Archive for the ‘Metastatic Breast Cancer Network’ Category
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Living Beyond Breast Cancer (LBBC) has opened registration for its 7th annual conference for women living with metastatic breast cancer. The event, Enhancing Your Health and Quality of Life, takes place Saturday, April 13 – Sunday April 14, 2013 at the Loews Philadelphia Hotel.
Breast cancer is considered metastatic when it spreads from the breast to another part of the body such as the lungs, bones, liver or brain. There are approximately 152,000 women in the United States currently living with metastatic breast cancer and estimates indicate that advances in treatment and care will push that number to 164,000 by the year 2015.1
Previous conferences have attracted attendees from across the country by featuring leading national health care and wellness experts who present specialized plenary sessions and over a dozen workshops designed to address the complex medical, social and emotional situations many women experience when diagnosed with metastatic breast cancer. As in past years, workshops for family members and caregivers will also be offered.
Conference attendees will have the opportunity to ask questions about current research and clinical trials, treatment options and quality-of-life concerns. Additionally, attendees are given the chance to meet, connect and network with hundreds of women facing similar challenges expanding their peer support network. Travel grants and fee waivers, provided by Susan G. Komen for the Cure, are available for those who qualify.
LBBC’s highly specialized programming for women living with stage IV breast cancer stems from the nonprofit’s 2006 release of Silent Voices: Women with Advanced (Metastatic) Breast Cancer Share Their Needs and Preferences for Information, Support and Practical Resources. In this extensive report, LBBC consultants Musa Mayer, MS, MFA, and Susan E. Grober, PhD, reported their findings from a survey of 618 women living with stage IV disease. The survey focused in great detail on their use of and preferences for services in three domains: information, support and resources. The data revealed insights on the information, support and practical needs of women living with metastatic breast cancer so LBBC could address the gaps in tailored resources for this population.
To do this, LBBC created not only their annual conference but a variety of other resources. Since the report’s release, a special subsection of lbbc.org just for women with metastatic disease has been significantly expanded, free webinars and regional community meetings feature topics of appeal specifically to the metastatic breast cancer community and the LBBC Guides to Understanding Breast Cancer: Metastatic Series includes specialty titles: Treatment Options for Today and Tomorrow, Managing Stress and Anxiety, Symptoms and Treatment Side Effects, Understanding Palliative Care and LBBC’s newest publication, Guide for the Newly Diagnosed.
The conference would not be possible without the support of the event’s presenting travel grant and fee waiver sponsor Susan G Komen for the Cure®. Other event supporters include Title Sponsor Genentech.
1 Data on File. 1006812. AstraZeneca Pharmaceuticals LP. Wilmington, DE.
LBBC is currently seeking women living with metastatic breast cancer or their caregivers who would be interested in sharing their stories. Leading up the conference, we’ll feature these first-person accounts here on the LBBC blog and promote them via lbbc.org, Facebook and Twitter. If you would like to tell others your story, or have any questions, please contact LBBC’s Kevin Gianotto via email at firstname.lastname@example.org.
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For Immediate Release:
GUIDE FOR THE NEWLY DIAGNOSED JOINS GROWING RESOURCE LIBRARY FOR WOMEN WITH STAGE IV DISEASE
January 8, 2013; Philadelphia, PA | Living Beyond Breast Cancer (LBBC) and the Metastatic Breast Cancer Network (MBCN) have announced the release of a free publication to help address the needs women have in the first months following a diagnosis of metastatic (stage IV) breast cancer. The Metastatic Breast Cancer Series: Guide for the Newly Diagnosed is the newest title in LBBC’s growing library of Guides to Understanding Breast Cancer, free publications designed specifically to empower women with the information needed to make the best and most informed decisions for themselves and their families when facing a breast cancer diagnosis and considering options for treatment and disease management.
As someone living with metastatic breast cancer, Shirley Mertz knows firsthand of the physical and emotional impact of a stage IV diagnosis. Mertz, the president of MBCN, reflected on her personal experience and commented, “Most new metastatic breast cancer patients feel overwhelmed with anxiety and a loss of control over their lives. This new publication will remind women that knowledge is power, help them find courage to educate themselves about metastatic breast cancer and hopefully open the door to better treatment selection and outcomes.”
The Metastatic Breast Cancer Series: Guide for the Newly Diagnosed is designed to help women navigate the first few days, weeks and months after a first-time, stage IV breast cancer diagnosis or metastatic recurrence. The guide focuses on medical, emotional and practical concerns with the goal of helping readers to understand the biology of metastatic disease, form questions they may need or want to ask and provide available resources that improve emotional and physical wellness.
“Living Beyond Breast Cancer and the Metastatic Breast Cancer Network worked together to create this resource to help women become their best advocates,” said Jean A. Sachs, MSS, MLSP, LBBC’s chief executive officer. “This guide will help women understand the tests and treatments they may undergo and address the impact that metastatic breast cancer can have on emotional well-being.”
Nearly 150,000 people—women and men—are living with metastatic breast cancer in the United States and while a diagnosis of this type is life-changing, advances in research and treatment have made it possible for many to live longer, more fulfilling lives. LBBC and MBCN worked diligently to ensure that this guide was available to help bridge the gap between initial diagnosis and life beyond.
“I wish something like this had been available to me when I was first diagnosed, for my benefit and the benefit of family and friends who had—and still have—so many questions,” says Cindy Colangelo, a member of the consumer advisory committee that reviewed the guide’s content for accuracy. “Hopefully, this guide will help people acknowledge the elephant in the room that no one wants to discuss. Our goal is to provide a greater understanding of metastatic breast cancer and help affected women and families move forward by answering questions, providing information and giving hope.”
In addition to Colangelo and other women living with metastatic breast cancer, the guide was also reviewed by LBBC and MBCN staff, health care professionals, medical and surgical oncologists, social workers, nurses, researchers, and a palliative care specialist, led by William Gradishar, MD, of the Feinberg School of Medicine at Northwestern University.
“As a group facilitator, I’m excited to present this guide to patients who seek wisdom, guidance and support,” says Marie Lavigne, LCSW, OSW-CAs, an oncology social worker and a member of the medical review team. “As with all of LBBC and MBCN’s offerings, it provides a cornerstone to the essential needs of women diagnosed with metastatic breast cancer – clear, honest information, hope and inspiration when they need it the most.”
The Metastatic Breast Cancer Series: Guide for the Newly Diagnosed is divided into six sections written in clear and easy-to-understand language. Individual copies of the guide are free and can be ordered online at lbbc.org or by calling (610) 645-4567. Larger quantities may also be ordered for a small shipping and handling fee. Additional resources can be found through LBBC’s Understanding Guides: Metastatic Breast Cancer Series and through MBCN. LBBC’s titles are: Treatment Options for Today and Tomorrow, Managing Stress and Anxiety, Symptoms and Treatment Side Effects and Understanding Palliative Care. MBCN’s titles are: Diagnosis: Metastatic Breast Cancer…What does it mean for you? and Get the Facts.
About Living Beyond Breast Cancer
For over 20 years, Living Beyond Breast Cancer has been providing educational resources and support services to women of all ages who have been diagnosed with breast cancer. LBBC helps improve the quality of life for these women by empowering them with the information they need to make the best and most informed decisions for themselves and their families. National conferences, monthly teleconferences, regional community meetings, the Guides to Understanding Breast Cancer and a toll-free Survivors’ Helpline are just a few examples of the services that are provided, always at little or no cost.
If someone you know has recently been diagnosed, is in treatment, recovery, years beyond their diagnosis or living with metastatic breast cancer, LBBC can help. For more information, visit lbbc.org, call (610) 645-4567 or download a free copy of Empower, LBBC’s general information brochure.
About Metastatic Breast Cancer Network
The Metastatic Breast Cancer Network, a national, patient-led organization, works to raise awareness of metastatic breast cancer within the breast cancer community and public. MBCN encourages women and men living with the disease to raise their voices to demand support, resources and more research for metastatic disease.
MBCN provides education and information to metastatic people and their caregivers. Visit mbcn.org or call (888) 500-0370 to access education, support and advocacy resources.
Tags:Learning from others, Living Beyond Breast Cancer
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