DALLAS, Sept. 28 /PRNewswire/ -- The Susan G. Komen Breast Cancer Foundation, recognized as the global leader in the fight against breast cancer, today announced a year-long program of initiatives that will identify and detail emergent issues essential to ensuring quality breast cancer care and survivorship.
Two of the most pressing areas the Foundation will address are breast pathology practices and tissue access and ownership. For the estimated two million women who are current breast cancer survivors and the thousands more newly diagnosed with breast cancer each year, these two issues - their ability to access their original breast tissue samples and the quality and accuracy of their diagnostic report - could be key to saving lives and accessing future cures.
“The powerful new potential of personalized treatment holds great promise for improving breast cancer patient outcomes. But such targeted treatment decisions increasingly depend on getting an accurate diagnosis and analysis of their specific type of breast cancer,” said Rebecca Garcia, PhD, vice president of health sciences for the Susan G. Komen Breast Cancer Foundation. “Bottom line, getting the right treatments to patients becomes impossible if pathology results are inaccurate or tissue is unavailable for future testing. Without personalized medicine, lives will be lost.”
Later this fall and in early 2007, the Foundation will issue two white papers on these interrelated areas: breast pathology practices and tissue access. The white papers will outline key questions that need to be addressed in order to improve current standards and provide a framework for discussion and further study. In addition, the Foundation will initiate a quality of care dialogue in partnership with leading societies and government and release the first annual State of Breast Cancer report at the organization’s 10th Mission Conference in June of 2007.
The issue: breast pathology practices
Breast cancer is a complex disease, not simply one disease but many, a fact that is never more apparent than on a patient’s pathology report. Drawn from an ever-increasing range of tests that indicate size, location, spread, and biologic make-up of a tumor, the pathology report is vital to informing decisions about the most appropriate and beneficial treatment.
“Just as setting quality standards in mammography has helped us take fuller advantage of that technology, we now need to build on this experience and examine the full spectrum of diagnostic tests and information that make up a breast cancer pathology report,” adds Dr. Cheryl Perkins, the Komen Foundation’s senior clinical advisor.
The issue: tissue access and ownership
Currently, there are no national, uniform standards to deal with the retention and preservation of tissue specimens, and no standards to ensure a patient’s future access to his or her specimen. As it stands today, some breast cancer tissue is retained for clinical use, many samples are used up for research and other specimens are completely discarded leaving patients without potentially life saving options for additional or future testing.
“This emerging issue has huge implications for the thousands being diagnosed every day with this devastating disease,” said Diane Balma, public policy director at the Susan G. Komen Breast Cancer Foundation and an 11-year breast cancer survivor. “I know from personal experience that if my tissue sample had been thrown away, I would never have learned several years after my diagnosis that I was a candidate for Herceptin, one of the most promising treatments combating recurrence in HER-2 patients today.”
In addition, issues of tissue access and ownership pose critical ethical questions not only for patients’ rights but for researchers and clinicians alike.
Answers for Patients in the Meantime
On the 21st year for National Breast Cancer Awareness Month, the Komen Foundation is reconfirming its commitment to patient advocacy and finding ways to prevent and cure breast cancer, and is leading the charge by challenging current standards and leading discussions focused on identifying new frontiers in patient care and survivorship.
In the meantime, the Komen Foundation continually empowers patients to take charge of their health and offers the following recommendations:
* Find a doctor you are comfortable talking to and ask questions about your tissue sample - Will it be preserved? Where will it be stored, if at all? How can I access it in the future? * Don’t be afraid to seek a second opinion, including a second opinion about your pathology results. * Carefully read all informed consent documents you are asked to sign before your surgery - know what you are agreeing to. * Educate yourself about current guidelines for care.
For more information and to access updates from the Komen Foundation on these issues, visit the Komen Foundation website or call 1.800 I’M AWARE(R) (1.800.462.9273).
About the Komen Foundation
The Susan G. Komen Breast Cancer Foundation was established in 1982 by Nancy Brinker to honor the memory of her sister, Susan G. Komen, who died from breast cancer at the age of 36. Today, the Foundation is an international organization with a network of more than 75,000 volunteers working through local Affiliates and events like the Komen Race for the Cure(R) to eradicate breast cancer as a life-threatening disease. A global leader in the fight against breast cancer, the Foundation fulfills its mission through support of innovative breast cancer research grants, meritorious awards and educational, scientific and community outreach programs around the world. Through fiscal year 2005, the Komen Foundation, together with its Affiliate Network, corporate partners and generous donors, has invested $630 million in breast cancer research, education, screening and treatment programs.
For questions about breast health or breast cancer, visit the Komen Foundation’s website at http://www.komen.org or call the Komen Foundation’s National Toll-Free Breast Care Helpline at 1-800-I’M AWARE(R) (1-800-462-9273).
Susan G. Komen Breast Cancer Foundation
CONTACT: Amber Weyer, +1-972-855-1682, or aweyer@komen.org ; or EmilyCallahan, +1-972-855-1607, or ecallahan@komen.org , both of Susan G. KomenBreast Cancer Foundation
Web site: http://www.komen.org/
