Breast Cancer Powerhouses Announce Groundbreaking Collaboration To Document the ‘Collateral Damage’ of Breast Cancer Treatment

September 30, 2013

Dr. Susan Love Research Foundation, Susan G. Komen and Young Survival Coalition Work Together To Document Side Effects of Breast Cancer Treatment, Chart Prevention and Causation

New York, N.Y. (September 30, 2013) — Three powerhouse breast cancer organizations — Dr. Susan Love Research Foundation (DSLRF), Susan G. Komen, and Young Survival Coalition (YSC) — today announced they are working together in a groundbreaking collaboration to document the short- and long-term physical and emotional side effects of breast cancer treatments, as part of DSLRF’s Health of Women [HOW] Study that eventually may lead to prevention strategies for, and causes of, breast cancer.

“There are more than three million people in the United States living with a history of breast cancer, but the cure comes with a cost,” said Dr. Susan Love, Chief Visionary Officer, Dr. Susan Love Research Foundation. “Whether they are people living with metastatic breast cancer, people whose cancer is in remission, or carriers of genetic mutations who choose to undergo prophylactic treatment, the side effects of today’s breast cancer treatments are wide-ranging, often debilitating and generally overlooked by the medical community. The price of being treated for breast cancer, though often effective at keeping the disease at bay and prolonging life, is physical and emotional as well as financial.”

Known for its innovative approach to research, the Dr. Susan Love Research Foundation decided to crowd-source the question of collateral damage of breast cancer treatment, putting out a call to the public in July to gather questions from those who have been treated for the disease. Within 24 hours of that first call to the Foundation’s Army of Women, more than 800 respondents questioned the physiological and psychological impact and the potential life-threatening effects of their breast cancer treatments. Their questions highlight dozens of side effects such as chemo brain, lymphedema, neuropathy, fatigue, depression, loss of sexual appetite — and the list goes on.

More data needs to be collected to provide the scientific community with the most robust cohort from which to derive and analyze the true cost of the cure. The Dr. Susan Love Research Foundation reached out to Susan G. Komen and Young Survival Coalition to ask for their help.

“We were pleased to join with Dr. Love to find answers to these critical questions,” said Susan G. Komen’s Founder and Chair, Global Strategy Nancy G. Brinker, a breast cancer survivor. ”The information gathered here can help the medical community better serve breast cancer patients today, and the larger HOW Study will give us information that could identify causes and preventive strategies for this devastating disease.”

"This powerful collaboration will ensure that the right questions are asked, including those specific to young women and breast cancer," said Jennifer Merschdorf, CEO of YSC and a young breast cancer survivor herself. “It is paramount that young women are well represented in this study since the collateral damage from breast cancer treatment more significantly impacts their personal and professional lives, including their ability to bear children.”

The public call for questions will continue through October and result in the development of an online questionnaire via the Health of Women [HOW] Study. The Health of Women Study is an online cohort launched in October 2012 to track women and men over time to pinpoint risk factors, successful prevention mechanisms and eventually, to help identify the cause of breast cancer. The collateral damage module of the HOW Study is expected to be launched early in 2014.

Questions about collateral damage from breast cancer can be submitted through October to http://www.questionthecure.org/, #questionthecure. Anyone interested in being part of this initiative can register for the Health of Women [HOW] Study (http://www.healthofwomenstudy.org/) and complete the basic questionnaires on personal health and/or breast cancer diagnoses. When the collateral damage module is complete and online, they will be notified by email.

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The Dr. Susan Love Research Foundation’s mission is to achieve a future without breast cancer by focusing on prevention and finding the cause. This will be accomplished by democratizing research to include the public’s voice in the process, facilitating research through programs like the Army of Women launched in 2008 as a resource for researchers, and performing research through projects like the innovative Health of Women [HOW] Study, created in 2012 to identify the cause and cost of the disease through an online cohort. The Dr. Susan Love Research Foundation, and its more than 374,000 volunteers nationwide, invite you to Act with Love and become part of a movement to bring the public voice to breast cancer research with the goal of eradicating the disease once and for all. To learn more and show your support, visit http://www.actwithlove.org/.

Susan G. Komen is the world’s largest breast cancer organization, investing more than $2.2 billion in its 31 years to research, community health programs, global outreach and public policy advocacy. Komen’s $790 million investment in research is the largest of any nonprofit outside of the U.S. government, and funds research along the entire cancer continuum, from prevention to early detection to treatments.  Additionally, Komen and its 118 Affiliates fund thousands of community health programs that provide free screenings, and financial, psychosocial and treatment support to hundreds of thousands of people facing breast cancer.

About Young Survival Coalition (YSC)

Established in 1998, Young Survival Coalition (YSC) is the premier global organization dedicated to young women diagnosed with breast cancer. YSC offers free resources, connections and educational materials so young women with breast cancer feel supported, empowered and hopeful. Through action, advocacy and awareness, YSC seeks to educate and influence the medical, research, breast cancer and legislative communities to address breast cancer in young women, and ensure that no young woman faces breast cancer alone. For more information, visit youngsurvival.org.