Linda Collins had been menopausal for nearly a decade when she started bleeding again. The bleeding was light—occasional spotting, in fact—and she hardly gave it much thought.
When she finally went in for a general exam, her doctor refused to let her out until she had a biopsy. Within days, Collins discovered that she had cancer of the uterus, in an especially aggressive way.
“I didn’t feel any pain, any other symptoms, and I didn’t seriously think about it,” said Collins, 64, a retiree who lives in New York. “It was a mistake.”
Cancer of the uterus, also called endometrial cancer, is increasing so rapidly that it is estimated that by 2040 it will replace colorectal cancer as the third most common cancer among women and the fourth leading cause of cancer deaths in women.
The death rate has been increasing by nearly 2% a year overall, with even steeper peaks among Asian, Hispanic and black women, according to a recent study published in the journal JAMA Oncology. Despite the increase, there is not much 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, when urinating or in sexual relationships.
Uterine cancer was believed to be less common among black women. More recent studies have confirmed that not only is it more likely to strike black women, it is also more likely to be deadly.
Twice as many black women die of uterine cancer as white women, according to a report released in March by an expert group convened by the American College of Obstetricians and Gynecologists.
The difference is one of the biggest racial disparities seen in any cancer, according to the report. Black women are also more likely to develop a form of uterine cancer called non-endometrioid, which is more aggressive.
Among all populations, uterine cancer is being detected most frequently 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 never having been pregnant, said the report. Dr. Shannon Westin, a gynecological oncologist at the MD Anderson Cancer Center at the University of Texas at Houston, USA.
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 has only been in the profession for 15 years.
“This is a clear indicator that we should be sounding the alarm bells,” Westin said.
Carol Brown, a gynecologic oncologist at Memorial Sloan Kettering Cancer Center in New York, calls the increase in cases an epidemic.
“The staggering statistic is that today, in 2022, the number of women who will lose their lives to endometrial cancer in the United States is almost the same number who will die from ovarian cancer, which is unbelievable for us in the profession in the last 30 years. “, said Brown, who is the center’s senior vice president and director of health equity.
The JAMA Oncology study looked at racial trends in uterine cancer while correcting for hysterectomy rates. This is 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 calculation artificially reduces the incidence rate.)
“By correcting for hysterectomy rates, we are more confident — the increase is real,” said Clarke, a fellow at the National Cancer Institute.
Black women accounted for just under 10% of the 208,587 cases of uterine cancer diagnosed in the US between 2000 and 2017, but they constituted nearly 18% of the 16,797 deaths from the disease during that period, according to Clarke’s study.
The uterine cancer mortality rate in 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 reported. Among Asian-American women, the mortality rate was 9 per 100,000 and for Hispanic Americans, 12.3 per 100,000.
This makes uterine cancer an exception, as progress has been made in reducing the racial gap in death rates for 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 steadily declined among black Americans between 1999 and 2019, although they remain higher than those of other racial and ethnic groups. ethnic.
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 increasing in the US.
But non-endometrioid cancer has also increased in prevalence and is not related 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 their survival rates are worse, no matter when they are diagnosed and what subtype of cancer they have.
“At each stage of diagnosis there are different results,” said Dr. Karen Knudsen, CEO of the American Cancer Society. “Are they getting access to the same quality of care?” The doctor 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 of 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.
Dr. Kemi Doll, a gynecological oncologist at the University of Washington School of Medicine in Seattle, has been researching for years why so many black women die from endometrial cancer.
She found that ultrasounds that measure the thickness of the uterine wall are less accurate when patients have the more lethal, non-endometrioid type of uterine cancer that is more common among black women.
The scans are also less effective when women have uterine fibroids, which obscure the imaging device’s view, 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 discovered, doctors will usually not perform a biopsy to test for cancer.
Premenopausal women who have erratic menstrual cycles may not recognize they need to be checked for uterine cancer because they think irregularities are normal, Doll said. And perimenopausal women who expect abnormal bleeding may also not identify that something is wrong, she said.
“We need to rethink our guidelines,” said Doll. Women who have abnormal cycles and unusual bleeding throughout their lives are at greater risk. “It is the abnormality of the cycle that increases the risk of endometrial cancer, because of the dysregulation of hormones.”
But the biggest problem, she said, is that there is very 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 something off? Everyone would tell her, ‘No, no, go right now,'” Doll said. Uterine 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 therapies and medications may also be necessary, 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 control side effects and disrupting the plans of those who wanted to have children.
It’s been three years since Collins’ hysterectomy and radiation. She now does her best to tell friends and acquaintances to talk to their doctors right away about unusual bleeding or other symptoms like pain, swelling or sudden weight loss.
“I tell them, ‘Don’t wait; don’t wait. If it doesn’t feel right, if you think it shouldn’t be happening – take a look,'” Collins said. “I should have investigated this sooner.”
Translated by Luiz Roberto M. Gonçalves