Venus* never forgot the advice her OB-GYN gave her after she went through menopause.
“If you ever have any kind of bleeding, see a doctor.”
Those words came to mind in February 2022 when Venus noticed a small amount of blood even though she was no longer getting periods. She quickly scheduled an appointment with her primary care physician.
That physician ordered an ultrasound, and when it came back, he told her she had no reason to worry — she didn’t have cancer. A few days later, however, Venus decided to ask for a second opinion during her routine OB-GYN appointment.
That provider ordered a biopsy. Within a week, Venus learned she had endometrial cancer.
Endometrial cancer on the rise
Endometrial cancer occurs when cancer cells enter the endometrium, or the lining of the uterus. Also known as uterine cancer, endometrial cancer is the
most common reproductive cancer among women or people assigned female at birth.
It’s also one of the few cancers with a rising mortality and diagnosis rate, with cases increasing about 1% each year in white women and 2%-3% each year in women in all other racial and ethnic groups. The American Cancer Society estimates that more than 67,000 new cases are diagnosed each year, and that 13,250 women each year will die from endometrial cancer.
Postmenopausal women are most at risk, with 60 being the average age of diagnosis. Black women are more likely to be diagnosed with endometrial cancer than white women — and they’re more likely to die from it.
Read: Why Are Black Women More Likely to Die from Endometrial Cancer? >>
Researchers have been working to figure out why endometrial cancer rates are rising for all women, and why
Black women have worse outcomes. One possible explanation may be that obesity rates have been rising since 1990. And obesity is a major risk factor for endometrial cancer, since fat tissue can increase estrogen levels.
Another factor researchers think could be connected to rising rates of endometrial cancer worldwide relates to lower birth rates and women giving birth for the first time at older ages. That’s because pregnancy and producing breast milk are protective factors against endometrial cancer.
One major discovery was that
two rare but aggressive forms of endometrial cancers called serous carcinoma and carcinosarcomaare more likely to be diagnosed in Black women than white women. And these cancers lead to worse outcomes than other forms of endometrial cancer. Black women also often have other factors that make their cancers more difficult to treat. They are more likely to have a subtype of uterine cancer with a specific mutation that is less likely to benefit from treatment. Almost 70% of Black patients had this higher-risk subtype, while just 35% of white patients did. In addition, Black women’s tumors often have fewer mutations. Tumors with fewer mutations are less likely to respond to certain forms of immunotherapy, meaning Black patients benefit less from these treatments that are highly effective for others.
“Serous carcinoma and carcinosarcoma are more aggressive types of uterine or endometrial cancers,” said Jayne Morgan, M.D., physician and healthy equity expert. “Having more aggressive types of endometrial cancer and cancers that have less opportunity to respond to immunotherapy are two factors making this cancer more deadly for Black women.”
Social determinants of health that can lead to worse outcomes for all conditions can also play a role in rising endometrial cancer diagnoses and mortality rates. A lack of access to healthcare because of socioeconomic factors like income, education and type of job, plus mistrust of the healthcare system, can lead to misdiagnosis or delayed diagnosis. So, by the time cancer is discovered, it could be at an advanced stage.
Obesity, Type 2 diabetes and lifestyles that don’t include a lot of physical activity can also raise the risk of developing endometrial cancer.
Know the symptoms of endometrial cancer
“The most common symptom of uterine cancer is abnormal vaginal bleeding,” Morgan said. “Certainly if you’re past menopause, if you’re having vaginal bleeding, that should be an alarm.”
Other symptoms can include heavier menstrual bleeding, more frequent periods, bleeding between periods and thickening of the uterine lining. Morgan said any lasting pelvic pain or pressure, unintended weight loss or urinary issues like frequent urination and difficulty urinating could also be warning signs.
“There are certain things women should look out for and think, ‘Oh, this could be something more serious,’” Morgan said. “[I’m] not saying it’s definitely endometrial cancer, but it’s something that could be a sign or a signal that they need to get this checked out more.”
A circle of support
Venus knows she could have been among the rising number of Black women with an advanced stage diagnosis.
Because she listened to her OB-GYN’s instructions about postmenopausal bleeding and sought a second opinion when she was told she didn’t have cancer, her healthcare providers (HCPs) were able to catch her endometrial cancer early — at stage IA. She had a full hysterectomy to remove her uterus but didn’t have to have chemotherapy. She’s been in remission ever since and sees her HCP every six months to make sure the disease hasn’t come back.
“I was blessed that I had that OB-GYN appointment scheduled,” Venus said. “As much as I appreciated the primary care doctor trying to move the process along, you shouldn’t give a diagnosis about cancer just by an ultrasound.”
Venus later learned that the primary care doctor was using a screening tool focused on the thickness of the uterine lining to determine whether a biopsy would be needed. Kemi Doll, M.D., a gynecologic oncologist with the University of Washington School of Medicine and founder of ECANA: Endometrial Cancer Action Network for African-Americans, led a study saying this tool often misses endometrial cancer in Black women.
Although Venus felt physically healthy after her diagnosis and surgery, the ordeal took a toll on her mental health. It was also difficult when her trusted OB-GYN and surgeon left the practice she used, and she had to find new providers.
Venus said ECANA was a significant source of support when she reached out and joined the organization late last year. When Venus found another HCP, she was comforted to learn that her new provider had worked with Doll in the past.
Venus has also found strength sharing her story to help other women gain more awareness about endometrial cancer.
“If you’re a woman who’s gone through menopause and you see any bleeding, make an appointment immediately,” she said. “Don’t put it off. If you’re only offered an ultrasound, ask for a biopsy. I’m so glad my gynecologist pushed for that. Only by the grace of God am I here to be able to talk about what I experienced.”
*Last name withheld for privacy reasons
This educational resource was created with support from Merck.
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