Stop the Shame

Women with HPV-related cancers say that education is the answer.

By Karen Bate

When Tranette Ledford’s doctor said the dreaded words, “You have cervical cancer,” the writer from San Antonio, Texas, was understandably shocked and scared. When she got home, she told a professional colleague and friend who was visiting.

“Oh, wow, I wonder who gave it to you” was the friend’s immediate response.

In that moment Tranette realized that in addition to shock and fear, she also had to contend with the idea that even among well-educated people this particular diagnosis included an unhealthy dose of shame.

“I was appalled,” Tranette says. “I decided then that I would be very careful about whom I told and what I said. Cervical cancer is caused by HPV [human papillomavirus], which is transmitted sexually. I realized there were misconceptions and that blame for my illness would fall on me. So I went through chemo and 28 weeks of radiation treatment silently and pretty much alone.”

Tranette has decided to be silent no more.

HPV is as ubiquitous as the common cold. The Centers for Disease Control and Prevention (CDC) reports that almost all sexually active people will acquire HPV at some point in their lives.1 The CDC estimates that 79 million Americans are currently infected with HPV. Individuals can have the virus for years without knowing they have been infected or that they have passed it on to someone else.

“While most women and men will be exposed to HPV sometime in their life, few develop any sort of clinically relevant disease as a result of this common infection,” points out Mark Einstein, MD, MS, director of clinical research of women’s health and gynecologic oncology and a professor of obstetrics and gynecology and women’s health at Einstein and Montefiore Medical Center in New York City. And, he adds, “If most people are infected with HPV, why should any one per­son feel ashamed?”

Unfortunately, as countless news accounts continue to reveal, harm­ful sexist attitudes toward women endure. Tranette tweeted recently in support of clinics that provide women’s cancer screenings in Tex­as, and a man she didn’t know re­plied, “Maybe if women didn’t sleep around they wouldn’t get cancer.”

“The general public needs to be educated about HPV and cancer and end the shaming of the more than 20,000 women who develop cervical, vaginal, and vulvar cancer annually,” Tranette says, “and the men and women who develop anal and throat cancers, which can also be caused by HPV.”

She adds, “It doesn’t matter how you got it, whether you are married or single. It’s not about sex. The im­plication that HPV-related cancers are punishment for being ‘bad’ re­calls the similar, early response to AIDS in the 1980s.”

Mildred R. Chernofsky, MD, is a gynecologic oncologist at the Sibley Center for Gynecologic Oncology and Advanced Pelvic Surgery and an associate professor of obstetrics and gynecology at the George Washing­ton University School of Medicine, both in Washington, DC. She tries to demystify the causes of HPV-re­lated cancers with her patients. “We should all embrace that any form of sexual activity has risk of HPV,” she points out, “and also accept that sex is a natural part of life.”

It is realistic to assume that each sexual partner increases an indi­vidual’s chances of HPV exposure, yet Dr. Chernofsky has also had patients with just one sexual part­ner. In fact, when a couple becomes monogamous, HPV can become sup­pressed in both partners and can be triggered later by childbirth, an ill­ness, or stress related to the death of a loved one or any number of life events.

The vast majority of cervical can­cer diagnoses are in women who have never seen a gynecologist (50 percent) or have not seen one in more than five years (40 percent). Only 10 percent are diagnosed in women who get regular gynecologic care.

“Thus the message is for women to get regular checkups and co-test­ing with the Pap [Papanicolaou] and HPV tests for women 30 and over ev­ery five years,” Dr. Chernofsky says. “Girls and boys ages 9 to 11 should get the HPV vaccine, as well as men and women up to age 26. The vaccine has greater efficacy when received at an early age when sexual activity has not yet begun, but there is still some benefit in people up to age 26, even if sexual activity has started. Condom use can greatly reduce exposure as well, by providing at least partial protection.”

According to the American Can­cer Society, about 12,360 new cases of cervical cancer were diagnosed in 2014 in the United States; 4,020 women died.2

Latinas have the highest rates of cervical cancer of all groups of women. Lack of screening is an im­portant factor behind this disparity. Latinas are also more likely to die from cervical cancer than are non- Hispanic Whites.

While cervical cancer incidence is highest among Latina women, Af­rican-American women have lower five-year survival rates and higher death rates from the disease.

“When I was diagnosed in 2001, HPV and cervical cancer weren’t in the news as they are now,” says Tamika Felder, a television producer and founder of Tamika & Friends, a nonprofit organization working to prevent cervical cancer through patient education and survivor em­powerment. “I felt all alone and embarrassed,” Tamika says, “until I started educating myself about HPV and its link to cervical cancer. During this time my friends were doing research, too. We needed to do something; we had to let people know. Out of this Tamika & Friends was born.”

In 2013 Tamika & Friends launched Cervivor, an educational support community that includes Cervivor School, Cervivor TV, and the website cervivor.org.

Symptoms of cervical cancer generally do not show up until the cancer is quite advanced. According to the Chicago-based Foundation for Women’s Cancer, many women report that they know something is wrong, but it sometimes takes persistence and multiple trips to the doctor before they are finally diagnosed.

Dena Whatley, a vulvar cancer survivor from Norwich, Connecticut, is a case in point. “I had a rash on my labia that was misdiagnosed by several doctors,” she says. “One doctor told me it was a birthmark, others that it was due to an allergy or yeast infection—all false. I was finally correctly diagnosed, but because of this delay I have now had three surgeries and recurrences and continue to fight this disease.”

Dena felt ashamed that the cancer was likely caused by HPV: “After I was diagnosed in 2009, I put on a mask, smiled, and hid behind that for a long time. Last year I finally shared my story with other women and discovered I am not alone, that there are others and that I could help them.”

While searching the Internet for information, Dena found the Foundation for Women’s Cancer, a nonprofit that provides educational resources and research grants and raises awareness about all gynecologic cancers. She formed a team for the foundation’s annual National Race to End Women’s Cancer in Washington, DC, and held several fundraisers to raise awareness and support at the hospital where she works.

“Other women need to know this organization is out there,” Dena says. “Gynecology and gynecologic oncology offices need to share information about the website [foundationforwomenscancer.org], support groups, anything that can provide patients with support. This information should be included in the appointment. I so wish it didn’t take me almost five years to find the foundation!”

Tranette Ledford agrees. “People hear ‘cervix,’ ‘vagina,’ or ‘vulva’ and want to cover their ears,” she says. “But it begins with us. We must be unashamed and help overcome this—just like they did with breast cancer 30 years ago—so that we too can win the awareness war. This is about our mothers, sisters, wives, daughters, and friends. It’s time to break the silence, come together, and demand more research funding and refined treatments. Our death rate is just too high to ignore.”

Learn more about Cervical Cancer Screening and Prevention

References

  1. Human Papillomavirus (HPV): Genital HPV Infection–Fact Sheet. Centers for Disease Control and Prevention website. Available at: http:// www.cdc.gov/std/hpv/stdfact-hpv.htm. Accessed December 29, 2014.
  2. What are the key statistics about cervical cancer? American Cancer Society website. Available at: http://www.cancer.org/cancer/cervicalcancer/ detailedguide/cervical-cancer-key-statistics. Accessed December 29, 2014.