, or will battle cancer in their life.”

Claire Pettingale – Claire walks for her sister Catherine Hackett. Cathy’s specific cause for her oral cancer was one that has not yet been identified. With the impact of COVID-19, those with preexisting health conditions have gone unseen, as the pandemic has taken priority. She wants to bring awareness that everyone is affected by the pandemic, and cancer patients should not be left behind. Claire has been a beacon of light in these uncertain times, and both sisters are amazing and encouraging women. 

Robert Logan – What can we say about Robert except he is a true champion. Robert has been battling HPV16+ cancer for three years, had six tumors, completed chemotherapy and radiation treatments, only for cancer to come back. He has been enrolled in phase 2 clinical trial with Immunotherapy and targeted chemotherapy, and his cancer has been stable for 15 months! Robert has been participating in the Fundraiser every day, and frequently updates his social media with his progress, sharing inspiring photos of himself throughout the month.

As a successful entrepreneur and international, award winning speaker, Jo-Anne has a career that has spanned over four decades as a dental hygienist with the last 20 years dedicated to education and speaking. Jo-Anne has been selected as one of DPR’s Top 25 Women in Dentistry and joins the 2020 Dentistry Today CE Leaders for the 10th consecutive year. 

In the midst of preparing to present her extensive research on HPV-related oropharyngeal cancer to her national association, Jo-Anne’s family were dealt a crushing blow of having a family member diagnosed with late stage HPV-positive tonsillar cancer.  Jo-Anne proudly partners with the Oral Cancer Foundation in conveying the urgent need for changing the way in which we screen for oral cancer to meet the needs of today’s population. Her frank and open style of lecturing complemented by the provision of clinical resources has earned many loyal followers. 

We all hope that we never lose a loved one to oral cancer, but too often it happens. Sometimes there are a series of events that conspire to delay discovery and diagnosis, allowing the cancer to become much more invasive and difficult to cure. Even if that is possible, the morbidity associated with what are by any definition difficult treatments can be substantial. In this podcast we diverge from our science based informational format to speak with someone who has suffered that loss, oral cancer activist Rebecca Bencal who lost her twin sister Venessa to the disease. While this conversation goes through some of the issues related to treatments, there is a bigger take away in it. Learn what fueled her passion to speak about oral cancer, and why early discovery is so important. Understand why in today's environment, when oral cancer screening is still not a national policy, or a part of examinations in every dental office, being your own advocate and  being informed about risk factors and early signs and symptoms is paramount. This isa story of loss. It is also a conversation about what we can do to make this situation better in America.