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]!

Finding My Footing After Cervical Cancer

In 2019, my beautiful son was born. I had my first abnormal pap a month after his birth.

A year and a half later, with multiple colposcopies, I was finally told to have a LEEP. A month later, I got a phone call from my gynecologist while at work. It was the phone call that changed my life; I was told that I had adenocarcinoma of the cervix.

I rushed home with tears in my eyes. Not wanting to tell my husband or, for that matter, my mother. She had just started feeling better after her own treatments and a stem cell transplant. Her hair was finally growing back. How can I share this news with her, that I, too, have cancer? My brother was diagnosed with testicular cancer in 2018, my mom was diagnosed with multiple myeloma in 2019, and then a year after her diagnosis, I was told I had cervical cancer. How can this be happening to one family? What did we do wrong?

The very next day, I distinctly remember asking myself, “How did I not know what HPV was? How did I not know there is a vaccine to prevent my cancer?”. I needed to create awareness for my fellow lady friends. We need to be made aware of what our pap tests are looking for. 

Being a new mom is already a challenge. Your whole world has turned upside down for this beautiful little creature who never sleeps, constantly eats, and cries all the time. I was already drowning. I absolutely love my son, but at that moment in time, I felt like I lost a part of who I was. Now, I’m just a mom, not Victoria.

Then a cancer diagnosis slaps you in the face.

My Family

Surviving cervical cancer gives you a whole new perspective on life. My attitude towards living and being a part of my family has changed dramatically.

My son, Jude, is now three years old. Knowing that cancer was in my body and knowing that if I didn’t find it or treat it, he would have been left without a mom; tears up my heart. I cherish every moment I have with him. Yes, even the crazy tantrums and the days I want to pull out my hair!

When my mom had her stem cell transplant, I was one of her caregivers. I saw firsthand what it was like to watch your mom fight for her life. I was fortunate enough to not have to go through radiation or chemotherapy; my son only knew mommy was “ouchie” (after my radical trachelectomy) and to let me heal.

I am here for my family. I am present in all things good and bad.

Being shown that cancer doesn’t discriminate on your age, really made me appreciate life and live it to the fullest. No more saying “well, maybe one day, I’ll do it” – now is the time!

My Friends

Explaining to my friends that I had cervical cancer truly felt like an out-of-body experience.

Like me, they were very uneducated on what HPV was and how it can cause cancer. My goal at the time wasn’t to create awareness, but more to let them know what was discovered and my treatments. My friends are the family I chose, and they needed to know.

Having this conversation and sharing everything with my friends is really what drove my desire to get involved in advocacy.

Creating Awareness

Bringing awareness to cervical cancer has been the biggest part of making my survivorship count.

As I mentioned, I had no idea what they look for during my pap test and just how important that truly is. How science and researchers have discovered a vaccination that can prevent certain HPV cancers.

During this cancer journey, I have found my voice. I need people to hear it, and not just hear it, listen! Educating my friends & family became my priority.

Originally, I shared my story and created awareness through social media. I attended a conference held in Toronto, Ontario, called “Health eMatters”. Here I met other advocates and heard about their journies. I have learned tips/tricks and other resources/tools to engage with more people.

My mom and I have started an Instagram account about a mother and daughter duo fighting cancer together. This is a newly formed platform and I’m excited about the possibilities and the number of people we can reach!

Being a survivor of cervical cancer, I find it is my responsibility to share my story and create awareness of cervical cancer. Don’t ignore the uncomfortable five minutes of a pap test! Get your vaccination!

If I help just one person or encourage just one person to get their pap test, I have done my job as a cervical cancer survivor and advocate.

Ending the Stigma

I, along with a lot of my Cervivor friends, have taken the challenge of stimga head-on.

We all know that cervical cancer has a stigma with it because it is related to HPV. So, it must be a “dirty” cancer. Educating the world about how common HPV is and how most people will have it at one point in their lives. Most immune systems are able to fight it off, while some aren’t so lucky and it can turn into cancer.

I was told I had cervical cancer caused by HPV and I automatically went to the thought of, “How? I’ve been with my husband for over ten years!”. I had no idea HPV could lay dormant for years!

So, back to educating because this is important. Everyone needs to know that just because you have cancer caused by HPV, it does NOT mean you “sleep around” or that you are “dirty”. It only takes one encounter!

We must end this stigma. I am not ashamed of it. I am not embarrassed. I will voice it loud and clear that I had cervical cancer and that you can prevent yourself from getting it.

TOGETHER, LET’S END THE STIGMA around cervical cancer!

Future

Looking towards the future, I would love to be able to connect with other cervical cancer survivors in Canada and truly make a support group here.

I want to be able to help those who have been newly diagnosed and be able to provide them with as much information and support as humanly possible.

I want to share my story with media outlets and really create awareness here in Canada. I’ve been talking with my local MPP about getting the Gardasil vaccination a priority and covered by our OHIP here in Ontario.

There are many steps left in my future of making my survivorship count. I am only two years out from being cleared of cancer and I’m just getting started on my advocacy!

Victoria Falla is born and raised in Hamilton, Ontario, Canada. She is a 33-year-old cervical cancer survivor. She was diagnosed with stage IB2 cervical cancer in 2020. Victoria is an active cervical cancer advocate who will make her survivorship count with every breath she takes.