Posts Tagged ‘metastatic breast cancer’

Li-Fra-What?

August 5, 2014

IMG_2502LBBC guest blogger Kate Crawford’s family was no stranger to cancer of all types, but after she was diagnosed at the age of 28 with HER2 + metastatic breast cancer the family started to wonder if genetics were to blame and urged her to undergo genetic testing. Today she shares her story on making the decision to have genetic testing and how that affected her and her family, including her young children. 

I was 28. I had no family history of breast cancer, but had a family history of cancer in general. My mother was diagnosed with thyroid cancer at 27, my grandmother died as a result of an incurable brain tumor and my grandfather had pancreatic cancer. One thing everyone pondered when I was diagnosed was: why? Why would an overall healthy young woman present with metastatic breast cancer? It is an extremely personal decision to have genetic testing. More than half of gene mutations are hereditary which means a diagnosis of an abnormality may mean your mother, sister, niece, cousin or your child could also be at risk.
I was worried about my children and decided to meet with the oncology genetic counselor in early 2013. It was one of the most informative meetings I had concerning my diagnosis. She explained to me how genetics play a role in cancer. Genes are fragments inside of cells, which are in chromosomes, and made of DNA. DNA contains the instructions for building proteins, which controls the how the cells make up your body. If there is a mistake in one of your genes, those cells will not grow and function properly which can lead to genetic abnormalities, like being more prone to develop certain cancers. She suggested that I be tested for the popular BRCA 1 & 2 gene mutations. A simple blood test and a little bit of waiting revealed that I was negative for a BRCA abnormality. “I would like to have you tested for one more thing.” she quietly stated, “Li-Fraumeni Syndrome”. “Li-Fra-what?” I asked. (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…)

It’s About You: Lu Ann Cahn’s Story

July 23, 2014

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  Cahn_photo2014We would like to introduce you to our blogging series, “It’s About You.” In addition to telling you their personal story, our bloggers in this series talk about their experience with past LBBC programs and/or their anticipation for the upcoming fall conference, Breast Cancer Today: Individual Treatments, Shared Experiences. Today, NBC10 reporter Lu Ann Cahn kicks off the series by sharing her breast cancer journey and the importance of connecting with individuals who share your experiences.

I was talking to a woman who just got through her second year of survivorship. We’d made a lunch date to talk about work, business opportunities.

I’d almost forgotten she’d had breast cancer until she mentioned she was dealing with horrendous hot flashes.

“The tamoxifen is making me crazy” she said.

“How are you feeling otherwise?” I asked

” Oh fine. I just want to forget about IT and move on.”

The IT she didn’t want to dwell on was Breast Cancer…and yet we spent the last twenty minutes we had together during our meeting, sharing our experiences, listening to each other.

I wished we’d started talking about it sooner. As much as she wanted to “forget”, I could tell it was a relief for her to talk to someone who has been there; someone who you don’t have to explain too much to, so much is already understood.

Her emotions were close to the surface; which is probably why she said she wanted to “forget about it”. Tears welled up in her eyes as she talked about how terrifying it’s been, the diagnosis, newly remarried, with a teen son.

I know . I remember.

It has been 23 years since I was diagnosed with an aggressive breast cancer. My daughter was four years old. The year before breast cancer, I was hospitalized for 5 months. I had to have my colon removed because of severe ulcerative colitis. I was just recovering and feeling better when I started to feel a vague mass in my right breast. (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!

My Metastatic Breast Cancer Story

May 23, 2014

CarynPhotoLBBC guest blogger and regular volunteer, Caryn Kaplan was recently featured on CBS Talk Philly to discuss her journey with metastatic breast cancer, along with another LBBC friend and woman living with metastatic disease, Jewel. Here Caryn shares her experience doing the segment and why it was important to her to not only share her personal story but share about MyMBCstory.com which has helped her and continues to help her throughout her day to day life by providing information and tools about metastatic breast cancer…

Tuesday had finally arrived!!!  I had waited anxiously for this day….

It all started from an email from Kevin Gianotto, LBBC’s associate director of marketing corporate partnerships.  He had asked if I would be interested in being interviewed on CBS Talk Philly with Pat Ciarrocchi.  The topic was about living with metastatic breast cancer and also about MyMBCstory.com which is an online resource center developed by AstraZeneca with support and input from LBBC and Metastatic Breast Cancer Network (MBCN) which provides tools and information for women living with metastatic disease. I was really excited to discuss this site because it has really helped me through my journey and I was so excited about the opportunity, having been volunteering with LBBC for several years, for yet another chance to get my message out there: that there is life after a metastistic breast cancer diagnosis.  A life that is full and active, one to be lived and enjoyed.

I couldn’t wait!!! (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…)

Blog For Mental Health 2014: The Emotional Impact of Breast Cancer

May 14, 2014

mentalhealthblogdayToday is Mental Health Blog Day 2014, a Mental Health Month initiative from the American Psychological Association. As a contribution to this day, we wanted to acknowledge the emotional impact of breast cancer, in addition to sharing resources and letting you know that you are not alone.  

Whether you just heard the words “you have breast cancer,” are years beyond treatment or living with metastatic disease, it is likely that you experienced or continue to experience a range of complex emotions due to this major life change. At LBBC, we are dedicated to helping you cope with or manage these feelings by connecting you with trusted breast cancer information and a community of support.

In recognition of Mental Health Month and Mental Health Blog Day 2014, we wanted to highlight programs, resources and inspiring personal stories by men and women affected by breast cancer.

First and foremost, we have a toll-free Breast Cancer Helpline (888-753-52220) answered live from 9 a.m. to 9 p.m. ET. Staffed by volunteers who have been diagnosed with breast cancer, our Helpline will connect you with someone who cares and knows what you’re feeling. Call today or when you’re ready!

We also have some upcoming programs as well as podcasts and presentations of previous events, many of which you may find helpful: (more…)

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…)


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