As dental professionals, we make treatment decisions and recommendations based on research and evidence. As a registered dental hygienist of almost 27 years, it is the patients who continue to teach me some of the most profound and heartfelt lessons. Lessons on how to be a hygienist who serves from the heart and strives to make a difference in our profession, the world, and in the lives of patients. Lessons that cannot be learned in a textbook, through years of research, or by examining data.
Serving and working in the world of oral cancer, the stories and real-life experiences of those who’ve battled the disease are what motivate me to make a difference and create positive change.
We know it is time for positive change when one patient says she feels embarrassed because her cancers were caused by human papillomavirus (HPV), another remarks that it is important that people know her husband has been faithful after his diagnosis of HPV-OPC (oropharyngeal cancer), and a grandmother intimates that she isn’t sure how to tell family about her cancer diagnosis because it was caused by HPV.
Varied and honest statements from survivors
Being diagnosed with cancer and all that it brings is difficult enough—feelings of embarrassment or thinking an open, honest conversation can't be had is an additional burden no one should have to carry. When survivors are asked why they felt the way they did, their responses often relate to the stigma associated with HPV. And it’s true; there is a stigma in our society associated with HPV. While not everyone recognizes it, it does exist.
I surveyed HPV-OPC survivors to find out what their reactions were to being told that their cancer was caused by HPV. Were they hesitant to let others know the cause, or did they feel compelled to share about it as a way to educate others?
The responses I received were from both male and female survivors. They are varied and honest, and something we as providers need to be aware of:
- “I feel ashamed, but I shouldn’t be. I guess I feel judged. Yes, I’m cautious of who I tell.”
- “I felt dirty at first. My father always used to warn me about where I put my mouth. Should’ve listened … I share with anyone who asks.”
- “I was mortified to even have to tell my husband! I’d had cervical abnormalities … and that wasn’t embarrassing at all, but the thought of people knowing I had HPV-related throat cancer was too shameful.”
There were also respondents who felt empowered to share and educate about HPV and the HPV vaccine:
- “First feelings were of shame and guilt, but the doctor who told me I had cancer said it’s not your fault, the percentage of the population that has been exposed to HPV is large. Most clear it. You did not. I was hesitant to tell how I got it, but that has turned into educating my friends to be aware of symptoms.”
- “No stigma whatsoever. Not hesitant at all.”
- “I had squamous cell carcinoma (SCC) base of tongue cancer, which was HPV 16. I am going to make sure that my grandchildren are vaccinated. I have been open about the fact that my cancer was caused by HPV.”
- “Well, I don’t really feel ashamed that I got diagnosed with HPV 16. More shocked, as I always believed it was something you contracted through intercourse. Never imagined it could be contracted orally.”
- “I wasn’t hesitant to say HPV, but I was a little hesitant to explain to my parents and in-laws that it’s a result of oral sex. I really never explained that to them … Encouraged Gardasil shot to parents who had boys young enough to get it.”
Help normalize this very common viral infection
As dental professionals, we are in a unique position to have an impact in reducing the stigma and misconceptions around HPV. Education and knowledge are powerful, and we have the opportunity to provide current information about HPV when we perform the head and neck, oral, and oropharyngeal cancer screening/evaluation. Information on HPV and HPV-OPC can also easily be shared in office newsletters, on the practice website, and in social media posts. We can share factual and basic information about HPV from reliable sources to help us educate, raise awareness, and normalize this very common viral infection.
MD Anderson Cancer Center states, “HPV is a virus that is spread by intimate skin-to-skin contact. While most cases are sexually transmitted, people who haven’t had intercourse can become infected.” They also say that most people who acquire an HPV infection will not even know they’re infected and will never develop any symptoms. While most people will clear the virus before it causes any health problems, for some, the infection will persist and can lead to precancerous changes.1
The CDC tells us, “HPV infections are so common that nearly all men and women will get HPV at some point in their lives.”2 Further, “Oral HPV is transmitted to the mouth by oral sex, or possibly in other ways.”3
- “If you test positive for HPV, there is no sure way to know when you were infected with HPV, or who gave it to you. A person can have HPV for many years, even decades, before it is detected, or it develops into something serious like a cancer. In the vast majority of infected people, even with a high-risk version of HPV known to cause cancers, they will not develop cancer.”
- “Testing positive for an HPV infection does not mean that you or your partner is having sex outside of your relationship. It is believed to have long periods of inactivity or dormancy that may even cover decades; these are periods of time that you will test negative for it.”
One ongoing theme when talking to patients and survivors of HPV-OPC is that they wish they would have known about HPV, HPV transmission, and the signs and symptoms, and they want others to know about HPV and the vaccine. The comfort and ease providers have when it comes to HPV education is as varied as the feelings HPV-OPC patients and survivors have about the etiology of their cancer. Some providers will not discuss HPV or its transmission, others have no issue talking about it, and some are working on stepping outside of their comfort zones. The more knowledge we have about HPV, the easier it becomes to talk about and make a normal part of oral health education. As oral health professionals, HPV-OPC is “our cancer”; we must assume the responsibility of educating and raising awareness.
What is your comfort level when discussing HPV? What plan or office system does your dental team or DSO have in place to educate patients, the dental team, and the community about HPV, HPV-OPC, the HPV vaccine, and oral cancer?
I believe we can remove the stigma around HPV and help save lives by having a plan and system in place to educate the public about this very common viral infection.
- HPV. MD Anderson Cancer Center. https://www.mdanderson.org/prevention-screening/manage-your-risk/hpv.html
- About HPV. Centers for Disease Control and Prevention. https://www.cdc.gov/hpv/parents/about-hpv.html#:~:text=HPV%20infections%20are%20common&text=Nearly%2080%20million%20Americans%20are,someone%20who%20has%20the%20virus.
- HPV and oropharyngeal cancer. Centers for Disease Control and Prevention. https://www.cdc.gov/cancer/hpv/basic_info/hpv_oropharyngeal.htm
- HPV/Oral Cancer Facts. The Oral Cancer Foundation. https://oralcancerfoundation.org/understanding/hpv/hpv-oral-cancer-facts/