Navigating the Unseen Battle of Mental Health in Cervical Cancer

By Morgan Newman, MSW, Community Engagement Liaison

As the Community Engagement Liaison for Cervivor, Inc., I’ve had the privilege of supporting many individuals through their cervical cancer journeys. While treatment and physical recovery often take center stage, it’s crucial to recognize the profound mental, emotional, and psychological impact of cervical cancer, which can be overwhelming, isolating, and frightening.

Janice Le-Nguyen

At Cervivor—founded 20 years ago to support those affected by the disease—we don’t shy away from facing these challenges head-on. Many in our community say that the been-there-done-that understanding and solidarity they find here play a vital role in their healing.

Janice Le-Nguyen, a Cervivor celebrating four years of being NED (no evidence of disease) after Stage 1A2 cervical cancer, shares: “I am appreciative of finding the Cervivor community and finding pathways to not feel ashamed and that I can freely discuss HPV, the cervix, and all the ‘fun’ I went through.”

I felt the same way after surviving Stage III at 24. Getting involved with Cervivor and advocating for fellow survivors helped me reclaim my voice and purpose.

But the cervical cancer journey is complex. Emotional highs and lows are part of the experience. Here are some of the most frequent mental health concerns our community members face—and why it’s so important we talk about them openly, without judgment or fear.

Survivor’s Guilt

Feeling grateful to be alive while struggling with the aftermath of treatment can bring on guilt and self-doubt, especially when others faced tougher outcomes or didn’t survive. On average, about 10 women from our immediate Cervivor community die each year—and it never gets easier to say goodbye.

Cervivor’s “In Memoriam” graphic is a solemn tribute to many of the lives lost since the organization’s start.

These losses weigh heavily, but they keep us grounded in our mission to eradicate the disease. Rather than staying stuck in cycles of guilt, many of us find healing through action. 

That’s been true for Janice. “Through Cervivor, I realized that by sharing my story, I could inspire others to get screened, ask questions, and take charge of their health,” says the quiet but fierce advocate, who started local community outreach with Cervivor a few years back.

We encourage all survivors to share their Cervivor Stories when they feel ready—each one adds powerful momentum to our mission and gives hope to others. If you’d like to share your experience, consider filling out this questionnaire and submitting a photo.

Scanxiety and Fear of Recurrence

Scanxiety—a term widely used in the cancer community—describes the intense anxiety and fear that can build up around follow-up scans and tests.

Me during my metastatic recurrence.

As a metastatic/recurrent survivor, I know this feeling all too well. Nine years ago, I was given just a 7–9% chance of ever being cancer-free—and yet, here I am. Still, every new ache, pain, or side effect can feel like a potential sign of recurrence.

A supportive community makes a difference. In our Cervivor Facebook group, for example, many members openly share their experiences with scanxiety and offer practical ways they’ve learned to cope. Just knowing you’re not the only one feeling this way can bring relief. And as always, consult your health provider if symptoms arise.

Body-Related and Intimacy Issues

Changes to the body can deeply affect self-esteem and relationships. Radiation side effects, like needing a cane or wheelchair, can be life-altering. Invisible disabilities like lymphedema, ostomies, and hearing loss require constant management.

Survivors in our community, including Lead Cervivor Ambassador Carol Lacey and others like Lorie Wallace, Sara Johney, Gabrielle McCord, Mary Clarkson-Grubb, Sally Kwenda, Maria Franklin, Julie Groob, Karla Chavez, and Talitha Stempin, navigate these challenges with strength and grace. Tools like lymphatic compression gear, ostomy bags, and hearing aids become part of daily life and symbols of resilience.

These survivors’ courageous approach to life after cancer, despite visible and invisible disabilities, shows the strength and resilience within our community. Clockwise from top left: Carol, Lorie, Gabrielle, Karla, Mary, Talitha, Julie, Sara, Maria, and Sally.

Body changes can also affect physical and emotional intimacy. Survivors have bravely opened up about their experiences on the Cervivor Blog, and a recent CervivorTV video, hosted by Founder and Chief Visionary Tamika Felder and featuring Dr. Christina Wilson, a board-certified women’s health nurse practitioner, dives into navigating body image and sexual health. It’s a must-watch.

Depression

The trauma of a cancer diagnosis and treatment can trigger depression—a reality that affects up to 25% of cancer patients, according to the National Cancer Institute (NCI). Yet, only a fraction receive the mental health support they need. Left unaddressed, depression can slow recovery, weaken the immune system, and negatively impact survival.

Kyana Johnson

Cervivor community member Kyana Johnson, diagnosed with Stage IIIB cervical cancer at 26, has shared her mental health struggles on the blog. She found comfort in self-care practices like journaling, meditation, coloring, and listening to music. Seeing a therapist at least twice a week was especially transformative.

“It was some of the best conversations I’ve ever had,” recalled Kyana, now seven years in remission. “My therapist helped me make sense of a lot of my emotions.”

And she offers this encouragement to others: “Remember that you are worth it. You shouldn’t be ashamed to seek mental health advice when your anxiety or stress feels too heavy.”

I’m also inspired by survivors like Danielle Glick and Jessica Martin, who have become psychotherapists since their cervical cancer experience. Their journeys show how healing mental and emotional health can lead to purpose, helping others find strength during the most difficult times.

You Are Never Alone

Because cervical cancer’s link to HPV can carry stigma, many feel isolated. But within Cervivor, we work to break that silence. We notice when someone goes quiet, we reach out, and we hold space for each other—without pressure to always “be okay.”

Ultimately, connection is essential to mental health recovery. Healing requires both safety and vulnerability. By naming and normalizing our struggles, we build resilience—and a supportive community that truly sees us. As Kyana put it, joining support groups like Cervivor helped her mental well-being because “they got it.”

Our mantra is simple: You are never alone. Whether through private groups, monthly support meetups, or personal check-ins, there is always a place for you here.

Ready to build meaningful relationships and support others in their cancer journeys? Join our monthly Creating Connections virtual meetup, designed for cancer patients, survivors, and thrivers. This supportive community is a safe space to share experiences, find resources, and connect with others who understand. Register for our next virtual meetup today.

About Morgan Newman, MSW

A resilient young adult (AYA) cervical cancer survivor, social worker, and dedicated patient advocate, Morgan has transformed her experience into a powerful force for change. After overcoming metastatic and recurrent cervical cancer at 24, she became a Cervivor Ambassador in 2017 and has since led global advocacy efforts. Her leadership roles include Community Engagement Liaison at Cervivor, board member for Above and Beyond Cancer and the Iowa Cancer Consortium, and Iowa State Lead Ambassador for the American Cancer Society Cancer Action Network (ACS CAN). She also serves on the Iowa Immunizes Coalition and as a patient advocate for the NIH’s Enduring Guidelines and Extended Genotyping Panels, and the NCI’s Patient Advocacy Steering Committee and Cervical Task Force. Morgan’s work has earned her awards and recognition, solidifying her as a leading voice in the fight against cancer.

AANHPI Communities and Cervical Cancer: Breaking Cultural Silence to Save Lives

In the first of two blog posts for AANHPI Heritage Month, cervical cancer survivors and experts highlight the dangers of staying silent when a disproportionate number of lives are at risk.

Asian American and Native Hawaiian/Pacific Islander (AANHPI) communities are the fastest-growing racial group in the U.S., now totaling over 24 million people—about 8% of the population. This diverse group includes millions of Chinese, Filipino, Vietnamese, Japanese, and others, and is projected by the U.S. Census Bureau to double by 2060.

While “AANHPI” may be a useful acronym for these distinct communities, it’s not the only thing they have in common. They also share a serious health concern: Cancer is the leading cause of death among Asian Americans and the second-leading cause for Native Hawaiians and Pacific Islanders, according to the American Cancer Society (ACS).

Cervical cancer, in particular, demands urgent attention. At first glance, non-Hispanic Asian American and Pacific Islander women appear to have lower cervical cancer rates than other racial and ethnic groups: 6 cases per 100,000, compared to 10 for Hispanic women, 8.4 for non-Hispanic Black women, and 6.9 for non-Hispanic white women, according to the National Cancer Institute’s Surveillance, Epidemiology, and End Results (SEER) Program.

But a closer look at the numbers reveals stark disparities. Vietnamese women, for example, have a cervical cancer incidence rate of 18.9 per 100,000, while Laotian women face an even higher rate of 20.7 per 100,000—more than triple the overall AANHPI average.

[source: National Cancer Institute Division of Cancer Epidemiology & Genetics]

Mortality disparities are just as alarming. Native Hawaiian and Pacific Islander women experience death rates up to 3.3 times higher from cervical, stomach, and uterine cancers than white women—even though their overall cancer mortality is 7% lower.

These disproportionately high rates are often fueled by a mix of cultural beliefs and stigma about “below the belt” cancers, language barriers, lower general awareness of the human papillomavirus (HPV) and cervical cancer risks, and other factors. As a result, HPV vaccination and screening rates are lower—key tools in Cervivor, Inc.’s mission to eliminate cervical cancer

“Despite their growing number, Asian Americans have long been overlooked in health disparities research,” says Dr. Ha Ngan “Milkie” Vu, Assistant Professor at Northwestern University’s Feinberg School of Medicine. A Vietnamese immigrant, Dr. Vu leads Project HERO, which tests culturally tailored digital tools to increase HPV vaccination among Vietnamese Americans. She elaborates: “The ‘model minority’ stereotype (i.e., overemphasis on Asians’ ability to overcome hardship and succeed in America) masks real gaps in health equity, especially when it comes to issues like cervical cancer.” 

To understand the personal toll of cervical cancer on the AANHPI community—and what is needed to break the “culture of silence” many experience—let’s start with the story of Filipina-American survivor Arlene Simpson.

Arlene’s Story

Arlene and her father, who worked in the medical field like many in their family.

Arlene, a financial services professional and church leader in Bothell, Washington, grew up in a family of healthcare professionals—yet no one ever talked to her about HPV. “I didn’t even get my first Pap test until after I gave birth at 22,” she recalls.

Her crash course in cervical cancer began in August 2021. “During the pandemic, I missed all my annual exams and waited to see my doctors again,” she explains. At her eventual Pap and HPV test, her gynecologist discovered hemorrhaging and immediately performed a biopsy and ultrasound. Although she had a history of abnormal Pap results, her symptoms—chronic endometriosis, dysmenorrhea, heavy bleeding, and pelvic pain—had always been dismissed as “normal.” A week later, the doctor called with the diagnosis. Arlene was stunned. “I never thought I’d get cancer,” she says.

She underwent chemotherapy, radiation, and brachytherapy at Seattle Cancer Care Alliance (now Fred Hutch) and the University of Washington Medical Center. Now, three years in remission, she continues follow-up visits every six months.

For Arlene, surviving cancer wasn’t just a physical battle—it was emotional, too.

“In our Filipino community, especially among the older generation, anything ‘below the belt’ isn’t discussed—especially sex or reproductive health,” she says. And when it is discussed, there’s often a lack of understanding about the causes of disease. After her diagnosis, she recalls one of her aunts saying, “How did you get that cancer? You were so wild and rebellious growing up.” The comment only deepened the shame Arlene was already feeling.

Overcoming Stigma in AANHPI Populations

Arlene’s experience resonates with others in the Cervivor community, including Joslyn Chaiprasert-Paguio, who is of Chinese and Thai descent, and Anna Ogo, who is Japanese.

Joslyn, a medical journal publisher and mom from Menifee, CA, says, “The pressure to stay silent about reproductive health made it even harder to find my voice. Cervical cancer became even more taboo because it’s ‘below the belt.’”

Anna, who lives in Kent, WA, with her husband and their “Cervivor Baby,” 18-month-old Eito, adds, “Sharing my story became a source of healing. As an Asian woman, breaking the silence around reproductive health helped me process grief, connect with others, and inspire hope.”

Dr. Zhengchun Lu, a cancer pathologist and resident physician at Oregon Health & Science University, says stigma and misinformation about HPV remain common in many AANHPI communities. She recalls one Asian American patient’s reaction to an HPV diagnosis: “It must be my husband.” For Dr. Lu, this reinforced how shame and blame still surround HPV—a challenge she actively addresses in patient care and community outreach, where she emphasizes that HPV is extremely common and not a reflection of a person’s behavior or character. 

“By fostering open, judgment-free conversations, we can help people feel safe, informed, and empowered to take charge of their health,” she says. As part of her work, Dr. Lu introduces cervical cancer screening in relatable terms—comparing Pap and HPV tests to routine checks like blood pressure or cholesterol screenings.

Anh Le with her parents on her medical school graduation day.

While stigma is widespread, it is not universal across AANHPI communities. Anh Le, born in Vietnam and now living in Phoenix, Arizona, shares a different experience. Diagnosed at age 30 in 2018 while attending medical school in Chicago, she didn’t face judgment from her family—but she did hesitate to tell them.

“When it came to fertility goals, the hopeful anticipation of having grandchildren was a topic that my mother often talked about,” shares Anh, who is an only child. “I was afraid of disappointing them.”

To her relief, Anh received nothing but “immense love and support.” And she credits her parents’ self-sacrifice during her two-month recovery from a total pelvic exenteration—a major surgery removing all pelvic organs, as described in a recent Memorial Sloan Kettering Cancer Center article—and especially her mother’s cooking, which “single-handedly nourished me back to health.”

How Cervivor is Empowering AANHPI Survivors

Today, survivors like Arlene, Joslyn, and Anna are powerful Cervivor Ambassadors for change. Arlene and Anna recently represented Cervivor at the 2025 Society of Gynecologic Oncology (SGO) meeting, where Arlene was a panelist. Joslyn serves on the ACS National Roundtable on Cervical Cancer and hosts the Cervivor Podcast.

Soon-to-be surgeon Anh reflects: “Being part of Cervivor helped me understand what it means to be both a patient and a future doctor. As a young AAPI adult with cervical cancer, it was lonely.” Her advice: “Don’t blame yourself. Be proactive. Make sure your care team aligns with your goals. And remember—there’s a community here to support you.”

Arlene credits Cervivor founder and Chief Visionary Tamika Felder for helping her find her voice. “When Tamika encouraged me to share my story, I saw its impact. Someone in Bulgaria heard it and got help. My Filipino cousins—some of them doctors—are now talking about the HPV vaccine. Cervivor gave me a platform and a purpose.”

Join the Cervivor Movement

Stories like Arlene’s, Anh’s, Joslyn’s, and Anna’s remind us that silence can be deadly—but sharing our voices can be lifesaving. If you’re ready to break the stigma, build community, and be part of the movement to end cervical cancer, sign up for updates about our next Cervivor School or join our next virtual Creating Connections meetup this upcoming June 10. Your story matters, and together, we can save lives—one conversation at a time.