Nancy Brinker knows how cervical cancer patients feel
Nancy G. Brinker, founder of the Susan G. Komen Foundation, clearly understands the plight of cervical cancer survivors in dealing with the stigma of their disease. Her sister, Susan, 33, who is the namesake for the foundation, was diagnosed 40 years ago with breast cancer and died three years later.
“No one had breast cancer then and, if you did, you were going to die,” said Brinker. “They called it the ‘big C.’”
Brinker made the remarks at a recent gathering of cervical cancer survivors at the Seacrest Beach Hotel in Falmouth. She said she saw first-hand the pain her sister endured when her friends stopped coming by to visit her because of her diagnosis.
“When we sometimes took walks down the street, I would see her friends and then they would cross the street because they didn’t know what to say,” said Brinker. “They couldn’t say the words ‘breast cancer.’”
Today, women face the stigma of having cervical cancer because of its association with the human papilloma virus (HPV). It is the most common sexually transmitted infection and 79 million Americans, mostly in late teens and early 20s, according to the Centers for Disease Control & Prevention (CDC). HPV is so common that almost every person who is sexually active will get HPV at some time in their life, if they don’t get the HPV vaccine. The organization recommends the HPV vaccines to prevent cancer and other health risks.
A study published by the National Institutes of Health showed that women who are aware that HPV is transmitted in this way have a higher level of feeling the stigma and shame, if they test positive for the virus. If they are aware that the virus is common, it will lessen their anxiety, possibly “normalizing” the infection.
Cervivor, a national organization, is working to eliminate that stigma through education, support, raising awareness and encouraging survivors to tell their stories.
“There is definitely a need in doing this work because the stigma is very much there,” Tamika Felder, a cervical cancer survivor and founder of Cervivor, said at the Seacrest gathering. “We just need to get more women talking about cervical cancer and they have been. I know times when we couldn’t even get this many women together to talk about cervical cancer and this is an amazing thing that happened here this weekend.”
Felder has partnered with Eileen Lind of Team Maureen, a Falmouth-based non-profit, whose mission is to end cervical cancer by educating about the HPV cancer connection and the importance of prevention and early detection. Lind’s sister, Maureen Duffey Russo, 37, died of cervical cancer in 2006.
The Cape Cod Healthcare Cancer Committee is a supporter of Team Maureen and has been active in helping promote the HPV vaccine.
“I met Tamika 10 years ago when I went to her first Cervivor program and I remember being struck that she was doing great work,” said Lind.
She explained how difficult it is to find women who are willing to talk about having cervical cancer and the impact on their lives.
“There is way too much guilt and blame put on these women,” she said.
“Cervivor School is a networking, educational and motivational event that brings together and mobilizes cervical cancer patients and survivors to become more involved in the cervical cancer awareness and prevention movement,” according to Cervivor’s informational packet. It supports women with training and tools to powerfully tell their stories to a range of audiences, including legislators and policymakers.”
Lind decided it would be a good match for her program to join forces with Felder.
“I wanted her to bring her program to the Cape not only for the experience we could offer to the community, but also have women in Massachusetts become advocates to work with us,” said Lind. “And to add their personal stories to our work is so important.”
Telling Their Stories
For the 25 ‘cervivors’ who attended the weekend, the sharing was profound, emotional and overwhelming at times. They talked about the challenges of the after-effects of treatment, the impact the disease has on their lives and their families, from not being able to have any more children, to metastasis, to misdiagnosis, to wishing they had known sooner they had HPV before it turned to cancer.
As one woman wrote: “My healthcare providers didn’t fail me, the available tests failed them. Vaccination stops cancer before it even needs to be detected.”
They all came together to learn how to decide what area they want to focus on for advocacy, whether it be to teach women the importance of reading their medical records, asking questions about their disease, promoting better testing, promoting the HPV vaccinations or finally a cure.
They heard one another’s stories, learned more about the medical aspects of the disease from gynecologists and the emotional side of survivorship from a clinical social worker, ongoing research to improve vaccine delivery, other advocates and specialists who work in the areas of cervical cancer and HPV vaccines.
“For me, this is how I make my survivorship count, when someone doesn’t feel ashamed anymore and they can open up and tell their story,” said Felder. “This is what matters most to me.”