In October 2015, Adrienne Moore’s period was so heavy that she missed work for three days straight. She’d been experiencing intermittent bleeding between periods, too. Since Moore didn’t have health insurance, she paid out of pocket to visit two doctors who said her symptoms were the result of ovarian cysts, fibroids, and perimenopause (the process your body goes through as you transition into menopause).
“I didn’t think things were necessarily life-threatening because I didn’t have a physician that was warning me and saying ‘Hey, this could be a sign of something bad,’” Moore, 48, tells SELF.
Moore had previously been diagnosed with stage 1A ovarian cancer at the age of 32. Doctors found it during a pregnancy-related exam and treated it by removing the ovary in question. She never had symptoms—ovarian cancer doesn’t normally cause symptoms that early, and bleeding isn’t a common one anyway. So, although this new bleeding made Moore suspect something was wrong, she didn’t think it could be related to cancer.
On March 28, 2016, Moore started a new job that provided full benefits. The very next day, she began bleeding heavily again. “It didn’t stop,” she says, so in May Moore saw a different doctor who had recommended a biopsy to examine cells from her uterus based on her symptoms. Soon after that, Moore was diagnosed with stage 3 endometrial cancer, which falls under the larger umbrella of uterine cancer.
Treatment required a hysterectomy to remove Moore’s uterus along with 25 rounds of radiation and six rounds of chemotherapy. She was declared cancer-free in January 2018, roughly 10 months after her final round of chemotherapy.
Moore didn’t know to ask her doctor about a potential link between her bleeding and endometrial cancer, she tells SELF. She also didn’t know that her identity as a black woman put her at higher risk of being diagnosed with this cancer at a later stage, or that being black made her more likely to die from the disease, too.
There are different types of uterine cancer, but the two main ones to know are endometrial cancer and uterine sarcoma. Statistics on uterine cancer often lump endometrial cancer and uterine sarcoma together, but the latter only comprises less than 10 percent of overall uterine cancer cases. With that in mind, the numbers mostly speak to the reach of endometrial cancer.
Endometrial cancer, which Moore had, takes root in the layer of cells that forms the lining of the uterus, also known as the endometrium. It’s typically the less aggressive type of uterine cancer, according to the National Cancer Institute (NCI). Uterine sarcoma, which is less common and affects parts of the uterus besides the lining like the muscles, tends to be harder to treat. Both of these forms of cancer are most likely to show up after menopause, the Mayo Clinic says, the average onset of which is 51.
Around 61,880 new cases of uterine cancer will be diagnosed by the end of 2019, according to the American Cancer Society (ACS). That makes it the most common cancer impacting female reproductive organs and the fourth most common cancer found in U.S. women. It’s also the seventh leading cause of cancer deaths among women in the United States, according to a 2018 report from organizations like the ACS, Centers for Disease Control and Prevention (CDC), and National Cancer Institute (NCI). By the end of 2019, uterine cancer will kill around 12,160 U.S. women.
The most common symptom of uterine cancer is abnormal vaginal bleeding, according to the ACS. As Moore experienced, this can show up in a number of ways, such as a change in menstrual bleeding and bleeding between periods, though this cancer can also cause a thin white or clear non-bloody discharge, the Cleveland Clinic explains. Other symptoms include pelvic pain, pain during sex or urination, feeling a pelvic mass, and unintended weight loss.
Unlike breast or cervical cancer, there are no standardized screening tests or exams to detect uterine cancer at an early stage before symptoms have begun. Even more worryingly, in comparison to many other cancers that are declining overall (like lung and colorectal cancers), uterine cancer is increasing—with more and more people diagnosed with and dying from the disease.
According to a dismaying December 2018 report from the CDC, the number of new uterine cancer diagnoses increased an average of 0.7 percent per year between 1999 and 2015, resulting in an overall 12 percent rise. Rates of endometrial cancer, specifically, jumped 4.5 percent per year on average. The uterine cancer mortality rate increased 1.1 percent per year on average between 1999 and 2016, amounting to a 21 percent leap overall. What’s more, the burden of uterine cancer is greatest for black women, and the disparity is increasing with time.
While that same CDC report found that non-Hispanic white and black women had similar incidences of uterine cancer (about 27 cases out of 100,000 people), black women were more likely to be diagnosed with uterine sarcoma, the most aggressive form of uterine cancer, than women of other races, and also more likely to be diagnosed at a later stage than women of other races. Early diagnosis is a key component of increasing the odds of surviving uterine cancer—the five-year relative survival rate for localized uterine cancer is upwards of 80 percent compared with less than 30 percent for uterine cancer that has spread to other organs. With that in mind, it’s no surprise that black women were about twice as likely to die from this illness compared to women in other racial groups.
“The racial disparity in uterine cancer outcomes is one of the worst of all cancer types in this country,” Kemi Doll, M.D., an assistant professor at the University of Washington and practicing gynecologic oncologist who studies gynecologic cancers and health care disparities, tells SELF.
As you can imagine, teasing apart the potential reasons behind this disparity is a complex task. The puzzle pieces start to come together when you look at some of the major risk factors for developing uterine cancer.
Let’s start with endometrial cancer risk factors. “We do know that obesity is one risk factor,” Michele L. Cote, Ph.D., a professor of Oncology at Wayne State University and associate center director of Cancer Research Career Enhancement, tells SELF. This is because it’s a health condition that can increase the amount of estrogen in your body.
As SELF previously reported, fat tissue can create additional estrogen with the help of an enzyme called aromatase. This can especially be an issue after menopause, when your ovaries are no longer producing as much of the hormone progesterone, which can help counteract the estrogen. When you have too much estrogen in your body, it can prompt your endometrium to become too thick, which can lead to cancer, according to the American College of Obstetricians and Gynecologists (ACOG). (This is why taking estrogen hormone therapy post-menopause without added progesterone is linked with increased endometrial cancer risk, per the Mayo Clinic, as is tamoxifen, a drug mainly used for breast cancer that can act like an estrogen in the uterus.)
One oft-cited figure the CDC includes in its December 2018 report suggests that being overweight or obese can make a person two to four times more likely to wind up with endometrial cancer than people with BMIs that fall into the “normal” range. BMI is often a flawed way of measuring health, but it does appear that there’s a clear link between endometrial cancer risk and higher body weight. And for a complex mix of reasons ranging from possible genetic variations to lowered access to healthy food, around 81 percent of U.S. black women are overweight or obese compared with 65 percent of U.S. white women, according to the CDC’s most recent numbers.
On a related note, there is also evidence that type 2 diabetes contributes to an increased risk of endometrial cancer. Most of this connection seems due to the link between type 2 diabetes and obesity. As with obesity, black women have disproportionately high rates of type 2 diabetes. According to the CDC’s 2017 National Diabetes Statistics Report, around 13 percent of black women in the United States had diagnosed cases of diabetes (type 1 or type 2) compared with around 7 percent of white women. (A lot of people also don’t know they have diabetes, so the real numbers of people living with diabetes are thought to be much higher.)
Beginning menstruation at an early age is another endometrial cancer risk factor. “There seems to be a protective effect of limiting the number of menstrual cycles a woman goes through during her lifetime,” Dr. Cote says, possibly because early menstruation increases a person’s overall exposure to estrogen. Various large studies have shown that, on average, black girls in the United States begin their periods around four to six months earlier than white girls in the United States. (There’s no one cause experts can point to—potential factors include everything from genes to black girls having higher rates of childhood obesity.) Four to six months might not seem like a major difference. But experts do believe it matters in this context, especially because it seems to be linked to other factors that can raise the risk of uterine cancer, such as higher chances of developing obesity and type 2 diabetes. (Although some science suggests black women also go into menopause slightly earlier than white women do, there’s no scientific consensus on that.)
Another endometrial cancer risk factor revolves around children. “The more children you have, the lower your risk,” Dr. Cote says. Pregnancy increases your output of progesterone, so you might benefit from its protective effects against this cancer. But people are generally having fewer kids these days, Dr. Cote explains, including black women. The number of births per 1,000 black women from the ages 15 to 44 declined by 2 percent from 2017 to 2018 alone, per the CDC. (This was in keeping with the overall 2 percent fertility rate decline in U.S. women.)
A past history of pelvic radiation (like the kind Moore got for her ovarian cancer) seems to be a concrete risk factor for endometrial cancer. The way this type of radiation can harm the cells in your DNA can give rise to other cancers, the ACS explains. Certain hereditary conditions can increase a person’s risk of endometrial cancer as well, like Lynch syndrome, which also causes a much higher than average risk of getting colon and ovarian cancer. (Moore’s father had colon cancer, but she hasn’t gotten genetic testing to see if Lynch syndrome may have brought about her endometrial cancer.)
These are some of the main factors that can make some people more likely to develop endometrial cancer in the first place, although there are others, like having a granulosa cell ovarian tumor that secretes estrogen (this was not the type of ovarian cancer Moore had), along with other conditions that skew hormonal balance, like polycystic ovary syndrome.
Less is known about uterine sarcoma risk factors. Some research suggests hormonal influences like tamoxifen and never having been pregnant are risk factors here as they are with endometrial cancer. Similar to endometrial cancer, a past history of pelvic radiation is also a risk factor for uterine sarcoma, the ACS explains.
Having had retinoblastoma (a type of eye cancer) caused by an abnormal copy of the RB gene is another risk factor for uterine sarcoma. The RB gene is supposed to stop cells from growing too quickly, so when something’s wrong with this gene, it can lead to cancer.
The only other known major risk factor for uterine sarcoma is being black.
With all of this in mind, what might be contributing to disparities outlined in the CDC report, like black women’s higher odds of getting a type of uterine cancer that’s harder to treat?
“Unfortunately, we don’t have a lot of research data yet on why black women are more likely to have a more aggressive form of uterine cancer,” Dr. Cote says. Some research suggests that molecular differences may be at play, according to a 2018 review in Cancer Medicine. For example, experts are studying whether or not black people are more likely to develop uterine tumors that have too much of a protein called Her2/neu, which has been shown to promote the growth of other types of cancer, like that of the breast.
As for why black women are often diagnosed in later stages of uterine cancer, we can’t ignore systemic elements black people are often more vulnerable to, like lower rates of health insurance and less access to quality health care overall.
It’s also worth noting that abnormal bleeding and other symptoms like pelvic pain are less common with uterine sarcoma than with endometrial cancer, the CDC report explains. Since black women are more prone to uterine sarcoma than any other racial group, that may be a contributing factor in late diagnosis.
But when black women do experience uterine cancer symptoms like abnormally heavy periods, Dr. Doll points to “the normalization of bleeding among black women” as a complicating factor in late diagnosis. Many black women have reproductive issues like uterine fibroids, which are benign growths in the uterus that can cause shockingly heavy, painful periods. As a result, black women may delay seeing a doctor when they have abnormal bleeding because they’re used to their bodies’ fickle bleeding patterns, Dr. Doll explains.
The frustrating thing is that when a black woman in this position does sound the alarm to their doctor, as Moore did, these symptoms still might not get the attention they deserve.
“I believe that it is possible that practitioners do not respond to abnormal bleeding in black women with the same alarm as other women—just like we see how pain or signs of distress are not seen with the same alarm when they occur in black women in other clinical settings,” Dr. Doll says. “I feel that research too often focuses on genetic causes to the exclusion of modifiable factors, such as early detection.”
Some research suggests that even when black women visit a doctor to discuss unusual vaginal bleeding, they’re less likely to receive the same follow-up tests as white women on the same timeline. In a 2018 American Journal of Obstetrics and Gynecology (AJOG) study of nearly 5,000 black and white women with endometrial cancer, researchers found that the black women had been less likely than the white women to report their symptoms—but when they did, they were also less likely to receive recommended procedures like uterine biopsy or transvaginal ultrasound in the same time frame, which was associated with the black women being diagnosed when their cancer was more advanced.
Some of the disparities in diagnosis and treatment can be connected to historical racism in gynecology, the AJOG study explains. There’s a long and painful trend of discrimination against and neglect of black women in reproductive health care, from undertreatment of black women’s pain to a lack of health care centers in communities of color.
Moore does question whether or not her status as a black woman delayed her diagnosis. “When I look back, I don’t know if I was marginalized because of my race,” she says.
Knowing that uterine cancer exists is the first step in catching it early. Not enough people are aware of the disease, Dr. Doll says. Moore agrees. “I had heard a lot of information about breast cancer but not a lot about gynecological cancers,” she says.
So, now that you know about uterine cancer and its symptoms, there are a few other steps you can take to potentially catch it as early as possible, if necessary.
“Know what a regular period looks like for you,” Dr. Doll says. “If there’s a big change [in your menstrual bleeding], that should be evaluated by a doctor.” This is especially true if your period gets heavier while you’re going through (or have already been through) menopause.
“If you’re done with menopause, if you have even one day of spotting, you absolutely need to be evaluated,” Dr. Doll says.
The ultimate hope is that there’s a different, less scary reason behind these symptoms. But if you do wind up getting a uterine cancer diagnosis, time is of the essence. Also, know that other people out there have been there and want to help you through it.
After her diagnosis, Moore began searching for support groups and online information for those with endometrial cancer. She came across a survey Dr. Doll was conducting about black women’s knowledge of endometrial cancer, so she signed up to participate. During their interview, Dr. Doll told Moore about an organization she was forming to focus on black women and endometrial cancer: Endometrial Cancer Action Network for African-Americans (ECANA).
Formed in 2017, ECANA brings together doctors, patients, survivors, community advocates, and professional leaders with the purpose of improving the lives of black women affected by endometrial cancer. On its website, ECANA provides a number of educational tools, including “Know Before You Go” handouts that offer guidance on what to ask a doctor about abnormal bleeding or what to know before undergoing treatment for endometrial cancer. ECANA is also working to increase the number of black women who serve as patient advisors so that those dealing with this disease are more likely to have someone of the same race speaking for them.
Moore signed on as a member of ECANA’s initial steering group and was recently appointed to serve as a patient advisor for the research-focused NRG Oncology steering committee on endometrial cancer research. Moore is excited about her chance to be the type of advocate she could have used in her journey with endometrial cancer. “I definitely see this as a chance to represent other black women who may be going through the same thing and to try and achieve better outcomes for us,” she says.