Linda Collins had been in menopause for almost a decade when she started bleeding again. The bleeding was light — occasional spotting, really — and she barely gave it a passing thought.
When she finally went in for a checkup, her doctor refused to let her leave until she underwent a biopsy. Within days, Collins learned she had cancer of the uterus — and an especially aggressive form of it.
“I had no pain, no other symptoms, and I didn’t think seriously about it,” said Collins, 64, a retiree in New York City. “That was a mistake.”
Cancer of the uterus, also called endometrial cancer, is increasing so rapidly that it is expected to displace colorectal cancer by 2040 as the third-most-common cancer among women and the fourth-leading cause of women’s cancer deaths.
The mortality rate has been increasing by almost 2% a year overall, with even sharper spikes among Asian, Hispanic and Black women, according to a recent study in JAMA Oncology. Despite the increase, there has been little public attention to the disease.
Overall survival rates are high when uterine cancer is detected early, but few women are aware that a change in menstrual bleeding, before or after menopause, is one of the main warning signs, along with pelvic pain and painful urination and intercourse.
Uterine cancer was long believed to be less common among Black women. But newer studies have confirmed that it is not only more likely to strike Black women but also more likely to be deadly.
Black women die of uterine cancer at twice the rate of white women, according to a report in March from an expert panel convened by the American College of Obstetricians and Gynecologists.
The gap is one of the largest racial disparities observed for any cancer, the report said. Black women are also more likely to develop a form called non-endometrioid uterine cancer, which is more aggressive.
Among all populations, uterine cancer is being detected more often in younger women who are still in their childbearing years as well as in women who don’t have any of the known risk factors, such as obesity, infertility and never having been pregnant, said Dr. Shannon Westin, a gynecologic oncologist at the University of Texas MD Anderson Cancer Center in Houston.
When she first started caring for women with uterine cancer, she said, there were about 39,000 new cases a year. Now, there are more than 65,000 — and she has been in practice only 15 years.
“That’s a clear indicator we should be ringing the alarm bells,” Westin said.
Dr. Carol Brown, a gynecologic oncologist at Memorial Sloan Kettering Cancer Center in New York, called the surge in cases an epidemic.
“The striking statistic is that right now, in the year 2022, the number of women who will lose their lives to endometrial cancer in the U.S. is almost the same as those who will die of ovarian cancer, which is unbelievable to those of us in practice for the last 30 years,” said Brown, who is the center’s senior vice president and chief health equity officer.
The JAMA Oncology study analyzed racial trends in uterine cancer while correcting for hysterectomy rates. That’s important, because Black women have a higher rate of hysterectomies, said Megan Clarke, the lead author. (Women who have had a hysterectomy do not have a uterus, so they cannot develop endometrial cancer; including them in the calculus artificially lowers the incidence rate.)
“By making the correction for hysterectomy rates, we are more confident — the increase is real,” said Clarke, a fellow at the National Cancer Institute.
Black women represented just under 10% of the 208,587 uterine cancer cases diagnosed in the United States between 2000 and 2017, but they made up almost 18% of the nearly 16,797 uterine cancer deaths during that period, Clarke’s study found.
The uterine cancer death rate for Black women is 31.4 per 100,000 women ages 40 and older, compared with 15.2 per 100,000 for white women in the same age group, Clarke reported. (Comparable death rates for Asian American women were 9 per 100,000, and for Hispanic Americans, 12.3 per 100,000.)
That makes uterine cancer an outlier, since progress has been made toward narrowing the racial gap in death rates from most cancers over the past two decades. Another National Cancer Institute report, published in JAMA Oncology in May, found that overall, death rates from cancer have declined steadily among Black Americans between 1999 and 2019, although they continue to be higher than those of other racial and ethnic groups.
The reasons for the increase in uterine cancer cases are not well understood. The most common form, endometrioid cancer, is associated with estrogen exposure, which is higher when obesity is present, and obesity rates have been rising in the U.S.
But non-endometrioid cancer has increased in prevalence, too, and it is not linked to excess weight. Clarke’s study found that Black women are more likely to have this aggressive form of uterine cancer. They are less likely to be diagnosed early in the course of the illness, and their survival rates are worse no matter when they are diagnosed and what subtype of the cancer they have.
“At every stage of diagnosis, there are different outcomes,” said Dr. Karen Knudsen, CEO of the American Cancer Society. “Are they getting access to the same quality of cancer care?” She has called for more research into the factors driving the trends.
The expert panel convened by the American College of Obstetricians and Gynecologists found racial and ethnic disparities in the care given to Black and Hispanic women with uterine cancer. They were less likely than white women to undergo hysterectomy, less likely to have their lymph nodes properly biopsied to see if the cancer had spread and less likely to receive chemotherapy, even for a more threatening cancer.
Adrienne Moore, a respiratory therapist who is Black and lives in the Atlanta area, was 45 when she found out she had uterine cancer, but she said it took her almost a year to obtain the diagnosis. She went from one doctor to another complaining of heavy, very painful monthly bleeding that had started after several months without periods at all.
Moore, who is now 51, was uninsured at the time, and doctors she consulted dismissed her complaints as symptoms of perimenopause or fibroids.
After Moore purchased health insurance under the Affordable Care Act, she saw a gynecologist who performed another scan. It showed a thickening of the uterine wall, which can be suggestive of cancer, and the doctor immediately ordered a biopsy.
Three days later, the doctor called her to the office. “I knew what it was then. I knew it was cancer,” Moore said.
Moore said she is alive today because she was persistent. “If your body is telling you something, you’ve got to listen to it, and then you’ve got to get other people to listen to you,” she said.
Dr. Kemi Doll, a gynecologic oncologist at the University of Washington School of Medicine in Seattle, has been doing research for years to figure out why so many Black women die of endometrial cancer.
She has found that ultrasound scans that measure the thickness of the uterine wall are less accurate when patients have the more-lethal non-endometrioid type of uterine cancer, which is more common among Black women.
The scans are also less effective when women have uterine fibroids, which obscure the scanner’s view, she found. That may explain why Black women, many of whom suffer from uterine fibroids, are more often diagnosed later in the disease process, Doll said.
If thickening is not discovered, physicians will generally not go on to perform a biopsy to test for the cancer.
Premenopausal women who have erratic menstrual cycles may not recognize that they need to check for uterine cancer because they think of the irregularities as normal, Doll said. And women in perimenopause who expect abnormal bleeding may also not recognize when something is wrong, she said.
“We need to rethink our guidelines,” Doll said. Women who have abnormal cycles and unusual bleeding throughout their lives are at highest risk: “It is the abnormality of the cycle that increases the risk of endometrial cancer, because of the dysregulation of hormones.”
But the bigger problem, she said, is that there is so little public awareness. Women know they should have mammograms and Pap smears to screen for breast and cervical cancer.
“If someone found a lump in her breast, would she put off doing something? Everybody would tell her, ‘No, no, no, go right now,’ ” Doll said. Uterine cancer is four times as common as cervical cancer, she added, “and we have not had any national dialogue about it.”
When she gives women a diagnosis of uterine cancer, most say they have never heard of it, Doll added.
Treatment typically requires a complete hysterectomy, with surgical removal of the uterus, ovaries, fallopian tubes and cervix. Radiation and medication therapies may also be required, depending on the stage of the disease.
Having a hysterectomy can be life-altering for young women, plunging them into surgical menopause and possibly requiring hormone treatment to manage the side effects, and disrupting the plans of those hoping to have children.
It has been three years since Collins’ hysterectomy and radiation therapy. She now goes out of her way to tell friends and acquaintances to immediately talk to their doctors about unusual bleeding or other symptoms like pain, bloating or sudden weight loss.
“I tell them, ‘Don’t wait; don’t wait. If it doesn’t feel right, if you don’t think it should be happening — check it out,’” Collins said. “I should have looked into it sooner.”