Hear My Voice: Dealing With the ‘What Ifs’ Before and After ‘I Do’

LBBC blog pic_AyannaAyanna Phillips writes about how she and her husband overcame the what-ifs and lived their lives together after her diagnosis with metastatic breast cancer.

 

“To join with you and to share with you, all that is to come…”

While going over our wedding vows, this was the part that was hardest for me. What a loaded statement given our circumstances. There were moments while I was planning our wedding that I was consumed with joy knowing that I had found my soul mate. I never thought I would love so deeply, trust so willingly and laugh so hard. There were also extremely difficult moments when I just about drove myself insane. What if the pain of my most current metastasis to my bones prevented me from walking gracefully down the aisle as I had dreamed? (I had acquired quite a limp at the start of the summer because of the disease in my hip.) And the one that kept me sleepless in bed a few nights after slaving over DIY projects and the perfect shade of pink…What if I get sick and we have to cancel the wedding?

Trying to balance my diagnosis and my thoughts on forever didn’t just start with our wedding. I was diagnosed just one month after our engagement. While most women are basking in the glow of their recent engagement and diving head first into the sea of planning, I was forced to put all thoughts of a wedding on the back burner and focus on my health. It felt like all the things we planned to do might never come to be. The what-ifs that come with a metastatic breast cancer diagnosis can rival the worst day in treatment sometimes. Continue reading

Hear My Voice: Remembering Us in October

SheilaJohnsonGloverSheila Johnson-Glover blogs about the importance of discussing breast cancer in the African-American community and recognizing people who are living with metastatic breast cancer.

When people hear I have stage IV breast cancer, I wonder if they automatically think I’m going to die. No one has ever said that to me, but I still wonder this sometimes. I am a stage IV breast cancer survivor, and I’m proud to say that, because after 5 years, I’m still striving and thriving. I want people to not immediately think of metastatic disease as a death sentence. I want people to understand I still fight just as hard as people with stage I, II or III breast cancer. And as long as researchers continue to develop new medicines, we still have HOPE.

I was diagnosed with HER2-positive breast cancer in September 2009 while I was still on active duty in the military. When my doctor told me I had stage IV cancer, I asked, “How many stages are there?” She said, “Sheila, you have the top one.” Is stage IV breast cancer really a death sentence? My answer would be NO.

Still, when I found out I had metastatic breast cancer, my first thought was to ask God, “Am I going to die?” As the years passed, there have been so many different targeted therapies that have been approved for treating HER2-positive metastatic breast cancer. The advances in medicine have had a huge impact on my survivorship: I’m currently on Herceptin and Faslodex, and these two medicines have been working amazingly for me. My mother died of stage IV breast cancer in August 2004, and I wish I would have known more about the disease then. I wish she had had the medicines that I’ve been on these past couple of years – maybe she would have lived longer.

I’ve met so many amazing women with metastatic breast cancer and their journeys are truly amazing, as amazing as anyone diagnosed with this disease. However, as an African-American stage IV breast cancer survivor, I haven’t met many other African-American women with this diagnosis. When my mother faced this disease, cancer was not talked about too much in our community. It goes to show that it’s a subject that needs to be addressed and discussed in the African-American community. For African-American women, our mortality rate from breast cancer is much higher than it is for any other races. We need to talk about it. Continue reading

LBBC’s Annual Fall Conference is for You!

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LBBC’s Annual Fall Conference, Breast Cancer Today: Individual Treatments, Shared Experiences, has a new look and feel. Catherine Ormerod, VP of Programs and Partnerships shares her highlights for the conference, taking place on Saturday, September 27, 2014 Philadelphia, PA.

Catherine-Ormerod 1Breast cancer research and treatments are constantly changing. It can be difficult to stay current with and understand the impact of these changes on you and your life. That’s why we have adapted this conference to connect you to trusted specific information. Consulting with some of the nation’s leading health specialists, this year’s conference will offer tracks to help you access the specific information that you’re seeking.

At the Breast Cancer Today: Individual Treatments, Shared Experiences conference you will get the unique medical information you seek for your specific type of breast cancer, while connecting you to others in a supportive environment. Our tracks are:

  • Triple-negative: presented in partnership with Triple Negative Breast Cancer Foundation
  • Hormone receptor-positive or HER2-positive
  • Metastatic

You can choose to follow a track or attend individual sessions based on your diagnosis or concerns. Our sessions will include information about the latest in breast cancer news, treatments and care and wellness. They will be presented by renowned breast cancer experts such as Virginia Borges, MD, MMSc; Clifford A. Hudis, MD; Rita Nanda, MD and Marisa C. Weiss. Topics will range from targeted therapies, metastatic breast cancer clinical trials, managing the side effects of chemotherapy and more, plus an engaging closing plenary, Thriving! A Discussion on Living Well – Body, Mind and Soul.

Attending a conference is a great way to not only get the latest information, but to connect with others and build a community of support. We often hear how long lasting friendships were created at LBBC conferences. I encourage you to take advantage of the many ways to share your experience – there will be breaks throughout the day, a special luncheon, closing reception and meetup groups organized by shared interests.

Registration for the conference is $50 per person but if you register before September 5th you will receive our early-bird discounted rate of $40 per person. We offer a limited number of travel grants and fee waivers on a first come, first served basis. Special thanks to Triple Negative Breast Cancer Foundation’s for its support of travel grants to women diagnosed with triple-negative disease.

Visit lbbc.org/fallconference to register for the conference, apply for a fee waiver or travel grant and to learn more about our speakers and conference sessions.

I hope you can join us in Philadelphia this September!

Catherine Ormerod
VP, Programs and Partnerships, Living Beyond Breast Cancer
cormerod@lbbc.org
P.S. – Follow #LBBCconf on Facebook, Twitter and Instagram for conference updates, staff picks on where to eat in our hometown of Philadelphia, what to see and much more!

Our New Vision and Mission

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This morning, Living Beyond Breast Cancer’s CEO Jean Sachs released the following message to our friends and supporters:

Dear Friends:

All of us at Living Beyond Breast Cancer are excited to share our new vision and mission statements with you:

Our new vision

A world where no one impacted by breast cancer feels uninformed or alone.

Our new mission

To connect people with trusted breast cancer information and a community of support.

These new statements were developed with the help of over 1,200 of you who responded to a survey we sent out earlier this year. Your input was used in a day-long retreat with members of the board of directors and staff. We learned what LBBC services are valued most and why so many have come to depend on our educational programs and services that allow for connection to others diagnosed with breast cancer.

For me, these new statements say with clarity what we strive to do every day and what we hope to achieve over time. Yesterday, I spoke with a long-time friend who had just been diagnosed with breast cancer.  She was overwhelmed, scared and shocked. Our conversation and the resources I was able to put in her hands grounded her and provided her with enough comfort and confidence to take the next step.

This is what LBBC does every day, and it is exactly what the new vision and mission statements express.

I hope you share my enthusiasm and, as always, if you have comments I would love to hear from you.

Warmly,

Jean 

Jean A. Sachs, MSS, MLSP

Chief Executive Officer

LBBC

Give LBBC Your Feedback About Peggy Orenstein’s New York Times Article, “Our Feel-Good War on Cancer”

2012JeanSachsHeadshotVer2WebBy Jean A. Sachs, MSS, MLSP, Living Beyond Breast Cancer’s chief executive officer 

Journalist Peggy Orenstein ignited a debate when she explored the limits of mammography screening and the dangers of overtreatment for breast cancer in her New York Times Magazine article, “Our Feel-Good War on Cancer” (April 25, 2013).

For many in the breast cancer community, Ms. Orenstein’s observations come as no surprise. We know survival rates for women with metastatic disease have not changed, despite the widespread adoption of breast cancer screening. That women with ductal carcinoma in situ, or DCIS, often receive the same treatments as those with invasive disease—along with the related side effects and emotional distress. That more and more women choose prophylactic mastectomy after a diagnosis of DCIS or early-stage disease. And that our sisters with stage IV breast cancer remain silenced, isolated and underserved.

Still, the article introduced thousands of people to the realities of breast cancer today. As we talked about it at the LBBC office, we had many questions. How did this piece impact you and your loved ones? We want to know:

  • What is your perspective?
  • What questions does this article prompt for you?
  • What are your concerns for your health or well-being, based on what you learned?
  • Which issues deserve more discussion?

Based on your feedback, Living Beyond Breast Cancer will design a program to help further discussion. Please post your comments below, and our staff will review them.

YOGA ON THE STEPS: WASHINGTON, DC REGISTRATION NOW OPEN

 

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Registration is now open for Yoga on the Steps: Washington DC, the signature education and fundraising event for Haverford, PA-based nonprofit Living Beyond Breast Cancer.  The event is scheduled to take place rain or shine beginning at 5:30 p.m. Thursday, June 13 on the northeast quadrant of The Washington Monument.  The highlight of the event is a one-hour yoga class for all ages and skill levels designed and led by Yoga Alliance certified instructor and founder of Yoga Unites® Jennifer Schelter, MFA with Kirtan accompaniment by Yvette Pecoraro and other local area musicians. After the class, participants can enjoy refreshments while visiting a Healthy Living Expo where event sponsors, local area businesses, yoga studios and nonprofit organizations will feature products and services promoting health and wellness.

“While Yoga on the Steps is similar to other nonprofit grassroots fundraisers it really is a one-of-kind event,” explains Jenna Jackson, LBBC’s special events manager.  “People are asked to register as a team captain or participant at yogaonthesteps.org and then fundraise for LBBC by asking family, friends and colleagues for donations. But instead of using a walk or run as our event’s centerpiece, we feature a yoga class.  Jennifer has designed the class so that anyone, regardless of skill level or body type can participate. Yoga on the Steps is a unique and powerful education program in its promotion of yoga as an important part of a person’s overall wellness plan.” t is scheduled to take place rain or shine beginning at 5:30 p.m. Thursday, June 13 on the northeast quadrant of The Washington Monument.  The highlight of the event is a one-hour yoga class for all ages and skill levels designed and led by Yoga Alliance certified instructor and founder of Yoga Unites® Jennifer Schelter, MFA with Kirtan accompaniment by Yvette Pecoraro and other local area musicians. After the class, participants can enjoy refreshments while visiting a Healthy Living Expo where event sponsors, local area businesses, yoga studios and nonprofit organizations will feature products and services promoting health and wellness.

What has grown into LBBC’s signature education and fundraising event began after Schelter’s friend and student, Courtney Kapp, was diagnosed with breast cancer.  Kapp wanted to use her home as a place where women with the disease could form a support network through the practice of yoga. She asked Jennifer to teach the class and also introduced her to LBBC’s executive director (now chief executive officer) Jean Sachs, MSS, MLSP. Together, the three women founded Yoga on the Steps.

“Now,” says Sachs, “thousands of people, most with no formal training, annually attend Yoga on the Steps in different cities to raise awareness of LBBC’s resources, stand in solidarity with women diagnosed with breast cancer and honor the memories of those who are no longer with us.”

Studies continue to indicate a correlation between yoga’s stretching exercises, controlled breathing and relaxation techniques with stress reduction, lower blood pressure and improved heart function. “More and more studies we’ve been seeing, especially over the last few years, really confirm the relevance of Yoga on the Steps,” states Sachs.

 

A study conducted by UCLA researchers suggests that yoga can help women overcome post-treatment fatigue which is estimated to affect as many as one-third of women currently in breast cancer treatment. The research, which was published December 16, 2011 in the journal Cancer, discovered that after three-months-worth of twice-weekly yoga classes, “a group of breast cancer survivors in California reported significantly diminished fatigue and increased vigor,” Andrew M. Seaman of Reuters Health said. Cancer, Volume 118, Issue 15

In addition, at the 34th Annual San Antonio Breast Cancer Symposium held in 2011, a study presented findings that women with metastatic breast cancer might benefit from the practice of yoga, as well. A small randomized trial was collaboratively conducted by yogis and physicians, including S.K. Gopinath, MD, from the Department of Surgical, Medical and Radiation Oncology at the HCG-BIO Super Specialty Center in Bangalore, Karnataka, India. The researchers found data that suggest the practice of yoga might reduce psychological distress and modulate abnormal cortisol levels as well as immune responses in patients with stage-IV disease. Medscape News Today

In 2011, LBBC began the implementation of a national Yoga on the Steps expansion initiative developed by the organization’s Board of Directors and senior staff as part of LBBC’s 2011-2015 strategic plan.  “Yoga on the Steps is a low-cost, high-return way to introduce LBBC resources to communities that may not know of their availability,” explains Sachs.  “We’ve established annual events in Philadelphia, Washington, DC and Denver with Kansas City, Missouri recently named as our fourth Yoga on the Steps host city.”

“The increasing popularity of yoga is a big factor in the growing success of the event,” she continues. “But more than that, it’s LBBC’s reputation of sound fiscal management and the trust our supporters have in us that energizes Yoga on the Steps participants to fundraise for LBBC at the grassroots level. We maintain the lowest overhead possible for the event ensuring our resources are always available to anyone in need.”

LBBC’s most recent annual report, released in July of 2011, shows that 86 cents of every donated dollar is used to fund services. For eight consecutive years LBBC has been awarded a four-star rating by Charity Navigator, the  country’s leading organization that evaluates American nonprofits, signifying it exceeds industry standards and outperforms most other charities within its cause. LBBC 2011 Annual Report

Businesses wanting to learn more about national and local sponsorship opportunities and benefits are asked to contact LBBC’s associate director of marketing and corporate relations Kevin Gianotto, at kevin@lbbc.org. General Yoga on the Steps and Healthy Living Expo questions should be directed to Jackson by emailing jenna@lbbc.org. 

About

LBBC provides services designed to help improve quality of life for women who are newly diagnosed, in treatment, recovery, years beyond their diagnosis or living with metastatic breast cancer as well as resources for family, friends and caregivers.  National conferences, monthly teleconferences, regional community meetings, the Guides to Understanding Breast Cancer and a toll-free Survivors’ Helpline are examples of the services that are provided to help them make informed decisions for themselves and their families. 

If you are or someone you know is living with a history of breast cancer, regardless of stage of diagnosis, age, race, religion, sexual orientation or ability to pay, LBBC can help. For more information, visit lbbc.org to download a free copy of Empower, LBBC’s general information brochure or call (610) 645-4567.

Living Beyond Breast Cancer and Metastatic Breast Cancer Network Release New Publication

For Immediate Release:

GUIDE FOR THE NEWLY DIAGNOSED JOINS GROWING RESOURCE LIBRARY FOR WOMEN WITH STAGE IV DISEASE

MBCS: Newly Diagnosed

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.