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Cultural Perspectives: Understanding the Impact of Cervical Cancer on Black Women

Cervical cancer is a global health concern that affects women of all races and ethnicities. However, when we look into the cultural nuances surrounding healthcare, it becomes evident that certain communities face unique challenges. 

Black women, despite advancements in healthcare, continue to face disproportionate rates of cervical cancer. The reasons behind these disparities are complex and rooted in a combination of socioeconomic factors, healthcare access, and cultural considerations. To truly understand the impact, we need to listen to the stories of Black women who have faced the challenges of cervical cancer head-on.

Impactful Stories of Black Cervical Cancer Survivors

Shondria’s Journey: Navigating Societal Norms: “Giving up my dream of having children with the man I loved and giving Romeo a sibling was one of the hardest things to deal with. After Matt and I got married, people automatically asked when were we going to have a baby. My son was from a previous relationship and Matt didn’t have any kids and I was hoping that later down the line if we were still together we would be able to have a child or 2. I even told my doctor that I didn’t want to give up my reproductive rights but I still chose the supposed better option. On March 27, 2008, I had my radical hysterectomy where they removed my cervix, the top part of my vagina, my uterus, my Fallopian tubes, and about 20 lymph nodes. I requested a copy of my surgery report that showed that the cancer was about 1 cm. Everything else was negative for cancer. Raising awareness is so important and I don’t know how many times at work I hear my female coworkers say they don’t think they need a Pap or they’re too afraid to find out if it’s bad news. Also, knowing your family’s medical history is so important! My mom never told me that other women in our family have had cervical cancer, ovarian cancer, and vulva cancer, which is extremely important to know. Knowledge is power!”

Urika’s Story In Overcoming Systemic Barriers: “Before starting my chemo treatments, my doctor at the time was having issues with my insurance to get my treatment started. She was beginning to get frustrated with my health insurance company because she wasn’t able to begin my treatments without approval. I received a call one day from my doctor saying, “Ms. Fraser. you are young and you have three kids to live for. I can no longer wait for your insurance to be approved. So my next step is to have you come into the emergency room and be admitted into the hospital.” At this point, I had no other choice but to believe in my doctor and do as I was told. I was checked in and admitted. I was mighty scared. My doctor came in and explained to me my chemo plan. She informed me the only way for me to begin treatment was for her to keep me in the hospital and bill my insurance later. After talking to me about my treatments, she brought in the doctor who would be doing my radiation treatments and he informed me he would be doing my radiation treatments for free. I stayed in the hospital for over a month and a half. I even celebrated my birthday in the hospital all while doing chemo and radiation. Eventually, I was released from the hospital and able to go home – not to my kids but instead to a family member’s house because my house was over an hour away from the hospital. I continued my treatments and eventually the tumor was no longer there. However, the cancer had spread to my lungs. I had to have a small piece of my lung removed and started chemo all over again – and this time I lost my hair.”

Felicia Fe Fea’s Advocacy: Empowering Through Education: “I had been experiencing heavier periods for numerous years, but thought nothing of it until in 2017 when the bleeding turned into flowing out like a water fountain and giant blood clots that would randomly fall out. I had gotten to the point of having to wear Depends. I was pale and weak. I kept advocating for myself by asking questions to my OBGYN and my advocating and questioning were ignored and minimized. I was told it may be hormonal and I might be going through menopause. Even though I had been with the same OBGYN for over ten years, who knew my history of abnormal paps and who had performed two LEEPs on me which supposedly burned off the precancerous cells, had never checked for cervical cancer. Instead, they told me to eat rare steak and liver to raise my iron levels, shot me up with hormones, and conducted an ablation on me going straight through my cervix. During my ablation, the OBGYN talked about how she had not seen anyone bleed so much during this procedure but when I questioned her she stated how much experience she had and how she had done 100’s of these. As I bleed I was sent home with no answers. I continued to basically hemorrhage for months. I couldn’t work because large blood clots would just fall out randomly and the Depends could not even hold them. The doctor kept trying to force me back to work and kept suggesting a hysterectomy with no real diagnosis other than the heavy bleeding. I was so weak and tired of wearing Depends so I decided to go along with the hysterectomy. I had labs done and my numbers were so low I had to have a blood transfusion before I could have surgery. Not once did my OBGYN say “Let’s check for cancer”; even knowing my history, as if I were an experiment (much like the Mothers of Gynecology Anarcha, Lucy, and Betsey). I had my transfusion and was off to surgery in March 2018. The surgeon contacted me and stated she would be sending my cervix and uterus to pathology because it was “torn up”. After that, I got the ‘you have cancer’ call. My entire cervix was a tumor and I had stage 2B cervical cancer that had moved into my uterus.”

Moving Forward

Understanding the impact of cervical cancer on Black women requires a holistic approach that addresses cultural, social, and systemic factors. It’s crucial to amplify these stories, cultivate open dialogue, and promote education within communities. By acknowledging the unique challenges faced by Black women, we can work towards creating a healthcare landscape that is inclusive, equitable, and supportive for all. We can break the barriers and ensure that no one is left behind in the fight against cervical cancer.

Are you a cervical cancer patient, survivor, or thriver that identifies as Black? Share your story at Cervivor.org! Then join our private group, Cervivor Noir to gain support and learn how your story can create change.

Black Women Take On Cervical Cancer

Teolita and her mom, Dr. Nina Rickenbacker Edwards

Teolita repeatedly told other women, “Do not let stigmas, lack of knowledge, or shame, prevent you from taking care of yourself. What I want all women to know is make sure you listen to your body and seek medical attention if something isn’t right.” She was a staunch believer that being assertive and advocating for yourself was half the battle around cervical cancer. Her mother, Nina, now carries on Teolita’s message. Teolita passed away in August 2019, after a five-year fight with stage 4 cervical cancer. 

Despite the fact that cervical cancer is preventable and treatable, the National Cancer Institute (NCI) estimated that 4,290 women would die of cervical cancer in the United States in 2021. As the country observes Black History Month, it is especially poignant to recognize the fact that Black women throughout the U.S. are dying from cervical cancer at a disproportionate rate, according to a January Human Rights Watch report entitled We Need Access.

Courtesy:

Getting to the root of health disparity 

This difference, linked with social, economical or environmental disadvantage, or health disparity, is posing a major concern for Black women in the state of Georgia, like Teolita who was never screened for cervical cancer, diagnosed at a later stage, and had a lower than five-year survival rate. 

While we at Cervivor are hellbent on focusing on surviving cervical cancer and thriving, we must look at the barriers, challenges and be laser-focused on the points that make some of us uncomfortable. Yes, we’re talking about economic, historic, and structural or institutional racism.

Here’s the breakdown of how Black women are impacted, disenfranchised, and disproportionately impacted: 

  • Healthcare affordability and access
  • Lack of comprehensive sexual health education
  • Historic mistreatment of people of color, particularly Black people, by the healthcare community

HRW women’s rights researcher Annerieke Daniel, said, “We really have to look at the result of racism and discrimination in the health care field and especially looking at gynecological care, which we know is rooted in abuse and exploitation of Black people, of Black women, of Black bodies.”

How can we make a meaningful difference?

  1. Help increase screening rates. Increasing screening rates could greatly reduce deaths from cervical cancer among Black women, Hispanic women, and other underrepresented communities. This requires the delivery of interventions directly to underserved women such as screenings based at accessible locations closer to their places of residence – such as via mobile vans and/or screening locations at local community centers instead of medical clinics. This can substantially lower cervical cancer mortality rates through early detection.
  2. Encourage HPV vaccination. (Watch and Share Chellese’s Video: https://youtu.be/2ORHPF6lcBk).
  3. Encourage clinical trial participation.A lack of racial and ethnic diversity in both cancer research and the healthcare workforce is one of the major factors contributing to cancer health disparities, according to the American Association of Cancer Research. Clinical trials lead to the development of new interventions and new drugs. They are used to make better clinical decisions, but there is often a significant underrepresentation in clinical trials by non-White races and ethnicities. With a focus on targeted therapies and precision medicine, representation in clinical trials is increasingly important so that research includes and reflects all groups. Where to start? Share links to www.clinicaltrials.gov – where clinical trials are listed and searchable by location, disease, medicine, etc.

Gladys knows all too well the struggle of health care challenges as a Black woman. Before she was diagnosed with stage one squamous cell carcinoma in 2013, she had to demand medical attention, she said.

“I went to have my annual physical exam and requested to have a Pap smear. The physician did not want to give me one, according to the guidelines, stating that I was not required to have a Pap smear,” said Gladys. “I insisted that I have one and reluctantly, he gave me one. A few days later, the physician called to tell me that I needed to see a gynecologist. My test came back abnormal. I made an appointment to see my gynecologist. He did an exam and told me I needed to see an oncologist. The oncologist said I had stage I cervical cancer.”

The advocacy and support required is the very reason Cervivor exists. It also exists to educate everyone – whether they are diagnosed or not, whether they know someone with cancer, or not, and no matter how they identify – about cervical cancer and its prevention.

Black women helping to change the course and legacy of cervical cancer

One of those lessons includes the impact of Henrietta Lacks whose cells were used in groundbreaking cancer research. Lacks, a Black woman, was 31 when she lost her battle with cervical cancer in 1951. Despite her passing, she posthumously helped advance cancer research. Her cells, referred to in the medical field after Lacks as “HeLa” cells were cultured from her tumors, survived and multiplied outside her body thus contributing to medical breakthroughs including the development of several treatments and vaccines, including the HPV vaccines. Despite the fact that doctors did not tell Lacks’ family that her cells were being cultured, the groundbreaking effort is a notable moment in Black history. 

Chellesse Parker, was diagnosed at 29 and years later is thriving. One thing she made sure of during her own journey, was to ensure her daughter is armed against cervical cancer despite the challenges facing Black women. 

“There are a lot of things I can’t protect her against but this is something that I can prevent,” she said.

Research tells us that when cervical cancer is detected and treated early enough, women have a 93 percent five-year survival rate. We like these numbers and must rid ourselves of the disparate stats harshly impacting Black women. Every woman deserves to be screened, to receive equitable treatment, and to know they have a fighting chance at being a Cervivor! Let’s fight collectively to protect, prevent and prevail!

Read more about Black women cervical cancer survivors who we honor, celebrate and appreciate. For more resources on cervical cancer, awareness, and representation connect with us on our social media platforms and Cervivor.org.

Black History Month and the Disparities Still To Overcome

As we discussed in an earlier post, advancements in the understanding of cervical cancer and the invention of the HPV vaccine are inextricably intertwined with Black History Month (February). Why? Because the “HeLa cells” used in groundbreaking scientific research were from the cells of Henrietta Lacks, a young Black woman who lost her life to cervical cancer in 1951 and whose cell lines have transformed modern medicine.

While HeLa cells were critical to the science that led to the HPV vaccines that have the power to prevent cervical cancer, today Black women in the U.S. bear a disproportionate burden of cervical cancer. Although  cervical cancer occurs most often in Hispanic women, Black women have lower 5-year survival rates and die more often than any other race.  In fact, they have nearly twice the cervical cancer mortality rate compared to white women. 

Why?

Interestingly, while most women with cervical cancer were probably exposed to cancer-causing HPV types years before, on average, Black women do not receive a diagnosis until 51 years of age. That compares to white women who have a median age of cervical cancer diagnosis at 48. Those three crucial years could make the difference between a treatable versus terminal cancer.

Why?

Researchers have reported that due to social and economic disparities, many Black women do not have access to regular screenings. Screening programs often fail to reach women living in an inner city or rural areas because of lack of transportation, education, health insurance, primary care providers who can perform cervical cancer screenings, or availability of nearby specialists for follow-on care.

How can we make a meaningful difference? 

The underlying causes of health disparities are complex and are multi-layers with lifestyle factors (obesity, cigarette smoking, etc.), socioeconomic factors (access to health insurance, access to healthcare providers), representation in research (clinical trials), and much much more. Yet there are still meaningful ways to make a difference.

Help increase screening rates.

Increasing screening rates could greatly reduce deaths from cervical cancer among Black women, Hispanic women and other underrepresented communities. This requires the delivery of interventions directly to underserved women such as screenings based at accessible locations closer to their places of residence – such as via mobile vans and/or screening locations at local community centers instead of medical clinics. This can substantially lower cervical cancer mortality rates through early detection.

The National Breast and Cervical Cancer Early Detection Program (NBCCEDP) has programs – and importantly, partnerships – in place across states, territories and tribal lands.

For example, in South Carolina, NBCCEDP has brought screening to underserved communities in collaboration with nonprofits and faith-based groups including The Best Chance Network and Catawba Indian Nation. In Nevada, programs with Women’s Health Connection increased screening numbers by 30%. Connect with your state’s screening programs. Share info about local screening programs and events. 

Encourage HPV vaccination

Encourage clinical trial participation

A lack of racial and ethnic diversity in both cancer research and the healthcare workforce is one of the major factors contributing to cancer health disparities, according to the American Association of Cancer Research. Clinical trials lead to the development of new interventions and new drugs. They are used to make better clinical decisions, but there is often a significant underrepresentation in clinical trials by non-White races and ethnicities. With a focus on targeted therapies and precision medicine, representation in clinical trials is increasingly important so that research includes and reflects all groups. Where to start? Share links to www.clinicaltrials.gov – where clinical trials are listed and searchable by location, disease, medicine, etc. 

During this year’s Black History Month, let’s work together to change the history of cervical cancer.

What Do Black History Month and World Cancer Day (Feb. 4) Have In Common?

Advancements in the understanding and treatment of cervical cancer are inextricably intertwined with Black History Month. Why? Because the “HeLa cells” used in the scientific research that generated the HPV vaccines were from the cells of Henrietta Lacks, a Black woman who lost her life to cervical cancer in 1951, at age 31.

Physicians at Johns Hopkins University, where Lacks was treated, cultured cells from her tumors for medical research (notably, without her or her family’s knowledge or consent). Her cells survived, thrived, and multiplied outside her body, so much so that they have been in continual use in labs around the world. HeLa cells have helped change the course of modern medicine, contributing to medical breakthroughs including the development of the polio vaccine, and treatments for cancer, HIV/AIDS, leukemia, and Parkinson’s disease. HeLa cells were also of course instrumental to the development of the HPV vaccines.

Today in America, Blacks face the highest death rate and lowest survival rate of any racial or ethnic group for most cancers. This is certainly true for cervical cancer. Although in the U.S. cervical cancer occurs most often in Hispanic women, Black women tend to have lower 5-year survival rates and die from the disease more often than any other race.  In fact, they have twice the cervical cancer mortality rate compared to white women, according to the American Cancer Society. Henrietta Lacks, through her children and grandchildren, is continuing to have impact and address disparities. 

The Henrietta Lacks Enhancing Cancer Research Act

A person standing in front of a brick wall Description automatically generated with medium confidence

Federal legislation focused on closing health gaps and improving access to clinical trials for people of color was signed into law in January 2021: the “Henrietta Lacks Enhancing Cancer Research Act” now mandates the government to reduce barriers to enrollment for underrepresented populations in federally-funded cancer clinical trials.

“While cancer impacts everyone, it does not affect everyone equally,” says Lisa Lacasse, president of the American Cancer Society Cancer Action Network. “The Henrietta Lacks Enhancing Cancer Research Act is critical to changing this reality, improving cancer outcomes and reducing health disparities in this country.” The newly enacted law builds upon Henrietta Lacks’ legacy by ensuring equitable access to advancements in cancer treatment for all people.

Learn More About Henrietta Lacks on World Cancer Day (Feb. 4)

In recognition of Black History Month (February) and World Cancer Day (Feb. 4) is a special virtual event: Henrietta Lacks’ great-granddaughter Veronica Robinson will host a conversation with the American Cancer Society Cancer Action Network’s VP of Federal Advocacy & Strategic Alliances, Keysha Brooks-Coley to discuss the new legislation, its importance and its intended impact on addressing some of the cancer disparities in our country. The event will be held Thursday, Feb. 4 at 1:00 PM ET on Zoom and Facebook Live.  Learn more and register.

Pioneering Moments in Cervical Cancer with Tamika Felder

Cervical cancer is a global health problem that disproportionately affects Black women. Statistics reveal that Black women are twice as likely to be diagnosed with and die from cervical cancer than White women. This disparity underscores the urgent need to address the systemic issues that contribute to unequal access to care and preventive screening that is necessary to eliminate cervical cancer.

In honor of Black History Month, we celebrate Cervivor Founder and Chief Visionary, Tamika Felder’s pioneering moments in cervical cancer awareness and advocacy. As a long-time cervical cancer survivor and internationally recognized patient advocate for cervical cancer prevention, Tamika has been a driving force in the fight against this disease. Her journey and advocacy have left an indelible mark on the cervical cancer community, inspiring change, health equity, access to care, and the creation of a community of patients and survivors sharing their lived experiences with others. 

Tamika’s tireless efforts have significantly contributed to the mission of ending cervical cancer once and for all. Founding Cervivor 19 years ago has not only brought survivors together but has also played a pivotal role in spreading awareness, providing education, and offering support to those impacted by this disease. Through her advocacy, she has amplified the voices of survivors and thrivers, ensuring that their stories are heard and their needs are addressed.

The recent Cervical Cancer Summit powered by Cervivor, where Tamika’s presence was felt, served as a testament to the impact of her advocacy. The summit brought together experts, researchers, healthcare professionals, family members, and patient advocate voices to discuss the latest advancements, challenges, and strategies in the cervical cancer space. The discussions and initiatives that emerged from this event have the potential to shape the future of cervical cancer awareness and prevention.

Tamika’s advocacy has also been instrumental in addressing the disparities in cervical cancer education, treatment, and prevention among Black women. Her commitment to empowering individuals with knowledge and resources, promoting early detection, and reducing the burden of cervical cancer in Black communities won’t stop.

Tamika’s story is a part of cervical cancer history. Her advocacy has not only raised awareness but has also paved the way for a future where cervical cancer is eradicated. As we share our stories we stand in solidarity with Tamika and work towards this shared mission.

Her story, your story, and our stories matter. Together, we can make a difference and create a world free from cervical cancer as we know it.

Empowering Change for Cervical Cancer Survivors

Give 8/28 is a national giving day dedicated to supporting Black-led nonprofits. Cervivor is sharing the incredible impact of your support on our mission to eradicate cervical cancer and improve the health outcomes of Black women and marginalized communities. 

At Cervivor, we are committed to addressing the disparities in cervical cancer education, treatment, and prevention among Black women. Our mission is to empower individuals with knowledge and resources so they have access to care, promoting early detection, and ultimately, reducing the burden of cervical cancer in our communities.

1. Diversity, Equity, and Inclusion: As Cervivior continues its longstanding commitment to diversity work with the addition of Kimberly William’s role as the Chief DEI Officer, Cervivor has expanded and developed four diverse private groups to provide a safe, relatable space for members to express how cervical cancer impacts their lives and their communities.

2. Advocacy and Education: Along with our premiere educational patient advocacy program, Cervivor School, and the Cervical Cancer Advocacy Retreat for Communities of Color, our team and dedicated volunteers have been working tirelessly to raise awareness about the importance of regular screenings and HPV vaccinations. By participating in community events, health fairs, and online campaigns, we aim to normalize conversations around all things cervical cancer.

3. Support for Cervical Cancer Patients, Survivors, and Thrivers: We offer emotional and practical support to those diagnosed with cervical cancer. From connecting patients with our support group, Creating Connections, to providing educational resources, we strive to create a strong network of empathy and care during their journey no matter where they are located.

Give 8/28 is a pivotal opportunity for us to expand our reach and amplify our impact even more. Your generous contribution on this day will directly enable us to:

  • Expand our educational initiatives to reach more communities.
  • Provide increased access to diverse, equitable, and inclusive spaces for those impacted by cervical cancer.
  • Strengthen our advocacy efforts to eliminate disparities in cervical cancer outcomes.

How can you help?

1. Donate: Visit our donation page on August 28th to contribute towards our Give 8/28 campaign. Your support, no matter the amount, will make a significant difference in the lives of those we serve.

2. Spread the Word: Share our mission and the importance of Give 8/28 with your friends, family, and colleagues across all social media platforms. Together, we can create a ripple effect of positive change.

3. Volunteer: If you’re passionate about cervical cancer and health equity, consider joining our team of volunteers. Your skills and time can contribute to making a lasting impact.

By supporting Cervivor on Give 8/28, you are directly contributing to our efforts to eliminate cervical cancer disparities within our communities. Together, we can achieve better cervical cancer outcomes for Black women and marginalized populations.

We thank you for your unwavering support. We look forward to standing beside you on Give 8/28 and beyond.

My Legacy, My Cervivor Footprint…In my Community

Cervivor is committed to closing the disparity gaps that have plagued communities of color for decades. In an effort to close those gaps, Cervivor invited cervical cancer patients and survivors from around the United States to participate in the Cervical Cancer Patient Advocacy Retreat for Communities of Color in our nation’s capitol, Washington D.C.

Why is this so important to our mission?
Research shows that while the rate of cervical cancer has been declining for decades in the U.S., health disparities persist. Hispanic women have the highest incidence rate of cervical cancer, followed by non-Hispanic Black women. Additionally, Black women are more likely to die from the disease than women of any other race or ethnicity. 

So, what is the consistent theme with these health disparities?
The consistent theme for these health disparities are health literacy and trust within the communities of color. As we navigated these themes, Cervivor ensured that each attendee:

  • Had a safe place to share their struggles, hurdles, and concerns in reference to their community and cervical cancer.
  • Was provided with information concerning cervical cancer, treatments, and screening. 
  • Understood their role as a trustworthy change agent in their community.
  • Embraced the opportunity to learn from various speakers and their fellow survivors about how they could utilize their voices to end cervical cancer in their community.
  • Developed a strategic plan to impact their communities specifically.
  • Made a commitment to assist in closing the cervical cancer disparity gap in their community.

It’s imperative that those impacted by cervical cancer have the knowledge and empowerment to lead the charge in changing the narrative for communities of color. Read the personal testimonies from a few of the attendees and the progress they have made since the retreat below.

Gwendolyn shares her thoughts on what this retreat meant to her:

“The Community of Color Retreat had great impact on my life and I have not been the same since. The moment I arrived at the retreat, I noticed everything was planned with so much love and hope, and personalized for us as a collective but also individually as well. We cried, we laughed, we learned, we inspired each other, we listened, and we gained confidence and much knowledge to not only advocate for ourselves but for others as well – within our families, jobs, and communities.“

Since the retreat, Gwendolyn has been instrumental in planning the National Patient Advocacy Awareness Day event with other Houston Cervivors and in co-leading an upcoming health fair for cervical cancer awareness.

Rosalinda shares her insights:

“For many of us, conversations easily continued into dinner, late evening, and early morning coffee meet-ups! We were clearly vibing and opening up to be vulnerable, witnessing and holding space for each other. Native American, African American, Asian, and Latina cervical cancer survivor’s coming together to listen, share, teach, and support each other was a powerful experience! My heart is filled with gratitude for how effortlessly this all unfolded. My most precious take away? Tamika’s loving challenge that following the retreat we step up and use our talents, abilities, gifts, unique perspectives to Do Something small or big, to end cervical cancer.“

After her retreat experience, Rosalinda has jumped in on National Patient Advocacy Day planning, joined as a Cervivor Español Outreach Committee Member, and continues to set goals for reaching low-income populations to ensure they have access to education, screening, and cancer prevention resources.

Janice gave us her thoughts too:

“Hope – grounds for believing that something good will happen. This retreat provided a breadth of information about studies on cervical cancer, as well as how to raise awareness in our communities. Discussing the health disparities across the nation opened my eyes that more needs to be done and that we need to be able to have open, sometimes uncomfortable dialogue to inform others so that they do not have to go through the same things that we did.”

Following the retreat, Janice has been spreading awareness about HPV and cervical cancer through various tabling events at her local college campus and by helping Cervivor raise funds during an early 2023 Kendra Scott Gives Back event.

Although the retreat has ended, the work does not stop. Each attendee made the commitment as a Cervivor Patient Advocate to assist in closing the cervical cancer disparity gap; by creating a culture of diversity, equity, and inclusion which includes supporting, educating, and motivating their communities that have been affected by cervical cancer.

It’s a great reminder that each day we all have an opportunity to provoke change by elevating our voices. We hold the power to save lives for generations to come. Help us continue to shine a light on these disparities by sharing our content with your networks.

Cervivor, as an organization, authentically embraces diversity, equity, and inclusion across all aspects, ensuring that individuals from various backgrounds feel valued, respected, and represented. The organization recognizes that diversity encompasses a wide range of identities and experiences, including persons with disabilities, religious or ethnic minorities, people of color, native/Indigenous peoples, women, gender identity, and sexual orientation.

Interested in learning more about future Cervical Cancer Patient Advocacy Retreats for Communities of Color? Connect with us at [email protected]!

Hello, My Name Is Kimberly!

Hey there Cervivor community!

My name is Kimberly Williams, I’m a recurrent cervical cancer survivor and Cervivor Patient Advocate that resides in the great state of Texas! I’m elated to join Team Cervivor as the Chief Diversity Equity and Inclusion (D.E.I.) Officer. 

When I was diagnosed with cervical cancer in February 2018, it made me realize that being a mom to my two children, a double Master’s recipient in Management and Healthcare Management, and devoting 20-plus years to social services did not lessen my chance to get this diagnosis. The moment that I found out I had cervical cancer my focus shifted to desiring information concerning this disease that invaded my body.

I was introduced to Cervivor by a Cervivor Ambassador in March 2018 after my radical hysterectomy. During this time I listened, watched, and learned from other Cervivors. I faced a recurrence of cervical cancer in 2019 which led me to advocate even more! I began to share my story with those within my reach (my community, my family, and my friends). That’s when I realized that my story as a Black cervical cancer survivor mattered. There was a diverse population who were not insured or underinsured, and not receiving cervical cancer screenings, but who were listening to my story and taking action. It became a mission for me to help these communities by providing support and knowledge, and also sharing my story.

In 2021, while participating in a Cervivor event, I found my voice and drive even more. I learned how to frame my message for different audiences. This brightened my light to make a difference in the underserved communities by sharing Cervivor’s mission through my story. In January 2022, I was in shock to be given the Cervivor Rising Star award. As I accepted the award I understood there were still grassroots efforts that needed to occur to reach those aforementioned communities.

In January 2022, I participated in the Cervical Cancer Summit powered by Cervivor. During this summit participants were encouraged to join the American Cancer Society Cancer Action Network (ACSCAN) to work to impact our local communities and share our cancer stories. Based on this encouragement, I joined the American Cancer Society Cancer Action Network of Texas as a volunteer, which opened doors for me to share my story during HPV awareness events at underserved elementary schools to parents inquiring about the HPV vaccine. I also was afforded the opportunity to share my story during an HPV Roundtable event hosted by the American Cancer Society. Throughout 2022, I continued to share my story at events because I truly understood that my story mattered.

In the summer of 2022, I was chosen as a patient advocate for NRG Oncology’s Cervix and Vulva committee that reviews concepts for clinical trials, which includes ensuring a diverse population participate in the clinical trials. In September 2022, Cervivor hosted their Cervivor School in Nashville, Tennessee and I was awarded the Cervivor Champion award. What a humbling moment in my cancer journey to be viewed as a “champion”.

As I pondered the word champion I found this definition, “a person who fights or argues for a cause” and I silently agreed. Yes, that’s me. That’s what this community stands for and Cervivor helped me locate that champion inside of me! 

This revelation reminded me that this cause is larger than me! No one should die of cervical cancer, however, they still do. Black women are statistically more probable to die from cervical cancer and Hispanic women have the highest rate to develop cervical cancer. I’ve made it my mission to touch all diverse groups, regardless of race, creed, color, or gender to ensure they understand the importance of their gynecological health and cervical cancer screenings.

This community was built and founded by a Black woman that understands the struggles that Cervivor’s diverse community members face. There is a common theme that you may hear from any Cervivor which is “no one fights alone.” As a Black woman that has watched a community of Black women not able to address their gynecological health due to lack of insurance, child care, money, or understanding; I understand that my voice matters and holds weight within diverse populations. I intend to amplify my voice through this position to aid in decreasing the cervical cancer inequality gap that statistics show us. How you may ask? By ensuring that the Cervivor community members and any cervical cancer patient, survivor and/or thriver is supported and armed with knowledge to assist in this effort.

Connect with me on LinkedIn!

If social media is not your thing, no worries I’ve got you covered! Email me at [email protected]. I would love to connect with you as we work together to end cervical cancer. Don’t be shy, tell me how we can help close this inequality gap. You are a part of the Cervivor footprint, your thoughts, involvement, and voice matter!

Let’s Talk About Below-the-Belt Cancers

When the calendar turns to September, it’s a good reason for anyone touched by gynecological cancer to share their story because September is Gynecological Cancer Awareness Month (GCAM).

For those of us in the Cervivor community, September is a significant opportunity to pull out our advocacy boots (and dust them off if they haven’t been used in a while), put below-the-belt cancers in the spotlight, and pick up our momentum to carry us through the remainder of the year. 

Why is GCAM so important?

  • Late-stage cervical cancer is being diagnosed at higher rates in the United States. Historically, cervical cancer has disproportionately impacted Black and Hispanic women. In this study, the overall prevalence of the disease was higher in Black women and there is a large increase in diagnoses for Non-Hispanic White women (CNN).
  • Uterine cancers are on the rise, especially in Black women. It is quickly making its way to becoming the third most common type of cancer among women (NY Times).
  • Fertility and quality of life are still impacting those diagnosed with gynecologic cancers (Oncology Nurse Advisor).
  • Intersectionalities in sexual orientation as well as race and ethnicity show significantly lower odds of undergoing routine cervical cancer screenings (Health Day).
  • Reducing social detriments can improve quality of life, increase survival rates, and close the gap in racial disparities (ASCO Post).

We know there are so many more to list which is why Cervivor continues to be actively engaged in gynecologic cancer awareness. We’re committed to sharing our stories, spreading awareness, and showing the people impacted by gynecologic cancers. We’re facing these disparities head-on!

How can you get involved this GCAM?

  • Share Cervivor content during GCAM. We will have plenty of graphics, articles, and other resources to share with your social media network, across all platforms. Make sure to follow us on Facebook, Twitter, Instagram, TikTok, and Pinterest.
  • Wear Teal and White on #TealandWhiteTuesday. Don’t forget to tag us on Instagram and post your photos in the comment of our Facebook posts!

  • Share your Cervivor Story. Have you shared your story with us on Cervivor.org? Sharing your story on our site is a powerful tool for getting your story out there. Our template guides you with questions, to help you share your cervical cancer story in a way that is personal to you. You can share as little or as much as you like. Once you have submitted your story and it is published, you will be able to share the link with others. Need help getting started? Send us an email at [email protected]!

  • Contact local media to share your Cervivor story. Many times, local news stations, newspapers, and neighborhood publications are looking for content. Reach out to them and share your story. If your story is on Cervivor.org, share the link with them when you reach out.

  • Host a Cervivor Meet-Up. Meet-Ups are local gatherings of Cervivors, networking and sharing in a social environment. You can hold a Cervivor Meet-Up in a coffee shop, restaurant, bar, or anywhere you feel is a welcoming and relaxed place for Cervivors to talk and share. If you’re interested in hosting a Cervivor Meet-Up in your area, contact us at [email protected]. *Cervivor recommends following the latest CDC recommendations for any gatherings.*

  • Become a Partner in Purpose. From care team to community member, your role in cervical cancer awareness, treatment, support, and prevention is of the utmost importance to us. Interested? Sign up here.

  • Donate to Cervivor or host a fundraiser on behalf of Cervivor.

We look forward to a successful GCAM and can’t wait to see how our Cervivor Community comes together to bring awareness to gynecologic cancers!

End Cervical Cancer Disparities in Communities of Color

August is Black Philanthropy Month! Join us today to give back to Black-led nonprofits. We’ll be highlighting the important work we’re doing in the cervical cancer space, members of our community, and ways we’re trying to eliminate disparities for Black women and cervical cancer.

Black women are impacted, disenfranchised, and disproportionately impacted by healthcare affordability and access, by lack of comprehensive sexual health education, and by historic mistreatment of people of color, particularly Black people, by the healthcare community.

“You know, we talk about breast cancer. So, we have to talk about below-the-belt cancers like cervical cancer, too. We have to show the faces of people who have cervical cancer.” – Tamika Felder, Founder & Chief Visionary, Cervivor, Inc.

We are addressing the disparities in sharing our stories, increasing screening rates, encouraging vaccinations, and participation in clinical trials. Research tells us that when cervical cancer is detected and treated early enough, women have a 93 percent five-year survival rate. 

We like these numbers and must rid ourselves of the disparate stats harshly impacting Black women. Every woman deserves to be screened, to receive equitable treatment, and to know they have a fighting chance at being a Cervivor! Let’s fight collectively to protect, prevent and prevail!

Start by donating to Cervivor today! Without generous donors and sponsors like you, none of this crucial work would be possible.

Redefining Patient Advocacy in 2022

When I was originally diagnosed in 2018, I decided that I wanted to recover from surgery and move on with my life. I didn’t want to hear the word “cancer” anymore. But in April 2019, my life changed as I was informed I had a reoccurrence of cervical cancer and I decided I wanted to be a change agent.

I started with my community by sharing my story with those connected to me via social media but in 2021 I felt like it just wasn’t enough. After speaking with the Cervivor community, I decided to redefine my patient advocacy in 2022. 

Here’s a snapshot of how my 2022 has gone so far:

January 2022 I participated in an interview with NPR (National Public Radio) in reference to cervical cancer among Black women that was aired in Georgia and via their social media handles. I also joined the Texas HPV Coalition to raise awareness as it relates to the HPV vaccine. 

February 2022 I was a panelist for the Black Women and Cervical Cancer Webinar hosted by Cervivor. My children and I were also a part of a PSA for HPV Awareness Day through the National HPV Vaccination Roundtable and Association of Immunization Managers that was featured on television and in physician’s offices in Tennessee and also via their social media handles.

March 2022 I completed volunteer training with the American Cancer Society which allows me to share my story locally through ACS CAN. I also completed a radio interview with Zakiya Jenkins who is based in Iowa in reference to cervical cancer in the African American communities. This interview was aired in Iowa and on Ms. Jenkins’ social media handles.

April 2022 I spoke at the Women of Color, Inc. brunch as it relates to cervical cancer among Black women, prevention, and early detection. I also spoke at YES Prep secondary school through the American Cancer Society where I shared my story and encouraged families to research the HPV vaccine.

May 2022 I spoke at Green Valley Elementary school through the American Cancer Society where I shared my story and encouraged families to research the HPV vaccine for their children. I was also chosen to be a Cervix committee Patient Advocate through NRG Oncology.

June 2022 I spoke at the HPV forum with the American Cancer Society, shared my story at a National Cancer Survivor’s Day event in Charleston, SC, and was a panelist for the Tigerlily Listening Summit powered by Labcorb, in which I shared my story and shared my experience as a patient including the disparities among African American women.

As a result, the last six months have blown my mind and have shown me just how much our stories have the power to create change. I encourage all of you to share your story. Be a change agent for this community and get active because you can redefine your advocacy in 2022!

Kimberly is the 2022 Cervivor Rising Star recipient, a joy-sparking, active member of the Cervivor community who is moving mountains. Thank you for all you are doing to end cervical cancer!

Observing Asian American and Pacific Islander Heritage Month

Happy Asian American and Pacific Islander Heritage Month! This month, we pay tribute to the generations of Asian Americans and Pacific Islanders who have shaped America’s history. Asian American and Pacific Islander Heritage Month originated with Congress in the late 1970s and is recognized and celebrated worldwide today!

We are celebrating by honoring some of our resilient Cervivors and continuing to spread awareness to reduce health disparities within the community but first, let’s take a look at some of the glaring statistics.

In 2022, the American Cancer Society released their Cancer Facts & Figures report stating the rates of new cancer cases and the rates of cancer deaths among Asian Americans, Native Hawaiians, and Pacific Islanders varied widely, mostly because of significant differences in exposure to cancer risk factors.

Of these findings, they found that:

  • Cancer is the leading cause of death in the Asian and Pacific Islander population in the US.
  • In 2022, an estimated 14,100 cases of invasive cervical cancer will be diagnosed and about 4,280 deaths will occur in the US.
  • Large variations in cancer occurrence within the API population reflect diversity in terms of geographic origin, language, acculturation, and socioeconomic status.
  • According to the US Census Bureau, in 2020, 20% of Black and 17% of Hispanic/ Latino populations lived below the poverty line, compared to 8% of non-Hispanic White (White) and Asian populations.
  • In addition, in 2019, 10% of Black and 19% of Hispanic/Latino populations were uninsured, compared to 6% of White and 7% of Asian populations.
  • Cervical cancer incidence rates among Cambodian, Vietnamese, and Laotian women decreased dramatically from 1990 to 2008, a change that has been attributed to increases in screening and treatment in these groups.
  • The use of the Pap test within the past 3 years is highest among Filipino women (83%, the same rate as in non-Hispanic whites), and lowest among Chinese women (66%).
  • The 5-year relative survival rate for cervical cancer is 66% overall, but ranges from 39% for Black women 65 years of age and older to 79% for White women under 50, and from 92% for localized-stage disease to 18% for distant-stage.

Meet some of the Asian Americans and Pacific Islanders in our Cervivor community who want to change these statistics!

Meet Arlene, a Washington state Cervivor who recently shared her story to help make a difference in her community. She says, “In honor of Asian American and Pacific Islander Heritage Month and Mental Health Awareness Month, I am humbled to share Part 1 of my cervical cancer journey! It’s time to RISE UP and be a voice! I am no longer ashamed!”

Meet Gina, a cervical cancer patient residing in Maryland. She just learned a year ago about her cancer diagnosis less than a week after turning 32, and 13 weeks after learning she was pregnant. Hear directly from Gina as she shares her story in our CervivorTV video below – We know you will appreciate, empathize with, and want to share with your networks.

We are also super excited to highlight California Cervivor, Joslyn Chaiprasert-Paguio. We love Joslyn because of her energy and advocacy, and if you’ve listened to the first episode of Season 2 of the Cervivor Podcast, you know we are happy to announce that she will be taking over as the host of the podcast! Joslyn will be bringing a new perspective as a Gen Z-er and as a recurrent cervical cancer survivor. Join us in wishing Joslyn success in this new role and get ready for a new season of robust conversations to help us cope, heal, learn and thrive. Don’t forget to visit the Cervivor Podcast on your preferred listening platform and subscribe to get alerts about new episodes!

The Asian culture rarely discusses below-the-belt talk, awareness of, and the knowledge of how important their checkups with their healthcare providers are and they are highly underrepresented in our public health data, however, storytelling has made a difference in the population by increasing the awareness of HPV, cervical cancer prevention screenings, and vaccination. Studies have shown an increase in a more positive outcomes in health data.

Beyond Arlene, Gina, and Joslyn’s stories, visit Cervivor.org to meet other cervical cancer survivors repping the Asian and Pacific Islander communities and share their stories this month with your networks!

What’s your story? Are you a cervical cancer survivor? Your story matters. Share your cervical cancer story and make a difference. Click this link to follow our easy-to-use template.

Hispanic Heritage Month

Did you know that Hispanic/Latina women have the highest incidence rate of cervical cancer in the U.S.? They undergo significantly fewer Pap tests than non-Hispanic white and black women and are less likely than women of other races/ethnicities to return for recommended follow-up after an abnormal Pap test.

These statistics from the American Cancer Society and Centers from Disease Control (CDC) are instructive to us at Cervivor to guide some of our educational efforts.

National Hispanic Heritage Month (celebrated Sept. 15 – Oct. 15 to correspond with the independence of many countries in Central America) honors Hispanic history, culture and contributions. Communities across the country mark the month with festivals and educational activities.

We want to halt cervical cancer in its tracks, in America and around the world. To do that most effectively, we need to be aware of the disparities in cervical cancer incidence and mortality among populations of women. 

For example, in the U.S., black women (followed by Hispanic women) have the highest death rate from cervical cancer. Mortality (death) rates of cervical cancer among Hispanic women are 50 percent higher than those of non-Hispanic women, and incidence rates among Hispanics are twice the rates of non-Hispanic women. Different populations bear different burdens of this disease, for different reasons.

Data from the American Cancer Society show that Hispanic women are less likely to get regular Pap tests. Hispanic and Latino Americans amount to an estimated 17.8% of the total U.S. population, making up the largest ethnic minority. This makes it a focus for our educational messages about cervical cancer prevention with Pap testing, HPV testing and HPV vaccination. This makes it a focus for our advocacy, education and personal Cervivor stories. 

What can we do as Cervivors?

  1. Familiarize yourself with Spanish-language educational resources and share them as part of your education and advocacy work. There is a downloadable Spanish-language “foto-novela” from the American Sexual Health Association, for example, fact sheets from the National Cancer Institute and cervical cancer screening patient information sheets from the American College of Obstetricians & Gynecologists. (These and many more Spanish language resources are available here.)
  2. Join Cervivor Español: Private Facebook Group For Latina Cervical Cancer Patients & Survivors.
  3. Support local and national cancer control and prevention programs and policies aimed at decreasing disparities in cervical cancer mortality. For example: health reform efforts to reduce discriminatory practices against cancer patients and survivors; policies to include no-cost cervical cancer screenings and HPV vaccination as a mandated part of insurance coverage, and initiatives to expand HPV vaccination. 
  4. Support the National Breast and Cervical Cancer Early Detection Program (NBCCEDP): The CDC’s NBCCEDP provides uninsured and underinsured women access to no-cost screening and diagnostic services, as well as a pathway to cancer treatment. Support federal and state funding for this program. Advocate for more funding to expand the reach of this lifesaving program. 
  5. Share your story. We’d love to have more representation from Latina Cervivors on our site. Submit your story here and come to one of our Cervivor Schools to learn more about bringing education and advocacy to your community. 
  6. Share Cervivor content on your social media platforms. You never know who might need this information.

We are all bonded by this disease. We are all motivated to ensure that no one else has to go through what we’ve gone through. Let’s be aware of the racial disparities in cervical cancer, address them head on, and put our support, stories and voices behind programs that can change cervical cancer statistics and save lives. 

Let’s celebrate National Hispanic Heritage Month by recognizing the power and strength of the Latino community and to doing what we can to expand education about cervical cancer screening and prevention. 

A Call for Action & Education During National Hispanic Heritage Month

Did you know that Hispanic/Latina women have the highest incidence rate of cervical cancer in the U.S.? They undergo significantly fewer Pap tests than non-Hispanic white and black women and are less likely than women of other races/ethnicities to return for recommended follow-up after an abnormal Pap test.

These statistics from the American Cancer Society and Centers from Disease Control (CDC) are instructive to us at Cervivor to guide some of our educational efforts.

National Hispanic Heritage Month (celebrated Sept. 15 – Oct. 15 to correspond with the independence of many countries in Central America) honors Hispanic history, culture and contributions. Communities across the country mark the month with festivals and educational activities.

Educational activities? That sounds right up our alley as Cervivors!

Festivals? Preventing cervical cancer and saving lives feels like something to celebrate to me!

We want to halt cervical cancer in its tracks, in America and around the world. To do that most effectively, we need to be aware of the disparities in cervical cancer incidence and mortality among populations of women.

For example, in the U.S., black women (followed by Hispanic women) have the highest death rate from cervical cancer. Mortality (death) rates of cervical cancer among Hispanic women are 50 percent higher than those of non-Hispanic women, and incidence rates among Hispanics are twice the rates of non-Hispanic women. Different populations bear different burdens of this disease, for different reasons.
“I was diagnosed with Cervical Cancer stage IIB in 2008. I had not visited my GYN or had a Pap test for over 3 years. My mission now is to share my story to every woman especially Latinas, who are the most affected by this disease, and convey the message that my journey does not have to be theirs”. 
Patti Murillo-Casa

Data from the American Cancer Society show that Hispanic women are less likely to get regular Pap tests. Hispanic and Latino Americans amount to an estimated 17.8% of the total U.S. population, making up the largest ethnic minority. This makes it a focus for our educational messages about cervical cancer prevention with Pap testing, HPV testing and HPV vaccination. This makes it a focus for our advocacy, education and personal Cervivor stories. 

What can we do as Cervivors?

  • Familiarize yourself with Spanish-language educational resources and share them as part of your education and advocacy work. There is a downloadable Spanish-language “foto-novela” from the American Sexual Health Association, for example, fact sheets from the National Cancer Institute and cervical cancer screening patient information sheets from the American College of Obstetricians & Gynecologists. (These and many more Spanish language resources are available here.)


Join Cervivor Español: Private Facebook Group For Latina Cervical Cancer Patients & Survivors

  • Support local and national cancer control and prevention programs and policies aimed at decreasing disparities in cervical cancer mortality. For example: health reform efforts to reduce discriminatory practices against cancer patients and survivors (amen to that!); policies to include no-cost cervical cancer screenings and HPV vaccination as a mandated part of insurance coverage (hallelujah!), initiatives to expand HVP vaccination (yes!). 
  • Support the National Breast and Cervical Cancer Early Detection Program (NBCCEDP): The CDC’s NBCCEDP provides uninsured and underinsured women access to no-cost screening and diagnostic services, as well as a pathway to cancer treatment. Support federal and state funding for this program. Advocate for more funding to expand the reach of this lifesaving program. 
  • Share your story. We’d love to have more representation from Latina Cervivors on our site. Submit your story here and come to one of our Cervivor Schools to learn more about bringing education and advocacy to your community. 

Cervical cancer is preventable. Cervical cancer is colorblind. So are we at Cervivor. We are all bonded by this disease. We are all motivated to ensure that no one else has to go through what we’ve gone through. Let’s be aware of the racial disparities in cervical cancer, address them head on, and put our support, stories and voices behind programs that can change cervical cancer statistics and save lives. 

Let’s celebrate National Hispanic Heritage Month by recognizing the power and strength of the Latino community and to doing what we can to expand education about cervical cancer screening and prevention. 

From Crushed to Empowered: One Woman’s Story of Slow Recovery

Did you know that Black women have a higher incidence of cervical cancer and HPV? The road to recovery can be rocky, as Alegra found out. Read her story here to find out how she came to embrace survivorhood. – Tamika 

“At age 36 I was diagnosed with stage 1 cervical cancer. For treatment I underwent surgery and embarked on a slow and lengthy road to recovery.

The life-saving surgery eradicated the cancer but the radical procedure also launched me into full menopause at the age of 36. The relationships with my husband and daughter were altered immediately; I was no longer the same.

Alegra VirginaLearning about the diagnosis crushed me. The idea that I may not have a chance to see my teenage daughter graduate from high school and losing the essence of a woman was shocking. A dark cloud covered my family and took over our existence; for many years I felt paralyzed and unable to understand what was going on. Unaware of what to do and convinced that I could push through on my own, I chose silence and renunciation.

What I want other women to know is that recuperating from the physical aspects of the surgery wasn’t as dramatic as the emotional, psychological, and spiritual uphill battle. Outwardly all seemed the same but the inward devastation turned my world upside down. Nothing prepared our family for the immediate and long lasting effects of a radical hysterectomy.

Today I have a sense of empowerment to tell my story, recognize that I’ve been in denial for many years and I can acknowledge that I am a cervical cancer survivor! I am armed with the determination and the desire to assist other women, family members, and caregivers battle the personal issues related to cervical cancer.”
– Alegra

Raising Awareness to Build Health Equity

Health equity must be pursued relentlessly in communities of color including the Black community to address long-standing disparities and ensure the well-being of every individual. Achieving health equity includes dismantling systemic barriers, such as discriminatory practices, unequal access to quality healthcare, and socioeconomic inequities that disproportionately impact Black individuals.

Here are a few holidays and awareness campaigns to share with your networks during the month of June:

Juneteenth
Also known as Freedom Day or Emancipation Day, is an annual celebration observed on June 19th to commemorate the emancipation of enslaved African Americans in the United States. Originating in Galveston, Texas, in 1865, Juneteenth marks the day when Union General Gordon Granger arrived with the news of freedom, proclaiming the end of slavery in Texas, two years after the Emancipation Proclamation was signed. It has since become a significant cultural and historical milestone, symbolizing the triumph of freedom over oppression and serving as a reminder of the ongoing pursuit of equality and justice for all.

Caribbean American Heritage Month
Celebrated annually in June, is a time dedicated to recognizing and celebrating the rich contributions and vibrant cultures of Caribbean Americans in the United States. In conjunction with this important observance, it is crucial to shed light on significant health issues that affect the Caribbean American community, such as cervical cancer. Cervical cancer is a leading cause of cancer-related deaths among women in the Caribbean and Caribbean American populations. During this month, we’re raising awareness about the importance of regular screenings, early detection, and prevention strategies to combat cervical cancer and promote women’s health in the Caribbean American community. We can empower individuals to take proactive steps toward a healthier future.

National Black Family Cancer Awareness Week
An important week-long observance that aims to shed light on the disproportionate impact of cancer on the Black community and raise awareness about prevention, early detection, and treatment options. By addressing disparities in healthcare access and providing support networks, this initiative plays a crucial role in fostering resilience, advocating for equitable care, and ultimately working towards eliminating cancer-related disparities among Black families.

By implementing culturally sensitive care, increasing healthcare access and affordability, and prioritizing community empowerment including sharing personal stories, we can foster a future where every person in the community enjoys equitable opportunities for their best health and is free from the burden of historical injustices.

Are you a cervical cancer patient or survivor?
Add your story to our Cervivor Stories and help spread awareness of cervical cancer! Your story has the power to create change and it matters.

We Are Cervivor: Spirit Week 2023 Recap

Cervivor Spirit Week gives our community a chance to bring some fun to an otherwise serious topic of cervical cancer awareness and prevention. As our Cervical Cancer Awareness Month Committee Co-Chair, Jenn Myers says, “It can be a heavy topic but we are the voices that need to do this work.”

We definitely had a ton of fun with everyone this week as we splashed social media with so much teal & white awareness! We love how many people took notice, shared their stories, and joined in on our cause.

Cervivor Español unofficially kicked off the spirit week with a MeetUp on Saturday then we transitioned into the theme days starting on Sunday! Sports Day Sunday brought out all the sporty-Cervivors representing their favorite teams. Lisa Gopman reminded us to get our cervical cancer screening and vaccinate our kids against HPV all while showing off her Bengal pride.

There were so many great Movie Monday quotes from some classic Hollywood films. Kel Bel spent the weekend watching Harry Potter movies with her daughter while recovering from her hysterectomy and shared this Albus Dumbeldore line that hits her every time, “Happiness can be found even in the darkest of times, if one only remembers to turn on the light.” Mic drop.

Our Cervivor Noir and Cervivor API groups kicked off their inaugural MeetUps to further our commitment to diversity, equity, and inclusion for anyone impacted by cervical cancer. There were stories shared so powerful and we cannot wait to see the work they all do in furthering our mission to end cervical cancer. (If you identify as Black, join Cervivor Noir and if you identify as Asian or Pacific Islander, join Cervivor API).

On Talk to Me Teal & White Tuesday we asked you what Cervivor means to you and here’s what you shared with us.

“Cervivor means no one fights alone.” ~ Christy

“Cervivor means sharing our stories and using our voices to spread awareness and to end cervical cancer and to let other women know they are not alone.” ~ Brooke

You gave us all the cozy vibes on Warm Up Wednesday and Cervivors were sharing pics snuggled under blankets and some with their pets. Joy shared the unconditional love from her cat and Arlene was living the Wonder Woman Snuggie life.

Joy & her cat
Wonder Woman Arlene

The favorite food of choice on Tasty Thursday seemed to be none other than… tacos! They really are the perfect food! Sharing our tasty treats helped us get ready for Saturday’s amazing session, Cooking with Tracy Citeroni, who demonstrated a versatile, healthy and delicious quinoa ‘risotto’. You can grab the recipe here to cook on your own!

We even kicked off our first-ever Cervivor Book Club meeting by discussing Brene Brown’s Daring Greatly! As we headed into our weekend, we asked you to share your happy places on TGIFriyay. Sand, surf, mountains, lakes, fireside, wilderness trails, and museum strolls hit the top of your lists for joy-inducing places we like to be.

Phyllis captured magic in Hawaii
Kristine’s sunset
Amanda’s trail

And we ended this year’s spirit week with a favorite, Sock It To Cervical Cancer to bring out your favorite statement socks with a Cervivor flare!

New Cervivor socks!
Tasha
Rachel

Through this time, we continued to honor the joy and Cervivor spark of our late Cervivor sister, Jodi Madsen. Cervivor Spirit Week was one of her favorite things from last year and she was a master in fun content creation and social media advocacy.

We hope this week has inspired you to continue these ways of advocating throughout the rest of 2023. It is truly incredible to see the power of our community and it’s a great reminder that we are Cervivor and we are unstoppable!

PRESS RELEASE: Cervivor Founder and Chief Visionary, Tamika Felder Invited to Share Opening Remarks for First Lady, Dr. Jill Biden and the American Cancer Society’s Launch of The National Breast and Cervical Cancer Roundtables

WASHINGTON, D.C. – In February 2022, the American Cancer Society announced they would be launching two national roundtables: one for cervical cancer and the other for breast cancer. This was a response to President Biden’s call to action in reducing cancer incidence and death rates faster. This initiative is to bring together leading organizations and experts in the cervical and breast cancer space to drive progress and improve the lives of cancer patients, as well as their families.

The objectives of the national roundtables align with the President’s Cancer Panel’s report Closing Gaps in Cancer Screening: Connecting People, Communities, and Systems to Improve Equity and Access. 

The report addresses the need to:

  • Improve and Align Communication: Develop effective communications about cancer screening that reach all populations; and expand and strengthen National Cancer Roundtables that include a focus on cancer screening.
  • Facilitate Equitable Access: Barriers contribute to lower rates of cancer screening initiation and the recommended follow-up observed among many populations in the United States; there is a need to provide and sustainably fund community-oriented outreach and support services to promote appropriate screening and follow-up care plus increase access to self-sampling for cancer screening.
  • Strengthen Workforce Collaborations: Team-based care has the potential to improve implementation of cancer screening but in order to accomplish this, supportive policies and a commitment to team-based care approaches are needed which include the empowerment of healthcare team members to support screening plus having the opportunity for training and residency programs; and expanding access to genetic testing and counseling for cancer risk assessments to catch cancer early.
  • Create effective health IT: Providers and patients alike are faced with more information than they can process in a reasonable amount of time. Health information technology (IT) has potential to help providers, patients, and healthcare systems quickly access and effectively use clinical knowledge and patient-specific data.

Cervivor Founder and Chief Visionary, Tamika Felder was invited to speak on behalf of cervical cancer patient advocates and their families to increase awareness, impact change, and work collectively towards eliminating cervical cancer. Tamika and Cervivor, Inc. have been long-standing influencers on the panel since 2003, helping to provide vision as well as patient stories. She shares, “For me it is personal. My legacy won’t be the lives that I bring into this world but the lives I will save.”

First Lady Jill Biden attends an American Cancer Society Roundtable event, Monday, October 24, 2022, in the State Dining Room of the White House. (Official White House Photo by Adam Schultz)

Recording artist and cancer prevention advocate, Mary J. Blige shared the personal impact cancer has had on her family in recent years and why she has dedicated so much time to awareness. She phrases a key message, “I’ve dedicated time to making people understand their health is their wealth and urging them to make it a priority.”

American Cancer Society CEO, Dr. Karen Knudsen states, “We at the American Cancer Society represent all 1.9 million Americans that hear each year that they will have cancer and we are absolutely resonating with the goal of the Cancer Moonshot to end cancer as we know it.”

Dr. Karen Knudsen, Tamika Felder, First Lady Dr. Jill Biden, and Mary J. Blige

Dr. Knudsen also brings to light that breast cancer still remains to be the second leading cause of cancer death for women in this country and number one for Black and Latina women. 14,000+ women are diagnosed with cervical cancer and over 4,000 will die from the disease. Black and Latina women are again, impacted at nearly twice the rate as their Caucasian peers.

First Lady, Dr. Biden emphasizes there should be no woman left behind. There is an absolute need for collaborative efforts including the patient advocate voice because this impacts us all. The focus is to put patients and their families at the center of their cancer – from diagnosis to survivorship and we are rewriting the narrative of cancer.

“We don’t have to be afraid of cancer anymore!” 

First Lady Jill Biden bids farewell to singer Mary J. Blige, American Cancer Society CEO Dr. Karen Knudsen and cancer survivor Tamika Felder after an American Cancer Society Roundtable event, Monday, October 24, 2022, in the Red Room of the White House. (Official White House Photo by Erin Scott)

We stand with the First Lady, the American Cancer Society, and so many more leading organizations. We are committed to this mission as we are reminded of the daily impact in our community of a cervical cancer diagnosis, the treatment and difficulties in survivorship, and of those lives that have been lost from a preventable disease.  

Watch the full livestream recording here.

Honoring Culture & Making an Impact

Alexander Hamilton.
General Colin Powell.
Shirley Chisolm.
And Kadiana Vegee.

These Caribbean-Americans are worthy of a shout out, and Cervivor wants to shout from the rooftops Kadiana’s name because she is the epitome of beauty and pride. As we celebrate Caribbean-American Heritage Month, we want to share Kadiana’s survivor story which reminds us of true beauty.

Having lost her mother to ovarian cancer, and her father to prostate cancer, Kadiana and her sisters took genetic tests to learn where their own health stood. While her sisters were in the clear, Kadiana’s tests revealed the BRCA 1 gene mutation. She quickly chose to have preventative surgeries.

“I had a double mastectomy without reconstruction, and I also had to have my ovaries and my fallopian tubes removed,” explained Kadiana. “ … The decision that I made was not just for myself and to stay alive, but it was also for my kids.”

The most frequent cancers in the Caribbean are prostate, breast, lung and bronchial, colorectal, and cervical cancers, according to BMC Cancer journal. Further, the five most frequent sites for cancer deaths include lung and bronchial cancers, prostate, colorectal, breast and stomach.

To be specific, Black-Caribbean women have a high prevalence of late-stage breast and cervical cancer diagnosis due to a low prevalence of screenings, according to dignity, shame, stigma, or ignorance in avoidance of breast and cervical cancer screenings among women of Caribbean Descent, published by the Open Journal of Social Sciences. After conducting focus groups, researchers concluded that a lack of trust in the health system, stigma, and shame contributed to avoidance of cancer screening – all similar to what we see and experience for ourselves.

While Kadiana acknowledges cancer will “always be a part of my life, from the long lasting side effects to the constant fear of reoccurrence,” her fervor to thrive, her beauty and her pride in taking back her life can be seen, felt, and heard. We are elated to know that Kadiana is a Cervivor advocate willing to share her story, boast her war scars, and champion the need for rights, resources and self advocacy.

“It felt like a blessing because I knew and I had the option,” said Kadiana about making her decision. “I stand unashamed … It’s not how I look on the outside. It’s how I look on the inside, and I really do feel beautiful.”

Clinical Trial Awareness Month: Cervical Cancer Needs YOU!

That first season of a TV, Netflix, or cable series is a total experiment. Producers wonder how the characters will resonate with the target audience. Advertisers are hopeful that their two-minute commercials and ads are crafted well enough to bring in sales. And actors cross their fingers that fans love each episode more and more, and demand a second season. The result: a cult following of a show that lasts for years, providing viewers the comfort of entertainment and solace.

While it may be a stretch, we can think about clinical trials in the same way. This method of medical research, is in fact, a pilot program for scientists to experiment, test, and prove what works, and what can result in medical breakthroughs – again, for the comfort and solace of those impacted by health challenges like cervical cancer.

You may have heard us at Cervivor championing the dire importance of clinical trials. We continue to stress the importance as this is the only way we can pave a way toward slowing down the loss of members in our community, thriving without having to lose parts of our bodies, and ultimately eliminating cervical cancer.

We said it before:

  • We need clinical trials to drive progress.
  • We need trials to determine the safety and effectiveness of every type of treatment.
  • And in order to determine that safety and effectiveness, we need volunteers.

We choose not to subscribe to the stigma around being a “guinea pig” or a “test dummy.” Without clinical trials, treatment, diagnosis, and prevention efforts are slowed down. The effectiveness of new medication, treatment, and therapy can only be proven through trial – and yes, error. Take a look at the thousands of trials around the globe currently recruiting patients, in addition to those that are active, completed, and terminated with results. Thanks to people including several of our Cervivor community members like Teolita, Erica, Jenn, and Linda much more work is being done daily to make sure our community – and the generation after us, and after them – can thrive.

“I decided that if this clinical trial was good enough for Jimmy Carter, it was good enough for me!” – Teolita Rickenbacker

It’s important to note that Cervivor advocates for cultural competence throughout our medical journey, including in the clinical trials process – and we should all be looking out for this. This means, making sure that the medical community understands, and is intentional about how they communicate with a diverse audience of women, whether Black, Brown, young, mature, and those who speak a language not native to their medical team. It is super important that the medical community, including those coordinating trials, speak different languages, and understand the experience of those who are part of a focus group. This important aspect aids in building and maintaining trust with those participating, which, in turn, helps us trust in both the process and the expertise of trial organizers.

This process takes a lot of teamwork: scientists work on hypotheses, patients report on progress and challenges, and doctors monitor outcomes. The result: an increase in clarity, more answers, more awareness, more options, and longer lives. Have a discussion on clinical trials with your care team and support system. Learn more with these recommended resources:
https://www.webmd.com/cancer/cervical-cancer/cervical-cancer-clinical-trials
https://www.clinicaltrials.gov/ct2/home

If you have experience with a clinical trial and want to share it with us, contact us at [email protected].

The Cervivor Podcast: Season 1 Recap

In anticipation of the Season 2 release, we’re taking a look back on Season 1 of the Cervivor Podcast hosted by our very own Founder and Chief Visionary, Tamika Felder. It was a season where we laughed, cried, and learned from guests during Cervivor School 2017. We give honor and observance to those featured in these podcasts that are no longer with us. To be able to hear their voices, laughter and transparency is a special treat for us. We hope you think so, too.

If you haven’t listened to Season 1 yet, take a moment and do so now – currently available on Anchor.fm, Apple Podcasts, Google Podcasts, Pocket Casts, Radio Public, and Spotify.

Recap by Episode:

  1. Cervivor’s “Most Enthusiastic” awardee, shares all the things we wanted to know but didn’t want to ask in “Dry Panties, Depends, and Urine. What Does This Have to Do with Cervical Cancer?” Turn the volume all the way up and be proud as you listen to Holly Lawson talk about obstacles during diagnosis.
  2. “Everybody’s voice makes a difference,” says Erica Frazier Stum whose school-aged son knows his mother may be gone sooner than she should be. This podcast episode is a special treat hearing Erica’s voice posthumously who passed away in 2019.
  3. “Education 101: What is Lymphedema?” Heather Banks drops a few jewels around compression undergarments, drainage, swelling, and giving yourself grace when you just … can’t. 
  4. Balancing school, work, her grandmother’s dementia, and an unexpected stage 4 cervical cancer diagnosis, Teolita Rickenbacker says she found her calling amidst an overwhelming period. “It’s nothing wrong with having cervical cancer; it’s nothing wrong with having any kind of cancer. It’s just how you define it.” Listen to “The Will to Live: How Faith Got Her Through a Cancer Diagnosis.”
  5. In “Acceptance of Death: How She is Making Her Story Matter,” Lisa Moore shared her story of diagnosis, kidney failure, and coming to grips that once she passed, her 30-year-old husband would likely start a family with someone else. “I have accepted death. I’m done being stuck, I’m done being treated. I’m ready to just live my life … it’s a different kind of hope.”
  6. The aftermath of a car accident reveals Sierra Thetford has cancer, but despite a six-month prognosis to live, she sought solace in sharing her story and becoming a gym rat. Listen to “Wrecking into Cancer: How the Gym Became Her Refuge.”
  7. Lynn Tromp talks about cervivorship globally and being open to new experiences, “I trusted my medical doctor. He spoke to me with confidence. Even though it was a trial, he spoke to me with confidence,” said Lynn who lives in South Africa. Listen to “Cancer in another country: A Tell-all From South African.”
  8. In “Toxicity in Relationships: Coping with Cancer,” Dr. Ramani Durvasula talks with Tamika Felder about feminism, narcissistic relationships, and convoluted thoughts that we can experience during diagnosis and treatment. 

Season 2 of the Cervivor Podcast is moving past the archives. Join us on Friday, May 13, 2022 for the Season 2 Episode 1 release!

We’ll be welcoming our first guest, Joslyn Chaiprasert-Paguio. Joslyn was diagnosed with the Human Papillomavirus (HPV) at the age of 18 and with cervical cancer at the age of 24. She shares her story to encourage women and future generations, like her daughter, to advocate for themselves and make their health a priority. You’ll also hear what else you can expect on this Season of the Cervivor Podcast.

For more Cervivor-related content, check out our award-winning YouTube channel, CervivorTV. Follow Cervivor on all social media platforms and sign up for our newsletter. If you would like to be interviewed for upcoming Cervivor Podcast episodes or to request content or speakers for future episodes, fill out this form or contact us at [email protected].

21 Years of Cervivorship

Today, we’re celebrating a special edition of #TealandWhiteTuesday. Our Founder and Chief Visionary, Tamika Felder is celebrating 21 years of Cervivorship!

Tamika was just 25 years old when she was diagnosed with cervical cancer on April 12, 2001. She endured a hysterectomy stripping her of her fertility, followed by chemotherapy, and radiation. Cervical cancer changed her life forever. 

In 2005, she started Tamika & Friends, Inc. a nonprofit dedicated to cervical cancer survivors and their friends and family. At the time there truly wasn’t any support for cancer survivors and the Internet was just getting off the ground. Tamika needed support. She found the more she told her story, the more it reached other women. Tamika wanted to help empower others to share their stories and that’s how Cervivor was born!

But Tamika didn’t stop there. She understood her calling of living her life beyond a cervical cancer diagnosis. Over the years, she has continued to transform the lives of each person impacted by a cervical cancer diagnosis. Tamika not only empowers them to use their voice, but she teaches them that their pain can have purpose, and they have the power to create change.  

Here are a few things she’s learned as she looks back on her experience with cancer:

  • I was a survivor from the onset of my diagnosis. Each day is survivorship. Sure, there are huge milestones. The first year, the magical number 5. But what matters is each day is another day from the one before. 
  • No matter your faith (or lack thereof) cancer is scary. And it’s okay to be scared. 
  • We all get by with a little help (or really a lot) when it comes to cancer from our friends/family. 
  • You won’t ever be the same. As with any traumatic experience you are forever changed.
  • Accepting that cancer has changed you and living in the “new normal” means that you can move forward. Even if it’s at a slower pace. 
  • Life is meant to be lived. And it doesn’t matter how much time. Sure, I’ve never be told that there is nothing left but what I’ve learned from others who have is that you have to live while you have life within you. 
  • Surviving cancer doesn’t mean you have to live in a bubble. It also doesn’t mean you have to become a daredevil. 
  • Surviving means living. 

Tamika has dedicated her life to cancer advocacy from eliminating the stigma of the human papillomavirus (HPV) (and being deemed a “Cancer Rebel” by Newsweek), to training patient advocates to share their stories, and to eliminating the healthcare disparities within communities of color.

“My greatest lesson is that life comes with an expiration date — from cancer or otherwise. It matters what we do with our time here. Life continues to surprise me. I was diagnosed with cancer when I was 25. I’ll be 47 this year and life is still surprising me in the best way possible. I don’t know how many years I have left, but what I can tell you is that I am going to live in a way that says I survived cancer.”

– Tamika Felder, Founder and Chief Visionary, Cervivor


This is only a small fraction of what Tamika has accomplished since she began her journey with cervical cancer and we couldn’t be more grateful for her resilience and leadership to create the community we now know as Cervivor. Thank you, Tamika!

Join us in celebrating Tamika’s 21 years of Cervivorship by:
1. Start living life for YOU. Don’t wait until something traumatic happens to start living life.
2. Vote for Becky’s video. People die of cancer. I’m blessed to still be here. 
3. Donate $21 to Cervivor.
4. Schedule your cervical cancer screening.
5. Vaccinate your children and protect them from HPV-related cancers.

A History of Impact, Yesterday and Today

As Black History Month (February) comes to a close, and Women’s History Month (March) begins, we thought we’d take a walk through history and share some key Black, female leaders in the field of medicine and cancer research. 

First Black, female physician in the U.S. 

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Rebecca Lee Crumpler, MD (1831 — 1895) worked as a nurse for eight years in Charlestown, Massachusetts.  Because this was in the 1850s, she was able to work without any formal training (keep in mind the first nursing school opened in 1873).  She was admitted to the New England Female Medical College in 1860.  She graduated a few short years later in 1864 becoming the first African American to graduate from the New England Female Medical College as well as the first Black woman to earn a medical degree.  When the Civil War ended in 1865, she moved to Richmond, VA and joined other black physicians to care for freed slaves who would otherwise have had no access to medical care. She worked with the Freedmen’s Bureau, as well as missionary and community groups, even though black physicians experienced intense racism working in the postwar South.

First Black licensed nurse

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Mary Eliza Mahoney (1845-1926) knew at a young age that she wanted to be a nurse.  She had early jobs at the New England Hospital for Women and Children, working as a janitor, cook, and washer women, then got the opportunity to work as a nurse’s aide. She applied and was admitted to the facility’s nursing school (one of the first in America) in 1878.  It is said that 42 applicants were admitted to the program and only four completed the 16-month program.  Mary was one of the four and would become known as the first Black licensed nurse.  She followed a career in private nursing due to the discrimination she faced as a public health nurse. She retired from nursing after dedicated 40 years, however, she didn’t stop advocating for equality. Mary was a Women’s Rights activist.  After the 19th Amendment was ratified, she became one of the first women to register to vote in Boston! 

Founder of the first hospital for African Americans in Atlanta

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Dr. Georgia Rooks Dwelle (1884 – 1977) attended Spelman College and in 1900 she became the school’s first graduate to go on to medical school. After completing her degree, she returned to her home state of Georgia and received the highest score on the Georgia State Medical Board examination that year. She became one of only three African American women physicians in Georgia at that time. When she settled in Atlanta, she witnessed first-hand the dire poverty and terrible conditions in which many of the city’s poorest Black residents lived and the lack of medical care they received. She was determined to set up a practice where conditions would be sanitary and proper services would be offered. Her initiative started with just a few rented rooms and grew into Atlanta’s first general hospital for African Americans, the Dwelle Infirmary.  She continued expanding services for the hospital and by 1935 had a well-baby clinic, a clinic for venereal disease, and a ‘Mother’s Club’ for African American women.  

First woman president of the New York Cancer Society

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Dr. Jane Cooke Wright (1919 – 2013) was the daughter of the first Black graduate of Harvard Medical School, Louis Tompkins Wright.  She graduated from New York Medical College in 1945 and was hired as a physician with the New York City Public Schools. She decided to work with her father, who was serving as the director of the Cancer Research Foundation at Harlem Hospital.  Chemotherapy was experimental at that time, and as a team they began testing anti-cancer chemicals and helping patients achieve some remission.  Following her father’s death in 1952, Dr. Jane Wright was appointed head of the Cancer Research Foundation, at the age of 33. She went on to become the director of cancer chemotherapy research at New York University Medical Center and was appointed to the President’s Commission on Heart Disease, Cancer, and Stroke by President Lyndon B. Johnson. In 1971, Dr. Wright became the first woman president of the New York Cancer Society. At a time when African American women physicians numbered only a few hundred in the entire United States, Dr. Wright was the highest ranked African American woman at a nationally recognized medical institution.

Making Impact Today

These trailblazers of the past helped pave the way for the trailblazers of today, such as:

At the forefront of COVID-19 vaccine development

Dr. Kizzmekia “Kizzy” Corbett is at the forefront of COVID-19 vaccine development. A viral immunologist at the Vaccine Research Center at the National Institute of Allergy and Infectious Diseases, National Institutes of Health, she is one of the leading scientists behind the government’s search for a vaccine. Corbett is part of a team at NIH that worked with Moderna, the pharmaceutical company that developed one of the two mRNA vaccines that has shown to be more than 90% effective. Today, together with her research Corbett is taking on another challenge: tempering vaccine hesitancy by talking about COVID-19 science in communities of colour.

Developing cancer therapies with lasers and nanoparticles

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Dr. Hadiyah-Nicole Green, age 42, is one of the first African American women in the nation to earn a Ph.D. in physics, holds the distinction of being only the second African American woman and the fourth African American to receive a Ph.D. in physics from the University of Alabama at Birmingham (UAB). Today, Dr. Green specializes in developing targeted cancer therapies using lasers and nanoparticles. Her expertise lies at the intersection of nanotechnology, immunotherapy, and precision medicine with a focus on developing a new cancer therapy platform that uses laser-activated nanoparticles to completely eliminate tumors after a single treatment. Beyond her academic work, she founded the Ora Lee Smith Cancer Research Foundation – named in memory of her late aunt who raised her. Dr. Green has intertwined her life’s work and professional focus into the mission of the organization: to change the way cancer is treated and reduce the suffering of cancer patients by providing a treatment that is accessible, affordable, and most importantly, effective. 

Applying computational modeling to cancer therapies

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Stacey D. Finley is a professor of biomedical engineering at the University of Southern California, where she leads the Computational Systems Biology Laboratory. She applies computational modeling to study  biologic processes that underlie cancer, such as angiogenesis, metabolism, and immunotherapy. The biochemical networks that regulate these processes involve numerous cell types, molecular species, and signaling pathways, and the dynamics occur on multiple timescales. Therefore, her systems biology approach, including experiment-based computational modeling, is required to understand these complex processes and their interconnectedness in cancer, her research website explains. Models can simulate biological processes, test interventions and  identify which tumors will respond favorably to a particular therapy, aiding in the development and optimization of effective therapeutics.

These are only just a few of the incredible Black, female medical pioneers we decided to highlight.  Let’s take a moment to celebrate these individuals and their impact.  Their legacies will carry on serving all of us for many years to come.  

The Nurse Becomes the Patient

Karen is a breast cancer survivor, a cervical cancer Cervivor and a registered nurse (RN). She shares her unique perspective of being on “both sides” of the healthcare system – as a provider and a patient:

I was working as a nurse when I got “the call” – my gynecologist telling me over the phone that my Pap was abnormal and that I needed to have a biopsy. I didn’t get terribly scared at that time. I knew what a biopsy was. I knew what HPV was. I knew what an abnormal Pap was. “It’s just a biopsy looking for more information,” I’d reassured myself. When the results came back cancer, I wanted to vomit. 

The Google “black hole” that even nurses can fall into

Explaining everything to my family was emotionally hard for me. Before I could do that, I personally needed to have a plan, I needed to feel I was in control. I researched nursing school materials, cancer organizations, cancer statistics and treatment plans. I learned early that the last thing anyone with any type of cancer should do is “Google it.”

As a nurse, I had access to quality medical sources. I had credible people I could call. But the lure of Google is strong. As a healthcare provider, I’ve had patients get on blogs and forums and come to me scared by something someone had said – often something that had little to do with their own individual case. Google is a black hole for so many. Even for me at times, even with my nursing training. I’m thankful I had a network of friends who were also nurses to reach out to for information. 

The caregiver becomes the patient

As I began treatment, I was able to immediately bond with my oncology provider nurses and the surgery nurses. Many times, however, the care staff had to remind me that I was the patient and to stop trying to do things that I shouldn’t be doing! I’ve heard that doctors are the worst patients. I admit that nurses have got to be too. 

I think because I was a nurse, I tried to be particularly “helpful” when I was in the hospital receiving care. Having worked with residents and medical students before, I was very open to them watching and asking questions. I often told residents and medical staff in training that they can ask me anything, they just need to know that I don’t have a filter when I answer. I tell them the down and dirty truth!

As a nurse, not being in the position of caregiver can be a challenge. Many times nurses will put their own personal needs behind everyone else. So having my family and friends take care of me warmed my heart. Going through radiation and chemo treatment was difficult. I had nausea after chemotherapy (I can’t even look at a Goldfish cracker anymore). I had muscle spasms and diarrhea (I called it “liquid death”). My family and friends taking care of me showed me their love. There is a saying “what you give, you can get back tenfold.” I definitely felt swaddled in love. They even organized a fundraiser to help me with my expenses.

The endurance challenge of returning to nursing after cancer treatments

The first part of July 2016, I returned to my nursing job. I think this is one of the hardest jobs to return to after cancer because of the time on your feet and the endurance needed. What normally only took me 15 minutes would take me an hour to complete. My legs felt like I had concrete in my shoes. I needed to be able to go to the bathroom at a moment’s notice because of diarrhea and bladder issues. My body hurt everywhere. I had panic attacks that were debilitating. I felt guilty because I knew I wasn’t holding up to my standards of care. There were many times that I worried that I would make mistakes. There were also several times that my charting was done late because I couldn’t get to it with everything else going on. The best analogy that I can think of is “this is like running a marathon on crutches.”

Ultimately, I had to leave my job. I fell into a dark pit of depression and anxiety. 

The past few years since my cervical cancer treatments have been rough. I’ve had to have repeated biopsies because of abnormal Pap results. I’ve seen a gastroenterologist, a urologist, and an orthopedic doctor along with my psychiatrist and counselor. I’ve been diagnosed with radiation colitis that causes me severe abdominal pain and diarrhea. I’ve had to have my hip replaced because of a tear in the cartilage that wasn’t repairable due to the radiation. My depression and panic attacks are still debilitating. I also have been diagnosed with lymphedema of my right leg. I have to elevate my legs four times a day for 40 minutes – above my head, mind you! I also have to wear compression hose and hook up to a machine that pushes the fluid out of my leg every night.

These days I’m working at keeping my head together. It’s one day at a time, and sometimes, one minute at a time. With the help of my family, friends, medical teams, and my Cervivor community, I’m surviving.

Educating doctors and nurses about cervical cancer prevention

With the help of Cervivor and my training at Cervivor School, my goals now are to educate and advocate to general practitioners that they need to discuss HPV immunizations with every patient, no matter their age or sex.

My goal is to promote education to medical providers so that they will in turn educate their patients and friends on HPV prevention and the importance of the annual women’s health exam. I reach out to medical schools to connect with medical students and residents. I want to share my story with them, have them hear what I went through as both a nurse and a patient, and encourage them to be more proactive when it comes to cancer screening and prevention. I think being a nurse and speaking to them as a nurse and not just a patient can be particularly powerful.

Also, because of my nursing training I can be an effective communicator about HPV immunization and screening and will convey information in a way that people will understand. Like, when you talk about there being more than 400 different strains of HPV, only some of which can cause a cancer. I can relate it to different strains of the flu or the cold, so that people can grasp a little bit better idea of it. 

I am proud to say that I am a Cervivor Ambassador. My Cervivor school training has offered me the tools and understanding of how to listen to others’ questions and concerns and how to encourage them to talk to their providers about Pap testing, HPV testing and HPV vaccination. 

After all, If you don’t ask, your provider can’t answer.  

Karen North lives in Liberty, Missouri. She is a retired registered nurse. Her world is her family, fur-babies, and friends. As of the writing of this blog post in 2020, she is a six-year breast cancer survivor and a, come June,  four-year cervical cancer survivor. 

Read Karen’s Cervivor story.

Read Karen’s blog post on being both a breast cancer survivor and cervical cancer Cervivor. 

Take Advantage of the Season of Giving to Build Up Cervivor

Use the “Season of Giving” to do some fundraising for Cervivor so we can keep up our good work. Did you know that about 25% of all annual giving in the U.S. occurs during the last three months of the year? We’ve all no doubt received the end-of-year appeals letters from local and national nonprofits. Our fundraising work may be smaller but is much more personal because of the stories are ours. The community is ours. Want to help fundraise but not sure how? Here are a few starting suggestions. Please reach out to us at [email protected] and we can help you brainstorm and plan.

  • Donate yourself, then ask for a match. Donate to Cervivor and ask your employer to match. Post info about your donation on Facebook/Instagram, say why you gave and encourage your friends to match, with a link to our donation page.
  • Start a Facebook fundraiser: Facebook’s fundraiser makes it easy to select a beneficiary (Cervivor!) and kick off a social media fundraising campaign. Share why Cervivor is important to you. Make a “Christmas with a Difference” or “All I Want for Christmas (or whatever holiday you celebrate) is for Cervical Cancer to be Eliminated” fundraiser. Let us know what creative ideas you have! Share a link and we’ll promote your fundraiser in our blog or newsletter.
  • Take advantage of Giving Tuesday by donating or asking others to donate: On the heels of “Black Friday” and “Cyber Monday,” Giving Tuesday (Dec. 3 – the Tuesday after Thanksgiving) is a global day of giving is fueled by the power of social media. It’s a great opportunity to donate to Cervivor and to help raise money for Cervivor. Last year we raised more than $10,000 for Cervivor on this one day. Help us keep up the momentum. Each donation helps us grow our outreach, activities and advocacy. 
  • If you’re shopping on Amazon for the holidays, sign up for Amazon Smile and select Cervivor as your charity of choice. We get a contribution from Amazon each time you shop, all year long, so you can feel even better about buying presents for your family…or yourself!
  • Host a Friendsgiving: Are you more an IRL (in real life) person than a social media person? Convene your friends for a “Cervivor Friendsgiving” meal. Share what you are grateful for. Share your Cervivor story and educate about prevention. Ask friends to donate to Cervivor, or to come to the dinner with $10, $20, $50 or whatever makes sense. Cervivor is about the power of community of women there to support each other – not so different from your own community of friends. Tie the two together. 

Thanksgiving kicks off the holiday season ahead. Big meals. Cooking. Shopping. Turkey Day. Christmas. Hanukkah. Kwanzaa. New Year’s Eve. All of this then leads to our favorite month of the year: Cervical Cancer Awareness Month in January – which rolls around when we are all barely coming up for air from the holidays. So now is the time to get started. We hope these holiday action steps for our community are helpful. We are so appreciative of your support.

Hair Today, Gone Tomorrow: Cancer & Self Image

I have learned so much from cancer. They say, “Through darkness comes light.” I really believe that’s true.

In remission for the third time, having to lose my hair due to chemotherapy was hard on me as a woman. I know most will say, “It’s just hair.” Even I say it too, just to convince myself to stay strong. But, in fact, it sucks. It truly opened my eyes to everything I once wasn’t happy with.

Having cervical cancer reminded me of how I was so hard on myself and picked myself apart. I know I’m not the only woman who’s ever felt that way. I look back and think, “Wow Jill, you were so beautiful. Why didn’t you see it? Why did you pick yourself apart and not embrace your hips that measured 44 inches, or embrace your Roman nose?” After all, it’s my personal features that give me my character. Don’t get me wrong, I had confidence, but I still found things that I thought weren’t “perfect.” Nothing is perfect!

Every now and then I like to look back on pictures of myself before cancer. Why did I complain? I was fine the way I was. Now I’m fighting something more meaningful. I’m fighting for my life. I’ve learned to embrace life’s changes, how my body has changed and how I’m Mrs. T (bald) once again. Or how going #2 is completely different from before. Because I have a colostomy bag, this is now totally different.

So my advice to other women, especially women with cancer is to love WHO YOU ARE. Be happy with how you were created; focus on what you HAVE and NOT what you DON’T. Believe me, there’s something greater out there for you, if you believe. I’m a people watcher, sounds creepy I know. I often wonder to myself whether or not the person I’m admiring knows how eccentric he or she is. Being in the city regularly due to my medical appointments, I get to see all colors of the rainbow. The culture differences, the true beauty behind just how different we may look. But internally we’re all the same.

No matter what type of cancer you have ladies, just remember, you’re beautiful inside and out. Your inner beauty will always be there. We might need time adjusting to our shiny new heads or new gadgets attached to our bodies. But, with all the hardships that come along with our new appearances and emotions due to cancer, just remember how bad ass we truly are.

I hope to inspire other women dealing with Cervical Cancer to share their stories and true emotions without fear. Tell it how it Is; don’t hold back. Our cancer is tough, but somehow being painted as “easy.” If I can reach you with my story, just imagine who you’ll inspire by sharing yours. Let’s come together, share our stories, and help one another through our battles. We can help prevent future cases of Cervical Cancer, the one cancer that can often be prevented with a vaccine.

From now on, I’m going to love every inch of me because I’m beautiful inside and out. I will also remind my friend’s how beautiful they are as well. You have one life. Live it, love it, embrace the changes, take care of yourself, and be kind to yourself and others.

Now that I’ve gained my confidence back, I’m going to rock my bald head, wear my wigs and not care who’s looking. Because they could really be thinking, “Wow, she’s so fierce.” Those stares may not have anything to do with my cancer.

So gentlemen, don’t be afraid of our appearances, we’re strong women who know how valuable life is, how anything can change but we still ride the waves. How special love truly is. If you see a friend or a loved one going through the changes of cancer, please remind them how beautiful they are.

Jillian Scalfani is a young 34-year-old mother with an incurable form of cervical cancer. She and her children have a great support system when it comes to her friend’s and family. Read more about Jillian here.

Native American Heritage Month: Beverly Bushyhead

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November is Native American Heritage Month. Cervical cancer affects American Indian women 2 to 5 times more often than women from other racial groups.

What follows is a personal story of cervical cancer survival from Beverly Bushyhead, MA, MPA, of the Eastern Band of Cherokee Indians.

How I Learned to Live for Myself

By Beverly Bushyhead, MA, MPA

When I learned at age 40 that I had stage III B cervical cancer, it sounded like a death sentence. I remember thinking, My children are too young to be left alone! Because the 10 cm tumor on my cervix was inoperable, I would receive lots of chemotherapy and radiation. The only survivor with similar staging and treatment to mine wouldn’t talk about it—the experience had been too horrible.

The survivor was right. It was horrible. At first, weekly chemotherapy and daily radiation were easily managed. But weakness and radiation burns caught up to me—showers became unbearably painful. Even baths hurt terribly, and black burned skin would float to the surface. I would sit in the water and cry. I apologized to my body. I thanked it for all it had done: carrying my children through pregnancy, feeding them and always serving me well. One day, I realized that my body was me—it wasn’t something separate going through this. All of me was experiencing this.

Immediately, I went into a series of traditional ceremonies with my community. During sweats, I pictured the tumor melting. My children sang healing songs. But I didn’t pray for instant healing—I prayed for strength and clarity. At the sun dance, where prayers were said for me, I received items like eagle plumes and prayer ties. The water ceremony was also very powerful—and the hospital showed respect for it. I can never forget the amazing change the ceremony brought to the lymph node surgery I had less than an hour later. My traditions are everything to me, and they were what I held onto during this time.

Some people avoided me. One relative had three checkups because she feared she could catch cancer from me! There was judgment and whispering. Folks didn’t know what to do. Others helped, though, donating food and time. Still, I drove myself to every radiation treatment and most chemotherapy treatments. It was exhausting and lonely.

Some people in the community felt I should refuse chemotherapy and radiation treatments and use only traditional, spiritual practices. Others thought I should ask for a miracle. Some said traditions wouldn’t work if I chose medical treatments. I was terrified to die. I had to do what I thought was best.

My final treatments involved the surgical implantation of radioactive material and the insertion of seven needles filled with iridium into my sensitive, burned skin. Radiation to the max. Lead panels were placed around my hospital bed, and radiation was measured every 30 minutes. I awoke with a button in my hand to deliver morphine, a governor preventing overdosing. It was comforting to push that button—the pain was excruciating. I was devastated to learn that the first of the two operations had perforated my uterus and would have to be repeated the next morning.

It hurt to stretch. It hurt to move. It hurt to breathe deeply. So I tried to lie very still. The sun shone through the window. I could feel the warmth on my arm. I was grateful for the distraction from the pain. I was completely enveloped in the growing warmth of the sunlight. I let my mind linger on how it felt. I closed my eyes. In that moment I was completely happy. It was a startling revelation: If I could be happy in the middle of a horrific experience, then happiness was a choice I could focus on.

Initially, I had been going through cancer treatment for my children—my son, age 13, and twin daughters, who were 9. One of my daughters said in the beginning that she’d kill herself if I died, so I’d started a support group for kids with a parent experiencing cancer to provide coping skills and information. But after many personal, humbling and painful parts of going through treatment, there came a time when I was doing it for me. I wanted to live! And no matter how it turned out, I was here now.

Beverly BushyheadMy sweet children ate meals by my bedside. Even after I returned to bed and was sleeping, it was the most wonderful joy to hear them talking and laughing near me. I always wanted to be with them if I could. As I recovered, I finished my bachelor’s degree because I couldn’t die without finishing it! Then, over the next 5 years, I went on to earn two master’s degrees. Now, whatever’s on my list, will not be ignored.

My children, now 24 and 20, are grown up. I am grateful to see them as amazing and wonderful adults. It is an honor and privilege to be their mother.

I continue to deal with effects of all that radiation. Perhaps it’s the price for survival. But I’ve learned to love myself. And I learned how strong I am.

American Indians say a people are not defeated until the women’s hearts are on the ground. Well, I am determined to sing my song until my last breath.

Media – TJMS Inside Her Story with Jacque Reid

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Jacque Reid Tamika Felder CervivorToday is the last day of Gynecologic Cancer Awareness month and it was so great to end it by sharing my story this morning on the Tom Joyner Morning Show. Jacque Reid of TJMS and Single and Living Fab has a phenomenal segment called, “Inside Her Story” and boy, did we go INSIDE MY STORY…my coochie story to be exact. I’ve been through so many things on my journey with cancer, but the one thing that I’ve learned is it is imperative to share so that we can prevent cervical cancer. If you missed the segment, check it out here.

We got in a lot of information in a short period of time and I just wanted to share some additional information, because so many of your have reached out to me via social media.

Here are the top things you should know:

  • First and foremost, if you haven’t had a well woman exam it’s time to schedule one.
  • If you are ages 9 to 26 get the HPV Vaccine.
  • If you are 21 and sexually active, get a Pap Test.
  • For those of you who are 30 and over add an HPV Test.

I want women of color to know that we develop cervical cancer more often than white women and we are more likely to die. We have to change this health disparity by getting screened. No one likes to get a pelvic exam, but we have to do it.

Uninsured? We’ve got you covered. Check out this link.

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