Archive for the ‘quality of life’ Category

It’s About You: Kate Garza’s Story

August 26, 2014

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KateGarza2 for 5 28Kate Garza is back with a new blog post for our fall conference blogging series, It’s About You. The yoga instructor, writer, wife and mother of three discusses the “breast cancer journey” concept, while discussing her own and her anticipation of Breast Cancer Today: Individual Treatments, Shared Experiences.

Everyone calls it a journey – the breast cancer journey. And if I weren’t so sick of that term, I would use it, too. It is descriptive to a point, and it allows other people to remember that you are not living the life you had in mind anymore. But this so-called “journey” is really more the life equivalent of being kidnapped, thrown into the trunk of a car and driven in the dark to an unknown location. That’s the image that flares in my mind anyway, when I hear “journey with breast cancer,” a junket with only sketchy clues about where you may end up. 

I was diagnosed with stage II invasive breast cancer at age 53, almost 2 years ago now, when my kids were 15, 16 and 17 years old. Life would have been complex enough with three kids moving up and out, but throw breast cancer on top of that project and I had more moving parts than I could track with sophisticated software. 

I had a fairly garden variety diagnosis of estrogen receptor-positive/HER2-negative breast cancer. I followed the standard treatment with lumpectomy, 8 cycles of chemo and 30 doses of radiation therapy. It was the most difficult health crisis I had run across in my life and treatment left me exhausted and brain-fried, but grateful that I traversed without complication. I finished a week before number one graduated from high school. After a month off for R&R, I began taking an aromatase inhibitor (AI), letrozole. 

After 3 months of difficult joint pain side effects, I switched to anastrozole. Again, the difficulties with pain and mobility arrived, but I stayed with the second medicine for 6 months until, completely frustrated and full of pain with every movement, I gave up. I was done. I couldn’t see the point of prolonging a life that felt this bad. Did I mention that I am a yoga instructor? I couldn’t move. Not even enough to practice the yoga that might help me feel better. And working, in my chosen profession, was out of the question. So by the time my second child graduated this past June, I was 2 months into my medication vacation and starting to feel much better. I could move again. Pain with walking and the sleepless nights were beginning to fade away.  (more…)

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!

Do You Have Any Idea How Beautiful You Are?

May 17, 2014

Musser_Barbara_2014Breast cancer can drum up many complex emotions and thoughts for those who are newly diagnosed, especially around body image. Barbara Musser, CEO and founder of Sexy After Cancer, writes about the importance of defining your own beauty and invites you to learn how to do this by joining us for our free webinar at noon ET/11 a.m. CT on Tuesday, May 20, held in partnership with Susan G. Komen of Greater Kansas City

Dealing with a breast cancer diagnosis and treatment is a big challenge that goes on for quite a while. On top of that, it’s easy to feel like less of a woman, especially with altered or removed breasts, instant menopause resulting from chemo or hormonal therapies and other physical changes that can happen.  There’s not a lot of conversation about our body image, self-esteem and self-love and our intimate and sexual lives. And yet these are the subjects that have the most to do with the quality of our lives.

It’s the elephant in the room that no one mentions. Partly it’s because these aren’t easy topics to broach and partly because we don’t know to ask about them if we don’t know what to expect. You may have experienced this spiral. (more…)

Breast Cancer Awareness Month Recommended Reading, Part III: “The Emperor of All Maladies”

October 31, 2013

LBBC’s writer and web content coordinator Josh Fernandez concludes our three-part book review series for Breast Cancer Awareness Month (BCAM) with a write-up on “The Emperor of All Maladies: A Biography of Cancer.” The Pulitzer Prize-winning book was written by Dr. Siddartha Mukherjee, who spoke at our 2013 Annual Fall Conference: News You Can Use. 

The Emperor of All Maladies: A Biography of Cancer (Written by Siddartha Mukherjee, MD, PhD, published by Scribner, 2010)

After having to read Edward Jenner’s “Vaccination Against Smallpox” during my sophomore year of college, I thought I would never again pick up, let alone enjoy, another nonfiction science book. Despite the importance of that text, and my nerdy ways — I enjoy reading sociological and nutrition science text books, balancing chemical equations for fun and I recite “Battlestar Galactica” and “Buffy the Vampire Slayer” episodes by heart —nonfiction science books had been ruined for me.

Nearly 6 years later, I picked up a copy of Dr. Siddartha Mukherjee’s Pulitizer Prize-winning book, “The Emperor of All Maladies: A Biography of Cancer.” About 40 pages in, I was captivated by Dr. Mukherjee’s prose and storytelling. This renewed my appreciation for nonfiction science narratives. (more…)

Breast Cancer Awareness Month Recommended Reading, Part I: “Butterfly Wishes on Wings” and “It’s Always Something”

October 29, 2013

As Breast Cancer Awareness Month (BCAM) 2013 comes to a close, our dedicated staff, volunteers and contributors want to share recommended reading that will inspire you, make you laugh and, above all, help you realize you are not alone. First up, regular blog contributor Ronda Walker Weaver and LBBC board member and long-time volunteer, Margaret Zuccotti, review books that have personally impacted them during their breast cancer journeys. Margaret reviews “Butterfly Kisses and Wishes on Wings: When someone you love has cancer…a hopeful, helpful book for kids,” written by Ellen McVicker and illustrated by Nanci Hersh, and Ronda writes about the late comedienne and Saturday Night Live performer Gilda Radner’s “It’s Always Something.”

Butterfly Kisses and Wishes on Wings: When someone you love has cancer…a hopeful, helpful book for kids (Written by Ellen McVicker and illustrated by Nanci Hersh, self-published 2008)

“The other day my mom went to the doctor. She didn’t even look sick, but she said she had to go anyway.” And so opens the story “Butterfly Kisses and Wishes on Wings-When someone you love has cancer…a hopeful, helpful book for kids” written by Ellen McVicker and illustrated by Nanci Hersh.

(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

Reset

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!

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

May 3, 2013

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.


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