Stacy Lewis

Breast Cancer in Young Women: Research Priorities. A Report of the Young Survival Coalition Research Think Tank Meeting.

Breast cancer in young women is a significant issue-7% of all female breast cancer is diagnosed in women under 40 years of age. Young women with breast cancer (YWBC) face significant and unique challenges, including a higher likelihood of biologically aggressive disease and metastatic disease at diagnosis, leading to poorer prognosis, more aggressive treatment and long-term treatment-related toxicities, and unique psychosocial concerns. This article summarizes the Young Survival Coalition (YSC) Research Think Tank Meeting, held in Arlington, Virginia, in February 2013, and presents the process that led to YSCs priorities for YWBC research. The meetings participants focused on six broad categories of investigation in which additional advancements in research on YWBC are crucial: risk factors; treatment; fertility; pregnancy-associated breast cancer; quality of life and survivorship; and metastasis. Several key themes emerged from this meeting. Researchers and advocates felt that a large-scale data registry focused on YWBC is necessary to collect quality information to guide future research for YWBC. This database should include clinical data, genomic profiling of primary tumor and metastatic sites, and an increased focus on fertility and pregnancy following breast cancer treatment. The participants also felt that more must be done to elucidate how and why YWBC develop more aggressive tumors, and to what degree treatment should be modified for young women. The discussions summarized here led to the formulation of YSCs Research Agenda, published in May 2014.

Measuring knowledge gained for young breast cancer survivors and co-survivors.

213 Background: Cancer impacts not just the survivor, but those caring for her. Young Survival Coalition (YSC) is the premier global organization dedicated to critical issues in young breast cancer survivors (YBCS) and co-survivors. In 2015, targeted programming was introduced at YSCs Northeast Regional Symposium. Prior to the event, YSC crafted pre- and post-surveys to measure knowledge gained through the Symposium as an intervention for YBCS and co-survivors. METHODS YSC disseminated pre- and post-event evaluations via online surveys. The pre-survey was sent to registrants (240; 75 completed), and the post-survey was sent to attendees (178; 99 completed). The surveys were designed to measure baseline and increased knowledge in the 4 areas presented at the Symposium: Sex and Intimacy (S&I), Practical Matters (PM), Resiliency and Communication. Questions included demographics, diagnosis, identification as YBCS/co-survivor and baseline knowledge in the 4 areas. Questions in the post-survey followed the same format and measured knowledge gained from the Symposium. RESULTS In pre-survey data, YBCS and co-survivors most wanted knowledge and resources in S&I and PM. Seventy-five percent reported S&I as a challenge since diagnosis, and 51% stated communication in relationships was difficult. Twenty-two percent felt they did not have the resources they needed to address PM, while 20% felt unsure about what resources they needed. Following the Symposium, 74% felt that they had tools and resources to help in their everyday life as it relates to S&I after the Symposium. Sixty-seven percent reported gaining knowledge they did not have prior to attending. S&I as it relates to YBCS (partnered or single) and rebuilding self-confidence were areas where more information was desired. Seventy-five percent indicated they received information on PM of which they were unaware prior to attending. Follow-up care, financial concerns and career were areas where more information was desired. CONCLUSIONS YBCS and their co-survivors are in need of support and information that is targeted and easily accessible. YSC will continue crafting specific programming for YBCS and co-survivors and measuring the knowledge of both to stay current with their needs.

Abstract P5-15-21: SurvivorLink: Evolution of 1:1 peer support to connect young women with breast cancer

Background There are 250,000 breast cancer survivors living in the United States today who were diagnosed under the age of 40. Compared to older women, young women (YW) generally face more aggressive cancers, lower survival rates, an increased risk of metastatic recurrence, and a higher rate of anxiety and depression. YW also face unique issues as a result of their diagnosis. They are more likely to be single and dating, starting a career, raising young children, or possibly starting a family. Cancer treatments may impact fertility, cause premature menopause, and sexual dysfunction. Due to these and other concerns, YW diagnosed with breast cancer strongly desire to connect with other young survivors. Young Survival Coalition (YSC) is the premier global organization dedicated to the critical issues unique to YW and breast cancer. It is YSC’s goal to ensure that no young woman goes through breast cancer alone. Methods In order to connect YW diagnosed with breast cancer with others similarly situated, YSC initiated its SurvivorLink program (SL) in 2006 then known as Point of Contact (POC). YW seeking to connect with another young breast cancer survivor called or emailed a YSC staff person, who connected her to a trained POC. POCs received training through 2-day in-person sessions held periodically throughout the country. In 8 years, there were 89 volunteers trained in 7 in-person training sessions. Between 2008 and 2010, 776 YW requested connections through SL. In 2011, usage of SL dropped significantly. In 2013, YSC re-examined the SL program to determine whether it was a needed resource. If so, YSC sought to determine how to revitalize and expand it. Results During the analysis, a few key issues arose. Despite the stated desire of YW to connect with others, SL was not well-utilized from 2011 on. Further research determined that many young survivors were not aware of SL, even if they knew of YSC. The in-person trainings were expensive and not all interested volunteers were located in the same geographic area. This limited the ability to maintain a pool of fresh volunteers with diverse experiences. Data on the program had not been maintained in one central location. It was difficult to discern who was matched through SL, when, and the result of their interaction. YSC believes that the program is important to continue. While other organizations offer call-in support or peer matching, none focus solely on YW with breast cancer nor have a diversity of YW with different diagnoses and experiences who could serve as potential matches. Taking these issues into consideration, YSC took steps to bring renewed energy to this program. First, an online training portal for SL volunteers was developed. Through eight on-line modules, YSC can train more volunteers in a shorter period of time for less cost. Individuals can complete the training in their own time from the comfort of their own homes. In order to make YW aware of the program, SL is now regularly advertised on Facebook, the YSC homepage, and elsewhere. Finally, a central database was initiated to capture information on our trained volunteers, those who call-in, the matches made and the results of their interaction. This allows YSC to track the use and success of the program. Citation Format: Jean Rowe, Michelle Esser, Megan McCann, Stacy Lewis. SurvivorLink: Evolution of 1:1 peer support to connect young women with breast cancer [abstract]. In: Proceedings of the Thirty-Seventh Annual CTRC-AACR San Antonio Breast Cancer Symposium: 2014 Dec 9-13; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2015;75(9 Suppl):Abstract nr P5-15-21.

State of the research on breast cancer in young women.

117 Background: Young Survival Coalition (YSC) is the premier global organization dedicated to the critical issues unique to young women and breast cancer. In May, 2014, YSC released its Research Agenda which identified the most pressing research questions that must be answered in order to improve the quantity and quality of life for young women affected by breast cancer. METHODS This Research Agenda arose out of an almost two-year-long process created and facilitated by YSC, called the Research Think Tank (RTT). YSC assembled doctors, researchers and advocates to focus on six areas of particular importance to its young constituents: risk factors; treatment; metastasis; quality of life; fertility; and pregnancy. RESULTS Through the work of the RTT, YSC assessed the current state of knowledge as well as existing gaps in each of the six identified areas. While work is needed in all areas, there have been recent updates and progress regarding treatment and fertility. Additionally, quality of life studies examine the uniqueness of breast cancer in young women, although application of this knowledge through tested interventions, decision aids, or guidelines and tools for physicians are still lacking. Aspects of pregnancy during breast cancer and after breast cancer have been studied but many open questions remain. There has been little progress in understanding why so many breast cancers are diagnosed in the postpartum period, why they tend to be more aggressive, and what can be done to prevent or treat it. Research examining metastasis in young women is rare. Most research focuses on postmenopausal patients, and many studies set criteria that specifically exclude younger women. This is the topic area most in need of work and priority. Similarly, little research focuses on the specific risk factors for early onset breast cancer. These are likely distinct from the risk factors associated with postmenopausal breast cancer yet they are rarely separately examined. CONCLUSIONS Compared to older women, young women generally face more aggressive cancers, lower survival rates, and unique psychosocial concerns. Breast cancer in young women is an area in need of additional work and clarification in order to increase their quantity and quality of life.

Abstract P1-10-02: YSC research think tank to determine top priority research needs in young breast cancer patients

Background Each year, approximately 13,110 women under age 40 are diagnosed with breast cancer, with 1,200 dying of the disease. There are approximately 250,000 breast cancer survivors living in the US today who were diagnosed under 40. Compared to older women, young women generally face more aggressive cancers, lower survival rates, and unique psychosocial concerns. Breast cancer in women under 40 is rarely studied. Young Survival Coalition (YSC) is the premier global organization dedicated to the critical issues unique to young women and breast cancer. It is a strategic goal of YSC to increase the amount of quality research on young women, to define the greatest research needs for young women with breast cancer, and to advocate these needs to doctors and researchers. In 2001, YSC convened the “Medical Research Symposium on Young Women and Breast Cancer,” consisting of seven researchers from the New York City area from all of the major cancer disciplines. The resulting white paper set an initial YSC agenda on both the current state and future direction for research in young women. In 2012, YSC decided to revisit this agenda, review what progress has been made and what priority research areas remain. Methods In 2012, work on the YSC Research Think Tank (RTT) began. Our goal was to identify the most pressing research questions that would improve the quality and quantity of life for young women diagnosed with breast cancer. YSC assembled doctors, researchers and advocates to focus on six areas of particular importance to its young constituents: risk factors; treatment; metastasis; quality of life; fertility; and pregnancy. Each participant was assigned to a workgroup based on their stated interest and expertise. A young survivor advocate led and coordinated each workgroup. In mid- 2012, these groups met remotely to review the state of the research in each of their assigned areas. They compiled detailed reports summarizing their work and listed the research gaps pertinent to young women. In February, 2013, all RTT participants met in Arlington, Virginia for a two day in-person meeting. Each workgroup briefly presented their work to date and displayed a large poster reflecting what they believed to be the most pressing research questions. During day two of the RTT, attendees rotated through the assigned rooms of three workgroups (other than their own), discussing more fully each of the items that workgroup identified as a research priority. Participants placed each priority on a graph, reflecting how that priority would impact quality and quantity of life for young women. Each workgroup re-assembled and discussed the feedback they received, selecting their top three research priorities. Results Young women with breast cancer remain an understudied population. Taking the knowledge gained and recommendations received at the RTT meeting, YSC is currently drafting a white paper and updated research agenda to be finalized by spring, 2014. These documents will be published and promoted in an effort to focus the research community on the unique issues of young women with breast cancer to extend their quantity and improve their quality of life. Citation Information: Cancer Res 2013;73(24 Suppl): Abstract nr P1-10-02.