Published research has shown that racial disparities in endometrial cancer have increased over the past decade, with black women having a 90% higher 5-year mortality risk when compared with white women. “Much of this higher risk has been attributed to black women being diagnosed when their cancer is at an advanced stage,” says Kemi M. Doll, MD. Only about 53% of black women receive an early diagnosis of endometrial cancer.
Although guidelines for diagnostic exams of postmenopausal bleeding are available, these recommendations assume that patients promptly report symptoms and that healthcare providers (HCPs) take immediate action. The interpretation of menopausal symptoms as not new, not bothersome, or not painful may lead to delays in care. In addition, research shows that black women are 3 to 4 times more likely to have a premenopausal hysterectomy than white women. This high rate may result from a lack of familial and community communication about how women transition through menopause.
A Qualitative Study
A study by Dr. Doll and colleagues published in JAMA Open Network examined the beliefs, interpretations, and experiences of symptom onset and diagnosis in black women with endometrial cancer. They collected data during semi-structured interviews of 15 black women aged 31 to 72 years with endometrial cancer to identify emergent themes. Most participants (8) lived in Washington while 2 lived in California, and 1 participant each lived in Alabama, Michigan, Louisiana, Georgia, and New York. “We wanted to describe the prediagnostic experiences of symptoms and symptom disclosure among black women with endometrial cancer,” adds Dr. Doll.
Women in the study reported lacking knowledge about menopause, not discussing symptoms with their HCP, and misinterpreting vaginal bleeding (Table). Many women also reported that their HCPs did not communicate their level of risk. “Unclear definitions of menopause and expectations about this transition may leave black women vulnerable to thinking experiences like bleeding, pain, bloating, or fatigue are normal,” Dr. Doll says. “The nature of these symptoms and how they are interpreted are important factors in the perception of risk. As a result, many women were silent about their symptoms.”
It is important to put the study data into the larger context of gynecologic health among black women, according to Dr. Doll. “Delays in care may be prevalent before and immediately after symptoms are disclosed to their HCPs,” she says. “We must find ways to open communication lines with our patients. Patients may feel uncomfortable discussing their menopausal symptoms but taking as little as 30 to 60 seconds to investigate symptom complaints may lead to earlier diagnosis and treatment.”
A troubling finding of the study was that when women experiencing symptoms sought care, it did not appear to prompt an appropriate level of concern from HCPs. “This is especially disturbing given the high risk of endometrial cancer among black women,” Dr. Doll says. “The misalignment between health risk and HCP response was observed in the lack of communication about cancer risk after women disclosed their bleeding symptoms. This minimization of cancer risk may exacerbate delays in diagnosis.”
Greater Vigilance Required
According to Dr. Doll, HCPs need to frame conversations about endometrial cancer similar to how this is done for breast cancer. “We are vigilant about screening for breast cancer and asking about lumps in the breasts,” she says. “We should also be vigilant by asking about the menopausal symptoms our patients experience so we can detect endometrial cancer as early as possible. Efforts are needed to reduce the silence around discussing these symptoms.”
In future research, Dr. Doll says studies are warranted to develop formal assessments when discussing symptoms associated with endometrial cancer. “HCPs need evidenced-based supporting materials that will help open the communication lines with patients,” she says. “Since black women may be hesitant to talk about their symptoms, validated assessment tools may facilitate these conversations in the future and improve patient outcomes.”
Doll KM, Hempstead B, Alson J, Sage L, Lavallee D. Assessment of prediagnostic experiences of black women with endometrial cancer in the United States. JAMA Netw Open. 2020;3(5):e204954. Available at: https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2766042.
Doll KM, Snyder CR, Ford CL. Endometrial cancer disparities: a race-conscious critique of the literature. Am J Obstet Gynecol. 2018;218(5):474-482.
Doll KM, Winn AN, Goff BA. Untangling the black-white mortality gap in endometrial cancer: a cohort simulation. Am J Obstet Gynecol. 2017;216(3):324-325.
Doll KM, Hempstead B, Truitt AR. Seeking black women’s voices in endometrial cancer research via deliberate community engagement. Prog Community Health Partnersh. 2019;13(3):253-264.