Posts Tagged ‘metastatic breast cancer’

My Chance to ‘Pay it Forward’

April 22, 2014

photo 4By now most of you know LBBC blogger and volunteer, Caryn Kaplan, with her most recent blog illustrating her thoughts and emotions while attending her very first LBBC Annual Conference for Women Living with Metastatic Breast Cancer  a few years ago. In the years since, Caryn has graciously donated her time, along with many other individuals, to help the conference run smoothly by volunteering for various tasks throughout the conference weekend.  Here she shares why it’s important to her to volunteer for LBBC and what roles she’s looking forward to most at this year’s conference on April 26th and 27th at the Philadelphia Marriott West. 

Looking back, when the email arrived that Living Beyond Breast Cancer needed volunteers to help at the Metastatic Breast Cancer Conference, I quickly hit the reply button and told them I was available…

As I sat on the train taking me into Center City Philadelphia the anticipation was growing inside of me.  Yes, another Women Living with Metastatic Breast Cancer conference.  Of course I knew what to expect since I had attended the previous year.  As the train clamored down the rails and I stared outside at the quickly passing buildings, the excitement of volunteering at the conference was so hard to contain inside of me.  I remembered all of those volunteers that so politely and gently guided us attendees through the conference. I had been volunteering for LBBC at other events but this was different.  I was there to help people with whom I shared a common bond, all of us having been touched by metastatic breast cancer. Yes, I was going to be that gentle and compassionate face on the other side of the table.  The thought of this was so inspiring and empowering to me.  There were several positions that needed to be filled and I really didn’t care what I did because I knew that I was just helping someone and helping LBBC achieve their goal of bringing us all together.  (more…)

I Was Not Just ‘Another Person’ With Metastatic Breast Cancer

April 17, 2014

Caryn KaplanLast week we introduced new blogger but long-time LBBC friend and volunteer, Caryn Kaplan. In her first story she explained that her cancer had spread to her liver and bones and that she was diagnosed with breast cancer for a third time, this time with metastatic disease. Caryn has attended our Annual Conference for Women Living With Metastatic Breast Cancer  for the past few years and here she shares her memories of that very first time…

As I started my drive down Interstate 95 towards downtown Philadelphia, listening to intently to my audio book, I found that my mind had drifted off the story and to a place that has a story of its own.  I was going to attend my first Women Living with Metastatic Breast Cancer Conference held by Living Beyond Breast Cancer.  I read about it on their website and received publications in the mail and to me-it was a dream come true.  Being diagnosed about a year earlier with metastatic breast cancer, I felt I was alone and very isolated.  Yes, I did know others that had breast cancer, gone through treatment and magically (so it seemed) were okay, living their normal lives.  But me, I was scared of the unknown, and how I perceived how my life would change drastically so I was anxious to find out information about my diagnosis and meet others that shared my disease.  My support system was great but they didn’t understand or could they what I was going though.  In the background my audio book continued to play but all I could think about was what the next two days had in store for me.  I had been to plenty of LBBC community meetings before and always left with more knowledge and contentment.  But I knew this was going to be different. I turned off my boo, and basked in my thoughts and anticipations.

As soon as I walked into the hotel I was immediately greeted warmly by LBBC volunteers as they guided me to my Mecca.  I registered, received my name tag (yes, I did have an identity, I was not just another person with metastatic breast cancer) and walked into the main conference room.  Where was I going sit?  Who was I going to sit with?  How am I going to strike up conversation with them?  I’m not a shy person but this was a whole new ballgame for me. I knew that I had a mission, to be able to connect and share with others about this disease we all had in common.  The excitement grew inside me. (more…)

Your Breast Cancer Experience in Six Words

April 10, 2014

Last fall, we started a breast cancer six-word memoir campaign to share your thoughts and experiences with the disease. Beginning this month, we will restart the project for 2014. Read below to learn more and to see our collection of mini-memoirs from 2013.

Kim Boyer's Six-Word Memoir for Oct. 23, 2013

Kim Boyer’s Six-Word Memoir for Oct. 23, 2013

Everyone has a story. For people with breast cancer, that story can be a roller coaster of complex emotions. As an organization with a vision of a world where no one impacted by breast cancer feels uninformed or alone, we at Living Beyond Breast Cancer provide you with many ways to tell your story – first-person stories and videos, profiles, stories found on this blog and most recently, our breast cancer six-word memoirs. (more…)

This Week at LBBC: March 25 – April 1, 2014

March 25, 2014

This Week At LBBC Banner (2)
Welcome to our new blog column, “This Week in LBBC,” a weekly update of local and national events, programs and other initiatives by Living Beyond Breast Cancer.

National Programs and Initiatives

ANNUAL CONFERENCE FOR METASTATIC BREAST CANCER : We’re excited that registration opened for our eighth Annual Conference for Women Living with Metastatic Breast Cancer! Come join us Saturday, April 26 – Sunday, April 27, at the Philadelphia Marriot West in West Conshohocken, Pa. Register for the conference or apply for a travel grant and fee waiver. Visit lbbc.org/metsconference to download a conference brochure.

TRIPLE-NEGATIVE BREAST CANCER WEBINAR SERIES: Learn more about triple-negative breast cancer during our free, two-part webinar series:

  •          Part One: Medical Update: On Thursday, April 17, from noon – 1 p.m. ET, featuring Rita Nanda, MD, who will help you understand today’s standard of care treatments for triple-negative disease.
  •          Part Two: Managing Fears of Recurrence: On Thursday, April 24, from noon – 1 p.m. ET, Julie Larson, LCSW, will discuss triggers of fears of recurrence and teach you strategies that will help you.

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LIVING BEYOND BREAST CANCER HOSTS CONFERENCE

March 21, 2014

Annual-Conference-for-Women-BannerHaverford, PA., Friday, March 14, 2014– Philadelphia-based nonprofit organization Living Beyond Breast Cancer (LBBC) has opened registration for its 8th annual conference for women living with metastatic breast cancer.  The event, Enhancing Your Health and Quality of Life, takes place Saturday, April 26 – Sunday April 27, 2014 at the Philadelphia Marriott West in West Conshohocken, Penn.

Breast cancer is considered metastatic (stage IV) 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)  (more…)

The Search for Common Ground In Advocacy

February 13, 2014

The U.K.-based Pancreatic Cancer Action launched a controversial public service announcement that got the attention of the media and cancer advocates worldwide. LBBC’s Janine E. Guglielmino, MA, director, publications and strategic initiatives, writes about the campaign, and the importance of finding commonality in the cancer advocacy community.

Many of you have already seen the controversial public service announcement “I Wish I Had …” from the U.K.-based Pancreatic Cancer Action. The video PSA opens with a man and a woman, newly diagnosed with pancreatic cancer, wishing they had been diagnosed with testicular or breast cancer instead. Next, scrolling text shows the 5-year overall survival rate for pancreatic cancer, which in the U.S. ranges from 14 percent in stage I to 1 percent in stage IV.

The ad is powerful, but it is also wrongheaded and insensitive. It paints breast cancer as a single disease, and reinforces the pervasive and incorrect belief that breast cancer survival outcomes are universally high. It minimizes the physical and emotional trauma breast and testicular cancers leave in their wake. And it dismisses the tragedy of the approximately 530,000 people worldwide who die each year from these two diseases. (more…)

Listening to the Voices of Those With Metastatic Breast Cancer

January 17, 2014

Catherine-Ormerod 1This week, articles published in the New York Times and The Guardian criticized blogger Lisa Boncheck Adams’ decisions to publicly write and tweet about her experiences with metastatic breast cancer.  Catherine Ormerod, Living Beyond Breast Cancer’s vice president, programs and partnerships, weighs in on this issue. 

This past Sunday former New York Times executive editor Bill Keller wrote an op-ed posing questions about Lisa Boncheck Adams’ public blog about her experiences with metastatic breast cancer. In particular, he questioned the choices she has made as a young wife and mother to extend her life as long as possible through, what Keller termed, “heroic measures”: taking treatments until they stop working and moving on to the next treatment. The treatment that Adams’ has pursued is, in fact, the standard way of treating metastatic disease. (more…)

#GivingTuesday Six-Word Memoirs: Part Three

December 3, 2013

You saw parts one and two. Here’s the third and final part of our #GivingTuesday breast cancer six-word memoir campaign. Support LBBC before midnight Eastern Time (ET) tonight!

20131203_KathiHansen

Here’s our third and final round of breast cancer six-word memoirs for #GivingTuesday. On behalf of everyone at Living Beyond Breast Cancer, we want to thank everyone who submitted a six-word memoir about how we’ve impacted you and your breast cancer experience. Your mini-stories inspire us to continue and expand the work that we do. (more…)

#GivingTuesdays Six-Word Memoir: Part Two

December 3, 2013

This morning, we unveiled part one of our three-part breast cancer six-word memoir campaign for  #GivingTuesday. Here is part two. Don’t forget to double your impact with our #GivingTuesday matching campaign!

20131203_TobyGelman

Like our six-word memoir series during Breast Cancer Awareness Month, the mini-stories you submitted have touched everyone here at Living Beyond Breast Cancer. We’re overjoyed so many of you were willing to write six-words about how our organization impacted you, or how you felt after using our programs and services.  (more…)

#GivingTuesday Six-Word Memoirs: Part One

December 3, 2013

Last week, we collected your six-word memoirs for our #GivingTuesday activities. Today, we’re unveiling them in three parts as you support us on this international day of giving.

We’ve notified you about our website and social media for the past week to let you know about our #GivingTuesday activities. As the match campaign begins, we’re proud to present our six-word memoir campaign for this day of giving. The gallery below contains the first of our three-part series.

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