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 Hope of Many Summers After a Metastatic Triple-Negative Diagnosis

Annie GoodmanNew York journalist Annie Goodman discusses the realities of a metastatic triple-negative breast cancer diagnosis, and living her life with more hope and less fear.

 

Maybe it’s all in my head. I can’t have brain tumors. Maybe I’m just depressed and need psychiatric help.

After discovering a lump, I was diagnosed with stage IIB triple-negative breast cancer on February 29, 2012. I was 30 years old with no family history of cancer. I had a mastectomy, reconstruction, four rounds of Adriamycin and Cytoxan and 12 rounds of Abraxane chemotherapy. While in treatment, I found out I had the BRCA1 mutation. On November 30, 2012, I finished radiation and my doctor declared I was in remission.

I went back to normal life. I enjoyed having a healthy appetite again. My hair grew back. I went back to work full-time. Having cancer was no longer all I could think about. It started to become a memory, and I loved life as a survivor.

Due to the BRCA1 mutation, I had to go for ultrasounds of my ovaries every six months. My first screening was perfect. In November 2013, I went for my second ultrasound, and as soon as I got into work, my doctor’s office called: I needed to come in immediately. My right ovary was 11 cm. A normal ovary is 3 cm.  Continue reading

Getting On Track – LBBC’s Reimagined Fall Conference

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.  Continue reading

LBBC’s Annual Fall Conference is for You!

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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!

Blog Back: A Welcome Shift in Access to Healthcare Coverage

Welcome to October’s “Blog Back” column, a recent feature on the blog where the Living Beyond Breast Cancer staff write about their thoughts and experiences for you. This month’s columnist is Michelle Bielko, our Editor and Manager, Publications. In this “Blog Back” post, Michelle writes about her experience working on the Cancer Insurance Checklist, and what the shifting access in healthcare coverage means to her. 

As a volunteer emergency department liaison at a community hospital, too often I’ve overheard an individual in the throes of an emergent medical injury or illness exclaim with panic, “I don’t have health insurance. Will you still treat me?”, upon approaching the check-in desk. In those milliseconds before a patient registrar offers assurance that emergency care will be given regardless of insurance status, that individual often looks as if she or he fears hearing another set of words instead: “I’m sorry. In that case, we cannot treat you” — as if turning around and walking out the doors might be expected of her or him at a time of urgent medical need. Continue reading

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

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. Continue reading