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By the end of 2021, approximately 60,000 new cases of endometrial cancer will be diagnosed in the U.S. Over 10,000 patients will die from it—and the majority of these people will be Black women.
Endometrial cancer develops in the inner lining of the uterus and is the most common type of uterine cancer. Though more White patients develop the disease, studies show that Black women with endometrial cancer:
- Are twice as likely to have high-risk histology—more aggressive, abnormal cancer cells
- Get surgery less often, regardless of the cancer’s progression
- Are more likely to be diagnosed after their cancer is at an advanced stage
- Have a 55% higher mortality rate than non-Black women
As a Black woman and a gynecologic oncologist, I’m passionate about discussing endometrial cancer risks with my patients. With endometrial cancer specifically, genetic, societal, and personal factors converge into a perfect storm of risk for Black women. And there is still much to learn about the disease itself from a biological standpoint.
Research on racial disparities in U.S. health care continues to grow alongside much-needed awareness about higher rates of several health conditions across the hardest-hit populations.
While we don’t have all the answers to solve disparities in diagnosis and treatment today, we know more than enough to reduce them—starting with better informing Black patients and their health care providers about the risks, symptoms, and treatment options for endometrial cancer.
Risk factors Black women need to know.
Several risk factors for endometrial cancer are universal, but Black women face additional genetic and social challenges that increase their chances of an advanced diagnosis.
Epigenetics is a change in gene function caused by environmental factors such as social, economic, and cultural inequities. Some evidence points to epigenetics as a possible reason why Black women develop more aggressive endometrial cancers. Stress compounded through generations—from slavery through segregation and ongoing racial tensions—may cause higher rates of abnormal cell behavior, resulting in more advanced cancers.
Implicit bias in the medical profession can lessen the quality and effectiveness of treatment, which is already complex and time sensitive —especially with aggressive cancers. Medical professionals must acknowledge and confront personal attitudes and beliefs about patients; implicit biases negatively influence health care delivery and patient outcomes, specifically for Black people.
Lower rates of hysterectomy and radiation may also be to blame. Research shows that Black women are less likely to receive surgery and subsequent radiation than White women.
Inadequate screening methods, such as some tools to measure endometrial thickness—a possible sign of endometrial cancer—miss almost five times more cases of endometrial cancer in Black women than white women. This is partly because non-cancerous uterine fibroids can make the lining harder to measure, and fibroids are more common in Black women.
Lynch syndrome is associated with approximately 3% of endometrial cancer diagnoses. This inherited gene mutation is also associated with cancers involving colon, ovary, urothelial tract (bladder and ureters), pancreas, stomach, or brain (glioblastoma). If you have a family history of the above cancers or Lynch syndrome, talk with your doctor about genetic testing to help determine your risk.
Obesity is a leading risk for developing endometrial cancer, in part because it increases patients’ estrogen levels. As obesity rates increase, younger women are developing endometrial cancer. Other factors that can increase estrogen and a woman’s risk of endometrial cancer include:
- Type 2 diabetes
- Never getting pregnant
- Starting menstruation before age 12
- Taking certain hormone therapies for breast cancer, such as tamoxifen
Symptoms and diagnosis.
One of the few qualitative studies of Black patients’ experiences with endometrial cancer shows that diagnosis and treatment are often delayed because women are unaware of their symptoms and risk.
Providers may not suspect endometrial cancer right away because of the crossover of gynecologic cancer symptoms, particularly in younger patients. While most cases develop after menopause, we’ve treated patients in their 20s and 30s for endometrial cancer.
The longer the cancer goes undetected, the further it spreads—and the less responsive it becomes to treatment. This is why early recognition of symptoms and timely diagnosis are critical to achieve good outcomes.
Abnormal bleeding is the most recognizable symptom of endometrial cancer. See a doctor if you experience bleeding between periods, heavy bleeding after age 40, and any vaginal bleeding after menopause. If your bleeding patterns change, or you start having bleeding during or after sex, you should also talk with your doctor. Sometimes patients experience bloating and lower abdominal pain or cramping.
Do not accept these symptoms as normal—if they last longer than two weeks, see a doctor because something may be wrong. The earlier you get checked out, the sooner we can help you feel better. Even if your symptoms are not caused by cancer, there are many ways to treat heavy or bothersome vaginal bleeding.
If you or your doctor suspect you might have endometrial cancer, you should feel empowered to ask for exams or tests to find out for sure. These include:
- Pelvic or transvaginal ultrasound for a detailed image of the uterus and surrounding area
- Uterine biopsy (tissue sampling) to test cells for cancer
- Chest X-ray, CT scan, or MRI to see if the cancer has spread
Endometrial cancer is categorized by four stages, depending on where it spreads:
- Stays in the uterus
- Spreads to the cervix
- Travels outside of the uterus but not beyond the pelvis
- Spreads outside the pelvis to organs such as the bowel, bladder, or abdomen (metastatic cancer)
If you have endometrial cancer, your doctor will order imaging and laboratory tests to determine the disease stage. From there, they will work with you to create a treatment plan that fits with your overall health goals and lifestyle.
Related reading: Why you shouldn’t delay cancer screenings.
Treatment options to ask about.
Endometrial cancer treatment typically involves a combination of surgery, chemotherapy, and radiation.
Early-stage endometrial cancer often can be cured with surgery, since there is a low risk of the cancer coming back. A total hysterectomy —removal of the uterus and cervix—is the most common surgical treatment. We will usually remove the fallopian tubes and ovaries, as well as some pelvic lymph nodes to help us see if the cancer has spread, and also to decrease the hormonal stimulation from the ovaries that may contribute to cancer recurrence.
Locally advanced cancer (that has spread to the cervix or lymph nodes) has a higher risk of recurrence and might also require radiation, chemotherapy, or both, depending on how far the cancer has spread and how many cancer cells remain after surgery. Sometimes, if the cancer is already very advanced, we may jump straight to chemotherapy to help treat cancer cells all over the body, and keep surgery as a possibility for the future.
There are also some types of aggressive cancers (uterine serous, clear cell, carcinosarcomas) that need radiation and chemotherapy treatment even if the cancer is just in the uterus. It is important to ask your doctor to go through your pathology report with you in detail so that you understand exactly what type of cancer you have. I often suggest that patients have a trusted family or friend at their visit or available on the phone so that they can ask other questions that my patients may not think of during these important conversations.
With work, childcare, and everything in between, treatment can be difficult to navigate. But your health is worth the time it takes. Talk with your doctor about resources that can help you manage other priorities while receiving treatment.
Actions patients can take now.
Trust yourself. You know your body better than anyone, and if something feels different, advocate for your health. Be persistent about getting an answer for why you’re experiencing certain symptoms.
I understand how hard it can be for women to prioritize their health, and you are worth it. If your provider doesn’t share your level of concern, request a cancer screening test or seek a second opinion.
Related reading: How and why to get a second opinion for cancer diagnosis using video visits.
I entered the medical profession to take care of women because they play a central role in the health of our communities. One of the most rewarding and enjoyable aspects of my career has been joining the steering committee of the Endometrial Cancer Action Network for African-Americans (ECANA).
We promote awareness of endometrial cancer and its effects on Black women, and provide a support network for Black patients to share the burden of pain and challenges that accompany a cancer diagnosis and treatment. If you or someone you know is affected by endometrial cancer, I encourage you to join our community to better advocate for yourself and other women.
