A few years ago, we shared Tamika Felder’s cervical cancer survivorship story, where she talked about her diagnosis at age 25, life afterward, and how it led to her creating Cervivor. Her non-profit patient advocacy platform provides education, support, and community for those diagnosed with the disease. We caught up with her recently to discuss how perceptions about the disease have changed, why the statistics on Black women remain so high, her legacy, and the unexpected gift of motherhood.
How do you think knowledge of cervical and its treatment have changed?
Felder: We’re doing better than we were but are not where we should be. Sometimes, I feel like I’m not an expert, but I am because I have experienced the disease. I have my ear to the streets talking to patients.
But the biggest problem I see is Black women are still falling through the cracks.
Women of color across the board are being overlooked, but Black women are falling through the cracks because:
- We are diagnosed late.
- Our follow-up isn’t good, whether it is on us or our medical team.
I can speak to that firsthand. I often say the only difference between me and someone else who looks like me who has been diagnosed is I had great insurance and a primary care doctor who found my cancer and woman-handled me to make sure I followed up.
I kept saying, “I don’t have cancer.” My father had died from cancer, and I thought I knew what it looked like. I got all of these second opinions. One of them, an older Black female doctor at Howard University Hospital, was the catalyst that led me to schedule my hysterectomy when she told me my cervix looked like chewed-up meat. I was mad when she said that, but I scheduled the surgery.
What is different today?
Felder: We have better tools. When I was diagnosed in 2001, we only had the PAP test. The HPV test came in 2003, and the vaccine in 2006. There is still a lot of controversy surrounding the HPV vaccine, but I wholeheartedly believe in it because I see too many people of every ethnicity die of cervical cancer.
But when I see someone who looks like me and is around the same age, I have survivor’s guilt because, unlike breast cancer and blood cancers, we should absolutely be winning the war. After all, we know the cause of most cervical cancers.
We have diagnostic screening tools to detect abnormal cells to ensure that if people are diagnosed, we can get them treated early, and we have a vaccine to prevent it in future generations.
What made you start Cervivor?
I was pissed off, I was sitting at my desk in the newsroom, and there was information about a breast cancer walk. I thought, where is the walk for cervical cancer? The doctors I saw for second opinions and the one who found my cancer kept saying they saw my situation all the time. How come I am not hearing about it? They told me women thought their husbands were cheating and vice versa. I saw the need for education. Patients weren’t talking about cervical cancer because it’s embarrassing. I saw that the disease had a marketing problem.
And I couldn’t stop talking about cervical cancer. Here we are decades later and still have to talk about it. I am a Black woman from South Carolina, you don’t tell all your business. But I am also a storyteller because I worked as a television producer for many years. I created a toolbox for telling your story and getting involved. I wasn’t the first person to talk about cervical cancer, but I was the first black woman to be vocal about the disease.
I am okay being the coochie cancer lady. That wasn’t my dream growing up, that this would be part of the legacy that I leave, but I own it now.
I thought my legacy wouldn’t be the lives I brought into the world. It was going to be the lives that I saved.
But a little over a year ago, your life changed when you and your husband became parents with the help of egg donation and surrogacy. How has your son Chayton impacted your work?
This baby has become a beacon of hope for people because it is another way to share my story. A woman sent me a message that I was her surrogacy mentor. And I said, “God, you have stirred up some stuff in me.” Who knew that becoming a mother would be the continuum?
One survivor said, “It’s like your story has come full circle.”
For me, that means my son won’t have to worry about HPV. My stepdaughter won’t have to worry about HPV-related cancers. And if someone is diagnosed with an HPV-related cancer, it’ll be something that they got, not something they did to themselves because it’s so common.
