Survivor Voices

From Awareness to Action: Empowering Voices to End HPV-Related Cancers

Every year, over 600,000 people worldwide are diagnosed with HPV-related cancers, including cervical, anal, oropharyngeal, penile, vulvar, and vaginal cancers. In the United States alone, more than 14,000 women are diagnosed with cervical cancer annually. These statistics highlight the urgent need for awareness, education, and collective action—especially on HPV Awareness Day (March 4). The good news? Many of these cases and deaths are preventable.

The Facts About HPV

Human papillomavirus (HPV) is extremely common, with 80% of people contracting it at some point in their lives. Despite its prevalence, many people mistakenly believe that HPV only affects women. However, HPV can affect anyone, regardless of gender. One of the challenges with HPV is that it often has no visible symptoms, making it difficult to know if you have it.

While cervical cancer accounts for most HPV-related cancer diagnoses, cases of head and neck and anal cancers in both men and women are increasing. In fact, HPV is responsible for 60,000 cancer diagnoses in men each year. 

Although there is no approved screening test for other HPV-related cancers, for individuals with a cervix, cervical cancer screening can detect abnormal cells in the cervix that could develop into cervical cancer, while an HPV test indicates that the virus is present in the cervix. If you notice genital warts or have concerns about HPV, it’s essential to speak with your healthcare provider to detect and treat HPV early.

Expert Insights with Dr. Shobha S. Krishnan

Dr. Shobha S Krishnan is a renowned board-certified family physician and gynecologist with over 30 years of experience in primary care and women’s health. As the Founder and President of the Global Initiative Against HPV and Cervical Cancer (GIAHC), she has dedicated her career to combating cervical cancer and HPV-related diseases globally. Her work has taken her to various parts of the world, including rural India, where she has implemented innovative screening and treatment methods, such as visual inspection with acetic acid (VIA) and cryotherapy.

“Cervical cancer is something that we can almost completely eliminate by vaccination and screening. However, we should not even have one death, because we have the tools to prevent it.”

– Dr. Shobha S Krishnan, Future Science OA

Through GIAHC, Dr. Krishnan aims to educate providers, parents, and the public about the importance of HPV vaccination, screening, and early treatment. Despite the challenges faced in both developed and developing countries, Dr. Krishnan remains committed to making the HPV vaccine affordable, accessible, and acceptable to all. Her organization has partnered with various groups, including the American Medical Women’s Association, to raise awareness and promote education about HPV and cervical cancer. Her book, “The HPV Vaccine Controversy,” is a valuable resource for anyone seeking to understand the disease and the importance of vaccination.

Meet Morgan Newman: A Young Adult’s Journey with Cervical Cancer

At just 24 years old, Morgan Newman received the devastating news that she had stage III cervical cancer. Despite undergoing intense treatments, including chemotherapy, radiation, and a metastatic recurrence to her lungs. “I’ll admit, when I was a teenager, I was very hesitant to get the HPV vaccine. My mom begged me to get it, but I told her no because I was skeptical, and I told her it would never happen to me.”

Soon after Morgan entered the survivorship phase, she found her voice through the Cervivor community by attending a patient advocacy training. Now, 10 years later, she’s on a mission to raise awareness and empower others. Morgan proudly serves as Cervivor’s Community Engagement Liaison. “I’m lucky because I went in for a routine screening, and that’s how my cancer was detected. I’m lucky because my body responded to two journeys with cervical cancer.”

HPV-Related Cancer Survivors Share Their Stories

Quinn Billie Jo was diagnosed with stage III anal cancer, which severely impacted her quality of life. The tumor destroyed her sphincter muscle, causing severe issues like incontinence, and she is now scheduled for surgery, which will result in two colostomy bags, one for urine and one for fecal matter. Despite their resilience, Quinn faces the added burden of stigma surrounding anal cancer, often receiving uncomfortable reactions when sharing their diagnosis. Quinn would like to change that narrative.

Patrick, a penile cancer survivor, is advocating for increased awareness and conversation about human papillomavirus (HPV) and its link to male cancers. After being diagnosed with penile cancer in 2020, Patrick underwent life-altering surgery and treatment. He is now urging young people to get vaccinated against HPV and encouraging older men to speak openly about male cancers, emphasizing that conversations about penile cancer should be as normalized as those about breast cancer.

Ada, a 62-year-old single mother of two, was diagnosed with HPV-positive squamous cell carcinoma after discovering a lump on her neck, which she initially thought was a reaction to a bee sting. Following a series of medical appointments, biopsies, and surgeries, Ada underwent 33 radiation sessions and six rounds of chemotherapy. She credits the bee sting with saving her life, as it led her to discover the cancer. With the support of her loved ones, Ada successfully completed her treatment and rang the bell, symbolizing her triumph over cancer.

Teresa, a 40-year-old Black woman, was diagnosed with vulvar cancer after visiting her doctor about a persistent bump on her vulva. Despite her initial calm demeanor, Teresa’s world was turned upside down when her doctor revealed that the cancer was more aggressive than anticipated. After undergoing two surgeries, including a node dissection, Teresa was relieved to learn that the cancer had not spread to her lymph nodes. Now cancer-free, Teresa advocates for HPV vaccination, particularly among young Black women, who she believes are more vulnerable to the virus. She emphasizes the importance of early detection and encourages open conversations about vulvar cancer to combat shame and stigma.

A Call to Action: Eliminating HPV-Related Cancers

So, what can you do to help eliminate HPV-related cancers? The answer is simple: Every action counts, every voice matters, and every choice can make a difference. By taking control of our own health, sharing our stories, and supporting others, we can create a ripple effect that spreads far and wide. Here are some ways you can join the movement:

  1. Get Informed: Learn about HPV, its risks, and the importance of vaccination and screening. Share this knowledge with others to help spread awareness.
  2. Get vaccinated: The HPV vaccine is available for both males and females and can protect against certain types of HPV that can cause cancer.
  3. Get screened: Regular cervical cancer screening can help detect abnormal cell changes early, when they’re easier to treat.
  4. Share your story: If you or someone you know has been affected by HPV-related cancer, share your story to help raise awareness and support others.

The statistics are staggering, the stories are heart-wrenching, but the message is clear: We have the power to eliminate HPV-related cancers. By sharing our stories, educating ourselves and others, getting vaccinated, and getting screened, we can create a world where no one has to suffer from these preventable diseases.

“Our stories are powerful, but they’re so much more impactful as a collective voice.” – Morgan Newman

Let’s continue to break the silence, let’s shatter the stigma, and let’s unite in our quest for an HPV cancer-free future. Join the movement, share your voice, and together, we can make a difference.

Some Four-Letter Words Help Us Heal

HALT!

The word “halt” translates to “stop” in German. But HALT is also an acronym that stands for Hungry, Angry, Lonely, and Tired. Rather than letting our feelings run amok, HALT allows us to grab hold of the wheel and control what’s happening from the driver’s seat. 

The purpose of the HALT method is to help us feel better when we are feeling upset and it is often used when we are feeling emotionally off-centered. The HALT method addresses how our state of being and human needs might be linked to making hasty decisions – with words, actions, and thoughts. When one or more of these areas are out of balance, we will likely struggle with (mental) health and our overall well-being.

Let’s break down each letter of HALT:

The H stands for hungry:  It is well-researched that human behavior changes when we are hungry. Hunger causes us to value the short-term over the long-term and leads to hastiness with decisions. Chemicals in our brain also change to heighten anger when we are hungry.

If you discover the cause of not feeling well emotionally was hunger, you can take a momentary break from whatever you are doing, eat a handful of nuts or dried fruits, rest and enjoy them as much as you can, and allow your body and brain come back to baseline. As your body is coming back to baseline, you will think more clearly and feel calmer. This helps avoid hasty remarks and snappiness and alleviates uncomfortable moods.

The A stands for angry:  Anger can be an unpleasant and damaging emotion, but it is normal to feel angry – everybody does at one point or another.

Just because you feel angry doesn’t mean there is something wrong with you. However, feeling chronic, persistent anger is unhealthy and becomes a problem when you have a hard time letting it go and it seeps into other areas in your life.

Some heathy ways of coping with anger can include stress management, spirituality, prayer, and meditation. You may find it helpful to keep a record of the things or people that trigger anger. You can then reflect on whether your anger is justified and take the “heat” out of the situation.

The L stands for lonely: When we find ourselves cut off from contact with other members of our social group or community, we can feel lonely, which can be very unhealthy. It is no wonder that social isolation has made our social interactions more difficult during the pandemic.

When we are surrounded by positive influential people who we have a strong connection with, we are less likely to engage in negative behaviors. Of course, we can be lonely even when we are surrounded by a lot of people, but that makes meaningful relationships even more important.

Finding social groups that share similar interests as you is a good first step. Maybe your daily routine is causing you to retreat into your shell. If so, shake it up a little! Calling a friend or visiting a loved one might be just what you need. You can also simply go out in the world by taking a walk, running errands, or going to a coffee shop rather than hiding from everyone. Reach out and connect with others who want to see you happy and healthy.

The T stands for tired: Making sure we get enough sleep at night can help to improve not only our physical well-being but also our emotional health.

When we are physically and emotionally tired, we are more likely to engage in a negative thinking pattern. The amount of sleep we need varies with age, but the U.S. National Sleep Foundation’s guidelines recommend between seven and nine hours of sleep per night for an adult.

The quality of sleep is also important. The brain only “recharges” properly through Rapid Eye Movement sleep (REM). This high quality of sleep level can be hampered by drinking alcohol or caffeine-based drinks in the evening or by trying to deal with difficult issues late at night.

Screen use, including checking notifications on your tablet or cellphone, can also have a negative impact on your sleep. Remember that it is best to stop using screens an hour before going to bed. 

The HALT method is a wonderful reminder of the simplest things we often forget to do to take care of ourselves. Just check in with yourself periodically and ask how you are feeling in these four categories. Your check-ins can occur daily or weekly, while other times you may check in with yourself hourly. How often you use the HALT method is totally up to you! 


Jessica Martin was born in Germany and holds a M.Sc. in Psychology. She moved to the United States in 2018 and was diagnosed with cervical adenocarcinoma, stage 1B2 shortly after her move. Jessica is passionate about the mental health aspect of healing.