Archive for the ‘metastatic breast cancer’ Category

Getting On Track – LBBC’s Reimagined Fall Conference

July 30, 2014

emailHeader760x160Our annual fall conference features three tracks because breast cancer is not just one disease. Clifford A. Hudis, MD, chief of the breast medicine service and attending physician at Memorial Sloan Kettering Cancer Center in New York City, wrote this blog post about the reasons for these tracks and how breast cancer treatment became more individualized. A member of LBBC’s medical advisory board, Dr. Hudis will lead our morning plenary session on metastatic breast cancer. 

Hudis_lbbcblogpostGiven LBBC’s recognition that not all breast cancer is the same and not all patients need the same information, it is natural to see that the annual fall conference, Breast Cancer Today: Individual Treatments, Shared Experiences, is organized in tracks that enable participants to most efficiently focus on what they find to be most relevant. 

Not Just One Disease

Starting with oncology pioneer George Beatson’s 1896 report that some, but not all, women with advanced breast cancer responded to treatment that reduces estrogen in the body, it was clear that we confront more than one, uniform disease. The subsequent description of the estrogen receptor by cancer researcher Elwood Vernon Jensen in 1958 simply allowed us to test for what we already knew – that some cancers are more or less likely to respond to hormone therapies.

The more recent description of the human epidermal growth factor receptor–2 (HER2) and the development of effective treatments that target it added another dimension to “binning” breast cancers. With effective hormone and anti-HER2 therapies we can no longer pretend that cancer is cancer is cancer. One size does not fit all, and one disease is not the same as another.  (more…)

LBBC’s Annual Fall Conference is for You!

July 16, 2014

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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!

Second Saturday Breast Cancer Six-Word Memoirs: April 2014

April 12, 2014

Welcome to the launch of Second Saturday Breast Cancer Six-Word Memoirs! Check the new editions below, and learn how you can contribute a micro-memoir of your own.

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Earlier this week, we announced that we were making the breast cancer six-word memoir campaign a monthly feature here on the blog. We proudly present five new six-words: (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…)

Giving Back to LBBC: Amy Lessack’s Story

November 27, 2013

The Tuesday after Thanksgiving will be the second annual #GivingTuesday, a national online initiative and day of giving back to charities, nonprofit organizations and important causes. Amy Lessack wrote this blog post on why she’s giving back to LBBC and why you should, too.

I recently learned about a national online initiative called #GivingTuesday and thought it was such a cool idea. The objective of the day is to have everyone everywhere donate or host charitable activities to benefit an organization of their choice the Tuesday after Thanksgiving.  Well, for me, the answer is easy:  Yes, of course I will “Give on Tuesday” and…my organization of choice is Living Beyond Breast Cancer (LBBC)!

LBBC does amazing things for women who are diagnosed with breast cancer and really for anyone who is impacted by the disease, including family members, friends, caregivers or healthcare providers. What makes LBBC a unique organization to gravitate to is the personal touch given by the staff and the services they offer.  LBBC offers webinars, community meetings and face-to-face conferences, as well as the Breast Cancer Helpline, which is staffed by survivors who lovingly answer calls and help where they can by just listening, offering support and resources – instead of just relying on “Dr. Google.”   (more…)

Breast Cancer Six-Word Memoirs for BCAM 2013 – Week of Oct. 13

October 23, 2013

You’ve submitted them, and we’ve posted them – here’s week three of LBBC’s breast cancer six-word memoirs! Inspired by Smith Magazine’s project, the Six-Word Memoir, we’ve started a campaign to highlight your experience with breast cancer using the six words that best describe your journey (or an aspect of it). This campaign is ongoing throughout Breast Cancer Awareness Month.

Marsha Wheatley's Six-Word Memoir for Oct. 17, 2013.

Marsha Wheatley’s Six-Word Memoir for Oct. 17, 2013.

We are now in week three of our month-long BCAM breast cancer six-word memoir campaign. We thank everyone who has contributed to this project so far — your stories continue to move and inspire us!

(more…)

Introducing My+Story

October 10, 2013

Kevin Gianotto is the associate director of marketing, public relations and corporate partnerships at Living Beyond Breast Cancer.  He’s worked for nonprofit organizations since 2002.

Two weeks ago, I attended a reception at the Dover International Speedway where I had the chance to introduce a number of individuals I met to the work we do at LBBC to connect people to trusted breast cancer information and a community of support.  The conversations I had that evening inevitably led to the opportunity for me to discuss what I am most passionate about here at LBBC –women who have been diagnosed with metastatic breast cancer, many of whom have become close friends, and the educational resources and support services LBBC has available for them.

52792_10151113120997285_1062790530_oMetastatic breast cancer—a form of advanced breast cancer also referred to as stage IV breast cancer—occurs when breast cancer has spread to other parts of the body.  Approximately 159,000 women in the United States are currently living with metastatic breast cancer, and this number is projected to increase to approximately 164,000 by the year 2015.

To raise awareness of Metastatic Breast Cancer Awareness Day on October 13, LBBC has partnered with the MedImmune Specialty Care Division of AstraZeneca to promote the launch of My+Story, an online resource center which highlights the needs of women living with metastatic breast cancer and calls attention to metastatic disease as a key component of October’s National Breast Cancer Awareness Month. Metastatic Breast Cancer Awareness Day was officially recognized by the U.S. Congress in 2009, following a grassroots awareness effort led by members of the Metastatic Breast Cancer Network (MBCN).

The My+Story site houses tools and information tailored for women living with advanced disease. The website is designed to connect patients with the information they need, and links to patient support groups that have specific programs for metastatic breast cancer patients—like LBBC and MBCN.

Visitors can learn about metastatic breast cancer and treatment options, find tips on how to take care of their bodies, and celebrate their life experiences by creating a hard copy photobook of personal stories that may be shared with loved ones. Women with metastatic breast cancer and those who are directly inspired by them can also create a personalized flower badge that can be shared at MyMBCStory.com and with their personal social media community to help raise awareness. In addition, supporters of women with metastatic breast cancer can visit MyMBCStory.com/awareness to download free educational materials and inspire members of their community to help raise awareness of the disease.

Other great interactive features (ones my social media team here at LBBC love) allow visitors to share their favorite images and information from the site with others via Facebook, Twitter and Pinterest. And, throughout the month, AstraZeneca will make a contribution to LBBC and MBCN each time visitors share content (up to a total of $28,000) in acknowledgment of the 28 years since National Breast Cancer Awareness Month was established and of the ongoing effort to bring metastatic breast cancer to the forefront. If you’re inclined, be sure to check out the site and let us know what you think.

Our New Vision and Mission

August 20, 2013

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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

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May 9, 2013

???????????????????????????????LBBC would like to introduce Lucille Kasprack, a woman living with metastatic breast cancer who hasn’t allowed it to get in the way of fulfilling one of her most important dreams of being a professional artist! Here she shares her inspirational story about how she turned her diagnosis into a positive experience that ultimately changed her life in more ways than one…

Wow! If someone had told me 10 years ago that in May 2013 I would be exhibiting my artwork in a gallery in New York City I would have thought they were dreaming or a little bit crazy. But that is exactly what has happened to me after a long struggle with breast cancer. My journey started in 2003 with a diagnosis of Stage 1 breast cancer and we all know how frightening it is to receive that news. I decided I was going to tackle this head on; with my husband being my support, my art becoming my refuge, and God becoming my strength. Once surgery and radiation was over, little by little I felt like my old self again except for one difference. My approach to life was changed completely; nothing would be taken for granted ever again. Now my husband and family and my art became much more important to me. I set new goals for myself: appreciate and see my family more; and work hard at my art to become a better painter. And for the next 5 years that is what I did. We had more family get togethers and I took a lot of art classes and workshops and worked daily on my paintings.

In 2008, at my 5 year breast cancer check-up, an MRI and CT scan showed a spot under my left arm and 2 in my chest. A biopsy confirmed Stage 4 metastatic cancer. I now had to face the fact I will never be free of this cancer and I will have to reset new goals for myself. Those goals were to have more fun times with friends and family, and to not just work at painting but to work to become a professional artist, and to place my life in God’s hands. I started entering my paintings in juried art shows and exhibits and to my surprise they were not only accepted but also won prizes.

In 2011, I had to have thoracic surgery because the cancer had spread to my pleura. However, after chemo treatments and subsequent hospitalizations, my last PET scans have remained stable.

Then came 2012 and that “Wow” happened.  In the Spring I was contacted by the Agora Gallery in NYC stating that they saw my work on my website and were very impressed and requested that I submit a portfolio of my work for their review. At first, I didn’t believe it and then in time I realized what a great opportunity this was and I sent in my portfolio. A few weeks later I was informed that they would like to include my work in a future exhibit. I definitely said yes!  It turned out to be a lot of work but the end result is that my work will be on display in NYC from May 11 -31 with an artist’s reception on May 16, 2013. What an amazing journey! Never give up! I reached my goal and I am now a professional artist. I also received additional blessings. My fourth grandchild, Ashley, was born on November 13, 2012 and I continue to have stable PET scans!

Lucille is a 10 year breast cancer survivor and lives in New Jersey with her husband. She has 2 children and 4 grandchildren. Her husband is a retired school administrator and she is a retired  teacher but she continues to work daily on painting and drawing. She loves to experiment with different materials to keep it new and interesting. You can view her artwork on her website at http://lucillesartgallery.sharepoint.com!


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