Larson, Nicole L.

Background: Breast cancer survivors face a risk of significant psychological distress, which can persist for years after their initial diagnosis. Although numerous guidelines and tools exist to help screen for and measure distress in patients with cancer, additional longitudinal studies are needed to better characterize the trajectory of distress over time. Patients and Methods: We conducted a longitudinal study to evaluate distress and health-related quality of life in patients with breast cancer. Annual assessments included global mental and physical health scores using the Patient-Reported Outcomes Measurement Information System Global-10 (PROMIS-10), posttraumatic stress symptoms using the Impact of Event Scale-Revised (IES-R), and depressive symptoms using the Patient Health Questionnaire-2 (PHQ-2). Eligible participants had stage 0–III breast cancer, with baseline surveys administered within 1 year of diagnosis. Annual follow-up surveys were conducted through year 4 after the baseline survey. Only patients who completed the baseline survey and at least one follow-up survey were included in this analysis. Individuals with stage IV or recurrent breast cancer were excluded. Results: A total of 2,140 individuals were included. Over time, global mental health scores declined slightly, with differences in T-scores from baseline ranging from 0.4 to 0.9. In contrast, global physical health scores improved, with differences in T-scores ranging from 0.3 to 0.6. Mean scores remained in the normative range. Depressive symptoms remained stable throughout the study period, while posttraumatic stress symptoms showed improvement over time. Conclusions: This study provides important longitudinal data on distress subtypes in breast cancer survivors with nonmetastatic disease. Although global mental health declined slightly, depression symptoms remained stable, and posttraumatic stress symptoms improved. Investigation of distress subtypes over time merits further study to advance detection of significant distress across the cancer continuum.

PURPOSE Over 50% of households in the United States have at least one musician—many musicians are also breast cancer survivors. This group has not been well studied, and given the level of fine sensory-motor skill required for musicianship, we hypothesized that musicians experience unique manifestations of breast cancer treatment toxicities. METHODS A nine-item Musical Toxicity Questionnaire (MTQ) was distributed to patients who had consented to participate in the Mayo Clinic Breast Cancer Registry. The MTQ screened participants by asking if they played a musical instrument or sang in the last 10 years: questions populated for those who answered yes. Respondents were asked if they noticed difficulty with their musical endeavor during or after breast cancer treatment, defined as acute musical toxicity (AMT). The questionnaire asked which side effect and cancer-directed therapy most influenced musical ability, what musical attributes were affected, and the timeline of resolution. Multivariable and classification tree analyses assessed relationships between AMT and treatment characteristics. RESULTS Of 1,871 survey respondents, 29% (535/1,871) self-identified as musicians. Over a quarter (27%, 144/535) reported AMT, and for 57% (82/144), AMT had not resolved at the time of survey. Of the treatments each participant received, chemotherapy was most often reported as most negatively impactful (63/89 who received chemotherapy, 71%). Decreased endurance was the most common musical difficulty (64% of those with AMT, 92/144), followed by decreased accuracy, trouble playing/singing quickly, and difficulty using proper technique. Multivariable and classification tree analyses revealed that receipt of chemotherapy was most strongly correlated with AMT. CONCLUSION These results will help oncology care teams counsel musicians, answer questions about impacts on musicality, and provide a timeline for resolution of musical symptoms.

Context.— Cardiac and pulmonary allograft recipients represent a unique population, frequently interacting with support groups and exhibiting intense curiosity about their pathology. Like other solid organ transplant patients, they have enduring and frequent interaction with the laboratory for routine allograft surveillance. Objective.— To address patient requests to understand what happens to their explanted organ and to better understand their disease while simultaneously improving awareness of pathologists’ roles in their continuing care. Design.— At routine follow-up appointments, transplant nurse coordinators offer each allograft recipient the opportunity to interact with a pathologist in our “ On My Path ” program. Organ viewing occurs in a private setting, in a specialized room. Relevant pathology is discussed, and questions are answered, with documentation in the medical record. The patient is subsequently gifted a 3-dimensional model of their explanted organ. Transplant coordinators were surveyed for their feedback on the experience. Results.— One hundred fifty-eight interactions have been documented (2017–2022) at our institution, including patients who underwent cardiac transplant (96, 61%), single or bilateral lung transplant (54, 34%), or combination lung and heart transplant (8, 5%). Transplant coordinators reported an increase in patient understanding of their disease and emotional closure related to the disease through the On My Path program. Conclusions.— Pathologists providing direct patient care is a feasible model that addresses currently unmet desires of the transplant population to better understand their pathology. Providing a 3-dimensional model helps to empower patients and drives satisfaction. These interactions also improve awareness about pathology as a discipline and its importance in the continued care of transplant recipients.

Background: There are limited evidence-based data to guide treatment recommendations for breast cancer (BC) patients ≥80 years (P80+). Identifying and addressing unmet needs are critical. Aims: Advocate-BREAST80+ compared the needs of P80+ vs. patients < 80 years (P80−). Methods: In 12/2021, a REDCap survey was electronically circulated to 6918 persons enrolled in the Mayo Clinic Breast Disease Registry. The survey asked about concerns and satisfaction with multiple aspects of BC care. Results: Overall, 2437 participants responded (35% response rate); 202 (8.3%) were P80+. P80+ were less likely to undergo local regional and systemic therapies vs. P80− (p < 0.01). Notably, P80+ were significantly less satisfied with information about the short and long-term side effects of BC therapies and managing toxicities. P80+ were also less likely to have participated in a clinical trial (p < 0.001) or to want to do so in the future (p = 0.0001). Conclusions: Although P80+ experienced less anxiety and symptom-related distress compared with P80−, they were significantly less satisfied with information regarding the side effects of BC therapies and their management. P80+ were significantly less likely to have participated in a clinical trial or be open to considering this option. Future studies should address educational needs pertaining to side effects and barriers to research participation in P80+.

12048 Background: Playing music has been an important part of human culture for millennia. Today more than half of American households have at least one person who plays music, and in the UK 43% of adults play an instrument. Despite the overlap between musicians and people diagnosed with cancer, the effect of cancer treatment on musicianship has not been well-studied. We previously reported that 26% of a musician breast cancer survivor cohort reported difficulty with musicianship after treatment, and here we conduct further analysis to identify treatment and disease factors associated with this difficulty, termed acute musical toxicity (AMT). Methods: The Musical Toxicity Questionnaire was distributed to participants who had previously enrolled in the Mayo Clinic Breast Cancer Registry. PROMIS (Patient-Reported Outcomes Measurement Information System) scores were available through the Registry and treatment details were collected retrospectively. Due to the inter-dependency and high correlation between treatment and disease-related variables, a classification tree analysis (CTA) was performed to identify the combination of variables that most accurately classified patients by AMT. Sixteen variables were analyzed by the algorithm. Logistic regression was utilized for examining associations between AMT and continuous variables. Results: Of the 4075 surveys distributed, 1871 were returned and 535 respondents identified as musicians. Median time from diagnosis was 5.2 years, respondents were mostly stage I or II (71%), and 32% were node positive (N+). Over a quarter (26% or 144 respondents) reported AMT. In the final CTA model, being N+ was strongly associated with AMT (42% of those N+ had AMT, 20% of those not N+ had AMT). For respondents who were N+, those who received endocrine therapy were more likely to have AMT than those who did not (46% vs 21% respectively). Subsequent leaves identified not undergoing axillary lymph node dissection (ALND) and receiving chemotherapy as associated with AMT. For respondents who did not receive chemotherapy, breast reconstruction was associated with AMT (60% vs 19%). Variables such as mastectomy, radiation volume, specific chemotherapies, and stage of disease were not selected by the algorithm. The odds of having AMT decreased by 9.7% and 17% with each additional point in the composite mental health (p=0.003) and physical health (p<0.001) PROMIS scores, respectively. The odds of having AMT increased by 3.5% with each lymph node removed (p=0.001). Conclusions: The final model suggests that the group with the largest proportion of AMT was N+, received endocrine therapy, did not have ALND, and received chemotherapy. Both physical and mental health PROMIS scores were associated with AMT, although the directionality of this relationship requires more study. Care teams should counsel patients on potential musical toxicity and engage in shared decision making with musical patients.

Abstract Background: Eyebrow and eyelash loss, known as madarosis, can occur secondary to breast cancer-directed therapy. However, the incidence and predictors of this phenomenon are not well-known. The purpose of this study is to ascertain the proportion of breast cancer survivors who experience madarosis, potential contributing factors to eyebrow and eyelash loss, and associations between this symptom and mental health. Methods: Breast cancer survivors were invited to participate in an ongoing longitudinal cohort study, the Mayo Clinic Breast Disease Registry (MCBDR), after having been seen at least once for breast cancer at Mayo Clinic in Rochester, MN. Those who consented were mailed a survey approximately one year after diagnosis. Respondents were asked to report their degree of eyebrow and eyelash loss experienced since their diagnosis on a 4-point scale of “no loss” (0) to “complete loss” (3). The proportions of participants who reported eyebrow and eyelash loss were evaluated overall and according to treatment type by descriptive statistics. Relationships between eyebrow and eyelash loss and mental health scores collected using the PROMIS-10 project scales (ranging from 0-20), with the poorest mental health indicated by scores under 8, were explored. Results: 838 registry participants responded to the year 1 survey’s alopecia questions. The median age of breast cancer survivors was 59.4 years (range 22-100 years). The majority were diagnosed at stage I-II (69%). 315 (37%) had received chemotherapy (+/- endocrine therapy), 415 (50%) had received endocrine therapy only, and 108 (13%) had received neither. Nearly half reported eyebrow loss (49%) or eyelash loss (49%). Eyebrow loss was reported by 89% of chemotherapy recipients, 27% of endocrine therapy only recipients, and 19% of those not treated with chemotherapy or endocrine therapy. 102 (32%) of those with chemotherapy-associated eyebrow loss reported that it was complete. Eyelash loss was reported by 274 (87%) of chemotherapy recipients, 112 (27%) of endocrine therapy only recipients, and 23 (21%) of those who received neither. Although no formal statistical testing was performed, there was a numerically higher proportion of patients with eyebrow and/or eyelash loss who reported poor mental health. Conclusions: Madarosis is a bothersome symptom in cancer survivors, particularly after chemotherapy. Future investigation into the incidence, predictors, and treatment of anti-neoplastic medication-related madarosis is needed. Table. Global mental health scores on PROMIS scale for eyebrow and eyelash loss Citation Format: Sarah Premji, Kathryn Ruddy, Nicole Larson, Charles Loprinzi, Brittany Dulmage, Maryam Lustberg, Fergus Couch, Janet Olson, Elizabeth Cathcart-Rake. Eyebrow and eyelash loss in breast cancer survivors [abstract]. In: Proceedings of the 2023 San Antonio Breast Cancer Symposium; 2023 Dec 5-9; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2024;84(9 Suppl):Abstract nr PO5-12-10.

Abstract Background: Retrospective studies suggest that breast cancer survivors report treatment-associated hair loss or thinning years after their initial diagnosis. This study investigates patient perceptions of alopecia persisting 6 years after the diagnosis of breast cancer. Methods: Breast cancer survivors who had signed informed consent for participation in a prospective longitudinal cohort study, the Mayo Clinic Breast Disease Registry (MCBDR), after diagnosis of breast cancer approximately six years prior, were mailed a survey. This survey asked about degree of bother from hair thinning and hair loss on a scale from 0 “not at all” to 4 “extremely” and about use of hair thickening/regrowth products. PROMIS-10 project scales assessed global mental health (5: worst mental health, 20: best mental health). Data were analyzed using descriptive statistics. Results: 969/1476 participants responded (response rate 65.7%); 819 participants were available for analysis. Participant median age was 65.7 years (range 34 -100 years). 604 (73%) had been diagnosed with stage I-II breast cancer, 248 (30%) had received chemotherapy (+/- endocrine therapy), 365 (45%) had received only endocrine therapy, and 206 (25%) had received neither. Nearly half (381, 47%) reported hair loss and over half (468, 57%) reported hair thinning. 155 (19%) used hair regrowth products. Amongst the 526 who were 55 years and older, 270 (51%) reported hair loss and 323 (61%) hair thinning; 111 (38%) of the 291 women under 55 years reported hair loss and 145 (50%) hair thinning. Twenty-eight percent of chemotherapy recipients, 18% of patients who did not receive chemotherapy but received endocrine therapy, and 14% of patients who had received neither reported continued difficulty with moderate to extreme hair loss. Moderate to extreme bother from hair thinning was reported by 34% of chemotherapy recipients, 22% of endocrine therapy-only recipients, and 18% of those who had received neither. See the table for associations between mental health scores and hair loss/thinning. Use of hair growth products was reported by 29% of chemotherapy recipients, 14% of endocrine therapy-only recipients, and 15% of those who had received neither oncologic therapy. Conclusions: Hair loss and thinning are frequently reported as persistently bothersome symptoms from breast cancer survivors. Future investigations into the incidence, predictors, and treatment of chemotherapy and endocrine therapy-associated alopecia are needed. Global mental health scores on PROMIS scale for hair loss and hair thinning Citation Format: Sarah Premji, Kathryn Ruddy, Nicole Larson, Charles Loprinzi, Brittany Dulmage, Maryam Lustberg, Fergus Couch, Janet Olson, Elizabeth Cathcart-Rake. Delayed alopecia among breast cancer survivors [abstract]. In: Proceedings of the 2023 San Antonio Breast Cancer Symposium; 2023 Dec 5-9; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2024;84(9 Suppl):Abstract nr PO2-13-09.

Abstract The Mayo Clinic Breast Disease Registry (MCBDR) was developed to serve as a cohort of newly diagnosed breast cancer patients to address questions of etiology, prognosis, and survivorship. Eligibility is limited to patients 18 years or older with a confirmed first stage 0-4 breast cancer diagnosis within the last year. Consent is completed via phone, patient portal, or in-person. Upon enrollment, a baseline questionnaire and blood collection are completed. Annual follow-up surveys that capture BC outcomes are sent to all living participants. The MCBDR cohort (N=9,215, enrolled between 2001 and 2023) is 99% female, with an average age at diagnosis of 58 years (SD=12.7). Currently, MCBDR has an average time since diagnosis of 9.8 years (SD=6.4). The participants are 94% white, and 55% live in Minnesota. At the time of baseline questionnaire completion, 77% were married, 84% had a bachelor’s degree or higher, and 8% reported financial hardship. Further, 35% reported a history of smoking, 11% consumed more than two drinks per day, and 9% reported fair or poor social relationships. Within MCBDR, 53% of the participants had stage 0 or 1 cancer at diagnosis, while 28% had stage 2, 9% stage 3, and 3% stage 4 BC. Tumors were triple negative in 9%, HER 2 positive in 9%, hormone receptor-positive and HER2 low or negative in 55%, and 27% had missing HER2 status. Pathological TNM staging was available on 98%, among which 33% were staged at T2 or higher and 27% were node-positive. Definitive BC surgery was completed at Mayo Clinic for 73%, with 35% undergoing mastectomies and 44% having lumpectomies. 74% were treated with radiation, 56% underwent chemotherapy, and 79% were treated with endocrine therapy. Clinical genetic testing results have been nurse-abstracted for 94% of the cohort. Of those known to be tested, 521 (6%) had a pathogenic or likely pathogenic mutation identified in a BC causing gene. In addition, whole exome sequencing was completed on 71% of MCBDR participants in 2020, in which 167 previously unknown pathogenic or likely pathogenic mutations were identified. After the initial diagnosis and active treatment phase, nurse abstraction identified 151 (2%) participants known to have been diagnosed with a contralateral BC diagnosis, and 4% known to have been diagnosed with a second primary other than breast. Recurrence in the same breast has been reported for 242 (3%), with 72% of those recurrences occurring within 5 years of initial diagnosis and another 19% occurring 5-10 years post diagnosis. Among the 1,262 (14%) who are deceased, 24% died from BC and 19% had distant metastases at diagnosis or a distant recurrence. Amongst all deceased, 6% died within 1 year of their diagnosis and 43% died within 5 years of diagnosis. For participants who died from BC, 10% died within 1 year of their diagnosis and 64% died within 5 years of diagnosis. MCBDR data has been used in numerous publications and is an essential resource for efficient observational research analyses. Citation Format: Nicole L. Larson, Janet Olson, Kathryn Ruddy, Fergus Couch, Denise Herman, Feven Abraha. Mayo Clinic breast cancer cohort: A valuable resource for breast cancer research [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 7339.

ImportanceYoung women with breast cancer who have germline pathogenic variants in BRCA1 or BRCA2 face unique challenges regarding fertility. Previous studies demonstrating the feasibility and safety of pregnancy in breast cancer survivors included limited data regarding BRCA carriers.ObjectiveTo investigate cumulative incidence of pregnancy and disease-free survival in young women who are BRCA carriers.Design, Setting, and ParticipantsInternational, multicenter, hospital-based, retrospective cohort study conducted at 78 participating centers worldwide. The study included female participants diagnosed with invasive breast cancer at age 40 years or younger between January 2000 and December 2020 carrying germline pathogenic variants in BRCA1 and/or BRCA2. Last delivery was October 7, 2022; last follow-up was February 20, 2023.ExposurePregnancy after breast cancer.Main Outcomes and MeasuresPrimary end points were cumulative incidence of pregnancy after breast cancer and disease-free survival. Secondary end points were breast cancer–specific survival, overall survival, pregnancy, and fetal and obstetric outcomes.ResultsOf 4732 BRCA carriers included, 659 had at least 1 pregnancy after breast cancer and 4073 did not. Median age at diagnosis in the overall cohort was 35 years (IQR, 31-38 years). Cumulative incidence of pregnancy at 10 years was 22% (95% CI, 21%-24%), with a median time from breast cancer diagnosis to conception of 3.5 years (IQR, 2.2-5.3 years). Among the 659 patients who had a pregnancy, 45 (6.9%) and 63 (9.7%) had an induced abortion or a miscarriage, respectively. Of the 517 patients (79.7%) with a completed pregnancy, 406 (91.0%) delivered at term (≥37 weeks) and 54 (10.4%) had twins. Among the 470 infants born with known information on pregnancy complications, 4 (0.9%) had documented congenital anomalies. Median follow-up was 7.8 years (IQR, 4.5-12.6 years). No significant difference in disease-free survival was observed between patients with or without a pregnancy after breast cancer (adjusted hazard ratio, 0.99; 95% CI, 0.81-1.20). Patients who had a pregnancy had significantly better breast cancer–specific survival and overall survival.Conclusions and RelevanceIn this global study, 1 in 5 young BRCA carriers conceived within 10 years after breast cancer diagnosis. Pregnancy following breast cancer in BRCA carriers was not associated with decreased disease-free survival.Trial RegistrationClinicalTrials.gov Identifier: NCT03673306

Abstract Purpose: The aims of the Advocate-BREAST project are to study and improve the breast cancer (BC) patient experience through education and patient-centered research. Methods: In December 2021, an electronic REDCap survey was circulated to 6,918 BC survivors (stage 0-4) enrolled in the Mayo Clinic Breast Disease Registry. The questionnaire asked about satisfaction with BC care delivery, and education and support receive(d) regarding BC linked concerns. Patients also ranked Quality Improvement (QI) proposals. Results: The survey received 2,437 responses. 18% had Ductal Carcinoma in Situ, 81% had early breast cancer (EBC), i.e. stage 1-3, and 2% had metastatic breast cancer (MBC). Mean age was 64 (SD 11.8), and mean time since diagnosis was 93 months (SD 70.2). 69.3% of patients received all care at Mayo Clinic. The overall experience of care was good (>90 %). The main severe symptoms recalled in year 1 were alopecia, eyebrow/eyelash thinning, hot flashes, sexual dysfunction, and cognitive issues. The main concerns recalled were fear of BC recurrence/spread; loved ones coping; fear of dying, and emotional health. Patients were most dissatisfied with information regarding sexual dysfunction, eyebrow/eyelash thinning, peripheral neuropathy, and on side effects of immunotherapy/targeted therapies. Top ranking QI projects were: i) Lifetime access to concise educational resources; ii) Holistic support programs for MBC and iii) Wellness Programs for EBC and MBC. Conclusions: Patients with early and advanced BC desire psychological support, concise educational resources, and holistic care. Implications: Focused research and QI initiatives in these areas will improve the BC patient experience