Quality of Life After Axillary Lymph Node Dissection Among Racial and Ethnic Minority Women.

Importance: Higher lymphedema rates after axillary lymph node dissection (ALND) have been found in Black and Hispanic women; however, there is poor correlation between subjective symptoms, quality of life (QOL), and measured lymphedema. Additionally, racial and ethnic differences in QOL have been understudied. Objective: To evaluate the association of race and ethnicity with long-term QOL in patients with breast cancer treated with ALND. Design, Setting, and Participants: This cohort study enrolled women aged 18 years and older with breast cancer who underwent unilateral ALND at a tertiary cancer center between November 2016 and March 2020. Preoperatively and at 6-month intervals, arm volume was measured by perometer and QOL was assessed using the Upper Limb Lymphedema-27 (ULL-27) questionnaire, a validated tool for assessing lymphedema that evaluates how arm symptoms affect physical, psychological, and social functioning. Data were analyzed from November 2016 to October 2023. Exposures: Breast surgery and unilateral ALND in the primary setting or after sentinel lymph node biopsy. Main Outcomes and Measures: Scores in each domain of the ULL-27 were compared by race and ethnicity. Factors impacting QOL were identified using multivariable regression analyses. Results: The study included 281 women (median [IQR] age, 48 [41-58] years) with breast cancer who underwent unilateral ALND and had at least 6 months of follow-up. Of these, 30 patients (11%) self-identified as Asian individuals, 57 (20%) as Black individuals, 23 (8%) as Hispanic individuals, and 162 (58%) as White individuals; 9 individuals (3%) who did not identify as part of a particular group or who were missing race and ethnicity data were categorized as having unknown race and ethnicity. Median (IQR) follow-up was 2.97 (1.96-3.67) years. The overall 2-year lymphedema rate was 20% and was higher among Black (31%) and Hispanic (27%) women compared with Asian (15%) and White (17%) women (P = .04). Subjective arm swelling was more common among Asian (57%), Black (70%), and Hispanic (87%) women than White (44%) women (P < .001), and lower physical QOL scores were reported by racial and ethnic minority women at nearly every follow-up. For example, at 24 months, median QOL scores were 87, 79, and 80 for Asian, Black, and Hispanic women compared with 92 for White women (P = .003). On multivariable analysis, Asian race (ß = -5.7; 95% CI, -9.5 to -1.8), Hispanic ethnicity (ß = -10.0; 95% CI, -15.0 to -5.2), and having Medicaid (ß = -5.4; 95% CI, -9.2 to -1.7) or Medicare insurance (ß = -6.9; 95% CI, -10.0 to -3.4) were independently associated with worse physical QOL (all P < .001). Conclusions and Relevance: Findings of this cohort study suggest that Asian, Black, and Hispanic women experience more subjective arm swelling after unilateral ALND for breast cancer compared with White women. Black and Hispanic women had higher rates of objective lymphedema than their White counterparts. Both minority status and public medical insurance were associated with worse physical QOL. Understanding disparities in QOL after ALND is an unmet need and may enable targeted interventions to improve QOL for these patients.

Underreporting and Underrepresentation of Racial and Ethnic Minority Patients in Lymphedema Clinical Trials: A Systematic Review.

The generalizability of findings from Clinical Trials (CTs) investigating lymphedema treatment modalities requires an accurate representation of the target population. This study aims to evaluate racial and ethnic reporting and representation in lymphedema CTs. A comprehensive systematic literature search was conducted during May 2023 using multiple databases, following the PRISMA guidelines. All CTs published from 2018 to 2023 were included. A total of 84 articles were included in this review, from which 6,546 participants were included in the analysis. Seventy-four (88.1%) articles addressed secondary lymphedema, of which 60 (81.1%) were related to breast cancer. Only 12 (13%) of CTs reported at some extend race or ethnicity. Of these, five (41.6%) reported race and two (16.6%) reported ethnicity according to FDA guidelines. White race had the highest pooled prevalence (80%; 95% CI 72-86%; I2=90%), followed by Black (7%; 95% CI 2- 15%; I2= 94.3%) and Asian (4%; 95% CI 1-8%; I2= 89.9%). In studies reporting ethnicity, participants were predominantly non-Hispanic (92.1%; 95% CI 90 - 94%). There is an underreporting and underrepresentation of racial and ethnic minorities among lymphedema CTs, limiting their generalizability. It is imperative to future development of strategies to enhance diversity in the study sample.

Health-related quality of life outcomes for the LEAP study-CALGB 70305 (Alliance): A lymphedema prevention intervention trial for newly diagnosed breast cancer patients.

BACKGROUND: Lymphedema is an adverse effect of breast cancer treatment that causes swelling and pain in the arm and hand. We tested 2 lymphedema prevention interventions and their impact on health-related quality of life (HRQOL) in a group-randomized trial at 38 cooperative group sites within the United States. METHODS: Patients were recruited before breast surgery. Sites were randomly assigned to education-only (EO) lymphedema prevention or education plus exercise and physical therapy (LEAP). Lymphedema was defined as a ≥10% difference in arm volume at any time from baseline to 18 months postsurgery. HRQOL was assessed using the Functional Assessment of Cancer Therapy-Breast plus 4 lymphedema items (FACT-B+4). Longitudinal mixed model regression analysis, adjusting for key demographic and clinical variables, examined participants' HRQOL by intervention group and lymphedema status. RESULTS: A total of 547 patients (56% LEAP) were enrolled and completed HRQOL assessments. The results revealed no differences between the interventions in preventing lymphedema (P = .37) or HRQOL (FACT-B+4 total score; P = .8777). At 18 months, the presence of lymphedema was associated with HRQOL at borderline significance (P = .0825). However, African American patients reported greater lymphedema symptoms (P = .0002) and better emotional functioning (P = .0335) than patients of other races or ethnicities. Lower HRQOL during the intervention was associated with younger age (P ≤ .0001), Eastern Cooperative Oncology Group performance status >0 (P = .0002), ≥1 positive lymph nodes (P = .0009), having no education beyond high school (P < .0001), having undergone chemotherapy (P = .0242), and having had only axillary node dissection or sentinel node biopsy versus both (P = .0007). CONCLUSION: The tested interventions did not differ in preventing lymphedema or in HRQOL outcomes. African American women reported greater HRQOL impacts due to lymphedema symptoms than women of other races or ethnicities.

Lymphedema Signs, Symptoms, and Diagnosis in Women Who Are in Minority and Low-Income Groups and Have Survived Breast Cancer.

BACKGROUND: Breast cancer-related lymphedema (BCRL) is a well-known side effect of cancer and its treatment with wide-ranging prevalence estimates. OBJECTIVE: This study describes associations between breast cancer-related lymphedema (BCRL) signs, symptoms, and diagnosis for women who were African American, white, or had a low income and survived breast cancer. DESIGN: This is a cross-sectional, observational study that used a computer-assisted telephone interview. METHODS: Women who had survived breast cancer were queried on the presence of 5 lymphedema signs and symptoms (edema in the breast, axilla, arm, and/or hand; tissue fibrosis; pitting; hemosiderin staining; heaviness) and whether they had a diagnosis of BCRL. Relationships between signs/symptoms and diagnosis for each group were evaluated with kappa and chi-square statistics. RESULTS: The study sample included 528 women who had survived breast cancer (266 white and 262 African American), with 514 reporting complete data on household income; 45% of the latter reported an annual household income of ≤$20,000. Women who were African American or had a low income were nearly twice as likely as women who were white to have any of 8 signs/symptoms of BCRL. Regardless of race and income, >50% of women with all BCRL signs and symptoms reported that they were not diagnosed with BCRL. LIMITATIONS: The main limitations of our study are the lack of medical chart data and longitudinal design. CONCLUSIONS: Women who were African American or had a low income and had survived breast cancer had a greater burden of BCRL signs and symptoms than women who were white. The lack of a strong association between BCRL signs, symptoms, and diagnosis suggests that BCRL may be underdiagnosed. These findings suggest that more rigorous screening and detection of BCRL-especially for women who are African American or have a low income-may be warranted. Cancer rehabilitation programs may be able to fill this gap.

A pilot study of lower extremity lymphedema, lower extremity function, and quality of life in women after minimally invasive endometrial cancer staging surgery.

OBJECTIVE: The primary aim of this study was to pilot the use of an objective measurement technique to prospectively evaluate the incidence of lower extremity lymphedema (LEL) after minimally invasive staging surgery for endometrial cancer. Secondary objectives included observation of changes in lower extremity function and quality of life in this patient population. METHODS: A prospective evaluation of LEL was performed in 97 women who underwent minimally invasive staging surgery for endometrial cancer using comparative circumferential volume measurements. Postoperative changes in lower extremity function and global quality of life were also assessed using patient-reported outcome measures. RESULTS: Ninety-seven patients were included for lymphedema analysis. The rate of LEL was 25% at 4-6 weeks, 19% at 6-9 months, and 27% at 12-18 months postoperatively. The presence of LEL was associated with a significant worsening from baseline Lower Extremity Functional Scale (LEFS) scores at 4-6 weeks (-27.0% vs -3.7%, p = 0.02) and 6-9 months (-13.0% vs 0%, p = 0.01). LEL was not associated with a change in patient-reported global quality of life. CONCLUSIONS: Up to one in four women experience lymphedema following surgical staging for endometrial cancer, and its presence is associated with diminished lower extremity function. Larger, prospective trials using the objective methodology piloted in this study should better clarify risk factors and long-term outcomes of this morbidity.

Race or Resource? BMI, Race, and Other Social Factors as Risk Factors for Interlimb Differences among Overweight Breast Cancer Survivors with Lymphedema.

Introduction. High BMI is a risk factor for upper body breast cancer-related lymphedema (BCRL) onset. Black cancer survivors are more likely to have high BMI than White cancer survivors. While observational analyses suggest up to 2.2 times increased risk of BCRL onset for Black breast cancer survivors, no studies have explored race or other social factors that may affect BCRL severity, operationalized by interlimb volume difference (ILD). Materials and Methods. ILD was measured by perometry for 296 overweight (25 > BMI < 50) Black (n = 102) or White (n = 194) breast cancer survivors (>6 months from treatment) in the WISER Survivor trial. Multivariable linear regression examined associations between social and physical factors and ILD. Results. Neither Black race (-0.26, p = 0.89) nor BMI (0.22, p = 0.10) was associated with ILD. Attending college (-4.89, p = 0.03) was the strongest factor associated with ILD, followed by having more lymph nodes removed (4.75, p = 0.01), >25% BCRL care adherence (4.10, p = 0.01), and years since treatment (0.55, p < 0.001). Discussion. Neither race nor BMI was associated with ILD among overweight cancer survivors. Education, a proxy for resource level, was the strongest factor associated with greater ILD. Tailoring physical activity and weight loss interventions designed to address BCRL severity by resource rather than race should be considered.

A NOVEL FLT4 GENE MUTATION AND MR LYMPHANGIOGRAPHY IN A CHINESE FAMILY WITH MILROY DISEASE.

Milroy disease is a congenital onset lymphedema linked to FLT4 gene mutations in the tyrosine kinase domain. So far, a total of 59 different FLT4 variants have been identified. Here, we report a novel FLT4 gene mutation in a Chinese family with Milroy disease and present their clinical symptoms and MR lymphangiographic findings.

Racial disparities in adoption of axillary sentinel lymph node biopsy and lymphedema risk in women with breast cancer.

IMPORTANCE: Racial disparities exist in many aspects of breast cancer care. Sentinel lymph node biopsy (SLNB) was developed to replace axillary lymph node dissection (ALND) for staging early breast cancer to minimize complications. Racial disparities in the use of SLNB remain incompletely characterized, and their effect on lymphedema risk is not known. OBJECTIVE: To determine racial differences in SLNB use among patients with pathologically node-negative breast cancer during the period when SLNB became the preferred method for axillary staging as well as whether such differences affect lymphedema risk. DESIGN, SETTING, AND PARTICIPANTS: A retrospective study was conducted using the Surveillance, Epidemiology, and End Results-Medicare-linked database from 2002 through 2007 to identify cases of incident, nonmetastatic, pathologically node-negative breast cancer in women aged 66 years or older. MAIN OUTCOMES AND MEASURES: Sentinel lymph node biopsy use and 5-year cumulative incidence of lymphedema by race. RESULTS: Of 31 274 women identified, 1767 (5.6%) were black, 27 856 (89.1%) were white, and 1651 (5.3%) were of other or unknown race. Sentinel lymph node biopsy was performed in 73.7% of white patients and 62.4% of black patients (P < .001). The use of SLNB increased by year for both black and white patients (P < .001); however, a fixed disparity of approximately 12 percentage points in SLNB use persisted through 2007. In adjusted analysis, black patients were significantly less likely than white patients to undergo SLNB (odds ratio, 0.67; 95% CI, 0.60-0.75; P < .001). Overall, the 5-year cumulative lymphedema risk was 8.2% in whites and 12.3% in blacks (hazard ratio [HR], 1.43; 95% CI, 1.23-1.67; P < .001). When stratified by type of axillary surgery, 5-year lymphedema risk was 6.8% in whites undergoing SLNB (HR, 1 [reference]), 8.8% in blacks undergoing SLNB (HR, 1.28; 95% CI, 1.02-1.60; P = .03), 12.2% in whites undergoing ALND (1.79; 1.63-1.96; P < .001), and 18.0% in blacks undergoing ALND (2.76; 2.25-3.39; P < .001). CONCLUSIONS AND RELEVANCE: Although SLNB use increased in both black and white patients with pathologically node-negative breast cancer from 2002 through 2007, the rates of SLNB remained lower in black than white patients during this entire period by approximately 12 percentage points. This racial disparity in SLNB use contributed to racial disparities in lymphedema risk. Improvements in the dissemination of new techniques are needed to avoid disparities in breast cancer care and patient outcomes, particularly in disadvantaged groups.

The clinical characteristic differences between thrombosis-related edema and lymphedema following radiotherapy or chemoradiotherapy for patients with cervical cancer.

Thrombosis-related edema and lymphedema are two principal types of lower extremity edema results from radiotherapy alone or chemoradiotherapy for patients with cervical cancer. To characterize differences between them, a retrospective study was performed. We collected data including age, race, body weight, FIGO stage, histology type, platelet count, haemoglobin, time of definitely diagnosis, therapeutic regimen, edema type and which leg edema firstly occurred in. Of 40 patients who were eligible for this study, 32 were diagnosed as thrombosis-related edema and 8 diagnosed as lymphedema. The differences in patient age (p = 0.004), propotion of race (p = 0.021), the latent time (p = 0.002) and the mean platelet count (p = 0.019) were statistically significant. Among 32 patients with thrombosis-related edema, 34.4% were in stage II and 53.1% in stage III, 78.1% were squamous cell carcinoma. Among 8 patients with lymphedema, 87.5% were in stage II and 62.5% were squamous cell carcinoma. The differences were not statistically significant for weight (p = 0.94), histology type (p = 0.648), edema site (p = 0.236), haemoglobin (p = 0.088) between the two grouping patients. Although the small patient cohort is a limitation, the results suggest that the patients with thrombosis-related edema may have higher proportion, lower age, shorter latent edema time and more platelet count than those with lymphedema. Also, thrombosis-related edema was likely inclined to Uigur and lymphedema to Han race. We did not find statistical differences in weight, edema site, histology type and haemoglobin between patients with thrombosis-related edema and lymphedema.

Nursing education on lymphedema self-management and self-monitoring in a South African oncology clinic.

Breast cancer is the leading cause of cancer in South African women. Without comprehensive national and provincial breast health programs, survivorship issues are in need of being addressed. Lymphedema secondary to breast cancer treatment (BCLE) is one of the most physically and psychologically devastating outcomes of treatment. Nurses at a South African oncology clinic educated survivors with BCLE in cost-effective self-management and self-monitoring techniques. The purpose of this paper is to describe these techniques and their relevance to diverse South African survivors. A case study analysis was performed. The need for cost-effective survivorship programs is discussed.

Risk factors for lymphedema in a prospective breast cancer survivorship study: the Pathways Study.

OBJECTIVE: To determine the incidence of breast cancer-related lymphedema (BCRL) during the early survivorship period as well as demographic, lifestyle, and clinical factors associated with BCRL development. DESIGN: The Pathways Study, a prospective cohort study of breast cancer survivors with a mean follow-up time of 20.9 months. SETTING: Kaiser Permanente Northern California medical care program. PARTICIPANTS: We studied 997 women diagnosed from January 9, 2006, through October 15, 2007, with primary invasive breast cancer and who were at least 21 years of age at diagnosis, had no history of any cancer, and spoke English, Spanish, Cantonese, or Mandarin. MAIN OUTCOME MEASURE: Clinical indication for BCRL as determined from outpatient or hospitalization diagnostic codes, outpatient procedural codes, and durable medical equipment orders. RESULTS: A clinical indication for BCRL was found in 133 women (13.3%), with a mean time to diagnosis of 8.3 months (range, 0.7-27.3 months). Being African American (hazard ratio, 1.93; 95% confidence interval, 1.00-3.72) or more educated (P for trend = .03) was associated with an increased risk of BCRL. Removal of at least 1 lymph node (hazard ratio, 1.04; 95% confidence interval, 1.02-1.07) was associated with an increased risk, yet no significant association was observed for type of lymph node surgery. Being obese at breast cancer diagnosis was suggestive of an elevated risk (hazard ratio, 1.43; 95% confidence interval, 0.88-2.31). CONCLUSIONS: In a large cohort study, BCRL occurs among a substantial proportion of early breast cancer survivors. Our findings agree with those of previous studies on the increased risk of BCRL with removal of lymph nodes and being obese, but they point to a differential risk according to race or ethnicity.

Risk factors for arm lymphedema following breast cancer diagnosis in Black women and White women.

Purpose Lymphedema of the arm is a potential complication of breast cancer therapy. This study examines pre-disposing factors that may operate in conjunction with treatment-related factors in the development of arm lymphedema in a large cohort of White and Black breast cancer survivors. Methods 494 women (271 White and 223 Black) with in situ to Stage III-A primary breast cancer completed a baseline interview within 18 months of diagnosis. Information on lymphedema was collected during a follow-up interview, conducted on average 50 months after diagnosis. Self-reported data were used to classify women with or without lymphedema. Multivariable logistic regression models were developed to identify risk factors for arm lymphedema. Results Arm lymphedema was associated with younger age at diagnosis (odds ratio, OR per year of age = 0.96; 95% confidence interval, CI = 0.93-0.99), positive history of hypertension (OR = 2.31; 95% CI = 1.38-3.88), obesity (OR for body mass index, BMI> or =30 = 2.48; 95% CI = 1.05-5.84) and having had surgery where 10 or more lymph nodes were excised (OR = 2.16; 95% CI = 1.12-4.17). While Black women had higher prevalence of arm lymphedema than White women (28% vs. 21%), race was not associated with lymphedema risk in models adjusted for multiple factors (adjusted OR = 1.01; 95% CI = 0.63-1.63). Conclusion Risk of arm lymphedema did not differ significantly for Black and White women. Risk factors identified in this study offer opportunities for interventions (weight loss, control of blood pressure, use of sentinel node biopsy where possible) for reducing incidence of lymphedema or controlling the symptoms associated with this condition.

Health care seeking behavior of Korean women with lymphedema.

The present biocultural study aimed to describe the health care use patterns of women with lymphedema. Data came from interviews and participant observations with eight key informants between February 2000 and February 2002. Analyzing the process of seeking health care, this paper explored how Korean women with lymphedema make use of all the available resources in the three sectors of the health care system: professional, folk and popular health. In these three sectors of the health care system, informants showed different patterns of behavior. In the professional health care sector, they behave based on scientific Western medicine and holistic herbal medical frameworks. Informants want scientific technological treatment from a Westernized doctor and perfect humanistic and holistic treatment from a herbal doctor. In the folk sector, informants' behavior is ruled by a pragmatic and supernatural framework. Informants seek religious healers who have strong spirituality and non-religious healers who have experience and skills. Informants complied with these healer's remedies based on efficacy and empirical healing evidence. In the popular sector of the health care system, informants behave based on their concept of illness and rules of daily life. They believe lymphedema comes from poor blood circulation and they want to be regarded as members of society, not as patients with lymphedema. Therefore, informants practised popular remedies that they believed were good for promoting blood circulation and keeping their social network active. This description about health care seeking behaviors being embedded in Korean socio-medical culture can serve to understand patients with other chronic health problems. With these results, we can put a bridge over the river of cultural conflict between health professionals and patients.