Linda Collins had been in menopause for nearly a decade when she started bleeding again. The bleeding was mild – occasional spotting, actually – and she barely thought about it.
When she finally went for a checkup, her doctor refused to let her go until she had a biopsy. Within days, she Collins learned that she had uterine cancer and a particularly aggressive form of it.
“I had no pain, no other symptoms, and I didn’t really think about it,” said Collins, 64, a retiree from New York City. “It was a mistake.”
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Cancer of the uterus, also called endometrial cancer, is increasing so rapidly that by 2040 it is expected to replace colorectal cancer as the third most common cancer among women and the fourth leading cause of cancer death in women. .
The death rate overall has risen nearly 2% annually, with even more acute 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 a major warning sign, along with pelvic pain and urination and painful sexual intercourse.
It was long believed that uterine cancer was less common among black women. But more recent studies have confirmed that not only is it more likely to affect black women, but it is also more lethal.
Black women die from uterine cancer at twice the rate of white women, according to a March report by 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 most often detected in younger women who are still of childbearing age, as well as in women who do not have any of the known risk factors, such as obesity, infertility and not being never been pregnant, said Dr. Shannon Westin, a gynecological oncologist at the University of Texas MD Anderson Cancer Center in Houston.
When she started caring for women with uterine cancer, she said, there were about 39,000 new cases a year. There are now more than 65,000 – and in practice it has only been 15 years.
“This is a clear indicator that we should sound the alarm bell,” Westin said.
Dr. Carol Brown, a gynecological oncologist at Memorial Sloan Kettering Cancer Center in New York, has called the increase in cases an epidemic.
“The surprising statistic is that right now, in the year 2022, the number of women who will lose their lives due to endometrial cancer in the United States is almost the same as those who will die from ovarian cancer, which is unbelievable. for those of us in practice for the past 30 years, ”said Brown, who is the center’s senior vice president and head of health equity.
The JAMA Oncology study analyzed racial trends in uterine cancer by correcting hysterectomy rates. This is important, because black women have a higher rate of hysterectomies, said lead author Megan Clarke. (Women who have undergone a hysterectomy do not have a uterus, so they cannot develop endometrial cancer; including them in the calculation artificially reduces the incidence rate.)
“By correcting for hysterectomy rates, we are more confident: the increase is real,” said Clarke, a colleague at the National Cancer Institute.
Black women accounted for just under 10 percent of the 208,587 uterine cancer cases diagnosed in the United States between 2000 and 2017, but they accounted for nearly 18 percent of nearly 16,797 uterine cancer deaths during that period, according to Clarke’s study.
The uterine cancer death rate for black women is 31.4 per 100,000 women aged 40 and over, compared with 15.2 per 100,000 for white women in the same age group, Clarke said. (Comparable death rates for Asian American women were 9 per 100,000 and for Hispanic Americans 12.3 per 100,000.)
This makes uterine cancer an outlier, as progress has been made in narrowing the racial gap in the death rates of most cancers over the past two decades. Another National Cancer Institute report, published in JAMA Oncology in May, found that overall cancer death rates steadily declined among black Americans between 1999 and 2019, although they continue to outperform those in other groups. racial and ethnic.
The reasons for the increase in uterine cancer cases are not well understood. The most common form, endometrial cancer, is associated with estrogen exposure, which is higher when obesity is present and obesity rates are on the rise in the United States
But non-endometrioid cancer has also increased in prevalence and 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 disease and their survival rates are worse regardless of when they are diagnosed and what subtype of cancer they have.
“At each stage of the diagnosis, there are different results,” said Dr. Karen Knudsen, CEO of the American Cancer Society. “Do they have access to the same quality of cancer care?” She asked for more research on the factors driving the trends.
The panel of experts 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. Compared to white women, they were less likely to have a hysterectomy, less likely to have proper biopsy of their lymph nodes 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 diagnosed. She went from doctor to doctor complaining of heavy and very painful monthly bleeding that started after several months without any period.
Moore, now 51, was uninsured at the time, and the doctors she consulted have dismissed her complaints as symptoms of perimenopause or fibroids.
After Moore bought health insurance under the Affordable Care Act, she saw a gynecologist who performed another scan. He showed a thickening of the uterine wall, which may be indicative of cancer, and the doctor immediately ordered a biopsy.
Three days later, the doctor called her into 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 have to listen to it, and then you have to get other people to listen to you,” she said.
Dr. Kemi Doll, a gynecological oncologist at the University of Washington School of Medicine in Seattle, has been conducting research for years to understand why so many black women die from endometrial cancer.
It found that ultrasound scans that measure uterine wall thickness are less accurate when patients have the deadliest type of non-endometrioid uterine cancer, which is more common among black women.
Scans are also less effective when women have uterine fibroids, which obscure the scanner’s vision, she found. This may explain why black women, many of whom suffer from uterine fibroids, are more often diagnosed later in the disease process, Doll said.
If the thickening is not detected, doctors will generally not perform a biopsy to test for cancer.
Premenopausal women who have irregular menstrual cycles may not recognize that they need to check for uterine cancer because they think of irregularities as normal, Doll said. And perimenopausal women who expect abnormal bleeding may not even recognize when something is wrong, she said.
“We have to rethink our guidelines,” Doll said. Women who have abnormal cycles and unusual bleeding throughout their life are at higher risk: “It is the abnormality of the cycle that increases the risk of endometrial cancer, due to the dysregulation of hormones.”
But the bigger problem, he 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 postpone doing something? Everyone would tell her, ‘No, no, no, go now,’ “Doll said. Uterine cancer is four times more common than cervical cancer, she added,” and we haven’t had any national dialogue. to about”.
When diagnosing women with 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. Radiotherapy and drug therapies may also be needed, depending on the stage of the disease.
Undergoing a hysterectomy can alter the lives of young women, plunge them into surgical menopause, and possibly require hormone treatment to manage side effects and disrupt the plans of those hoping to have children.
Caught early, however, uterine cancer is considered highly treatable. Angelyn Jackson, a 55-year-old elementary school teacher outside Atlanta, decided last summer to resume annual checkups interrupted by the pandemic. When she reported a slight bleeding, her gynecologist immediately checked her for uterine cancer.
Jackson received the diagnosis on July 8 and underwent a hysterectomy 20 days later, detecting the disease at an early stage, he said. She is still closely observed.
It’s been three years since Collins hysterectomy and radiotherapy. He now goes to great lengths to tell friends and acquaintances to immediately talk to their doctors about unusual bleeding or other symptoms such as pain, swelling, or sudden weight loss.
“I tell them: ‘Don’t wait; do not wait. If it doesn’t feel right, if you think it shouldn’t happen, take a look, ‘”Collins said.” I should have looked into it first. “
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