Research Methods for Health Sciences 2

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 ter-

rible, 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 mak-

ing 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,” Jes-

sica 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 diag-

nosis, 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 dis-

eases, 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 bet-

ter known women’s cancer. When the Susan

G. Komen Foundation pinned on its first pink

ribbon in 1982, only 74 percent of women diag-

nosed 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 (com-

pared 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

YOU.

IT’LL TAKE

YOU.

There are women across this country

suffering—and, yes, dying—from

cancers that people don’t like to

talk about and that doctors have

a hard time diagnosing and

treating. Does that sound like a

world we should be living in? Here’s what you need to

know to help them, and yourself.

BY VIRGINIA SOLE-SMITH

WHAT WILL IT TAKE TO

SAVE WOMEN

FROM CANC E R ?

98 REDBOOKMAG.COM / MARCH 2016

Illustrations by

BENEDETTO CRISTOFANI

body red YOUR HEALTH

100 REDBOOKMAG.COM / MARCH 2016

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 sleep-

ing around,” she remembers a friend’s husband saying.

Researchers were beginning to publicize findings that a sexu-

ally 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 Wash-

ington 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 gyne-

cologic 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 gyneco-

logic 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 uneasi-

ness 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 Mar-

kowitz, 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 some-

times 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 gyne-

cology at the Yale School of Medicine in New Haven, CT. “And

every now and then, as we’re leaving the room, a patient will

You’ve probably heard about BRCA1 and BRCA2, two genes that can significantly increase your risk for breast and ovarian cancers—Angelina Jolie famously tested positive for one of them in 2013. Unfortunately, they’re not the only concerns when it comes to gynecologic cancer. “Approximately 24 genes have been associated with a greater chance of developing ovarian cancer alone,” says genetic counselor Joy Larsen Haidle. That’s why it’s so important to discuss your personal and family history with your doctor. Dig deep, too: It’s not only women’s cancers that matter—research suggests that a history of any number of diseases, like colon and pancreatic cancers, may increase your risk, Haidle notes. The good news is that genetic testing, if it’s warranted, can provide useful information that will help you and your doctors decide whether you need more frequent screenings or even preventive surgery like Jolie’s. “This knowledge can also inform and empower your sisters, daughters, and other female relatives,” Haidle says. So book that appointment.

S H O U L D YO U C O N S I D E R G E N E T I C T E S T I N G ?

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102 REDBOOKMAG.COM / MARCH 2016

First things first: You need to see your gyno every year so she can track any changes in your health, no matter how small they seem. As for everything else, we know this: The sooner cancer is identified, the better your chances of beating it. Fortunately, the screening tools we do have are affordable. Pap smears are covered by most insurance plans and Medicare and are also available at government- assisted clinics like Planned Parenthood. Use this info to stay proactive.

B E YO U R O W N A D V O C AT E

THE SCREENING: Pap smear. Women should have their first Pap at age 21. The official recommendation is to repeat it every three years until age 65, as long as it’s normal.

YOU SHOULD KNOW… If you’re under 26, you can ask your doctor for a “catch-up” HPV vaccine. Once you turn 30, your gynecologist can add on a test that detects the specific cancer-causing types of HPV; if both your Pap and HPV test are normal, you can go as long as five years between screenings— but you need to be comfortable with that time frame, so be sure to discuss it with your doctor.

THE SCREENING: No screening. Most cases of uterine cancer occur once a woman is in menopause, though unusual bleeding, at any age, should be reported to your doctor.

YOU SHOULD KNOW… “Unexplained bleeding doesn’t have to be significant,” says Ginger Gardner, M.D. “I don’t care if it’s brown, light pink, red, a tiny bit of spotting or a lot— please mention it to your gynecologist.”

THE SCREENING: No screening; consider genetic testing if you have a family history of certain cancers (see page 100). Ovarian cancer can happen at any age, but most cases occur between the ages of 55 and 64.

YOU SHOULD KNOW… Watch for new symptoms, including unexplained abdominal pain or bloating, loss of appetite, and an urgent or frequent need to pee. “These symptoms are easily confused with GI problems,” says Carmel Cohen, M.D., “but if you experience them almost daily for two to three weeks, schedule a time to see your doctor.”

CERVICAL, VAGINAL, AND VULVAR CANCERS

UTERINE CANCER OVARIAN CANCER

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 symp-

toms 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 cancer-

ous 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 gyne-

cologists, conducted by researchers at the University of Cali-

fornia, 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 oncolo-

gist 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 symp-

toms 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.

body red YOUR HEALTH

In some cases, the Pap smear even prevents cancer by allowing

doctors to find and treat cells and lesions that could lead to cervi-

cal 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 doc-

tors 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 hyster-

ectomy, 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 estab-

lish 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 Can-

cer. 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 diag-

nosis. “This is not where I was supposed to be,” she said of

the cancer that had by then spread to her lungs and was defy-

ing 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. R

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