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Word of Mouth: Adventures in Oral Cancer Advocacy

jessicatar_headshotTo be a guest writer for the Head and Neck Cancer Alliance in recognition of Oral, Head and Neck Cancer Awareness Week® is an opportunity I am honored and compelled to have. Currently, at the age of 33, I Jessica Tar, am five years out from the most shocking moment my life has seen. In January of 2011 I was diagnosed with a squamous cell carcinoma, more widely known as oral cancer.

I never thought I would reach this level of advocacy, for in the beginning, I was very quiet. With the exception of my husband TJ, a few family members and my best friend, no one knew how I struggled and wretched over the news of oral cancer. I HAD IT. ME. I often think back to the time of my diagnosis. I really struggled with all of the associated stigmas and negative habits and all I really wanted was to distance myself, recover and move on; and maybe, if by chance the year was something like 2021, I could have. Another ten years past my experience and the world could have seen upwards of thousands of cases. I would have had less of a personal responsibility to raise awareness as these diagnoses would unfortunately be more commonplace. The course of my oral cancer timeline began in a year where there were only a handful of documented cancers, like mine, in the United States.

When I began to research my disease, the list of those affected bottomed out very quickly. I recall reading about endless tobacco users, and just one other woman, a teacher, who had been treated at the same hospital where I was to begin my care, Memorial Sloan-Kettering Cancer Center in New York City. It was there, when I first sat across from my new physician and surgeon, Dr. Jatin Shah, where he explained his perspective to me.  As Chief of Head and Neck Surgery and Oncology, Dr. Shah confirmed to me that as unusual as my situation seemed, the numbers of oral cancer patients with atypical origins were climbing. It was all happening much faster and quietly than my internet scouring would have had me believe. A case defined as atypical would most likely involve a young female in her twenties, who had never smoked, who does not have HPV (Human Papillomavirus) who logged miles of weekly lane swimming and would without question, live in a deep state of denial about ever being able to be reached by a cancer of the mouth; quite possibly, the deepest. Humor me as I continue to cope with that concept of distance again, because unbelievably, that female of the human species who contracted an oral carcinoma was me. So, hello, internet. Nice to meet you.

Eventually, when the void of information about the commonality of oral cancer was keeping me up at night, I agreed to do my first televised interview alongside Dr. Shah. I stammered and shook nervously during my attempts to talk, embarrassingly enough, through my own autobiographical phrases. That first day of my career as a public oral cancer advocate took on the appearance of a group therapy session, with better lighting.  As an actor, I had always pictured myself on camera smoothly reciting scripted lines about zombies or outer space or anything; besides this. My producer on that first news segment worked tirelessly for hours just to get a few measly completed sentences out of me. That experience that was granted to me will always resonate because at that point, though still devastated, I was in good health with the best care in the world and it was time to tell people about how I had gotten there.

During the time that I made progress to access the medical care that I needed, I was also plagued with hurdles of distraction, denial and misinformation, all of which played a role in delaying my final diagnosis. I believe that my success as a cancer patient is first due to the process of recognition on a basic level, that something in my body was not the same as it was and I was worse off. Secondly, comes the art of dismissing medical opinions that are presented as final truths and respectfully seeking out alternative opinions with an air of diligence and anticipation of inconvenience. This is always about the time when I reference the doctor who once looked at my tongue and prescribed me a mouthwash. Yes, I happily gargled and used oral gel for weeks before the euphoria lifted and I called on another professional, an oral surgeon; which brings me to my third point of never throwing caution to the wind. All your good hypochondriac friends will know.

JessicaTarMusic1logoIn the name of Oral, Head and Neck Cancer Awareness Week® (OHANCAW®), if there is a questionable area of your mouth, tongue, cheek or lips that is troublesome, tell your dentist or doctor immediately. Be descriptive and specific about pain, size and the timeline during which you noticed change. Always be vigilant with the care of your health and seek second opinions, if necessary. There are definite known risk factors of oral cancers including smoking, tobacco and alcohol use, as well as cases associated with HPV, however, it is extremely vital and unnerving to mention that there are many causes that are indeterminate.

JessicaMusic2As an advocate, as a human being, I feel an incredible pull to remain connected with current oral cancer research to study possible environmental factors and bring to light what exactly is causing cancers of the mouth which present in seemingly low- risk patients, like myself. The public needs to know, my daughters need to know, and I will continue to support research that will lead to preventative protection of oral cancer.

Jessica Tar
National Spokesperson for the Head and Neck Cancer Alliance

 

Jessica Tar lives in New Jersey with her husband Thomas Tar, their three daughters and two rescued dogs. In addition to her acting career, Jessica is a writer, artist, vocalist and instrumentalist, performing regularly with her band, Casting Shadows. She is a national spokesperson for the Head and Neck Cancer Alliance, was host of the 2015 IFHNOS (International Federation of Head and Neck Oncologic Societies) Opening Ceremony in New York City and is available for public speaking engagements. Jessica is also a certified American Red Cross Lifeguard and teaches YMCA swimming classes. See how Jessica stays above water by visiting her personal lifestyle blog at TheActiveReason.com