patient advocacy

How Cervivor Empowered Me

My doctor called me on November 11, 2020, and told me over the phone that I had cervical cancer, and after I slid down the kitchen counter and physically got up off the floor, I started Googling ‘cervical cancer’. I knew where my cervix was and I knew I had cervical dysplasia in my 20s that had gone without treatment as it disappeared and the next pap was normal. But all of a sudden, I was a cancer patient. I was going to have a radical hysterectomy and bilateral oophorectomy. I was going to be genetically counseled and tested to find out I had a BRCA gene mutation. My body had turned against me. When I learned cervical cancer and HPV were linked, I was convinced I was contaminated and dirty and bad. It was the height of the pandemic and I was alone and scared. 

I found Cervivor on YouTube first and watched every video. Later I found Cervivor on Facebook and joined I’m A Cervivor! and introduced myself. Between the website and all the Cervivor stories, I became informed. I understood my options and I understood what my experience might be like. I had this knowledge and a sense of community, and I felt empowered. I was ready to fight cancer because of Cervivor.

The Cervivor community was a lifeline on those nights I was afraid I was dying. It is still a part of my daily life today, after my one-year cancerversary. With Cervivor, we laugh together, we cry together, we learn from each other, we share our stories, we live our lives, we are still living, and we honor those who are no longer with us. Now that I am a survivor of Stage 1A2 cervical cancer, I am helping to support others by offering my shoulder to lean on and sharing advice and experiences with others going through the same diagnosis.

Cervivor is my support and hope. It felt like finding my family because I am an orphan and have no living family. They were at my side in the OR as part of my visualization exercise for a successful surgery. They were there as I dealt with the consequences of my surgery. Suddenly, I had a beautiful diverse rainbow of sisters from all walks of life, and we were all joined by our experiences and making sure that no one else would go through what we had gone through if we could help educate others. I learned something from every single one of them and continue to learn from them at every meetup and through every call and text to a Cervivor sister. 

Cervivor has changed my life for the better. Programs from Cervivor comforted me after surgery and inspired me to take control of my body and my health in ways I had never done before. For example, I’ve lost 54 pounds and I’m healthier than the day of my diagnosis. I may not have any female reproductive organs in my body anymore, but I am still a strong bad@&$ babe. I am still fighting and adjusting to my body after cancer treatment, but I am also fighting for others, and I will never give up!

Cervivor taught me that cervical cancer actually gave me a superpower – the power to save lives by educating people on how we can end cervical cancer. Our stories matter. We are personal experts in our stories of cervical cancer and how much it takes from us. Cervivor teaches us to give back by raising our voices. Knowledge is power. The information and resources about HPV and cervical cancer from Cervivor can encourage vaccination and give patients the support they need. 

Cervivor prepared me and supported me, and now I am paying it forward in my community and online. For me, “Informed. Empowered. Alive.” is one of my life’s purposes now. Thank you, Cervivor, I love you! Each and every one of us, no matter where we are in the cervical cancer experience – from those who have had dysplasia and an HPV diagnosis to those of us who have metastasized – it is an honor to count myself amongst us. We are empowered! Let’s make cancer pay!

Pixie Bruner lives in the Atlanta metro area and is already a one-year survivor of stage 1a2 cervical cancer. She is a roleplaying game author, poet, historian, and academic guest lecturer on Classical Studies. She is a NASA Night Sky Network award recipient for education. Her hobbies include art, stargazing, dressing like a cat, coloring (including her hair in random crazy colors), and she is a voracious bookworm under five feet tall. Pixie advocates for cervical cancer awareness by sharing Public Cervix Announcements to total strangers. She is currently starting a joint project with other survivors in her area (Teal Sisters of GA) to fight the stigma of HPV, crush the ignorance of cervical cancer and HPV-related health issues, encourage HPV vaccination, and educate on cancer screenings and treatment for everyone.

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.