Breast Cancer Alliance

While primary invasive lobular carcinoma (ILC) is well characterized, metastatic ILC remains understudied. Within the post-mortem tissue donation programs, UPTIDER (Belgium) and Hope for Others (USA), we first aimed to explore intra-patient heterogeneity of key prognostic and predictive markers (stromal tumor-infiltrating lymphocytes (sTIL), estrogen receptor (ER), progesterone receptor (PR), human epidermal growth factor receptor 2 (HER2) and KI67). Secondly, we compared detection of the metastases by pathology on autopsy samples versus pre-mortem imaging. In total, 306 metastases from 12 patients were collected at autopsy (median: 27 per patient). Both primary tumors (n = 15) and metastases (n = 232) had low sTIL levels, with a median of 2% (range: 0.67-6.67%) and 0.67% (range: 0-13.33%), respectively. Regression models showed lower ER- and PR-expression in metastases (respectively, n = 265 and n = 64) compared to primary tumors (both p < 0.01). KI67 was significantly higher in metastases (n = 262, p = 0.02). HER2-low metastases were found in all but one patient although in varying proportion of metastases (range: 7.5-100%). Central radiology and pathology review had a median concordance of 78% at organ level (range: 33.33-100%) and 71% at patient level (range: 55.88-85.29%). Our findings suggest that a single metastatic biopsy has great limitations to guide treatment and that more adequate methods are needed to detect and monitor ILC metastases.

Introduction:Limited research has longitudinally assessed quality of life (QoL) among patients with metastatic breast cancer (MBC) outside of therapeutic clinical trials. This study used ecological momentary assessment (EMA) to examine QoL in daily life.Methods:Patients with MBC completed 12 EMA surveys over 4 weeks. Surveys utilized a visual analog scale (0–100) to assess global QoL, symptom severity (depression, anxiety, pain, fatigue, slowed cognitive functioning, appetite loss, nausea, gastrointestinal distress, decreased libido), and positive affect (social connection, peace, joy). Multilevel mixed-effects models analyzed the relationships between QoL and symptom severity and positive affect, when ratings differed across persons (between-person differences) and among the same person (within-person differences). We also explored longitudinal changes in QoL.Results:Participants (N=118; M=57.6 years old) were a mean of 4.3 years post-diagnosis. In mixed models adjusting for sociodemographic and health variables, between-subjects effects indicated QoL was worse among individuals who reported more depression (p=.009), more nausea (p=.005), and less joy (p<.001). Within-person effects indicated individuals’ QoL was lower when they reported worse depression (p<.001), anxiety (p=.012), and fatigue (p=.004), lower appetite (p=.019), lower libido (p=.018), and less social connectedness (p=.001), joy (p=.040), and peace (p<.001) than their average ratings. Mixed models estimated QoL was worse near diagnosis (p=.028), especially for patients who were older (p=.005) and non-partnered (p=.001).Conclusions:Both within-person and between-person variations in symptom severity and positive affect are associated with QoL. The relative influence of within-person variation suggests the need for adaptive, targeted intervention strategies to optimize patients’ quality of life.

Stroke is the second leading cause of death and third leading cause of disability globally. The dose-response relationship between physical activity (PA), particularly moderate-to-vigorous physical activity (MVPA), and stroke risk remains unclear, with limited sex-specific evidence. To examine the dose-response associations of total PA and MVPA with stroke risk, considering sex and subtype differences. A systematic review and dose-response meta-analysis of prospective cohort studies published between 2013 and 2024, with follow-up durations ranging from 4.9 to 17.9 years, were conducted. PA exposures were standardized to MET-hours per week (MET-h/wk), and incident stroke was the primary outcome. Study-specific hazard ratios (HRs) and 95% confidence intervals (CIs) were pooled using random-effects models. Dose-response associations were assessed using restricted cubic spline models. Analyses stratified by sex and subtype were performed when available. Fourteen cohorts (n = 2,639,086) were included. Total PA showed a nonlinear inverse association with stroke risk: each 10 MET-h/wk increment reduced risk by 1% up to 130 MET-h/wk, corresponding to a 13% maximum reduction, after which benefits plateaued. MVPA exhibited an L-shaped association (P < 0.001), with the greatest benefit (19% reduction) at 19 MET-h/wk, followed by a gradual increase in risk. Sex-stratified analysis revealed a J-shaped pattern in females (optimal 10-15 MET-h/wk; 18% reduction). For males, the HR was 0.89 (95% CI: 0.70-1.13), and a nonlinear model could not be established due to limited data. In ischemic stroke, dose-response patterns paralleled those for total stroke. The study found a significant dose-response relationship between total PA and MVPA with stroke risk. Optimal prevention was observed at 130 MET-h/wk for total PA and 19 MET-h/wk for MVPA. Evidence in males and for hemorrhagic stroke remains limited and warrants further study.

Breast cancer remains one of the most significant global health challenges, with approximately 2.3 million new cases diagnosed and 666,000 deaths every year. Advanced breast cancer (ABC) – encompassing locally advanced and metastatic disease – represents the leading cause of breast cancer-related mortality and morbidity worldwide. While early-stage breast cancer has seen remarkable improvements in survival rates in the past decade, outcomes for individuals with ABC remain sobering: only 32 % of women diagnosed with ABC survive five years post-diagnosis, and this figure drops to just 20 % for men.The ABC Global Alliance was established in 2016 as a multi-stakeholder platform dedicated to advanced/metastatic breast cancer. Its vision: to improve and extend the lives of women and men living with ABC in all countries worldwide and to fight for a cure.This special edition of The Breast is both a reflection on the past decade of progress across the ABC landscape, and a forward-looking roadmap for the future. It summarizes findings from the ABC Global Alliance's Global Decade Report 2.0 (2015–2025) and the newly defined ten goals set out in the 2025–2035 ABC Global Charter 2.0, signaling a renewed commitment to advancing ABC care globally over the next decade.

Modern advances in systemic and localized therapies for patients with renal cell carcinoma (RCC) have significantly improved patients’ outcomes. If disease progression occurs after initial treatment, clinicians often have multiple options for a first salvage therapy. Because salvage and initial treatments both may affect overall survival time, and they may interact in unanticipated ways, there is a growing need to determine sequences of initial therapy and first salvage therapy that maximize overall survival while maintaining quality of life. The complexity of this problem grows if a second salvage therapy must be chosen for patients with treatment-resistant disease or a second progression occurs following first salvage. On November 9, 2023, a think tank was convened during the International Kidney Cancer Symposium (IKCS) North America to discuss challenges in accounting for postprogression therapies when estimating overall survival (OS) time based on randomized controlled trial (RCT) data. The present manuscript summarizes the topics discussed, with the aim to encourage adoption of statistical methods that account for salvage therapy effects to obtain scientifically valid OS estimation. We highlight limitations of traditional methods for estimating OS that account for initial treatments while ignoring salvage therapy effects and discuss advantages of applying more sophisticated statistical methods for estimation and trial design. These include identifying multistage treatment strategies, correcting for confounding due to salvage therapy effects, and conducting Sequentially Multiple Assignment Randomized Trials (SMARTs) to obtain unbiased comparisons between multistage strategies. We emphasize the critical role of patient input in trial design, and the potential for information technology (IT) advances to support complex trial designs and real-time data analyses. By addressing these challenges, future RCTs can better inform clinical decision-making and improve patient outcomes in RCC.

362 Background: According to the National Cancer Institute Surveillance, Epidemiology, and End Results Program, an estimated 26,890 patients in the United States will be diagnosed with gastric (stomach) cancer in 2024. Estimated deaths from the disease in 2024 will reach 10,880, with a five-year relative survival rate of 36%. Understanding the need for increased gastric cancer education and awareness, the GI Cancers Alliance created a 12-month series of engagement opportunities to better understand and listen to the gastric cancer patient voice and perspectives. Methods: Our 12-month patient-reported outcomes (PRO) research (September 2023 – August 2024) included an online survey, in person and virtual focus groups, and personalized follow-up interviews. 651 gastric cancer patients and survivors participated in these engagement opportunities, with 89% of participants asking for follow-up personalized interviews. One of our program goals was to reach and interact with patients who often experience barriers in receiving quality cancer care. Our PRO research provided an opportunity to amplify the patient voice and lived experience by engaging patients in medically underserved communities, rural and urban populations, diverse ethnic communities, and patients receiving care in community-based and federally funded oncology centers, and charity (indigent) care. Results: Overarching results from our study suggest that while advances have been made, health equity, racial disparities and barriers in cancer care remain a challenge. 651 patient participants (43% male, 54% female, 3% non-binary) identified their race/ethnicity as: 24% Black/African American, 22% Hispanic, 21% Multiracial, Non-Hispanic/White 19%, Asian/Pacific Islander 7%, Native American 2%, and 5% Other. 69% of patients reported that their clinician did not suggest biomarker testing, nor discuss the role of biomarkers to help make informed treatment decisions. 68% of patients were concerned that they lacked knowledge and options to make informed decisions regarding their treatment. 64% of patients reported they suffered from mental health concerns ranging from severe depression, feelings of hopelessness and anxiety; 63% of patients struggled to afford nutritious food to meet their changing dietary needs, especially post-surgery. Conclusions: Our PRO research underscores the need for increased education and outreach for gastric cancer patient communities experiencing barriers to high quality cancer prevention, early detection, and treatment. By partnering with our 100+ advocacy partner organizations, we will continue to amplify the gastric cancer patient voice by establishing new programming, initiatives, and enhanced outreach addressing the challenges and barriers to quality cancer care for all patients.

Across the USA, communities have discovered per- and polyfluoroalkyl substance (PFAS) contamination of water supplies, and local responses have varied widely in terms of community involvement and the reaction of government agencies. This research aims to better understand the factors that influence community responses to PFAS contamination by comparing the experiences of two communities impacted by such contamination, Pease Tradeport in Portsmouth, NH, and Hyannis MA. Using 40 in-depth semi-structured qualitative interviews with community members from the Pease Tradeport and Hyannis, we compare two cases of impacts and responses to PFAS contamination and their involvement in PFAS health research. We found differences in the extent and types of local activism, broader awareness of local PFAS contamination, and the responses of town, regional, and state agencies. Community experiences were strongly influenced by the source of PFAS contamination and the activity of local and state legislators. These case studies show how the work of a fairly small number of residents can generate important knowledge and contribute to local and national outcomes, including drinking water regulation and medical guidelines. However, structural barriers exist to community action, often related to environmental justice inequities; similar levels of community action may lead to different outcomes. By investigating how affected parties discover and act on contamination, how government agencies respond to contamination, influences on the financing of cleanup, and identifying effective advocacy approaches, these results can be used to inform and guide other affected communities when navigating the discovery of environmental contamination.

Abstract Background: Colorectal cancer (CRC) is the third-most commonly diagnosed cancer and the second-leading cause of cancer death in men and women combined in the United States. To manage the disease, patients and caregivers turn to various tools and resources for financial assistance, information dissemination, emotional and peer support, and treatment planning, among other critical issues and needs they face. The Colorectal Cancer Alliance (the Alliance) created BlueHQ to provide patients and caregivers with a resource solution encompassing all potential areas of need. Methods: A survey aimed at understanding needs, barriers, and quality improvement opportunities was disseminated via the Alliance's Blue Hope Nation community for two weeks and by email. One hundred sixty-seven colorectal cancer patients and forty caregivers of colorectal cancer patients completed the survey. Results: Patients and caregiver respondents report reliance on external tools and resources to manage disease and support information. Of the support methods, patient respondents reported using social media (46.11%); notebooks, journals, and planners (45.41%); online articles (44.91%); the Blue Hope Nation Facebook group (41.32%); cancer discussion boards (35.33%); and spiritual or religious advice (29.94%). Patients sought financial assistance, local peer support and groups, and mental health help to minimize diagnosis-related stressors. To provide more efficient care and limit stress, the community suggested financial help, communication and support from other patients and caregivers, and informational resources. Conclusions: These survey results are consistent with other published learnings about patient and caregiver reliance on support tools and highlight the myriad resources that patients and caregivers currently use for managing CRC. BlueHQ is a support solution that provides patients and caregivers with access to information and resources tailored to users’ specified profiles, including molecular characteristics of the tumor. Users can also store documents and information from healthcare encounters, creating a longitudinal record and tracking disease progression. In the age of precision oncology, BlueHQ ensures patients and users are presented with personalized educational materials and multimedia resources to help manage their disease and bridge the gaps in patient support. BlueHQ was explicitly designed to connect the CRC community to the latest therapeutic and clinical research resources to improve outcomes and quality of life for all CRC patients. Citation Format: Kimberly Lynn Newcomer. Community-driven support platform BlueHQ: An innovative solution to address the needs of patients with colorectal cancer [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2024; Part 1 (Regular Abstracts); 2024 Apr 5-10; San Diego, CA. Philadelphia (PA): AACR; Cancer Res 2024;84(6_Suppl):Abstract nr 1307.

Purpose:Body image distress (BID) among head and neck cancer (HNC) survivors is a debilitating toxicity associated with depression, anxiety, stigma, and poor quality of life. BRIGHT (Building a Renewed ImaGe after Head & neck cancer Treatment) is a brief cognitive behavioral therapy (CBT) that reduces BID for these patients. This study examines the mechanism underlying BRIGHT.Methods:In this randomized clinical trial, HNC survivors with clinically significant BID were randomized to receive 5 weekly psychologist-led video tele-CBT sessions (BRIGHT) or dose-and delivery matched survivorship education (attention control [AC]). Body image coping strategies, the hypothesized mediators, were assessed using the Body Image Coping Skills Inventory (BICSI). HNC-related BID was measured with the IMAGE-HN. Causal mediation analyses were used to estimate the mediated effects of changes in BICSI scores on changes in IMAGE-HN scores.Results:Among 44 HNC survivors with BID, mediation analyses showed that BRIGHT decreased avoidant body image coping (mean change in BICSI-Avoidance scale score) from baseline to 1-month post-intervention relative to AC (p = 0.039). Decreases in BICSI-Avoidance scores from baseline to 1-month decreased IMAGE-HN scores from baseline to 3-months (p = 0.009). The effect of BRIGHT on IMAGE-HN scores at 3-months was partially mediated by a decrease in BICSI-Avoidance scores (p = 0.039).Conclusions:This randomized trial provides preliminary evidence that BRIGHT reduces BID among HNC survivors by decreasing avoidant body image coping. Further research is necessary to confirm these results and enhance the development of interventions targeting relevant pathways to reduce BID among HNC survivors.Trial Registration:This trial was registered on ClinicalTrials.gov identifier NCT03831100 on February 5, 2019.