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.  Read the rest of this entry »

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. Read the rest of this entry »

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!

I loved everything about Yoga on the Steps: Kansas City

July 9, 2014

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Wendy Hazlett, LBBC friend and long-term Silpada Field Development Director of the Northeast Region shares her breast cancer story and why she’s looking forward to LBBC’s Yoga on the Steps: Kansas City for the 2nd year in a row! 

 

I was diagnosed with breast cancer in June 2011.  It was through a routine mammogram and I still thank God each day for the expertise of my radiologist!  I never thought “why me?”, but instead jumped right in to “beat this”.  We had been thoughtfully watching a lump on my left breast throughout the years, so when the mammogram came back saying that I had cancer in my right breast and my surgeon recommended double mastectomies, I followed the recommendation and had a successful surgery in August 2011.

 

I had my first reconstruction surgery that December – which my body rejected.  This caused me to undergo 3 additional surgeries before being able to close this chapter in my life in December 2012.

Read the rest of this entry »

Podcasts and Presentations on lbbc.org: Learning About Breast Cancer When it’s Convenient for You

July 3, 2014

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If you missed a Living Beyond Breast Cancer community meeting, webinar or other educational event, you can find that program’s podcast and/or presentation on lbbc.org. Learn about the LBBC Event Archive and check out a few podcasts and presentations from recent events. 

You had a doctor’s appointment or needed to get treatment. The weather and your distance to the community meeting location made it difficult for you to join us. You had to work through your lunch break. Schedule conflicts happen.

This is why some LBBC programs are recorded, transcribed and posted on our website – so that you can listen to or read them when your schedule permits. Our LBBC Event Archive has an extensive listing of podcasts, presentations and/or transcripts of events from 2010-present.

Check out some of our recent podcasts and presentations: Read the rest of this entry »

Check Out Our Twitter Chat, #LBBCchat: Coping With the Financial Impact of Breast Cancer

June 25, 2014

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UPDATE, July 8, 2014: A transcript of our financial concerns Twitter chat is now available. Read the tweet conversation on lbbc.org.

If you read and related to our June 18th blog post discussing concerns about the financial impact of a breast cancer diagnosis, our Twitter chat,  Coping With the Financial Impact of Breast Cancer, is for you. Join us tonight, June 25, at 8 p.m. (ET) using the hashtag  #LBBCchat for an hour-long tweet chat with a panel of breast cancer, finance and legal experts to get answers to your questions and learn about

  • what insurance will cover, and how to navigate both hidden and visible costs of breast cancer treatment.
  • how breast cancer can impact your personal finances.
  • workplace accommodations and disability rights, and what you can do if you lose your job.
  • the resources available to help you ease the financial burden of medical bills.

Are you new to Twitter chats? Learn best practices for successfully participating in tweet chats.

Additional Resources

We offer many resources on financial concerns and breast cancer, including a guide, online content, our ask-the-expert series and podcasts and presentations of past programs.

Download or order print copies of our updated Guide to Understanding Financial Concerns.

Read our Financial Concerns content in the “Beyond the Basics” section of lbbc.org.

Learn about or apply for our Cis B. Golder Quality of Life Grant.

Check out the following from our Ask the Expert series:

Listen to and read these podcasts and presentations:

Discover additional information from these recommended resource listings:

I’ve Reached a Milestone…My Halfway Mark

June 20, 2014

Tiff Smiling Tiffany Mannino is back sharing another ‘Dear Lola’ journal entry with us; letters penned to her future daughter about her breast cancer experience. This time she shares her thoughts and feelings about being halfway through her chemotherapy treatment…

 

April 19, 2010

Dear Lola,

I know it has been quite a long time since I’ve written. Although I have thought about you every single day, the truth is, I have not wanted to share with you how I’ve been feeling. I always envisioned that what I would write to you would inspire and uplift you as I am a firm believer in finding the positive in every situation.  Truthfully, I’m having an incredibly difficult time finding the light in the midst of darkness at the moment as I’m going through such a challenging time in my life.

The last time I wrote to you was on the eve of my first chemo treatment. I was filled with great anxiety and anticipation. Well, now I should be celebrating because I’ve reached a milestone…my halfway mark. It has been eight weeks, and I have completed four of my eight treatments. Although I’m thrilled to be halfway done, I’ll admit, that doesn’t replace the dread I feel that I still have four more! I’m not going to sugarcoat it, chemo totally sucks!

Going through chemo for me has hands-down been the most difficult part of the breast cancer journey and truthfully, the hardest thing I thing I’ve ever faced. Each treatment has brought on a different set of challenges to face.

The first treatment made me violently ill to the point I was practically vomiting up my intestines. I remember lying in bed at 3 o’clock in the morning writhing and crying out to my mom, begging her to make it stop. In between tears, I pleaded with God to take away my pain. At that moment, my mother wrapped her entire body around me and with tears in her eyes, just held me like a baby. It is amazing to me as a 36 year old adult, how much I wanted and needed my mother as if I were a little child once again. In that moment, I realized that we never, ever outgrow our mothers and the need for their love and care. Read the rest of this entry »

The Financial Challenges of Breast Cancer: Resources and Tips to Help You Advocate for Yourself

June 18, 2014

emilykitchenAn unfortunate concern you may have if you hear the words, “you have breast cancer,” is paying for treatment. Emily Kitchen, manager of external affairs of the Patient Access Network (PAN) Foundation, wrote this post to provide you with helpful information to overcome the financial hurdles of this diagnosis. Get more information by tweeting with us and Ms. Kitchen on June 25 for our Twitter chat, #LBBCchat: Coping With the Financial Impact of Breast Cancer.  

You just found out you’ve been diagnosed with breast cancer. You’re worried about your treatment, your family and friends. The last thing that you should be stressed about is how you will be able to afford your treatment. As one of our patients mentioned to me, the hardest part about cancer shouldn’t be how to afford it. However, with more and more underinsured people, this is becoming a harsh reality. Many will not even find out how much their treatment will cost until they arrive at the pharmacy to pick up their prescription. Those who can’t afford their treatments are often unable to continue therapy or medicine regularly or end up refraining from seeking care all together.

This is where organizations like the Patient Access Network (PAN) Foundation, Triage Cancer and local institutions like Community Legal Services (CLS) of Philadelphia can help. PAN offers help and hope to people with chronic or life-threatening illnesses by providing copayment assistance to those for whom cost limits access to breakthrough medical treatments. For instance, PAN can provide $7,500 a year to a patient with metastatic breast cancer.  Read the rest of this entry »

Major Plumbing Problems

June 5, 2014

randi rentzRegular LBBC guest blogger Randi Rentz is back! Today she’s tackling a topic we as a society consider rather taboo but while going through her treatment she found it became quite necessary to address the issue with her oncologist…

What ever happened to the old saying “in by 9, out by 5”? For me, after my cancer surgery and treatment it was “in at 9 out IN out IN out IN by 5” if I was lucky. There is nothing – absolutely nothing like being constipated after surgical procedures and treatment. Not only did I experience being “stopped-up” … as in non-functioning, total shut down, zippo, but one of the unpleasant side effects of my Taxotere treatment was colitis, an inflammatory process in the bowels resulting in diarrhea-diarrhea-diarrhea. Oy vey is mere. My plumbing problems were ever wretched. Read the rest of this entry »

The Cancer Mom

May 28, 2014

IMG_8155LLBBC’s newest guest blogger Kate Crawford is only 28 yet she has experienced many of life’s hardships, including a HER2+ metastatic breast cancer diagnosis. Today she shares her story about how her diagnosis helped her realize her health is just as much of a priority as the health of her family…

 

My quest of Motherhood was not so easily sought after. My first daughter passed away from a rare congenital mix of defects. The miscarriage to follow her death devastated me. I vowed not to try again until I became pregnant with my now 5 year old twin girls. My twins arrived 6 weeks early, both staying in the newborn intensive care unit for two weeks. I welcomed every cry, every fit, every middle-of-the-night feeding, every poopy blowout and every spit of vomit on my shirt. Motherhood was meant for me.

When my husband and I decided to try again, we were met with an even rarer pregnancy complication that threatened the life of my unborn son. The thought of loosing yet another child consumed my every thought. My uterus erupted in the middle of the night, 4 and a half years ago, and our son needed  life saving measures to survive his almost 8 week early arrival. He stayed in the hospital for over 2 months and at almost 3 had the articulation of a 12 month old and could barely walk but he was one thing: a fighter. Read the rest of this entry »


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