Endometrial cancer is the fourth most common cancer diagnosed in the United States, and the seventh most common cause of cancer death among women.1 This year, nearly 66,000 women will be diagnosed with the cancer, and about 12,600 will die of the disease.2 And although endometrial cancer is one of the few cancers that is increasing in incidence and mortality for all women,1 it is especially deadly for Black women—who have a 90% higher 5-year mortality risk compared with White women and a 5-year mortality rate of 39% compared with 20% among White women.
These outcomes are due, in part, to disparities in cancer stage at diagnosis, with just 53% of Black women receiving an early diagnosis.3 However, a constellation of other factors, including obesity, socioeconomic differences, exposure to environmental carcinogens, as well as inherited or acquired genetic differences, may also be playing a role in endometrial cancer disparities in Black women, according to Onyinye D. Balogun, MD, Assistant Professor in the Department of Radiation Oncology at Weill Cornell Medicine and NewYork-Presbyterian Brooklyn Methodist Hospital.
Onyinye D. Balogun, MD
To identify the environmental, socioeconomic, lifestyle, and underlying molecular and genetic differences between racial and ethnic groups that may influence disparities in incidence, response to treatment, and survival in Black women diagnosed with endometrial cancer, Dr. Balogun and her colleagues were recently awarded a grant from the New York Genome Center Polyethnic-1000 (P-1000) research initiative to investigate the “Mechanisms of Endometrial Cancer Disparities in African Americans.” The 2-year study is a collaborative effort among researchers at Weill Cornell Medicine, NewYork-Presbyterian Brooklyn Methodist Hospital, Cold Spring Harbor Laboratory, and Northwell Health. The aims of the study are to establish an annotated biobank of whole-genome and RNA sequencing on malignant tumor and normal tissue samples from patients and to create clinical and experimental frameworks to close the knowledge gap in the understanding of racial disparities in endometrial cancer.
The ASCO Post talked with Dr. Balogun about overcoming barriers to patient recruitment for the study, assessing multifactorial causes of endometrial cancer in Black women, and ways to improve the rates of early diagnosis in these patients.
Overcoming Barriers to Clinical Trial Enrollment
Among the challenges of recruiting Black patients for clinical trials is their mistrust in medicine and medical professionals. How do you plan to overcome that challenge? How many patients do you plan to enroll in your study?
We are aiming to enroll about 70 patients into our study. It is not enough for us to make a definitive determination of a specific gene mutation that may make Black women more susceptible to endometrial cancer and result in poorer survival than White women, but it is a step in the right direction.
“We should not make subjective assumptions about minority patients’ interest or eligibility in participating in clinical trials.”— Onyinye D. Balogun, MD
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When it comes to medical mistrust by people in the Black community, there are a good number of both historical and modern-day examples to explain their hesitation to enroll in clinical studies. However, mistrust in the health-care system is not the only reason few Black patients participate in research studies. Out-of-pocket costs associated with clinical trials and a lack of access or knowledge about trials are also barriers to enrollment. Frequently, providers will decide a patient is not “fit” for a trial, so the patient may not even be aware of an appropriate study.
We should not make subjective assumptions about minority patients’ interest or eligibility in participating in clinical trials. Once you talk with people of color about clinical trial enrollment, they are often just as willing to participate as White patients. We have to offer relevant trials to all patients and let them make an informed decision.
How will you recruit patients for the study?
I am fortunate to have a relationship with SHARE (www.sharecancersupport.org/about-us/), a nonprofit organization that supports women with breast, ovarian, uterine, or metastatic breast cancer. We will do outreach with the organization to recruit patients with endometrial cancer. We are also going into local communities and holding virtual meetings with community organizations to make people aware of our study and broaden trust. I think we will have a very positive response, because we are doing something positive for the Black community.
We are also recruiting patients from our institutions, including NewYork-Presbyterian Brooklyn Methodist Hospital, where I see patients. We want to make sure patients with low income also have access to this type of inquiry, because often health insurance does not cover genomic testing, and the tests are expensive.
As the study continues, we hope to reach out to more community hospitals in the New York City area. We would like to provide this opportunity to patients who lack the resources to have their tumors tested in this way and broaden the diversity of patients represented in genetic databases, because we know patients’ immune systems respond differently to cancer and cancer treatment based on their genetic makeup. And the benefit will be twofold. First, the study will enable us to investigate endometrial cancer in women of African ancestry. Second, if patients have targetable genetic mutations, we may be able to provide treatment to improve survival outcomes.
Genetic and Sociodemographic-Influences in Cancer Development
In addition to studying the genetic and molecular causes of increased risk of endometrial cancer and poorer outcomes in Black women with endometrial cancer, you are also investigating nongenetic factors, such as environment, obesity, and socioeconomic disparities in these patients. Why?
One of the strengths of the P-1000 project is that in addition to the complex, in-depth data we will collect on the variants in genes associated with endometrial cancer, we will also collect important patient sociodemographic data. For example, we will be recording patients’ age, body mass index at the time of diagnosis, and pregnancy and breastfeeding histories, because these factors involve fluctuations in hormone levels that may or may not contribute to endometrial cancer risk. We are also collecting information on their insurance status, income history, medical literacy, and zip code to see whether there are environmental conditions that may be contributing to the development of this cancer; we may find some novel associations that might explain some of the outcome disparities in Black patients.
I know many people get riled up about studies looking at the clinical and sociodemographic factors that may influence cancer risk, because they think these types of investigations are trying to allocate blame on a specific cause. We know this study is not a panacea that will fix the ills of cancer disparities, but at least we hope to get closer to knowing what the genetic contribution may be, regardless of social, environmental, and socioeconomic status.
Improving Early Diagnosis Among Black Women
Only 53% of Black women receive an early diagnosis of endometrial cancer.3 Why are so many patients being diagnosed in more advanced stages of this cancer?
There are multiple reasons why so many Black women are diagnosed with late-stage endometrial cancer, including a knowledge gap or a misunderstanding of the cancer’s symptoms. For example, women may misinterpret a return of vaginal bleeding as a sign of youth and not as a negative occurrence. A recent study by Doll et al looked at the beliefs, interpretations, and experiences of Black women with endometrial cancer from symptom onset to diagnostic confirmation of cancer.3 They found that patients had an unclear definition of normal vs abnormal symptoms after menopause; misinterpreted bleeding symptoms; kept silent about bleeding symptoms during and after menopause because of stigma and shame; and received vague responses from health-care providers about cancer risk, which may have exacerbated a delay in diagnosis.
We have to do a better job of listening to patients’ concerns and providing them with information on cancer risk. We also need to develop evidence-based targeted interventions to improve the rates of early diagnosis among Black women with this type of cancer.
DISCLOSURE: Dr. Balogun reported no conflicts of interest.
REFERENCES
1. Henley SJ, Miller JW, Dowling NF, et al: Uterine cancer incidence and mortality—United States, 1999–2016. MMWR Morb Mortal Wkly Rep 67:1333-1338, 2018.
2. American Cancer Society: Key Statistics for Endometrial Cancer. Available at www.cancer.org/cancer/endometrial-cancer/about/key-statistics.html. Accessed November 24, 2020.
3. Doll KM, Hempstead B, Alson J, et al: Assessment of prediagnostic experiences of Black women with endometrial cancer in the United States. JAMA Netw Open 3:e204954, 2020.