Ending the Stigma of Endometrial Cancer

It’s the fourth most-commonly diagnosed cancer for U.S. women. So, why aren’t we talking more about it?

by Sarah Ellis Health Writer

It was August of 2013, and 33-year-old Nefa-Tari Moore had been having a pretty good year. She was working as a licensed practical nurse (LPN) in Brooklyn, NY, and had just gotten married in July. When she started experiencing heavy vaginal bleeding and lower back pain, Moore didn’t think much of it at first—until one day in November when her pain really escalated. “That morning, I was too weak to get out of bed,” she recalls. “That’s when I decided to [hop in a cab and] go to the emergency room.”

But even at the hospital, she knew the answers she was getting didn’t tell the full story. “I was told by the doctors that the bleeding may just be a change of menstrual cycles, me being stressed, or that it was all in my head,” Moore says. “They wanted to give me ibuprofen and recommended that I go home and rest.” But she insisted on staying for further observation. Thanks to her persistence, the ER staff set her up with an OB/GYN referral, which ultimately led to the diagnosis of endometrial cancer.

“I was really afraid for my life,” Moore, now 40, remembers. “I didn’t know what the end results would be. I did some research to find out if there was support and learn more about my diagnosis.” Her cancer journey ended up being longer than she ever expected; Moore beat endometrial cancer twice (she had a recurrence in 2015), followed by ovarian cancer in 2018. This led her to become an advocate with SHARE Cancer Support, a national nonprofit that provides support and education for women with gender-specific cancers. She now works as SHARE’s uterine cancer program coordinator, facilitating support groups among women who are newly diagnosed or in treatment.

Moore’s message is simple: More women need to know about the signs and symptoms of endometrial cancer. She is working with the Spot Her campaign, a new partnership between Eisai Inc., SHARE, Black Health Matters, and Facing Our Risk of Cancer Empowered (FORCE) to raise awareness for this life-altering disease. “I hope that it brings about change by empowering women to be their own best advocates for their health,” Moore explains—just like she did when seeking her own diagnosis.

Moore-Nefa-Tari-2
Courtesy of the subject

Endometrial Cancer: Signs & Risk Factors

Endometrial cancer is the fourth most frequently diagnosed cancer for women in the U.S. Rates have been rising steadily over the last two decades, both in the U.S. and across the world. The American Cancer Society estimates that around 66,570 new cases of endometrial cancer will be diagnosed in the U.S. in 2021, up from 65,620 in 2020. A 2019 study in the Journal of Women’s Health found that endometrial cancer rates began increasing around 2002, with a 10% increase between the years 2006 to 2012. Black women, Asian American and Pacific Islander women, and Hispanic women are all more likely than white women to die from endometrial cancer.

Risk factors include age (the average age at diagnosis is 60), obesity, family history, and genetic conditions like Lynch syndrome. There is also a weaker correlation between certain hormonal treatments, like unopposed estrogen use after menopause or tamoxifen for breast cancer treatment, and endometrial cancer risk.

The most obvious sign of endometrial cancer is a change in your regular menstrual bleeding. It may look like a heavier period or spotting in between your periods. “For post-menopausal women, any abnormal bleeding needs to be evaluated,” say Mario Leitao, M.D., gynecologic oncologist at Memorial Sloan Kettering Cancer Center in New York, NY. But for premenopausal women, this can be trickier to notice because bleeding may not seem like a red flag. “In younger women who are still having their periods, this is often thought to be hormonal imbalances or normal changes in their period,” Dr. Leitao explains. “Some doctors don’t tend to be as aggressive in working up these things because [they are] often attributed to hormone-based reasons.”

It’s easy to dismiss your heavy bleeding at first, chalking it up to stress or lifestyle changes. “Some women feel like it’s just something that happens once in a while and don’t realize it’s a problem,” Dr. Leitao says. Even post-menopausal women might think light spotting is no big deal. Dr. Leitao suggests that anyone over 35 who develops heavy periods or new spotting should get an endometrial biopsy (that’s when a sample of your uterine lining is removed for further study). For those younger than 35, if the bleeding does not go away with other interventions your doctor suggests (like lifestyle changes or OTC pain medications), an endometrial biopsy might also be a necessary diagnostic tool.

The Stigma of Speaking Up

When recalling how difficult it was to get a diagnosis, Moore believes her experience shows how endometrial cancer can be so easily mistaken for other things. “Women and their families just don’t know the signs, symptoms, and risk factors of endometrial cancer,” she says. “And also, from the standpoint of a Black woman, the survival rate is much lower than our white counterparts. [We don’t have] access to that information, and people [are] not talking about it.”

Periods can be difficult to talk about in any setting, and if you feel you’ve been dismissed by a healthcare provider, it’s even harder to keep speaking up. Research shows that women—especially Black and brown women—are less likely than men to have their pain taken seriously by clinicians. This can have the dual impact of prolonging diagnosis in the short term and discouraging women in the long term from having an open dialogue with their doctors. The best way to prevent this is by educating women about endometrial cancer so they can feel confident speaking up for themselves.

Being Your Own Best Advocate

Here’s the good news: “Endometrial cancer is something that, if caught early, is highly curable,” Dr. Leitao says. For localized endometrial cancer, the five-year relative survival rate is 95%. You are right to be taking your symptoms seriously and trying to get answers as soon as possible.

Moore suggests doing your research before your doctor’s appointment and going in with questions in hand. “Ask questions [and] explain as thoroughly as possible what your symptoms are,” she says. “Know the signs and symptoms such as heavy bleeding and spotting. Talk about your family history of cancer or if you have any known genetic mutations.” And don’t give up if your doctor says it’s nothing to worry about, yet your symptoms aren’t getting better. “If you are dismissed, as I was, be persistent and seek second opinions,” Moore says. “Just keep at it until you get the answers you need.”

Dr. Leitao says it’s totally OK for a woman to ask her doctor why they are performing (or not performing) certain tests. “Patients should be informed and willing to ask the question, ‘Why are you doing that test?’ or ‘Why aren’t you doing this test?’ he says. Your doctor should be able to explain their rationale to you, and you can ask follow-up questions if you feel like you need more testing.

One other tip for improving doctor’s visits is to bring a loved one with you. “If possible, try to have someone go to the doctor with you each time, because maybe there is something you may not hear that the person with you can pick up on,” Moore suggests. She did this with her closest family members during her own cancer journey. “I asked them if they wanted to attend a doctor’s appointment with me so they would be able to ask the doctor questions as well,” she says. Not only was it helpful to Moore, it also helped her loved ones understand endometrial cancer so they could better support her.

A cancer diagnosis can feel lonely, but if you have a trusted doctor and close confidants by your side, you do not have to go it alone. The first step is knowing how to talk about it. “I’m working on the campaign to help raise awareness and to help end the silence around endometrial cancer,” Moore says. You can play a role in educating the women in your life, too. Ask about your family’s medical history, and let your loved ones know what you’re learning about the symptoms of endometrial cancer. The more we can spread the word on this disease, the more we can change the curve over time.

Sarah Ellis
Meet Our Writer
Sarah Ellis

Sarah Ellis is a wellness and culture writer who covers everything from contraceptive access to chronic health conditions to fitness trends. She is originally from Nashville, Tennessee and currently resides in NYC. She has written for Elite Daily, Greatist, mindbodygreen and others. When she’s not writing, Sarah loves distance running, vegan food, and getting the most out of her library card.