CPR's Breast Cancer Conference And Public Education Campaign:
"Using Research to Inform Patients of Breast Cancer Surgery Options"
December 14, 2001 - This year, more than 200,000 women in the US will be diagnosed with breast cancer, and three out of four will be eligible for lumpectomy or other breast-conserving surgery. Experts agree that for most early-stage breast cancer (stage 0, 1 or 2), lumpectomy (which removes just the cancer and the breast tissue around it) is just as safe as mastectomy (which removes the entire breast), if the lumpectomy is followed by radiation treatment. However, one out of every two women who experts would consider eligible for lumpectomy will undergo mastectomy instead. Why is that? Women without insurance, women with lower income or education, women living in certain regions of the country, older women, and those with older doctors or using community hospitals are especially likely to undergo mastectomies, even when they are eligible for less radical surgeries.For many years, research has raised questions about whether breast cancer patients are fully informed about their surgical options, since studies have shown that the likelihood of a woman undergoing a mastectomy is highly influenced by her physician's recommendations and by factors that appear to be unrelated to the patient's preferences or diagnosis. However, this issue has received relatively little attention from clinicians or patient advocates.
At a NIH Consensus Conference in 1990, experts agreed that breast-conserving surgery, followed by radiation, was the preferable treatment for most women with early-stage breast cancer. However, most women with early-stage breast cancer have continued to undergo mastectomies instead; as recently as the mid-1990s, the vast majority of breast cancer patients underwent mastectomies in some major medical facilities. Even today, in some regions of the United States, most women eligible for breast-conserving surgery are getting mastectomies, and there are concerns that many women who are undergoing breast-conserving surgery are not getting the radiation that may improve their long-term prognosis.
Goal
Our conference, held on December 14, 2001 at the National Institutes of Health, was successful at bringing together researchers, patients, and healthcare providers to develop strategies to improve patients' access to accurate and objective information, so that women with early-stage breast cancer receive research-based information that fully informs them of their surgical options. We will work together to ensure that patients are informed about research findings regarding the risks and benefits of radiation.The overall goal of this conference and our ongoing public education campaign is to help ensure that patients get the information they need to make the surgical decisions that are best for them.
Participants
Our conference was limited to approximately 50 participants, in order to facilitate everyone's active engagement. Participants included the foremost advocates, policy experts, researchers, and health care professionals in the field, including Sue Ann Thompson, President of the Wisconsin Women's Health Foundation and wife of Secretary of HHS Tommy Thompson; Vivian Pinn, M.D., Director of the Office for Women's Health at the National Institutes of Health (NIH); Wanda Jones, Dr.P.H., Director of the Office on Women's Health at the Public Health Service; Marcy Gross, Senior Advisor on Women's Health for the Agency for Healthcare Research and Quality (AHRQ); Anna Levy, Deputy Director, National Cancer Institute, and Jeffrey Abrams, M.D., National Cancer Institute. Researchers and health care professionals include Steven J. Katz, M.D., M.P.H., University of Michigan Health System; Ann Butler Nattinger, M.D., M.P.H., Medical College of Wisconsin; Larry Solin, M.D., Hospital of the University of Pennsylvania; Cyrus A. Kotwall, M.D., University of North Carolina Chapel Hill, and Jeanne Mandelblatt, M.D., Ph.D., Lombardi Cancer Research Center, Shahla Masood, M.D., editor-in-chief of Breast Journal, and Albert Mulley, M.D. of Massachusetts General Hospital. Other well-respected health professionals and providers also attended, and nationally-respected advocates from several breast cancer and health organizations throughout the country also participated. In addition to developing strategies, we are developing brochures for patients and fact sheets for health professionals, providers, and advocates.Funders
The conference was funded by several agencies of the U.S. Department of Health and Human Services: the Agency for Healthcare Research and Quality, the Office on Women's Health of the Public Health Service, the NIH Office of Research on Women's Health, the Centers for Disease Control and Prevention, the National Cancer Institute, the Maternal and Child Health Bureau of the Health Resources and Service Administration and the Centers for Medicare & Medicaid Services. Funding from Health Dialog supplemented the federal conference grant.Next Steps
The dissemination of information following the conference is an essential part of our effort to ensure that women who have been diagnosed with early-stage breast cancer are fully informed of their surgical options. Based on information and feedback from participants in the conference, we are writing a brochure for cancer patients; fact sheets for physicians; and fact sheets for the media, advocacy organizations, and the general public. We are finalizing these products and will widely disseminate them among professional associations, breast cancer advocacy organizations, and health care providers, and work with the media to disseminate information to the general public. We will work with the National Consortium of Breast Centers and their almost 600 centers throughout the country and with patient advocacy groups to make sure that the information is widely disseminated to patients and providers.Would you like to help?
The conference is over, but there are other ways to get involved in this project. We want all women across the country to be well informed about the surgical options for breast cancer patients, not just the women who are diagnosed with breast cancer. Do you belong to a woman' s organization or health-oriented organization that would like to participate by distributing information through your website or newsletter? CPR will provide the information in a format that is ready to be used. We can provide copies of the brochure, fact sheets, or information about the issue in general.We are also seeking support for our public education campaign, including publishing and disseminating brochures and fact sheets. If you or your organization would like to help, please contact Gianna Tripodi-Bhise at (202) 216-9507 or gb@center4policy.org.
