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Helping Ourselves, Helping Others: The Young Women’s Breast Cancer Study

LidiaSchapiraby Lidia Schapira MD, Massachusetts General Hospital, Boston; Ann Partridge MD, MPH, Dana Farber Cancer Institute; Shoshana Rosenberg, MPH Dana Farber Cancer Institute; Katherine Ruddy MD, Mayo Clinic; Steven Come MD, Beth Israel Deaconess Hospital


Established in 2006, Helping Ourselves, Helping Others (HOHO):  the Young Women’s Breast Cancer Study has enrolled more than 1,300 women who were 40 years or younger at the time of their diagnosis of breast cancer. These women were recruited from many participating institutions including Dana- Farber/Brigham and Women’s Cancer Center, Massachusetts General Hospital, Beth Israel Deaconess Medical Center, University of Colorado, Mayo Clinic, Sunnybrook Health Sciences Centre in Toronto, Canada, as well as several affiliated community cancer centers. Led by Dr. Ann Partridge at Dana-Farber Cancer Institute, many researchers are actively contributing to advance our understanding of the particular concerns faced by young women, to identify biological and psychological issues that require more research and that define the lived experience of young patients and survivors.

It is estimated that about 7% of all female breast cancer is diagnosed in women under 40. By completing surveys, providing blood samples, and granting permission for our study staff to collect a tumor sample, medical records, and gene sequencing data, participants in HOHO have provided a wealth of important information regarding breast cancer in young women, which we hope will help doctors develop more effective, personalized care for young women in the future. Advocates and scientists agree that more research is needed to fill our knowledge gaps in several crucial areas that affect this population: risk factors, effect of treatment on emotional and physical health, fertility and pregnancy after breast cancer, quality of life and survivorship issues, and the development of metastases.

In this short article, we will briefly summarize some of our findings related to important concerns we have identified in this population: preserving fertility, weighing pros and cons of adjuvant therapies, obtaining genetic testing and making decisions about the extent of surgical treatment. These findings have been presented at national and international meetings and published in peer reviewed scientific journals.


Ovarian function in breast cancer survivors

Cancer treatment can interfere with fertility in many ways, as the chemotherapy agents that are used to kill cancer cells also affect other cells, organs, and hormones in the body. Ovarian function concerns may also affect decision-making about endocrine therapy, the type and severity of menopausal symptoms and subsequent health and psychosocial concerns among young survivors. Data collected in HOHO allowed us to compare markers of fertility (anti-mullerian hormone (AMH), estradiol (E2), and follicle-stimulating hormone (FSH) levels) in survivors with and without amenorrhea (the absence of menstrual period) to determine if there are any biological indicators of fertility and ovarian function after treatment.  This is important because it provides physiological data and helps us understand how likely it is that a woman will be able to conceive after treatment. We found that median AMH and E2 were lower and FSH was higher in women with amenorrhea – meaning that AMH, E2, and FSH all are promising biomarkers for residual ovarian function and fertility in young breast cancer survivors. Future research will evaluate whether AMH, E2, and FSH at baseline and early in the survivorship period predict ovarian function later.


Weighing pros and cons of adjuvant therapies

Evidence has long demonstrated that premenopausal women obtain the greatest benefit from adjuvant chemotherapy overall, and recent data have shown there are also several different strategies for manipulating the menopausal status to improve disease outcomes without necessarily including cytotoxic chemotherapy. Still, many premenopausal women will require adjuvant chemotherapy, and this is likely to have important implications both on their breast cancer outcomes and on comorbidities and psychosocial outcomes.  Other important options available to young women with hormonally sensitive tumors are to suppress the function of their ovaries temporarily using medications. This will cause an early menopause (although reversible) and burdensome symptoms that are likely to impact on physical and emotional health.

In the last few years we have also learned that longer duration of adjuvant hormonal therapy leads to better outcomes and this is an especially thorny issue for young survivors. Continuing treatment in years 5-10 post diagnosis with ovarian suppression and an aromatase inhibitor (a drug that reduces the amount of estrogen in postmenopausal women by interfering with production) is associated with substantial side-effects in premenopausal women. We are trying to understand how best to advise and guide women who are currently at that juncture, through a combination of personalized communication and lifestyle interventions aimed at increasing coping skills and reducing stress.


Obtaining Genetic Information

Since we first started the study 10 years ago, we have found an increase in the frequency BRCA testing and confirmed that this genetic information is used to make treatment decisions among women who test positive vs negative for a BRCA mutation. In 2014, Angelina Jolie’s story shared in an open letter published by the New York Times, helped to raise awareness of family history as an important risk factor for breast cancer in young women.  Jolie was both praised and criticized for submitting the piece, but there is no question that it had a global impact and helped promote a conversation about personal risk, screening and lifestyle factors, for every young woman and her physician.

In our studies, we found a trend towards more testing between 2006 and 2013, with more than 95% of participants reporting they were tested by 2013. We asked those who were not tested about the reasons and found that some had not been properly informed about their risk, while others had access to information but chose to defer or decline testing. Across the board we heard that this knowledge (i.e. whether or not they were mutation carriers) influenced their thinking about their choice of surgical procedure.


Perceptions, knowledge, and satisfaction with contralateral prophylactic mastectomy

Young women with unilateral breast cancer often overestimate the odds that cancer will occur in their other, healthy breast, and decide to have the healthy breast surgically removed—a procedure known as a contralateral prophylactic mastectomy (CPM). In 2010, a sample of Young Women’s Breast Cancer Study participants was surveyed about their decision to have CPM. The survey included questions on decision-making, knowledge, and satisfaction with the procedure. Women who were not carriers of a genetic mutation estimated that 10 of 100 (10%) women treated with CPM would develop contralateral breast cancer in the five years after treatment, yet the actual risk is estimated to be between 2–4% over the five years. While more than 70% of women knew that undergoing CPM would not mean they would live longer following a breast cancer diagnosis, most women cited improved survival as an important reason for why they chose CPM. These findings tell us there is a need to ensure effective communication of both the risks and benefits of the procedure, as well as a need to better support women when they are making treatment decisions.



We hope these brief comments provide a glimpse to the reader of the work being done in the cohort. We hope these ongoing and future studies will provide important information to help inform the care of young women and lead to counseling and supportive interventions that are strictly tailored to meet their needs.



Dr. Schapira attended Dartmouth Medical School and then completed an internship and residency in Internal Medicine at the Beth Israel Hospital in Boston. She then did a Fellowship in Hematology and Oncology at the Brigham and Women’s Hospital in Boston followed by a Research Fellowship in the Division of Aging at Harvard Medical School. Dr. Schapira practices at the Massachusetts General Hospital in Boston and her clinical work is devoted to the treatment of breast cancer. She is actively involved in clinical research of treatments for breast cancer and psychosocial issues that affect patients and families. In addition, Dr. Schapira has played an active role in both research and advocacy related to increasing awareness of cancer research and clinical trials among the underserved through community programs for healthcare workers and patient advocates. Dr. Schapira championed the need to provide training in communication skills for oncology clinicians and developed innovative curricula that have been disseminated widely. In addition she participates actively at Harvard Medical School in various efforts designed to integrate cross-cultural care education into the coursework and clinical experience of medical students.

She is a senior investigator in a longitudinal study of young women with breast cancer in collaboration with colleagues at the Dana Farber Cancer Institute. Prior work addressed psychosocial needs of cancer patients and families, community interventions to reduce health disparities and communication skills training for cancer professionals. She has collaborated with both advocacy and professional organizations to design interventions that facilitate coping for patients with cancer and their families through information, guidance and improved communication.  She is active on many national and international editorial boards, is a former member of the Board of Directors of the American Psychosocial Oncology Society, Editor-in-Chief of the American Society of Clinical Oncology’s website for the public: Cancer.Net, consultant editor of Journal of Clinical Oncology.



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