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

LBBC blog pic_AyannaAyanna Kalasunas 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: Moving Beyond Awareness

AnnbyKorn1Ann Silberman wants readers to think critically and fund research to help people with metastatic breast cancer reach their goals and milestones.


It seemed slightly odd to be asked to write for a website called “Living Beyond Breast Cancer” when, as a woman with metastatic breast cancer, it is only my family who will live beyond cancer. I will merely live with breast cancer until it kills me.  But so much of Pink October has so little to do with those of us who are metastatic that I agreed that our metastatic voices need to be heard this month.

In 2009, I was diagnosed with Stage IIA HER2-positive breast cancer. I did the normal treatment for my diagnosis; mastectomy first, then “TCH” which is 6 rounds of Taxotere and Carboplatin and a year of Herceptin. I cried the night before I lost my breast, I smiled as the nurses handed me my chemo graduation certificate, and my last Herceptin treatment brought great relief. My year of endurance had ended and now I could get fully back to my life.

At my very first 3 month post-treatment appointment, my doctor sent me for a scan, which brought the devastating news: breast cancer had spread to my liver. My cancer is now incurable.

And so I did as we all do – I searched for survival statistics, read stories of struggle and death, and learned acceptance.  I figured out how to live with a terminal illness (and was not always graceful about it).  Finally, I set a goal: I would see my son graduate from high school.

Over the course of the next three years, I was sicker than I ever thought anybody could be, but my doctor did not give up on me, and I did not give up on trying for my son. I had half my liver removed in an effort to eradicate the liver mets, only to find they grew right back. I nearly died from c-diff sepsis that landed me in the ICU and then left me recovering at home, weak and sick, for months. I struggled through 7 different chemotherapy drugs, each with their own side effects, until my marrow would no longer recover and my immune system was gone. I did SBRT radiation on the mets that continued to mutate. And, finally, I was put on Perjeta, which I call my miracle. My mets disappeared into the ether and in May of 2014, I not only watched my Valedictorian son walk with his high school class, but also this September I took him to his college, Caltech, settled him in, and even made his dorm room bed. Despite the odds, I reached my goal. Continue reading

Hear My Voice: The Silver Lining in the Malignancy

Susan RosenSusan Rosen writes about staying positive in spite of her diagnosis with metastatic breast cancer. 


When I was diagnosed with stage III breast cancer on August 10, 2010, I never questioned the diagnosis. I never asked, “Why me?” I would deal with the diagnosis and treatment and move forward.

Not this time.

In September 2013, my cancer metastasized to my bones, liver and dura (the outer covering of the brain). After more testing, a primary thyroid cancer was also discovered.

I went through a range of emotions. I was angry, I was mad. How could this happen to me when I took all the right precautions? My oncologist reassured me that I did all I could. It didn’t matter.

When my oncologist delivered my diagnosis, he brought up an image on a computer screen. It was the image of my body, all lit up. He looked sad. 
He said the cancer has spread. He was so sorry. My oncology nurse cried. I cried. My husband looked lost.

We then needed to tell our children. My daughter is 19, and a sophomore in college. My son is 15, and a sophomore in high school. It was not easy telling them last year, as they both adjusted to their freshman years. However, we have been sharing all news, good or bad, with our kids since the beginning of this journey.

Within a few weeks we all adjusted as well as we could to this devastating news. It was time to move forward, and begin treatment. I started chemotherapy right away. I felt weak and tired, but I did not lose my hair! I am now on hormonal therapy and a bone medicine.

I am feeling fine and handling my situation well… most days. I have my moments, especially when I think of my husband and kids.  Continue reading

LBBC’s Annual Fall Conference is for You!



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
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!

Introducing My+Story

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


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.



Jean A. Sachs, MSS, MLSP

Chief Executive Officer


Difficult Challenges can Make You Strong

I would like to introduce myself, my name is Lindsay Beckmeyer and I am the new Marketing and Public Relations Coordinator here at LBBC! Going forward  I will be managing the LBBC blogs and I’m very excited to share the stories we receive with all of you! That being said, Cameron Von St. James is an avid reader of our C4YW blog and he approached me about writing a piece to share his experience as caregiver for his wife who was diagnosed with Mesothelioma in 2005. While we focus on breast cancer, I felt that Cameron’s story would be appropriate to share for our readers who are currently in the position of caregiver because no matter the specific diagnosis the role of caregiver can be quite similar. Here is Cameron’s story…


It’s hard to realize just how much cancer can change your world until your own family is confronted with a diagnosis.  My wife Heather and I were proud parents of a new daughter, Lily, and we weren’t prepared to receive the news that Heather had mesothelioma on November 21, 2005.  I was now a caregiver to my wife and daughter, a job that I had not been prepared for by anything else in my life to that point.  It felt like chaos was setting in.

As our doctor discussed the disease with us, he provided us with some choices for treatment.  We would need to see a specialist, and we could opt for a local university hospital, a regional facility that didn’t yet have a good mesothelioma program, or a reputable specialist in Boston.  The disbelief in my wife’s face was heartbreaking, and as I looked at her and waited for some sign of interest in any of the three choices, I realized that she was paralyzed by shock and fear.  I told our doctor, “Get us to Boston!”

Our next two months were rough.  The familiarity of our daily routines was gone as we devoted all of our attention to Heather’s medical needs.  She couldn’t work after the diagnosis, and we had both been accustomed to our full-time schedules prior to this.  Now, we were arranging child care for Lily so that we could deal with the medical steps we must take.  I was afraid of losing my wife to cancer, worried that we would lose everything in the process.  More than once, I broke under the pressure and dissolved into tears in private, but I didn’t let Heather see the worst of my meltdowns.  I needed to be strong on her behalf.

However, not all of this experience was bad.  Through our struggles, we encountered so many positives that helped pull us through.  First and foremost was the community that rallied around us in our time of need.  Friends and family came out of the woodwork offering help and support.  We were so touched by their generosity, and it was this kindness that allowed us to make it through the most difficult times. Complete strangers even provided assistance and support.  Comforting words were priceless, and financial help was certainly appreciated, as the bills kept piling up and our income was significantly lowered.

When you are faced with the overwhelming impact of cancer, take advantage of every little bit of help available.  People who care will sincerely offer.  Make the most of their support. The help and support of our community was invaluable in our fight with cancer.

Second only to the love and support of our community, our greatest tool to help us through was hope.  Throughout all of the struggles, all of the bad days and moments of fear and despair, we never allowed ourselves to give up hope for a better tomorrow.  A positive attitude and outlook can go a long, long way.  My wife has frequently said that she sees life through rose-colored glasses.  This positivity was key to her survival, as it encouraged both of us to never give up, even through the toughest times.

Heather’s mesothelioma treatment over the following months would drive her cancer into remission, and she has been cancer free to this day, over seven years since her diagnosis.  I grew and learned a lot during this time, and I can honestly say that being my wife’s caregiver has made me a better man.  Now, Heather and I hope that by sharing our story, we can inspire others in their own daily battles, whether it be cancer or any other obstacle in your way.  Never give up hope, and never stop fighting for the ones you love.

“Cameron is husband to Heather Von St. James, survivor advocate for the Mesothelioma Cancer Alliance, and father to Lily Rose. He, along with Heather and young Lily, had their world’s turned upside down when Heather was diagnosed with malignant pleural mesothelioma, just 3 1/2 months after the birth of his only child. When faced with the very real possibility of raising Lily on his own, he fought alongside Heather in her battle with mesothelioma. It was his determination and refusal to compromise on doctors or treatments that led them to Boston to receive radical surgery from esteemed mesothelioma surgeon, David Sugarbaker. Heather continues to thrive 7 years later.

Like Heather, Cameron is passionate about bringing awareness to mesothelioma and the dangers of asbestos exposure. It is his hope that sharing his story will help others those battling cancer and their caregivers who provide them care and guidance in their journey.”