What Black Women Need to Know About Endometrial Cancer

What Black Women Need To
Know About Endometrial Cancer
KEMI M. DOLL, MS MSCR
Assistant Professor
CONFIDENTIAL – DO NOT DISTRIBUTE
Department of Obstetrics and Gynecology
Division of Gynecologic Oncology
University of Washington School of Medicine
SHARE Webinar
University of Washington
July 22 2020
@KemiDoll

Goals
1. Introduce endometrial cancer and risks among Black women
2. Discuss experiences of Black women with endometrial cancer
3. Identify actions to improve early detection among Black women with EC

Disclosure: I have a perspective
@KemiDoll

Black women’s reproductive health
Gynecologic Care
Higher rates of
- Fibroids
- Irregular cycles
- Infertility
- Premenopausal
Hysterectomy
Obstetrics and Maternal-Fetal Medicine
Higher rates of
- Preterm Labor
- Low Birth Weight infants
- Maternal mortality
Gynecologic Cancers
Higher mortality in
- Ovarian cancer
- Cervical cancer
- Endometrial cancer
Eichelberger, Doll, Ekpo & Zerden. Black Lives Matter: Claiming a Space for
Evidence-Based Outrage in Obstetrics and Gynecology. AJPH. Oct 2016.

Endometrial Cancer
63,000 cases/ year
Lifetime risk in US: 3%
1 in 37 women by age 80
5-year survival: 81%

How Common Is Endometrial Cancer?

Rateper100,000
White
1999
10
Black
2004 2009 2014
20
30
0
Data from: SEER cancer statistics review 1975-2016, Available at: seer.cancer.gov
US Endometrial Cancer Statistics by
Race/Ethnicity: Incidence
Asian, Hispanic, American
Indian / Alaska Native*

• About 63,000 women are diagnosed with
uterine cancer in the US each year.
• FOUR TIMES more than cervical cancer
• Today, there are 725,000 women living with
uterine cancer, including 46,000 Black women.
• About 1 in 37 Black women will be diagnosed
with a uterine cancer at some point in her life.
• For cervical cancer, it is 1 in 130
• For ovarian, it is 1 in 70

What is the prognosis for Endometrial
Cancer?

Overall, over 80% of women survive their
endometrial cancer diagnosis.

Data from: SEER cancer statistics review 1975-2016, Available at: seer.cancer.gov
0
2
4
6
8
10
2000 2004 2008 2012 2016
Rateper100K
Black
White
Asian, Hispanic, American Indian /
Alaska Native*
Black women have a 90% higher mortality than
White women in the U.S.

Rank Cancer Black:White Mortality
Rate Ratio
1 Stomach 2.3
2 Multiple Myeloma 2.3
3 Uterine
(Endometrial)
2.0
(1.6-2.9)
4 Cervix 1.8
5 Breast 1.4
6 Colorectal 1.3
DeSantis et al, CA: A Cancer Journal for Clinicians, 2019
Cote et al, Cancer Epidemiol Biomarkers Prev, 2015
Endometrial Cancer
US Mortality Rates by Race/Ethnicity 1999-2016
The Black-White mortality gap in endometrial cancer
is one of the largest in all of cancer care in the US.
0
2
4
6
8
10
2000 2004 2008 2012 2016
Rateper100K
Black
White
Asian, Hispanic, American
Indian / Alaska Native*

“The only thing wrong with Black people is
that we think there’s something wrong with
Black people.”
Disease outcomes attributed to innately inferior racial biology
Tuberculosis Typhus (Mexican workers)
Syphilis Schizophrenia
Cervical cancer Endometrial cancer?
-- Stamped from the Beginning: The Definitive History of Racist Ideas in America, pg 10, Ibram X. Kendi, PhD

Symptoms Biopsy
Specialty
Referral
Surgery
Observation
Chemotherapy
Radiation
Other
The journey of endometrial
cancer diagnosis and treatment
has many steps.

Symptoms Biopsy
Specialty
Referral
Surgery
Observation
Chemotherapy
Radiation
Other
My focus today is on early
detection.

Absolute 5-year mortality gap:
19.3%  11.6%
Doll KM, Winn AN, & Goff BA. AJOG.
March 2017.
Data Source:
SEER 18-Registry
EC Cases 2004 - 2009
Base Population N=
34, 580
3 Cohort Simulation Scenarios
Status Quo 1: Racially
Equivalent
Surgery Rates
2: Racially
Equivalent
Stage
3: Racially
Equivalent
Surgery and
Stage
20%
16%
12%
8%
4%
0%
Black-WhiteMortalityGap
40% of Black-White
mortality gap is
attributable to
stage at diagnosis
and surgery rates

Stage at diagnosis determines your likelihood of
survival.
At nearly every age group, and every type of
endometrial cancer, Black women are diagnosed with
more advanced stages.
This late stage at diagnosis is a MAJOR driver of the
excess death among Black women.

Symptoms:
post-
menopausal
bleeding
Diagnosis:
endometrial
cancer
Gynecologic
Ultrasound
Endometrial Biopsy
Uterine Dilation &
Curettage (“D&C”)
Most women present with bleeding, and then are many
pathways to diagnosis

Black women, however, are less likely to receive the appropriate
diagnostic procedures to confirm an endometrial cancer.
Doll KM, Khor S, Odem-Davis K, He H, Wolff E, Flum D, Ramsey S, Goff BA. AJOG. Dec 2018

Doll KM, Khor S, Odem-Davis K, He H, Wolff E, Flum D, Ramsey S, Goff BA. AJOG. Dec 2018
Conclusions
Although Black women are at greatest risk for aggressive histologic
subtypes, they are less likely
o to have bleeding categorized as post-menopausal
o to have bleeding documented at all
o to have appropriate diagnostic procedures.
These non-guideline-concordant pathways are significantly associated
with advanced stage at diagnosis and represent a potential point of
intervention.

Adherence to guidelines may be influenced by
the normalization of bleeding in Black women
Gynecologic Care
Higher rates of
- Fibroids
- Irregular cycles
cause abnormal bleeding
in young black women
Gynecologic Cancers
Results in normalcy of
abnormal bleeding in older
black women
- Endometrial cancer
Context: Black women’s reproductive health

How are Black women experiencing symptoms and healthcare interactions prior to
and during diagnosis of endometrial cancer?
Goal: To understand the context in which women experience menopause, initial symptoms of
endometrial cancer and the diagnostic work up experience.
Doll KM, Hempstead B, & Truitt A. Progress in Community Health
Partnerships: Research, Education and Action. 2019. PMID: 31564666

Date of download: 7/20/2020
Adapted from Health Belief Model for Knowledge, Attitudes, and Beliefs Among Black Women With Endometrial CancerFor each
component of individual belief, the health belief model was adapted to include relevant race-specific contexts for US black women in
health care settings. For example, susceptibility to or risk of developing a symptom among black women may be associated with a
race-specific context, such as the US health care environment, in which the severity of physical ailments among black women has
been reported to be minimized. D&C indicates dilation and curettage; EB, endometrial biopsy; and TVS, transvaginal ultrasound.
Figure Legend:

Interview Guide
Menopause PMB Symptom Disclosure Diagnostic Experience
Tell me about what
menopause was like for you.
How did you know what
menopause would be like or
what to expect?
Tell me about any vaginal
bleeding, spotting, or
discharge you had before
your diagnosis.
What did your friends/family
say about it?
What did a healthcare
provider say about it?
Tell me about what happened
when you first told a medical
professional.
Tell me about what medical
advice or recommendations
you were given after
reporting your symptoms.
Tell me about the time when
you first received news of
your diagnosis.
General reflection questions – Advice/Wisdom for other women
Race-specific questions – How do Black women experience this
differently? Did being Black affect your experience?

Black women’s experiences
Menopause
normal vs. abnormal symptoms
silencing about bleeding
specific knowledge gaps
secondary to hysterectomy
among family
“Well, the thing is, Black women don't really talk so much about menopause. They talk
more about hot flashes. They don't talk about ... You know, they'll say, "Oh, I’m going
through these hot flashes. I'm going through menopause." They don't talk about the
period thing, you know? That's not something that they talk about.”

Menopause
among family
Postmenopausal Bleeding
Self-reliance strategy of
endurance
Interpretation of resumption of
menstruation
or
prolongation of menopause.
“I thought the menopause was trying to finish because I didn't have a lot of pain. I
just didn't. I figured if something was wrong I would be hurting.”
“I was just surprised. Just surprised. Not alarmed, because it wasn’t heavy at all.
Very light. But it was there. And I’m like, ‘Is that blood?’ ….Because it was nothing
compared to what I’d been used to since I was in my 20s. Nothing.”

Menopause
among family
endurance
menstruation
or
“Now I know that I wasn't crazy, but you could easily talk yourself out of thinking
something is wrong when it can be explained by, oh you know, you feel like you got gas,
you feel bloated, you're going through menopause, you have fibroids.”
Symptom Disclosure
bleeding continuing
after a period of
waiting
increased severity of
bleeding or the onset of
pain.
Why did you decide to report your bleeding or other symptoms at this particular time?
A: “Because it had been happening for just about a year.”

Menopause
among family
endurance
menstruation
or
“Once she got the ultrasounds back is when she said, "Oh, it looks like there's heavy lining
in your uterine walls so I'm just gonna send you to this doctor and have it checked out.”
Symptom Disclosure
bleeding continuing
after a period of
waiting
increased severity of
bleeding or the onset of
pain.
Diagnostic Work Up
lack of explicit discussion from
providers of cancer as a potential
diagnosis
minimization of the importance
of further work up.
“Yeah, at the doctor's office. Just a regular pap smear. You know, going in for your
regular pap smear, and saying, "You know, I've been doing some spotting." And,
"That's that’s just normal. That happens." Basically that was it.”

before diagnosis of EC
Black women expressed multiple factors associated with delay
- Nature of symptoms: not new, bothersome, painful
- Misattribution of symptoms: fibroids, irregular cycles
- Cue to action: personal waiting period, symptom severity
Doll KM, Hempstead BH, Sage L, Alson JA, Lavallee D. MBEC: Menopause, Bleeding, and
Endometrial Cancer. Presented at SGO Annual Meeting March 2019.

Keep doing the research!
How are Peri-menopausal Reproductive Symptoms Assessed by First Line
Providers?
How do fibroids influence whether or not a woman is diagnosed correctly?
How does lifetime stress influence the risk of the uterus to endometrial
cancer?

COMMUNITY
EDUCATION
RESEARCH
https://ecanawomen.org

Endometrial Cancer Action Network for
African Americans (ECANA)
We are a group of women who have come together to create support,
community, and empowerment for any African-American woman affected by
endometrial cancer.
We are doctors, patients, survivors, community advocates, and professional
leaders all committed to one purpose – improving the lives of Black women
affected by this disease. We know that Black women’s reproductive health
care is not as it should be, and we are here to bridge the gap. We are realistic
and optimistic. We are here to motivate you and listen to you.

ECANA Steering Group
Patient-centered = Black EC survivors
Name Perspective
Dr. Kemi Doll Project Lead
Margie Willis Patient partner
Adrienne Moore Patient partner
Martha Jean Williams Patient partner
Bridgette Hempstead Community partner
Dr. Danielle Lavallee Researcher
Drs. Carol Brown, Laurel Rice, Charlotte
Gamble, Tracy Irwin
Clinicians
Julianna Alson and Liz Sage Project staff
Values
Transparency
Trustworthiness
Co-learning
Solutions-focused

ECANA activities
COMMUNITY
• Website content - Our Stories
• Survivor Sanctuary
EDUCATION
• Website content
• Peer education program
RESEARCH
• Partnering with researchers
• Publishing our findings

ECANA Conference for Community, Education,
and Research Training
March 15th – 16th, 2019 Honolulu, HI
SGO Annual Meeting on Women’s Cancer
Leaders in
Reproductive Justice
National Partnership
for Women and
Families
SGO Leadership
Clinicians
ECANA
Women

ECANA Conference for Community, Education, and Research Training
Peer education sessions
across the US in 2019 focused
on targeted knowledge gaps
identified in MBEC Study.

ECANA in action: CEPs©
-EC
• Community Empowerment Partners (CEPs) aims
to increase knowledge and empowerment, and
improve health outcomes in the Black
community.
• Trained ECANA Ambassadors in 11 states
• Program Evaluation:
• EC knowledge
• Confidence
• Fidelity, feasibility, and acceptability
© Bridgette Hempstead 2019

Survivors Sanctuary
Gentle movement and conversation,
every other Friday on virtual ZOOM!

+ Endometrial Cancer
US Mortality Rates by
Race/Ethnicity 1999-2014
Rateper100,000

COMMUNITY
People with cancer who
have strong social and
peer support respond
better to treatment, have
a better quality of life,
and longer survival.
EDUCATION
Increasing knowledge
of early symptoms of
EC and appropriate
treatment maximizes
the number of women
who get an early
diagnosis and the
highest quality of care.
RESEARCH
Participating in
research efforts
ensures that research
studies are designed to
improve the outcomes of
all women, including
Black women.

Action Steps for Black women
AT RISK / Pre-Diagnosis
• Actively manage any irregularity with
your menstrual cycle
• Keep your relationship with your
OBGYN through menopause
• Maintain a healthy body weight
• Be aware & seek care!

During or After Diagnosis
• You deserve excellent provider
communication
• LISTEN to you
• TRUST you and your
experiences
• EXPLAIN things until you
understand
• Ensure you have support from loved
ones AND a larger EC community

Ensure you have support
from loved ones…
AND a larger endometrial
cancer community

• Inform yourself so you can advocate for
yourself!
• “Know Before You Go”
• Abnormal bleeding
• Surgery
• Chemotherapy
• Radiation
https://ecanawomen.org/education/know-you-go

ACKNOWLEDGEMENTS
Project Team
• Liz Sage, MPH
• Julianna Alson, MPH
• Ashley Nguyen, BA
• Sarah Romano, MPH
ECANA Team
• Bridgette Hempstead
• Adrienne Moore
• Margie Willis
Mentors
• Barbara Goff, MD
• Scott Ramsey, MD PhD
Advisory Group
• Chandra Ford, PhD
• Danielle Lavallee, PhD
Funding Support:
Robert Wood Johnson Foundation
National Comprehensive Cancer
Network
Patient Centered Outcomes
Research Institute (PCORI)
UW Institute for Translational
Health Science
UW Dept of OBGYN

t: t:@KemiDoll
@ecanawomen
https://ecanawomen.org/donate
THANK YOU

What Black Women Need to Know About Endometrial Cancer

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