share your story - Cervivor

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:

Get Informed: Learn about HPV, its risks, and the importance of vaccination and screening. Share this knowledge with others to help spread awareness.
Get vaccinated: The HPV vaccine is available for both males and females and can protect against certain types of HPV that can cause cancer.
Get screened: Regular cervical cancer screening can help detect abnormal cell changes early, when they’re easier to treat.
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.

As Hispanic Heritage Month ends, I find myself reflecting not just on our vibrant culture and history but also on an issue that deeply affects our community—cervical cancer. This preventable disease continues to claim the lives of too many Latinas, both in the United States and across Latin America. As a survivor, advocate, and member of the Cervivor community, this is personal to me, and it’s personal to so many of us.

Cervivor Español members during the 2024 Communities of Color Cervivor Care’s community outreach day

Cervical cancer is one of the few cancers that can be prevented through vaccines and regular screenings like Pap tests and HPV tests. Yet, Hispanic women in the U.S. face alarming disparities when it comes to this disease. We are diagnosed with cervical cancer at higher rates than non-Hispanic women and are more likely to die from it. The reasons for these inequities are complex, but they are deeply rooted in unequal access to healthcare, language barriers, lack of information, and cultural stigmas.

The Disparities We Face

Did you know that Hispanic women in the U.S. are 40% more likely to be diagnosed with cervical cancer than non-Hispanic white women? And tragically, we are 26% more likely to die from it. This isn’t because the disease is more aggressive in our community—it’s because many of us aren’t getting the preventive care we need. Whether it’s due to lack of insurance, language barriers, or even the stigma surrounding gynecological health, too many Latinas are falling through the cracks.

Gilma Pereda, a fellow Cervivor Ambassador, puts it perfectly: “Cervical cancer affects many Latinxs in the U.S. This illness is pretty much preventable with vaccination and regular screenings. Still, many people don’t have enough information to care for their health properly.”

Patti Murrillo-Casa, another Cervivor Ambassador, emphasizes the importance of advocacy: “It gives me the opportunity to give a voice to the voiceless, especially those who are underrepresented.”

This lack of information and access to care is something we must change—not just for ourselves, but for future generations. Our community faces unique challenges, and many of us don’t feel comfortable talking about things like HPV or cervical cancer. But these conversations are crucial if we want to save lives. Our mission is clear: we need to bring education and awareness to every corner of our community, in every language, and through every platform.

The Power of Prevention

What makes this so heartbreaking is that cervical cancer is largely preventable. The HPV vaccine can protect against the virus that causes cervical cancer, and regular Pap tests and HPV tests can catch abnormal cells before they become cancerous. Yet, many women in our community don’t know this. The lack of education and language barriers are major issues that prevent the information from getting out, compounded by the stigma in our community.

Yvette Torres, shares: “I advocate because I’m still here!! After being diagnosed 11 years ago, I want to help end cervical cancer and educate others by sharing my story.”

Dulcely Tavarez brings a different perspective to this: “I promote cervical cancer prevention to help ensure that other women can maintain their chances of motherhood.”

This passion and determination reflect the heart of our advocacy. We are survivors, and we share our stories because we don’t want anyone else to feel alone on this journey. For many women, cervical cancer doesn’t just threaten their lives—it can also take away their ability to have children. These words remind us of what’s at stake.

Ending the Stigma

One of the biggest barriers we face in the Hispanic community is the stigma around cervical cancer and HPV. Many of us grew up in households where talking about sexual health was taboo, and for some, the idea of getting an HPV vaccine or a Pap test feels uncomfortable or even shameful. But here’s the truth: HPV is incredibly common, and getting tested or vaccinated isn’t something to be ashamed of—it’s a form of self-care, a way to protect yourself and your loved ones.

I’ve experienced this firsthand. As a survivor, I’ve seen the way stigma and fear can prevent women from getting the care they need. But I’ve also seen the power of community, of sharing our stories and breaking the silence. That’s why I advocate: because I don’t want my story to repeat itself in others. I don’t want anyone to feel alone.

A Call to Action

So, what can we do? First and foremost, if you have a cervix, make sure you’re getting your regular cervical cancer screenings. These screenings can literally save your life. The HPV vaccine is safe, effective, and a powerful tool in preventing cervical cancer. Talk to your doctor about getting vaccinated.

For healthcare providers, we need you to help break down the barriers that prevent our community from accessing care. Provide information in Spanish, offer culturally sensitive care, and work to make sure that every woman—regardless of her background—feels safe and empowered to take control of her health.

And for everyone else, let’s end the stigma. Talk about cervical cancer. Talk about HPV. Share your story or information with your friends, your family, and your community. The more we normalize these conversations, the more lives we can save.

KARLA CHÁVEZ, a civil engineer and amigurumi enthusiast from Honduras, is a seven-year cervical and thyroid cancer survivor and proud ostomate. As a Cervivor Ambassador and co-lead of the Cervivor Español community, Karla is dedicated to making a difference for women both in her country and globally. She was honored with the 2020 Brittany Wagner Social Media Advocacy Award and was named a Cervivor Champion in 2022. Karla represents Cervivor, Inc. on the World Health Organization (WHO)’s Advisory Panel for Living Recommendations and Systematic Reviews on Screening and Treatment to Prevent Cervical Cancer.