Rachel Banov Gould was just 30 years old when she had an abnormal Pap smear, and a series of tests revealed cancerous cells in her cervix. It was February 2011, and she was newly married; she and her husband, Ben, were excited to start a family. “At first, it felt like, This is terrible, but we can beat it,” says her sister, Jessica Banov, 41, of Raleigh, NC. After all, Rachel was the kind of girl who celebrated her birthday by taking trapeze lessons: She was tenacious and brave. And she never missed an ob/gyn visit. She took her health seriously.
Although the vast majority of women survive early-stage cervical cancer, Rachel’s case was complicated because the disease had already reached two lymph nodes. She soon underwent surgery, chemotherapy, and radiation—and began planning a trip to Bali and Korea for the fall. “Rachel loved to travel. She was always making these grand plans with massive spreadsheets,” Jessica recalls. Then, in August, just a few months after she finished treatment, Rachel’s doctors found new tumors in her abdomen.
“That’s when it became a different fight,” Jessica says. “The doctors tried everything, but the cancer continued to spread.” Rachel cared less about seeing the world now. “It was more about the small moments she worried she would miss,” Jessica says. One day, Rachel insisted on taking her sister wedding dress shopping, even though Jessica wasn’t engaged. “I put on all the craziest dresses, and we took tons of pictures. She wanted us to have that experience together.”
In March 2012, just 13 months after her diagnosis, Rachel died. Four years later, Jessica still wonders how this could have happened. “Rachel was informed and proactive. She did everything right,” Jessica says. “But there’s still too much that we don’t know about these cancers.”
For nearly 40 years, gynecologic cancers— the umbrella term used for a collection of diseases, of which cervical, ovarian, and uterine cancers are the most common, followed by vaginal and vulvar—have received a fraction of the attention given to that other, much better known women’s cancer. When the Susan G. Komen Foundation pinned on its first pink ribbon in 1982, only 74 percent of women diagnosed with early-stage breast cancer lived longer than five years. Billions of research dollars later, almost 99 percent of the women in that group will survive past that benchmark. It’s been a long and arduous fight, but experts agree: We are winning the war on breast cancer by almost any medical measure. Meanwhile, about 98,000 women per year are diagnosed with some type of gynecologic cancer, and although their overall number is smaller (compared with 230,000 for breast cancer), these diseases are harder to detect, spread more quickly—and kill more of the women they affect. Only 68 percent of cervical cancer patients and less than half of ovarian cancer patients survive five years past their diagnosis. Yet in 2014, the National Institutes of Health approved $682 million in grants for breast cancer research and only $131 million for ovarian cancer, while cervical and uterine cancers received even less. “It shouldn’t be about prioritizing one type of cancer over another,” explains Ginger Gardner, M.D., a gynecologic oncologist at Memorial Sloan Kettering Cancer Center in New York City. “Doctors, researchers, and women need to band together to fight all of these diseases.” And to do that, we need to understand what’s holding us back.
A Cancer People Still Whisper About
Incredibly, embarrassment—over talking about “that part” of a woman’s body—is still a barrier to taking awareness of gynecologic cancers fully mainstream. Tamika Felder, of Upper Marlboro, MD, experienced it when she was diagnosed with cervical cancer 14 years ago. “You probably got that from sleeping around,” she remembers a friend’s husband saying. Researchers were beginning to publicize findings that a sexually transmitted infection called human papillomavirus (HPV) causes most types of cervical cancer, as well as many vaginal, vulvar, and anal tumors. “I felt shamed,” Tamika says. She particularly dreaded bringing up her cancer when she was dating (she’s now happily married). “I always thought, What is this person going to think, if they Google my kind of cancer? The stigma is very, very real.”
It’s also entirely misplaced. By the time they’re 39 years old, more than 50 percent of American women will be infected with one of the nine strains of HPV that are most likely to cause warts or cancer, according to a study in the Journal of Infectious Diseases. “And we know that estimate is low,” says Patti Gravitt, Ph.D., an epidemiologist at the George Washington University Milken Institute School of Public Health in Washington, DC. There are actually 150 strains total, a dozen of which can cause cancer. “Most of us will end up with at least one HPV infection during our lifetime,” Gravitt explains.
“It’s nothing to be ashamed of; HPV is truly an equal-opportunity virus.” Meanwhile, the causes of most other gynecologic cancers are either unknown or possibly genetic, though they may still be viewed as taboo. “We see ‘stomach’ cancer a lot in family trees, and it’s often a euphemism for a gynecologic cancer that wasn’t considered proper to talk about,” says Joy Larsen Haidle, past president of the National Society of Genetic Counselors. It may sound old-fashioned, but the uneasiness persists. “It often feels like we’re back where breast cancer was a few decades ago, when not everyone felt comfortable talking about breasts,” says Gardner, who works closely with the Foundation for Women’s Cancer.
That reluctance inspired Tamika to launch a nonprofit called Cervivor, which teaches other survivors how to talk about their cervical cancer and HPV and advocate for the HPV vaccine, which can prevent the most common cancer-causing strains of the virus. The Centers for Disease Control and Prevention (CDC) recommends that it be given to girls and boys at age 11 or 12, but that has been met with controversy, as opponents fear that inoculating kids might encourage promiscuity. There’s no evidence to support that: “Research shows that getting the HPV vaccine doesn’t lead adolescents to be more sexually active or to start having sex at a younger age,” says Lauri Markowitz, M.D., a medical epidemiologist at the CDC. “This is about preventing cancer,” Tamika says. “I can’t believe we have a vaccine and yet some people are unwilling to use it.”
You Have To Find It To Treat It
The squeamishness around below-the-belt health can cross over into the doctor’s office, where experts say women are sometimes hesitant to speak up about their symptoms. “We can tell that women aren’t happy to be there a lot of the time,” says Mary Jane Minkin, M.D., a clinical professor of obstetrics and gynecology at the Yale School of Medicine in New Haven, CT. “And every now and then, as we’re leaving the room, a patient will say, ‘By the way, I’m having some trouble…'” What follows, she says, is often the sheepish revelation of a complicated issue.
Erin Rothfuss wishes she’d had more involved conversations with her doctor. Her periods had gotten progressively worse for three years: “I knew that was weird for me, and yet I hesitated to push for answers,” she says. “It’s easy to dismiss these symptoms because they can seem so vague.” It wasn’t until she moved that her new ob/gyn decided to perform an ultrasound. She found cysts, and scheduled an appointment to have them removed, recalls Erin, now 44 and a lawyer in San Francisco. “She said it would likely require a simple laparoscopic surgery, that it should only take 45 minutes,” she says. “I woke up five hours later to learn that they had performed a total hysterectomy because I had Stage III ovarian cancer”—a decision that saved her life. “I’m grateful that I had never wanted children of my own, but it was still painful to have that door slammed shut,” she says. Yet Erin is one of the lucky ones: Following intensive chemotherapy, she’s been cancer-free for six years.
Why didn’t Erin’s doctors know that her cysts were cancerous until they began cutting them out? Because scientists have yet to develop a way to screen for tumors when they’re buried deep inside your pelvis. A staggering 70 percent of ovarian cancers reach Stage III or IV before they’re diagnosed at all—and at that point, the disease is so advanced that the five-year survival rate can be as low as 17 percent. “The breast is on the outside of your body, which makes it easier to screen and understand,” Gardner explains. “But tumors on your ovaries start out tiny. And their cells readily slough off—all it takes is a few cancerous cells free-floating in the pelvis and it’s a different ball game.” In a nationwide survey of 521 gynecologists, conducted by researchers at the University of California, San Francisco, nearly 50 percent believed that pelvic exams were “very important” in the detection of ovarian cancer. But the exam isn’t approved as a screening tool, since it can’t catch the disease early enough to dramatically improve treatment outcomes. “We can tell women to be on the lookout for symptoms like abdominal pain, bloating, or abnormally heavy periods,” says John Micha, M.D., a gynecologic oncologist in Newport Beach, CA, and president of the Nancy Yeary Women’s Cancer Research Foundation. “But by the time a woman notices anything, the cancer has likely spread.”
To detect ovarian cancer earlier, scientists need to find some subtler change in a woman’s body, one that happens before the tumor can be felt by a doctor. A blood marker known as CA-125 is elevated in ovarian cancer patients, and has long been used to track the disease once a woman is diagnosed. But since CA-125 levels also fluctuate for noncancerous reasons, including pregnancy, it was dismissed as a potential detection tool—until a recent British study suggested an algorithm for analyzing CA-125 levels in precancerous women, stoking media buzz about a breakthrough ovarian cancer test. The research has been greeted cautiously by the medical community, though a group of experts in the United States is expected to release a statement this spring about what it means for women. “We’re hopeful that it could eventually help us identify women at higher risk,” says Carmel Cohen, M.D., a gynecologic oncologist at Mount Sinai Hospital in New York City and chair of the Gynecologic Cancer Advisory Group for the American Cancer Society.
The news is slightly better for uterine cancer. While there’s no screening, its first symptom—unexplained bleeding—tends to manifest early in the disease’s progression. “We diagnose most of these cases at Stage I, when the cure rate is 95 percent,” Micha says. Still, the onus is on women to report their symptoms quickly: Once the disease reaches the lymph nodes, the five-year survival rate drops to 68 percent. It plummets even further if the cancer spreads elsewhere in the abdomen or lungs.
Cervical cancer is the only one of these types of cancers to have a reliable screening tool. “Since the Pap smear became standard protocol, the number of invasive cervical cancers we see each year has gone from 100,000 down to 10,000,” says Cohen. In some cases, the Pap smear even prevents cancer by allowing doctors to find and treat cells and lesions that could lead to cervical cancer, as well as some vaginal and vulvar cancers, before they develop into a larger problem. But new guidelines from the United States Preventive Services Task Force suggest that many women can go three to five years between Pap smears. That gap concerns some doctors. “It might mean that people won’t see their doctor at all, and you should once a year, whether you get a Pap smear or not,” says Minkin, noting that there has also been some controversy over whether women need to have an annual pelvic exam. She believes they should: “For one thing, it’s an opportunity to discuss ways to manage your risk for these cancers, from watching your weight to starting the Pill.”
For Erin, the ovarian cancer survivor, the message is clear: “You have to talk to your doctor if you’re concerned. And even if your doctor says it’s fine, don’t be afraid to push them harder.” Not sure what to say? Try “prove to me that this isn’t cancer,” suggests Cohen. Aggressive? Yes. But necessary.
So Few Options, And A Ticking Clock
With diagnoses happening late in the game, a woman with gynecologic cancer needs the best treatment, and quickly. But there simply aren’t enough gynecologic oncologists. “This specialty requires extensive training,” notes Micha. “We’re only graduating about 35 new fellows each year.” Fewer than 60 percent of patients ever even see a gynecologic oncologist, in part because they’re found mostly in high-volume treatment centers rather than local hospitals (find a center by entering your zip code at foundationforwomenscancer.org). These doctors are more likely to have access to the most promising new treatments—but even some of those are still too experimental to be widely available or covered by insurance.
But when a woman does find the right specialist, and does get cutting-edge treatment, there are moments of real hope. Stacey Cannone, a 41-year-old accountant from Lynbrook, NY, met Gardner six years ago, when a series of abnormal Pap smears revealed early-stage endocervical adenocarcinoma, an unusual form of cervical cancer. Stacey was newly married then. “You never think your first year of marriage is going to involve your husband learning to change your urinary catheter because you’ve just had cancer surgery,” she says. And as soon as she heard cancer, Stacey says, “I was already taking the idea of having a child and putting it in the garbage.”
The traditional treatment for Stacey’s cancer is a total hysterectomy, because taking out all of the reproductive organs is the most definitive way to ensure the cancer cells are completely removed. Gardner, however, was determined to preserve her patient’s fertility along with her life. So she performed a surgery known as a radical trachelectomy, removing Stacey’s cervix and upper vagina but leaving her ovaries and uterus in place, as well as a new procedure that helps doctors better evaluate the lymph nodes. Today, Stacey has been cancer-free for more than five years—and gave birth to a baby girl in December.
Stacey’s story is not typical, but it should be. Gynecologic cancers are still waiting for a groundswell of women to demand better research and more funding. “If every person in the United States donated a dollar, there would be enough money to establish a Komen for any number of cancers,” says Micha, referring to the powerhouse breast cancer charity, Susan G. Komen. And yes, even small donations help. “About 80 percent of our research grants are funded by advocacy groups and families,” says Karen Carlson, executive director of the Foundation for Women’s Cancer. Simply put: “Awareness translates into research dollars,” she says. Over the years, there have been headline-grabbing stories to remind us how devastating these cancers are, like comedian Gilda Radner’s death in the ’80s and country star Joey Feek’s recent battle with cervical cancer, shared bravely and beautifully on social media. But it’s on all of us to keep women’s cancers in the collective consciousness. If you’ve already given your dollar or 20, there are walks to join (check out globeathon.com for all women’s cancers and tealwalk.org for ovarian cancer), ribbons to wear (teal for ovarian, peach for uterine, lavender for all women’s cancers), and frank conversations to have with your own doctors, as well as your mom, your sisters, and your friends.
“In the end, Rachel’s death was a loss of such potential,” says Jessica Banov of her sister. “If she had survived, she would be the one advocating for more research and trials.” A little more than a month before she died, Rachel Banov Gould wrote a blog post about the one-year anniversary of her diagnosis. “This is not where I was supposed to be,” she said of the cancer that had by then spread to her lungs and was defying all available treatments, ruthlessly disrupting her plans for the trips she had hoped to take and the children she longed to have. “But I will tell you this, we are not giving up yet.” We can’t give up either.