Abstract
Objectives
Timely recognition of pre-diagnosis symptoms plays a key role in early diagnosis of endometrial cancer (EC). Symptom profiles may vary by conditions such as fibroids or obesity which are differentially distributed by race. We describe pre-diagnosis symptom reporting among EC survivors by race, fibroids history, and body mass index (BMI).
Methods
We calculated prevalence ratios (PR) and 95% confidence intervals (CI) for 6 menstrual and 7 non-menstrual self-reported, pre-diagnosis symptoms using Poisson regression. We assessed participants' pre-diagnosis knowledge about postmenopausal bleeding and reporting of symptoms to healthcare providers.
Results
Among 638 Carolina Endometrial Cancer Study participants, 36% self-identified as Black or African American and 64% as White. Women with fibroids (versus without) were more likely to report heavy periods (PR = 1.23, 95% CI 1.09–1.40), periods of >7 days (PR = 1.37, 95% CI 1.09–1.71), and non-menstrual symptoms (PR = 1.15, 95% CI 1.05–1.25). Women with a BMI >30 kg/m2 (versus ≤30) were more likely to report both menstrual (PR = 1.07, 95% CI 1.01–1.14) and non-menstrual (PR = 1.12, 95% CI 1.01–1.24) symptoms, particularly fatigue (PR = 1.40, 95% CI 1.12–1.74). After adjustment for age, fibroids history, and BMI, reported symptom experience profiles did not vary by race. Most (90%) women who reported postmenopausal bleeding discussed their symptoms with a provider; relatively few (23%) were aware of bleeding as a potential symptom of endometrial cancer.
Conclusions
Pre-diagnosis symptom profiles varied by fibroids and obesity among endometrial cancer survivors. Low knowledge pertaining to postmenopausal bleeding as a potential symptom for endometrial cancer suggests opportunity for improved patient education.
Keywords: Endometrial cancer, Racial disparities, Symptoms, Postmenopausal bleeding
Highlights
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Black women had higher prevalence of uterine fibroids and obesity compared to White women.
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Pre-diagnosis symptoms varied by fibroids and obesity status.
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Few women knew that postmenopausal bleeding could be caused by endometrial cancer.
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Most women initiated the conversation about postmenopausal bleeding with providers.
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Non-menstrual symptoms were less often discussed than menstrual symptoms.
1. Introduction
Endometrial cancer (EC) comprises >90% of all uterine cancers. EC is the most common gynecologic cancer in the United States (U.S.), the fourth most common cancer in U.S. women overall, and the fifth leading cause of cancer death (Koskas et al., 2025, Siegel et al., 2025). Moreover, incidence of this disease has steadily increased, from 24.4 per 100,000 in 1999 to 28.8 per 100,000 in 2022 (National Cancer Institute, 2025). While mortality rates have decreased for many common cancers, the mortality rate for EC has also increased, from 4.1 per 100,000 in 1999 to 5.6 per 100,000 in 2023 (National Cancer Institute, 2025; CDC, 2025). Of particular concern is the extreme racial disparity in uterine cancer survival, with Black EC survivors having approximately twice the mortality rate as White EC survivors (Hicks et al., 2024; Cote et al., 2015; Clarke et al., 2019).
Though it does not fully explain the Black-White disparities in EC outcomes, Black individuals experience more delays in EC diagnosis relative to White individuals (Doll et al., 2020; Xu et al., 2023). Successful treatment of EC largely relies on early diagnosis, as localized disease confers a 94.5% 5-year survival rate, compared to 67.2% for regional spread and 19.5% for distant spread (CDC, 2025). A major need in addressing the Black-White cancer survival disparity is identifying barriers to EC diagnosis after the onset of symptoms. There is no universal screening test for EC; therefore, symptom awareness is critical to improving outcomes for people at risk of EC. EC typically presents with postmenopausal bleeding or abnormal uterine bleeding in premenopausal patients (Koskas et al., 2025). Other symptoms include abdominopelvic pain or bloating, urinary and gastrointestinal symptoms, and fatigue (Crosbie et al., 2022). Symptom experience may vary according to the presence of uterine fibroids or comorbid obesity, conditions which are more common among Black patients (Katon et al., 2023; Byrd et al., 2018).
Previous research has demonstrated a lack of awareness regarding EC risk factors in both the general population and in patients currently undergoing treatment for EC (Sekhon et al., 2019; Connor et al., 2017; Soliman et al., 2008). Qualitative studies have identified themes of limited knowledge pertaining to EC as barriers to care in a population of EC survivors with obesity and contributors to care delay experienced by Black women with EC. Black patients may have a lower rate of guideline concordant diagnostic procedures for postmenopausal bleeding compared to White patients, contributing to differences in stage at diagnosis (Doll et al., 2018).
The aim of this study, using data from a large North Carolina population cohort, was to describe the distribution of self-reported pre-diagnosis symptoms among EC survivors by race, fibroids status, and body mass index (BMI, kg/m2) and to assess knowledge of EC symptoms prior to diagnosis.
2. Methods
The Carolina Endometrial Cancer Study (CECS) is an ongoing prospective cohort study of newly diagnosed EC in North Carolina. Participants are identified using the Rapid Case Ascertainment program, a collaboration between the UNC Lineberger Comprehensive Cancer Center and the North Carolina statewide Central Cancer Registry. All identified Black participants are eligible for inclusion; White survivors are sampled to reflect the age- and geographic- distribution of Black women to ensure statistical power for Black-White comparisons. Survivors in other racial/ethnic groups are sampled proportionate to their distribution in North Carolina. The CECS collects comprehensive data from each participant including tumor blocks, germline DNA, medical record information, and survey data. On average, women completed the baseline survey 8.2 months after diagnosis. This study was a preliminary analysis of the first 638 CECS participants who completed informed consented and the baseline survey (enrolled during 2021–2024) and was approved by the University of North Carolina Institutional Review Board.
We used a coded dataset of self-reported participant demographics and comorbidities, collected during the baseline survey, and stage and histology information abstracted from the medical record. Demographics collected included age, gender identity, race, ethnicity, insurance status, education and income level, and menopausal status. Participants were identified as White if they self-reported White race as the only racial group out of the following options: American Indian or Alaskan Native, Asian, Black, or Native Hawaiian or Other Pacific Islander. Participants were classified as Black or African American if they selected Black/African American, regardless of whether other racial categories were also indicated. Participants of other races were not included in analyses due to the small numbers in these groups and the key aim of assessing Black-White racial disparities in EC outcomes. For this analysis, we excluded records from participants who identified as Asian (n = 16), American Indian or Alaskan Native (n = 15), Native Hawaiian or Other Pacific Islander (n = 1), multi-racial (n = 7), or selected “other” (n = 14) and did not meet the definitions above. Participants who reported Hispanic ethnicity (n = 22, queried separately from race) were retained in analyses.
For insurance status, we defined “private” as covered by any private insurance, “Medicaid” as only covered by Medicaid, “Medicare” as only covered by Medicare, “Other” as covered by any other kinds of insurance or insurance combinations, and “None” as uninsured. We defined postmenopausal status at cancer diagnosis as reporting natural or surgical menopause prior to EC diagnosis. If information about menopausal status was unavailable, participants with an age ≥ 60 years old at EC diagnosis were classified as postmenopausal at diagnosis (n = 35). Participants self-reported uterine fibroids history and current height and weight on the enrollment survey; body mass index (BMI) was calculated as kg/m2.
We used information on self-reported experience of symptoms from the baseline survey. We included 13 patient-reported symptoms based on previous studies assessing symptoms prior to EC diagnosis (Doll et al., 2020; Pakish et al., 2016). The 6 menstrual symptoms were postmenopausal bleeding, irregular periods, intermenstrual bleeding, heavy periods, periods longer than 7 days, and bleeding after sex. The 7 non-menstrual symptoms were pelvic pain, pelvic or bladder pressure, abdominal bloating or feeling full quickly, change in urinary frequency or urgency, change in bowel habits, fatigue, and abnormal vaginal discharge. For all symptoms, participants were asked whether they ever experienced the symptom at any point before cancer diagnosis (yes/no). Those who reported ever experiencing a symptom were asked whether it occurred at least once in the six months before cancer diagnosis (yes/no), how long before diagnosis the problem started (<6 months, 6–12 months, >1 year), and whether they sought care from a doctor or healthcare provider for the symptom (yes/no).
For women who reported, “bleeding or spotting after menopause, including any bleeding or spotting that occurred after you were no longer having menstrual cycles,” we additionally queried, “When was the first time you discussed bleeding or spotting after menopause with a doctor or healthcare provider?” Response options included >1 year before diagnosis of endometrial cancer, 6 months-1 year before diagnosis, <6 months before diagnosis, and did not ever discuss bleeding after menopause with a healthcare provider. We also asked whether the participant started the conversation, or whether their doctor or other healthcare provider asked about it (participant/ doctor of other healthcare provider/ don't know); and whether, before discussion, if they knew endometrial cancer could cause that type of bleeding (yes/no).
Stage at diagnosis and tumor histology were classified from medical records. Tumor histologic subtype ICD-O-3 codes were used to categorize patients as endometrioid (8380, 8382, 8480, 8570) or non-endometrioid (8010, 8013, 8020, 8263, 8310, 8323, 8441, 8460, 8480, 8950, 8980). At the time of this analysis, abstracted medical records were available for 75.4% of the study population (N = 481).
2.1. Statistical analysis
We compared demographic characteristics between Black or African American participants and White participants using ANOVA for continuous variables and Chi-square test for categorical values. Two-sided p-values <0.05 were considered the threshold for statistical significance. For outcome-exposure contingency tables that did not meet the minimum observation counts for Chi-Square test, we used Fisher's Exact test instead.
We described the distribution of 6 menstrual and 7 non-menstrual self-reported, pre-diagnosis symptoms among Black and White participants and assessed variation by race, fibroids status, and BMI. We calculated age-adjusted prevalence ratios (PR) and 95% confidence intervals (CI) for each symptom individually, and for any menstrual or any non-menstrual symptom, using Poisson regression models with robust error variance (Zou, 2004). We further conducted analyses according to endometrioid vs. non-endometrioid histology, as the rates of more aggressive, non-endometrioid cancers are higher in Black participants.
To protect patient confidentiality, table counts <11 were suppressed and percentages from counts <16 were not reported in accordance with the North Carolina Central Cancer Registry. All statistical analyses were performed with SAS Studio version 3.81 (SAS Institute, Cary, NC).
3. Results
Overall, 232 (36.4%) participants self-identified as Black or African American and 406 (63.6%) as White. Table 1 shows the distribution of demographics and comorbidities at study enrollment for the cohort overall and according to race. The mean age at EC diagnosis was 61 years. Most participants fell into an obese BMI category (≥30.0 kg/m2, n = 427, 66.9%). Relative to White participants, Black participants were less likely to have private insurance, had lower household income, and higher prevalence of obesity (72.9% of Black participants, 63.6% of White participants) and uterine fibroids (43.5% Black, 21.9% White). Black participants were also more likely to have non-endometrioid tumor histology (36.6% Black, 14.2% White) and later stage (FIGO III-IV, 22.0% Black, 13.9% White) diagnoses (Table 1).
Table 1.
Distribution of demographic, medical, and tumor characteristics among Carolina Endometrial Cancer Study participants, overall and according to self-identified race.
| Total Participants (N = 638) | Black Participants (N = 232) | White Participants (N = 406) | p-value | ||
|---|---|---|---|---|---|
| N (%) | N (%) | N (%) | |||
| Age at Diagnosis, Mean (SD) | 61.1 (10.0) | 61.8 (9.2) | 60.6 (10.5) | 0.2 | |
| Insurance Status | 0.002 | ||||
| Any private insurance | 395 (61.9) | 123 (52.0) | 272 (67.0) | ||
| Medicaid only | 44 (6.9) | 25 (10.8) | 19 (4.7) | ||
| Medicare only | 118 (18.5) | 49 (21.1) | 69 (17.0) | ||
| Other | 39 (6.1) | 18 (7.8) | 21 (5.2) | ||
| None | 38 (6.0) | 17 (7.3) | 21 (5.2) | ||
| Education | 0.002 | ||||
| Less than high school graduate | 30 (4.7) | 14 | 16 (3.9) | ||
| High school graduate | 113 (17.7) | 49 (21.1) | 64 (15.8) | ||
| Some college | 223 (35.0) | 92 (39.7) | 131 (32.3) | ||
| College graduate | 166 (26.0) | 48 (20.7) | 118 (29.1) | ||
| Post-graduate degree | 104 (16.3) | 28 (12.1) | 76 (18.7) | ||
| Household Income | <0.0001 | ||||
| Less than $20,000 | 110 (17.2) | 68 (29.3) | 42 (10.3) | ||
| 20,001 to $50,000 | 202 (31.7) | 80 (34.5) | 122 (30.1) | ||
| 50,001 to $100,000 | 157 (24.6) | 44 (19.0) | 113 (27.8) | ||
| ≥ 100,001 | 114 (17.9) | 13 (5.6) | 101 (24.9) | ||
| Urban-Rural Classification | 0.02 | ||||
| Metropolitan | 481 (75.4) | 190 (81.9) | 291 (71.7) | ||
| Micropolitan | 89 (14.0) | 22 (9.5) | 67 (16.5) | ||
| Small Town or Rural | 65 (10.2) | 20 (8.6) | 45 (11.1) | ||
| Body Mass Index (kg/m2) | 0.06 | ||||
| Under/normal weight (<24.9) | 101 (15.8) | 24 (10.3) | 77 (19.0) | ||
| Overweight (25–29.9) | 110 (17.2) | 39 (16.8) | 71 (17.5) | ||
| Class I obesity (30–34.9) | 118 (18.5) | 46 (19.4) | 73 (18.0) | ||
| Class II obesity (35–39.9) | 127 (19.9) | 51 (22.0) | 76 (18.7) | ||
| Class III obesity (≥40) | 182 (28.5) | 73 (31.5) | 109 (26.9) | ||
| Menopausal Status | 0.8 | ||||
| Premenopausal | 117 (18.3) | 43 (18.5) | 74 (18.2) | ||
| Postmenopausal | 502 (78.7) | 177 (76.3) | 325 (80.0) | ||
| Uterine Fibroids | <0.0001 | ||||
| Yes | 190 (29.8) | 101 (43.5) | 89 (21.9) | ||
| No | 435 (68.2) | 122 (52.6) | 313 (77.1) | ||
| FIGO Stage⁎ | 0.04 | ||||
| I–II | 398 (82.7) | 128 (78.1) | 270 (85.2) | ||
| III–IV | 80 (16.6) | 36 (22.0) | 44 (13.9) | ||
| Tumor Histology⁎ | <0.0001 | ||||
| Endometrioid | 376 (78.2) | 104 (63.4) | 272 (85.8) | ||
| Non-endometrioid | 105 (21.8) | 60 (36.6) | 45 (14.2) | ||
Abbreviation: SD, standard deviation.
Cell sizes <11 suppressed and percentages for counts <16 not included in accordance with NC Cancer Registry patient confidentiality requirements.
Counts and percentages based on 481 participants (317 White, 164 Black) with completed medical record abstraction.
Table 2 presents reported symptoms experienced prior to diagnosis by race. Overall, both pre-diagnosis menstrual (87.1% Black, 91.9% White) and non-menstrual (71.1% Black, 76.8% White) symptoms were widely reported. Postmenopausal bleeding (58.8% Black, 71.1% White) and heavy (58.6% Black, 57.4% White) or irregular (43.5% Black, 50.0% White) periods were the most commonly reported menstrual symptoms. The most common non-menstrual symptom was fatigue (39.7% Black, 46.6% White). Compared to White women, Black women had lower frequency of post-menopausal bleeding (58.8% vs 71.1%) and higher frequency of “periods lasting longer than 7 days” (34.9% vs 28.8%). After adjustment for age, uterine fibroids, and BMI, Black women were less likely to experience any non-menstrual symptoms (PR = 0.88, 95% CI 0.79–0.97) compared to White women. However, individual symptoms did not vary independently by race when fully adjusted. In models that adjusted for age alone, only “periods longer than 7 days” was statistically more common among Black women (versus White, PR = 1.34, 95% CI 1.08–1.67); however, this association was attenuated and no longer statistically significant after adjustment for fibroids and BMI. Of those who experienced symptoms, most participants reported these symptoms to a healthcare provider prior to diagnosis. The symptoms that were least likely to be reported to a provider were heavy periods, abdominal bloating or early satiety, urinary frequency, and fatigue (Table 2).
Table 2.
Age-adjusted prevalence ratios (PR) and 95% confidence intervals (CI) for the association between race and reporting ever experiencing each of six menstrual or seven non-menstrual pre-diagnosis symptoms.
|
Black participants (N = 232) |
White participants (N = 406) |
Age-adjusted PR for symptom experience (95% CI)⁎⁎ |
Age, BMI, and fibroids history-adjusted PR for symptom experience (95% CI)⁎⁎ | |||||
|---|---|---|---|---|---|---|---|---|
| N | % | % who sought care from a provider⁎ | N | % | % who sought care from a provider⁎ | |||
| Any menstrual symptom | 202 | 87.1 | 83.2 | 373 | 91.9 | 86.6 | 0.95 (0.90, 1.01) | 0.94 (0.89, 1.00) |
| Post-menopausal bleeding⁎⁎⁎ | 104 | 58.8 | 86.5 | 231 | 71.1 | 91.3 | 0.96 (0.84, 1.09) | 0.93 (0.81, 1.07) |
| Irregular periods | 101 | 43.5 | 69.3 | 203 | 50.0 | 67.5 | 0.93 (0.79, 1.09) | 0.89 (0.75, 1.06) |
| Intermenstrual bleeding | 64 | 27.6 | 68.8 | 120 | 29.6 | 79.2 | 1.04 (0.82, 1.33) | 1.02 (0.78, 1.32) |
| Heavy periods | 136 | 58.6 | 63.2 | 233 | 57.4 | 56.7 | 1.10 (0.97, 1.25) | 1.02 (0.89, 1.17) |
| Periods longer than 7 days | 81 | 34.9 | 71.6 | 117 | 28.8 | 65.8 | 1.34 (1.08, 1.67) | 1.21 (0.96, 1.52) |
| Bleeding after sex | 49 | 21.1 | 67.4 | 81 | 20.0 | 59.3 | 1.15 (0.84, 1.56) | 1.14 (0.82, 1.58) |
| Any non-menstrual symptom | 165 | 71.1 | 73.3 | 312 | 76.8 | 72.8 | 0.93 (0.85, 1.03) | 0.88 (0.79, 0.97) |
| Pelvic pain | 67 | 28.9 | 73.1 | 123 | 30.3 | 67.5 | 1.00 (0.78, 1.27) | 0.94 (0.73, 1.22) |
| Pelvic pressure | 60 | 25.9 | 65 | 118 | 29.1 | 66.1 | 0.92 (0.71, 1.20) | 0.85 (0.64, 1.12) |
| Abdominal bloating or early satiety | 72 | 31.0 | 50 | 114 | 28.1 | 57 | 1.14 (0.89, 1.46) | 1.09 (0.84, 1.41) |
| Urinary frequency | 69 | 29.7 | 56.5 | 128 | 31.5 | 57 | 0.96 (0.75, 1.22) | 0.91 (0.71, 1.17) |
| Bowel change | 43 | 18.5 | 69.8 | 62 | 15.3 | 53.2 | 1.24 (0.88, 1.78) | 1.16 (0.80, 1.70) |
| Fatigue | 92 | 39.7 | 58.7 | 189 | 46.6 | 45 | 0.90 (0.75, 1.08) | 0.83 (0.69, 1.01) |
| Abnormal vaginal discharge | 72 | 31.0 | 72.2 | 140 | 34.5 | 77.1 | 0.92 (0.73, 1.16) | 0.84 (0.66, 1.07) |
Cell sizes <11 suppressed and percentages for counts <16 not included in accordance with NC Cancer Registry patient confidentiality requirements.
Percent of those who reported symptom.
Adjusted PR from Poisson models for the association between race with White participants as the referent group in relation to each symptom.
Restricted to N = 502 postmenopausal participants (Black = 177, White = 325).
We analyzed pre-diagnosis symptoms experienced between participants with and without uterine fibroids (Table 3) and with and without obesity (Table 4). Participants with uterine fibroids were more likely to experience heavy periods (PR 1.23, 95% CI 1.09–1.40) and periods longer than 7 days (PR 1.37, 95% CI 1.09–1.71). They were also more likely to experience any non-menstrual symptoms (PR 1.15, 95% CI 1.05–1.25), pelvic pressure (PR 1.38, 95% CI 1.07–1.77), abdominal bloating or early satiety (PR 1.34, 95% CI 1.05–1.71) and abnormal vaginal discharge (PR 1.36, 95% CI 1.09–1.70) than those without uterine fibroids.
Table 3.
Symptoms experienced prior to diagnosis by uterine fibroids status with age-adjusted prevalence ratio for symptoms experience.
|
Had uterine fibroids (N = 190) |
Did not have uterine fibroids (N = 435) |
Age-adjusted PR for symptom experience (95% CI)⁎ |
|||
|---|---|---|---|---|---|
| N | % | N | % | ||
| Any menstrual symptom | 173 | 91.1 | 392 | 90.1 | 1.01 (0.96, 1.07) |
| Post-menopausal bleeding⁎⁎ | 104 | 72.2 | 228 | 65.9 | 1.04 (0.98, 1.10) |
| Irregular periods | 97 | 51.1 | 202 | 46.4 | 1.08 (0.93, 1.28) |
| Intermenstrual bleeding | 57 | 30.0 | 123 | 28.3 | 1.06 (0.83,1.35) |
| Heavy periods | 127 | 66.8 | 234 | 53.8 | 1.23 (1.09, 1.40) |
| Periods longer than 7 days | 72 | 37.9 | 121 | 27.8 | 1.37 (1.09, 1.71) |
| Bleeding after sex | 42 | 22.1 | 86 | 19.8 | 1.15 (0.84, 1.58) |
| Any non-menstrual symptom | 156 | 82.1 | 311 | 71.5 | 1.15 (1.05, 1.25) |
| Pelvic pain | 63 | 33.2 | 122 | 28.0 | 1.18 (0.92, 1.51) |
| Pelvic pressure | 66 | 34.7 | 109 | 25.1 | 1.38 (1.07, 1.77) |
| Abdominal bloating or early satiety | 67 | 35.3 | 115 | 26.4 | 1.34 (1.05, 1.71) |
| Urinary frequency | 63 | 33.2 | 130 | 29.9 | 1.13 (0.88, 1.45) |
| Bowel change | 35 | 18.4 | 66 | 15.2 | 1.22 (0.85, 1.77) |
| Fatigue | 86 | 45.3 | 187 | 43.0 | 1.05 (0.88, 1.26) |
| Abnormal vaginal discharge | 77 | 40.5 | 131 | 30.1 | 1.36 (1.09, 1.70) |
Cell sizes <11 suppressed and percentages for counts <16 not included in accordance with NC Cancer Registry patient confidentiality requirements.
Age adjusted PR from Poisson models for the association between fibroids status (participants without fibroids are the referent group) in relation to each symptom.
Restricted to N = 502 postmenopausal women (Participants with fibroids = 144, Participants without fibroids = 346, Participant with missing fibroids status = 12).
Table 4.
Age-adjusted prevalence ratios (PR) and 95% confidence intervals (CI) for the association between obesity status* and reported pre-diagnosis symptoms experienced.
|
Participants with obesity (N = 427) |
Participants without obesity (N = 211) |
Age-adjusted PR for symptom experience (95% CI)⁎⁎ |
|||
|---|---|---|---|---|---|
| N | % | N | % | ||
| Any menstrual symptom | 397 | 93.0 | 178 | 84.4 | 1.07 (1.01, 1.14) |
| Post-menopausal bleeding⁎⁎⁎ | 221 | 68.8 | 114 | 63.0 | 1.09 (1.02, 1.17) |
| Irregular periods | 226 | 52.9 | 78 | 37.0 | 1.18 (0.97, 1.43) |
| Intermenstrual bleeding | 137 | 32.1 | 47 | 22.3 | 1.07 (0.81, 1.43) |
| Heavy periods | 264 | 61.8 | 105 | 49.8 | 1.09 (0.93, 1.26) |
| Periods longer than 7 days | 153 | 35.8 | 45 | 21.3 | 1.27 (0.96, 1.70) |
| Bleeding after sex | 96 | 22.5 | 34 | 16.1 | 1.11 (0.77, 1.60) |
| Any non-menstrual symptom | 334 | 78.2 | 143 | 67.8 | 1.12 (1.01, 1.24) |
| Pelvic pain | 144 | 33.7 | 46 | 21.8 | 1.30 (0.97, 1.74) |
| Pelvic pressure | 127 | 29.7 | 51 | 24.2 | 1.10 (0.83, 1.47) |
| Abdominal bloating or early satiety | 130 | 30.4 | 56 | 26.5 | 1.03 (0.79, 1.36) |
| Urinary frequency | 141 | 33.0 | 56 | 26.5 | 1.20 (0.92, 1.57) |
| Bowel change | 70 | 16.4 | 35 | 16.6 | 0.89 (0.60, 1.31) |
| Fatigue | 214 | 50.1 | 67 | 31.8 | 1.40 (1.12, 1.74) |
| Abnormal vaginal discharge | 141 | 33.0 | 71 | 33.6 | 0.95 (0.74, 1.20) |
Cell sizes <11 suppressed and percentages for counts <16 not included in accordance with NC Cancer Registry patient confidentiality requirements.
Obesity defined as ≥30 kg/m2.
Age adjusted PR from Poisson models for the association between obesity status (participants without obesity are the referent group) in relation to each symptom.
Restricted to N = 502 postmenopausal women (Participants with obesity = 321, Participants without obesity = 181).
Participants with obesity were more likely to experience any menstrual symptoms (PR 1.07, 95% CI 1.01–1.14), postmenopausal bleeding (PR 1.09, 95% CI 1.02–1.17), any non-menstrual symptom (PR 1.12, 95% CI 1.01–1.24), and fatigue (PR 1.40, 95% CI 1.12–1.74) compared to those without obesity (Table 4). Participants with endometrioid histology were more likely to have periods longer than 7 days (PR 1.62, 95% CI 1.05–2.49), urinary frequency (PR 1.67, 95% CI 1.11–2.49), and fatigue (PR 1.42, 95% CI 1.04–1.95) than participants with non-endometrioid histology (Table 5).
Table 5.
Age-adjusted prevalence ratios (PR) and 95% confidence intervals (CI) for the association between tumor histology and reported pre-diagnosis symptoms experienced.
|
Endometrioid histology (N = 376) |
Non-endometrioid histology (N = 105) |
Age-adjusted PR for symptom experience (95% CI)⁎ |
|||
|---|---|---|---|---|---|
| N | % | N | % | ||
| Any menstrual symptom | 337 | 89.6 | 94 | 89.5 | 0.96 (0.89, 1.05) |
| Post-menopausal bleeding⁎⁎ | 197 | 69.4 | 57 | 59.4 | 1.04 (0.87, 1.24) |
| Irregular periods | 192 | 51.1 | 34 | 32.4 | 1.28 (0.96, 1.71) |
| Intermenstrual bleeding | 117 | 31.1 | 22 | 21.0 | 1.08 (0.72, 1.60) |
| Heavy periods | 231 | 61.4 | 49 | 46.7 | 1.13 (0.91, 1.40) |
| Periods longer than 7 days | 136 | 36.2 | 18 | 17.1 | 1.62 (1.05, 2.49) |
| Bleeding after sex | 81 | 21.5 | 10 | NR | 1.72 (0.92, 3.22) |
| Any non-menstrual symptom | 282 | 75.0 | 70 | 66.7 | 1.08 (0.93, 1.25) |
| Pelvic pain | 118 | 31.4 | 24 | 22.9 | 1.13 (0.77, 1.65) |
| Pelvic pressure | 111 | 29.5 | 21 | 20.0 | 1.31 (0.86, 2.00) |
| Abdominal bloating or early satiety | 107 | 28.5 | 28 | 26.7 | 0.93 (0.65, 1.33) |
| Urinary frequency | 131 | 34.8 | 22 | 21.0 | 1.67 (1.11, 2.49) |
| Bowel change | 63 | 16.8 | 13 | NR | 1.26 (0.71, 2.24) |
| Fatigue | 176 | 46.8 | 31 | 29.5 | 1.42 (1.04, 1.95) |
| Abnormal vaginal discharge | 122 | 32.4 | 32 | 30.5 | 1.06 (0.76, 1.47) |
NR = Not reported due to cell sizes <11 (for N's) or counts <16 (for %’s), which are suppressed in accordance with NC Cancer Registry patient confidentiality requirements.
Age adjusted PR from Poisson models for the association between obesity status (participants without obesity are the referent group) in relation to each symptom.
Restricted to N = 502 postmenopausal women (Participants with endometrioid histology = 284, Participants non-endometrioid histology = 96, participants with missing histology type = 122).
As postmenopausal bleeding is the most commonly reported symptom of endometrial cancer, we queried additional aspects of symptom recognition and healthcare seeking for postmenopausal bleeding. Overall, 67% (335 of 504 women classified as postmenopausal) of survivors reported experiencing, “bleeding or spotting after menopause, including any bleeding or spotting that occurred after you were no longer having menstrual cycles,” at any point prior to their diagnosis. Of the 335 women who experienced bleeding, 90% (N = 302) reported ≥1 bleeding episode within 6 months of diagnosis and 90% (N = 302) sought care from a healthcare provider (Table 6). Approximately half of participants (54%) first discussed bleeding with a healthcare provider <6 months before diagnosis, 15% first discussed it 6–12 months before diagnosis, and 25% first discussed it a year or more before diagnosis. Overall, 6% of women who experienced postmenopausal bleeding reported never having a discussion with their healthcare provider about their bleeding symptoms. Of the 312 women who did discuss postmenopausal bleeding with a healthcare provider, the majority (94%) initiated the conversation themselves and approximately a quarter (23%) reported knowing that EC can cause postmenopausal bleeding (Table 6).
Table 6.
Pre-diagnosis discussion of postmenopausal bleeding symptoms with healthcare providers.
|
Total |
Postmenopausal bleeding first experienced: |
|||||||
|---|---|---|---|---|---|---|---|---|
| <6 months before diagnosis |
6–12 months before diagnosis |
>1 year before diagnosis |
||||||
| N* | %** | N | % | N | % | N | % | |
| Total N classified as postmenopausal: | ||||||||
| 502 | 100% | |||||||
| Reported at any time before endometrial cancer diagnosis:* | ||||||||
| Yes | 335 | 67% | ||||||
| No | 134 | 27% | ||||||
| Does not apply | 22 | 4% | ||||||
| Reported ≥ 1 postmenopausal bleeding episode within 6 months of diagnosis:* | ||||||||
| Yes | 303 | 60% | ||||||
| No | 23 | 5% | ||||||
| Total N reported postmenopausal bleeding: | ||||||||
| 335 | 100% | 169 | 100% | 78 | 100% | 80 | 100% | |
| Sought care for postmenopausal bleeding:** | ||||||||
| Yes | 302 | 90% | 162 | 48% | 71 | 21% | 69 | 86% |
| No | 25 | 7% | ||||||
| First discussed with a health care provider:** | ||||||||
| <6 months before diagnosis | 180 | 54% | 141 | 83% | 21 | 27% | 15 | NR |
| 6–12 months before diagnosis | 49 | 15% | NR | NR | 35 | 45% | NR | NR |
| >1 year before diagnosis | 83 | 25% | 14 | NR | 14 | NR | 53 | 66% |
| Never discussed | 20 | 6% | NR | NR | NR | NR | NR | NR |
| Total N discussed postmenopausal bleeding with a healthcare provider: | ||||||||
| 312 | 100% | 161 | 100% | 70 | 100% | 75 | 100% | |
| Who initiated the conversation:*** | ||||||||
| Patient brought it up | 293 | 94% | 152 | 94% | 65 | 93% | 71 | 95% |
| Healthcare provider brought it up | NR | NR | NR | NR | NR | NR | NR | NR |
| Don't know | NR | NR | NR | NR | NR | NR | NR | NR |
| Missing | 29 | 9% | NR | NR | NR | NR | NR | NR |
| Knew endometrial cancer could be a cause of postmenopausal bleeding:*** | ||||||||
| Yes | 73 | 23% | 38 | 24% | 14 | NR | 18 | 24% |
| No | 231 | 74% | 121 | 75% | 52 | 74% | 55 | 73% |
NR = Not reported due to cell sizes <11 (for N's) or counts <16 (for %s), which are suppressed in accordance with NC Central Cancer Registry patient confidentiality requirements. Column totals that do not sum to 100% are due to missing data (not shown due to cell sizes <11).
Percent of those classified as postmenopausal.
Percent of those who reported postmenopausal bleeding.
Percent of those who discussed postmenopausal bleeding with a healthcare provider.
4. Discussion
In our analyses, uterine fibroids history, non-endometrioid histology, and higher BMI were more prevalent among Black survivors compared to White, and all conditions were associated with self-reported pre-diagnosis symptom profiles. We hypothesized that the higher prevalence of fibroids and obesity among Black women could affect the overall distribution of pre-diagnosis symptoms experienced between Black and White participants, potentially contributing to differences in patient and provider symptom recognition and discussion. However, in our data, the distribution of self-reported menstrual and non-menstrual symptoms experienced before endometrial cancer diagnosis was largely similar by race, even before accounting for fibroids history and BMI. The largest crude difference in symptom experience (12% difference, 59% among Black women, 71% among White women) was for postmenopausal bleeding; however, this difference was not statistically significant in age-adjusted models. The higher proportion of Black women reporting periods longer than 7 days (6% difference, 35% among Black women, 29% among White women) was statistically significant in age-adjusted models but was attenuated and no longer statistically significant after taking fibroids and BMI into account. Despite a low prevalence of knowledge that postmenopausal bleeding can be a symptom of EC, most EC survivors initiated discussions about their symptoms with their providers; very few indicated providers had prompted the discussion.
The distribution of pre-diagnosis menstrual symptoms reported by survivors in the Carolina Endometrial Cancer Study (CECS) was highly similar (within 10 percentage points difference) to that reported by cases (N = 75) in a 2016 case-control study in Houston, TX. Non-menstrual symptoms were more common among the cases in Houston (37–64% of survivors compared to 14–34% in CECS) (Pakish et al., 2016). CECS additionally provides quantitative data that complements a recent qualitative study that showed Black (n = 11) and White (n = 11) participants recognized their pre-diagnosis symptoms but had an overall lack of awareness that uterine cancer could cause the symptoms (Britton et al., 2024). These findings also align with a 1996 report of 99 Black and 232 White uterine cancer survivors in Atlanta, New Orleans, and San Franciso/ Oakland that reported similar consultation rates after symptom recognition by race (RR = 0.86, 95% CI 0.65–1.06) (Coates et al., 1996). While patients report discussing most symptoms with the healthcare team, further physician-patient education could address the lack of knowledge about potential symptoms due to EC.
Uterine fibroids can cause abnormal uterine bleeding or postmenopausal bleeding and may disguise bleeding due to EC. A prior study using the SEER-Medicare linked databases reported a lower prevalence of postmenopausal bleeding documentation among Black patients compared to White, despite a higher prevalence of uterine fibroids among Black patients (Doll et al., 2018). This pattern could reflect lower reporting among Black patients, or lower documentation by providers for patients with fibroids. In our analysis, women with fibroids were more likely to report non-menstrual symptoms including pelvic pressure, abdominal bloating or early satiety, and abnormal vaginal discharge than those without. They were also more likely to experience heavy periods and periods that lasted more than a week. However, reported experiences of postmenopausal bleeding specifically did not vary by uterine fibroid status and the prevalence of provider discussions about postmenopausal bleeding was not statistically different by race.
In our study, participants with BMIs in the obese range were more likely to report experiencing both postmenopausal bleeding and other menstrual and non-menstrual symptoms, particularly fatigue. These findings contrast with recent findings from 103 women attending a weight management clinic in Baltimore (without endometrial cancer) (Beavis et al., 2020). Obesity status (overweight vs. Class I, II, or III obesity) was not associated with a composite outcome of potential symptoms of endometrial hyperplasia/ cancer (irregular periods, abnormal cycle length, passing clots during menses, heavy menses, bleeding between periods, vaginal bleeding or discharge). However, our results are in agreement with the 2016 case-control study in Houston, TX where obese study participants had 73% higher odds of fatigue (95% CI 1.04–2.87), and were also more likely to report heavy periods, pelvic pain, and changes in urinary frequency and bowel habits (Pakish et al., 2016). To our knowledge, no prior studies have evaluated symptom variation according to histological subtype.
Our study is strengthened the collection of patient-reported endometrial cancer symptoms that included postmenopausal bleeding in addition to other menstrual and non-menstrual symptoms. By oversampling Black participants, we improved statistical power to detect differences between groups. In the prior report that informed the generation of symptom lists, only 8 Black women were included among 75 women with endometrial cancer (Pakish et al., 2016). However, the use of self-reported data on symptom measures and provider discussions inherently introduces potential for errors in recall or reporting. We cannot exclude the possibility that symptom appraisal and patient interpretation of questions that referenced terms such as “postmenopausal” or “periods longer than 7 days” may differ between patients according to race. Differences in personal interpretation and classification of bleeding may lead to inaccuracies in self-reporting and limit our ability to assess true variation in symptom profiles. Lastly, Our North Carolina-based study population may not reflect the experiences of endometrial cancer patients in other settings. However, the percentage of participants who reported each symptom replicate findings from an earlier Texas-based study (Pakish et al., 2016), providing some evidence of generalizability. Due to small numbers, our analyses did not evaluate experiences of women in other racial or ethnic groups.
Despite symptom associations with fibroids, obesity, and tumor histology (factors that are distributed differentially by race); our study did not observe evidence of reported pre-diagnosis symptom profiles varying independently by race overall. The American Cancer Society (ACS) recommends that “women should be informed about risks and symptoms of endometrial cancer and strongly encouraged to report any unexpected bleeding or spotting to their physicians.” (Smith et al., 2019) The low rates of knowledge that EC can cause postmenopausal bleeding and the fact that participants more often brought up postmenopausal bleeding with their providers (rather than vice versa) in our study may suggest the ACS recommendation for assessing symptoms and counseling are not widely incorporated into preventative care visits. This provides an area for targeted improvement in both provider and public education on awareness of and screening for EC symptoms.
CRediT authorship contribution statement
Meredith K. Wise: Writing – review & editing, Writing – original draft, Visualization, Methodology, Investigation, Conceptualization. Jama J. Brookes: Writing – review & editing, Software, Methodology, Formal analysis, Data curation. Tianhong Wu: Writing – review & editing, Software, Methodology, Formal analysis, Data curation. Marc Peterson: Writing – review & editing, Data curation. Victoria L. Bae-Jump: Writing – review & editing. Kemi M. Doll: Writing – review & editing, Supervision, Funding acquisition, Conceptualization. Andrew F. Olshan: Writing – review & editing, Supervision, Funding acquisition. Hazel B. Nichols: Writing – review & editing, Supervision, Methodology, Funding acquisition, Conceptualization.
Funding sources
The Carolina Endometrial Cancer Study (CECS) is funded by the University Cancer Research Fund of North Carolina and the National Institutes of Health (U01CA281026). CECS recruits participants with the assistance of Rapid Case Ascertainment (RCA), a collaboration between the North Carolina Central Cancer Registry and the University of North Carolina Lineberger Comprehensive Cancer Center supported by P30CA016086 and the University Cancer Research Fund of North Carolina. This project was also supported in part by funds from the University of Minnesota Department of Obstetrics, Gynecology and Women's Health (Wise).
Declaration of competing interest
The authors declare the following financial interests/personal relationships which may be considered as potential competing interests: Meredith Wise reports a relationship with TechSpert that includes: consulting or advisory. If there are other authors, they declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.
Acknowledgements
We are grateful to CECS participants and study staff. The findings and conclusions in this publication are those of the author(s) and do not necessarily represent the views of the North Carolina Department of Health and Human Services, Division of Public Health.
Footnotes
This paper was first presented as a poster: Wise, Meredith K., Wu, Tianhong, Bae-Jump, Victoria L., Olshan, Andrew F., Nichols, Hazel B. Pre-diagnosis symptoms reported among endometrial cancer survivors. Poster presented at: The 4th NCI Symposium on Cancer Health Disparities; April 2023; Bethesda, MD
Contributor Information
Kemi M. Doll, Email: kdoll@uw.edu.
Hazel B. Nichols, Email: hazel.nichols@unc.edu.
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