Uterine cancer is on the rise, especially among black women

Angelyn Jackson, a schoolteacher outside of Atlanta, initially confused the symptoms of uterine cancer with menopause. (Lynsey Weatherspoon/The New York Times)

Linda Collins had been in menopause for nearly a decade when she started bleeding again. The bleeding was light – occasional spotting, really – and she barely thought of it in passing.

When she finally went for a checkup, her doctor refused to let her go until she had a biopsy. Within days, Collins learned she had uterine cancer — and a particularly aggressive form of it.

“I had no pain, no other symptoms, and I didn’t think about it seriously,” said Collins, 64, a retiree in New York. “It was a mistake.”

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Uterine cancer, also known as endometrial cancer, is growing so rapidly that it is expected to overtake colorectal cancer by 2040 as the third most common cancer in women and the fourth leading cause of cancer death in men. women.

The death rate has been rising nearly 2% per year overall, with even steeper spikes among Asian, Hispanic and Black women, according to a recent study published in JAMA Oncology. Despite the increase, there has been little public attention to the disease.

Overall survival rates are high when uterine cancer is caught early, but few women know that a change in menstrual bleeding before or after menopause is one of the main warning signs, with pelvic pain and painful urination and intercourse.

It has long been believed that uterine cancer is less common in black women. But more recent studies have confirmed that it is not only more likely to strike black women, but also more likely to be fatal.

Black women die of uterine cancer twice as often as white women, according to a report released in March by an expert panel convened by the American College of Obstetricians and Gynecologists.

The gap is one of the largest racial disparities seen for any cancer, according to the report. 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 detected more often in young women who are still of childbearing age as well as in women who have no known risk factors, such as obesity, infertility and never having been pregnant, said Dr. Shannon Westin, gynecological oncologist at the MD Anderson Cancer Center at the University of Texas at Houston.

When she 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’s only been in practice for 15 years.

“It’s a clear indicator that we should sound the alarm,” Westin said.

Dr. Carol Brown, a gynecological oncologist at Memorial Sloan Kettering Cancer Center in New York, called the outbreak an epidemic.

“The striking statistic is that right now, in 2022, the number of women who will die from endometrial cancer in the United States is almost the same as those who will die from ovarian cancer, which which has been incredible for us in practice for 30 years,” said Brown, senior vice president and director of health equity at the center.

The JAMA Oncology study analyzed racial trends in uterine cancer while adjusting for hysterectomy rates. That’s important because black women have a higher rate of hysterectomies, said lead author Megan Clarke. (Women who have had a hysterectomy don’t have a uterus, so they can’t develop endometrial cancer; including them in the calculation artificially lowers the incidence rate.)

“By correcting for hysterectomy rates, we’re more confident — the increase is real,” said Clarke, a fellow at the National Cancer Institute.

Black women made up just under 10% of the 208,587 cases of uterine cancer diagnosed in the United States between 2000 and 2017, but they accounted for nearly 18% of the nearly 16,797 uterine cancer deaths in the during this period, according to Clarke’s study.

The death rate from uterine cancer among black women is 31.4 per 100,000 women aged 40 and over, compared to 15.2 per 100,000 for white women in the same age group, reported. Clarke. (Comparable death rates for Asian American women were 9 per 100,000 and for Hispanic Americans were 12.3 per 100,000.)

This makes uterine cancer an outlier, since progress has been made to narrow the racial gap in death rates from most cancers over the past two decades. Another report from the National Cancer Institute, published in JAMA Oncology in May, found that overall cancer death rates declined steadily among black Americans between 1999 and 2019, although they continue to be higher. higher than those of other racial and ethnic groups.

The reasons for the increase in cases of uterine cancer are not well understood. The most common form, endometrial cancer, is associated with estrogen exposure, which is higher in the presence of obesity, and obesity rates have increased in the United States.

But non-endometrioid cancer has also increased in prevalence, and it’s not linked to being overweight. 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 disease and have worse survival rates regardless of when they are diagnosed and what cancer subtype they have.

“At each stage of diagnosis, there are different outcomes,” said Dr. Karen Knudsen, CEO of the American Cancer Society. “Do they have access to the same quality of cancer care? She 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 provided to black and Hispanic women with uterine cancer. They were less likely than white women to have a 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 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 said it took her nearly a year to get the diagnosis. She went from doctor to doctor complaining of heavy and very painful monthly bleeding that had started after several months without a period 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. He showed thickening of the uterine wall, which may be suggestive of cancer, and the doctor immediately ordered a biopsy.

Three days later, the doctor called her to the office. “I knew then what it was. I knew it was cancer,” Moore said.

Moore said she is alive today because she persisted. “If your body is telling you something, you have to listen to it, and then you have to get others to listen to you,” she said.

Dr. Kemi Doll, a gynecological oncologist at the University of Washington School of Medicine in Seattle, has been researching for years to understand why so many black women are dying of endometrial cancer.

She found that ultrasounds that measure uterine wall thickness are less accurate when patients have the deadlier type of non-endometrioid uterine cancer, which is more common in black women.

Scans are also less effective when women have uterine fibroids, which obscure the view of the scan, she found. This may explain why black women, many of whom have uterine fibroids, are more often diagnosed later in the disease process, Doll said.

If the thickening is not discovered, doctors usually will not perform a biopsy to test for cancer.

Premenopausal women who have irregular menstrual cycles may not recognize that they need to be checked for uterine cancer because they think the irregularities are normal, Doll said. And perimenopausal women expecting 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 life are most at risk: “It’s the abnormality of the cycle that increases the risk of endometrial cancer, because of the imbalance of hormones. “

But the biggest problem, she said, is that there is so little public awareness. Women know they should have mammograms and Pap tests to screen for breast and cervical cancer.

“If someone found a lump in her breast, would she grow something back? Everyone was like, ‘No, no, no, go right now,'” Doll said. Womb cancer is four times more common than cervical cancer, she added, “and we haven’t had any national dialogue about it.”

When she gives women a diagnosis of uterine cancer, most say they’ve never heard of it, Doll added.

Treatment usually requires a complete hysterectomy, with surgical removal of the uterus, ovaries, fallopian tubes, and cervix. Radiation and drug treatments may also be needed, depending on the stage of the disease.

Having a hysterectomy can turn the lives of young women upside down, plunging them into surgical menopause and possibly requiring hormone therapy to manage side effects, and disrupting the plans of those hoping to have children.

Catched early, however, uterine cancer is considered highly curable. Angelyn Jackson, a 55-year-old elementary school teacher near Atlanta, decided last summer to resume annual health checkups disrupted by the pandemic. When she reported light bleeding, her gynecologist immediately checked her for uterine cancer.

Jackson was diagnosed on July 8 and underwent a hysterectomy 20 days later, catching the disease at an early stage, she said. She is still closely watched.

Three years have passed since Collins’ hysterectomy and radiation therapy. She now goes out of her way to tell friends and acquaintances to tell their doctor immediately about unusual bleeding or other symptoms like pain, bloating or sudden weight loss.

“I tell them, ‘Don’t wait; do not wait. If that doesn’t feel right to you, if you think it shouldn’t be happening, check it out,” Collins said. “I should have inquired sooner.”

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