Why No One Is Talking About Ovarian Cancer

Jenna Birch | SHAPE Magazine

Every October, we start seeing pink. Pink ribbons on t-shirts. Pink armbands on football players. Pink-themed walks, 5Ks, and marathons—all efforts aimed to support Breast Cancer Awareness Month, which was started in 1985 to encourage women to get their yearly mammograms. Since then, the month has blown up into an anticipated, annual phenomenon.

But lost in that shuffle is September’s Ovarian Cancer Awareness Month, represented by the color teal. Although the disease is rare compared to breast cancer, the statistics are far more grim. And few people are talking about them.

According to the National Cancer Institute, roughly 21,290 new cases of ovarian cancer will be diagnosed in 2015—yet 14,180 women will also die. The five-year survival rate for the disease is just 45.6 percent, compared to breast cancer’s roughly 90 percent. Often, since early-stage symptoms of the cancer are very mild, we don’t catch ovarian cancer until it’s too late. In 61 percent of cases diagnosed, the cancer has metastasized, which reduces five-year survival rates to just 27.4 percent. (Learn the facts! 4 Things You Didn’t Know About Ovarian Cancer.)

Why Ovarian Cancer Is Less Talked About
If ovarian cancer is the deadlist gynecologic cancer, why aren’t we seeing more of that blue-green spattered everywhere? There are several reasons, according to Nimesh Nagarsheth, M.D., an associate professor of Obstetrics, Gynecology, and Reproductive Science at Icahn School of Medicine at Mount Sinai, who helps raise funds and awareness for gynecologic cancers with a rock band of six gynecologic oncologists called N.E.D.

1. Ovarian cancer isn’t as prevalent as breast cancer. There hasn’t been a real high-profile public figure diagnosed with ovarian cancer in some time (not since SNL alum Gilda Radner in the 1980s), who might carry the torch for the disease. With new cases of breast cancer hitting the news all the time—from Rita Wilson to Elizabeth Edwards, Robin Roberts to Giuliana Rancic—it’s on the public’s mind more often.

2. Docs are more focused on work than awareness. While we’re all thankful to be talking openly about breast cancer, and the success of October’s pink ribbon is amazing and unparalleled, we’re still trying to hit our stride with ovarian awareness, says Nargarsheth. “In terms of gynecologic cancers, as a field, we’ve probably been a little more focused on the work as opposed to the awareness aspect.” For instance, doctors have been working on identifying the key emerging symptoms of ovarian cancer—like bloating, early satiety while eating, urinary frequency or urgency, pelvic or abdominal pain, so women can get diagnosed earlier and survive the disease. (You can lend your support to the disease by participating in these 6 Ways to Help Fight Ovarian Cancer.)

3. Some women mistakenly think they’re covered. “For breast cancer, we have the mammogram and even the self-exam,” says Lindsay Avner, the founder of Bright Pink, an organization aimed at educating women on their breast and ovarian health. “These are external organs that you can check; you can feel lumps. For cervical cancer, we have pap smears given by your ob-gyn—but these don’t screen for ovarian cancer, which many women don’t realize.” (More on what your options for an ovarian cancer screening are later.)

With annual pap smears and all the ads for Gardasil taking over the airwaves, many young women believe they’re protected for all gynecologic cancers, she adds. “The pap smear gets a lot of play, and we’ve sort of fallen prey to the marketing,” says Avner.

4. Some think ovarian cancer is an automatic death sentence (it’s not). “While breast cancer is the most common form of cancer in women, ovarian cancer is the deadliest,” says Avner. “So we do not have that army of survivors like we do with breast cancer, helping to raise awareness.” But the perception of deadliness is another reason we’re not hearing enough about ovarian cancer. The thing is, if diagnosed in the early stages, survival rates jump to more than 90 percent in stage one, and more than 70 percent for stage two. “We want to get beyond the ‘this is so deadly, this is so sad’ conversation” Avner says. “We really want women to know the symptoms and advocate for themselves.”

Here’s how to do just that:

The Symptoms
Subtle as they are, it’s important to be aware of symptoms, says Nargasheth. “Symptoms that may appear at an early stage can often seem vague and musculoskeletal,” he explains. “This might be bloating, pelvic or abdominal pain, getting full quickly while eating, appetite changes, weight loss or gain, and pressure on the bladder. A lot of women complain that they have trouble wearing pants, or that they can’t button their pants.” If you’re experiencing any of these for a week or more and they feel abnormal for your body, trust your gut and get checked. “It’s easy to pass off,” Avner says. “We all feel bloating, we eat too much Chinese food—whatever the case. But if a symptom persists, you have to see your doctor. Say what’s on your mind. Ask, ‘Could this be my ovaries?’”

Can You Protect Yourself?
Research has shown that some factors lower your risk of ovarian cancer, like taking birth control for more than two years, having children, and breastfeeding. “We’re realizing the progesterone component is probably the key to prevention,” Nargarsheth says. Progesterone—a hormone produced in the ovaries that peaks during pregnancy and while on some forms of birth control—helps maintain the health of your uterus, regulates your monthly cycle, and assists in bringing pregnancies to term. And science is starting to show that progesterone may even destroy cancer cells. In addition, reducing ovulation while taking birth control, breastfeeding, or being pregnant may help lower your risk. (And a recent study found that drinking this Tea Could Protect Against Ovarian Cancer.)

Is There Screening?
The best potential screening test available right now is the CA-125, which measures the levels of a protein that may be elevated in around 80 percent of ovarian cancer cases. If you’re high-risk (you can quickly check with Bright Pink’s Assess Your Risk tool), you can ask your doctor about getting this test; the younger you get the test, the easier it will be to figure out what your normal levels are. That said, Avner reminds that not every person with ovarian cancer will have an elevated CA-125—including her mother, whose CA-125 results were perfectly normal when she was diagnosed.

“As of now, there is no effective test that we’re advocating for everyone,” Nagarsheth explains. “Sometimes, screening tests can do more harm than good, causing a lot of anxiety over false positives, or even getting false negatives.” Talk to your doc if you have questions.

If you have a strong family history of breast or ovarian cancer, you also might want to get tested for the BRCA-1 and BRCA-2 genes. The average woman has a 1.3 percent chance of developing ovarian cancer in her lifetime—but that jumps to 39 percent and 11 to 17 percent respectively, if you carry either of the two gene mutations. If you carry these genes, preventative surgeries to remove the Fallopian tubes or ovaries—like Angelina Jolie had earlier this year—are options. (Find out Why Angelina Jolie Pitt’s Newest Preventative Surgery Was the Right Decision—for Her.)

Birch, Jenna. “Why We Need to Start Talking About Ovarian Cancer.” Shape, http://www.shape.com/lifestyle/mind-and-body/why-no-one-talking-about-ovarian-cancer.