From Silent to Vocal, Invisible to Visible, Underserved to Served

2012JeanSachsHeadshotVer2WebWhy LBBC Programs Focus on Metastatic Breast Cancer in October

By Jean Sachs, MSS, MLSP
CEO, LBBC

For nearly two decades I have dedicated my professional life to educating and supporting women, men and families whose lives have been impacted by breast cancer.  Over these years I have met so many incredible people who have faced this disease with courage and grace.  Every time I meet someone living with metastatic breast cancer, her story has a profound impact on me. LBBC is and has been committed to being there for these women and men.

In 2006, LBBC learned through its groundbreaking survey of women with metastatic breast cancer what I had heard so many times from my conversations with women living with the disease.  They often felt alone, poorly understood and served. The survey’s title, Silent Voices: Women with Advanced (Metastatic) Breast Cancer Share Their Needs and Preferences for Information, Support and Practical Resources, reflected this.

Before our study, women with MBC had never been asked about their needs as they faced the reality of a diagnosis that means they will always be in treatment. The survey also told us how isolated and alone women with MBC feel within the larger breast cancer community, especially during October when the focus of Breast Cancer Awareness Month skews heavily toward those newly diagnosed or whose treatment has ended—those who appear, at least on the surface, to be doing well.

LBBC took the information shared by our MBC survey respondents and began developing programs specifically for women with MBC to educate, connect and support them. Our Annual Conference for Women Living With Metastatic Breast Cancer was founded in 2007, and specialized guides, webinars and peer support soon followed. We began to focus our October educational programs toward MBC.

Thirteen personal stories will be posted over 13 hours, written by women and men living with metastatic disease, their caregivers and healthcare professionals. The posts will appear on a special webpage on lbbc.org as well as on our organizational blog, livingbeyondbc.wordpress.com. Going forward, the LBBC Blog will feature at least one MBC focused post a month under the Hear My Voice banner.

It is my hope that this October the national conversation will start shifting to include more messages about MBC and many more voices discussing it year round. National organizations, including LBBC, have already formed the Metastatic Breast Cancer Alliance (MBCA), a group of patient advocacy organizations and industry partners seeking to improve the lives of and outcomes for those with metastatic breast cancer and their families. MBCA seeks to increase awareness and education about the disease, advance policy and strategic coordination of research funding. This group will release a landscape analysis of MBC research and services on October 13.  Together we have a louder voice and more strength to respond to the needs of those living with metastatic breast cancer.

All of this brings me back to my intertwined personal and professional commitment to LBBC- creating a world where no one impacted by breast cancer feels uninformed or alone. Our work continues.

Join Our Annual Fall Conference From the Comfort Of Your Home

If you can’t come to our annual fall conference, Breast Cancer Today: Individual Treatments, Shared Experiences, you can still join us for the live webstream of our morning and closing plenary sessions. Read below to learn more about our webstreams.

eblastSquare400x400 copylivewebstreams copyYou may be in the middle of breast cancer treatment. You may be a single parent and can’t attend a conference far away. Other reasons make it difficult for you to travel long-distance.

At Living Beyond Breast Cancer, we understand that you may experience obstacles that prevent you from attending a national conference that isn’t within an easy driving distance or close to public transportation. That’s why we’re bringing parts of the conference to you through free, live webstreams!

Join us on Saturday, September 27, from the comfort of your own home. Watch our morning and closing plenary sessions and ask our experts your questions! Through our webstreaming, you will be able to watch:

Morning Sessions 9:30 – 10:45 a.m. (ET)

  • Triple-Negative Breast Cancer: What We Know, What We Are Learning, How You Can Help with Rita Nanda, MD (presented in partnership with Triple Negative Breast Cancer Foundation)
  • Hormone Receptor-Positive or HER2+ Breast Cancer: What’s New in Targeted Therapies with Virginia Borges, MD, MMSc
  • Metastatic Breast Cancer: Treatment Strategies with Clifford A. Hudis, MD

Closing Sessions 4 – 5 p.m. (ET)

  • Thriving! A Discussion on Living Well—Body, Mind and Soul with Virginia Borges, MD, MMSc Lisa McLaughlin, MSW, LSW, OSW-C, and Marisa C. Weiss, MD

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Reflecting on the “Let’s Talk About It” Series Video Shoot

20140912LTAIbehindscenesOur Young Women’s Initiative recently launched two videos as part of the “Let’s Talk About It” Video Series. Arin Ahlum Hanson, MPH, CHES, manager of the Young Women’s Initiative, wrote this post about the day of the shoot and working with the young women and video crew who helped create the additions to this series.

I always have a hard time sleeping the night before running the video shoot for the Young Women’s Initiative Let’s Talk About It Video Series. Yes, since I’m managing the project my brain is swimming with logistics, which does make it hard to relax. But I mainly can’t sleep because I’m so excited. I’ve quickly learned that these video shoots are one of my favorite work days of the year. I’m excited to meet the amazing young women from across the nation who have agreed to be a part of our video project and want to share their experience to help other young women cope with breast cancer.

Each year, the video interview participants seem to have no hesitations about arriving, meeting the group of strangers running the video shoot and then quickly launching into in-depth conversations about subjects that rarely get talked about openly.

This year’s April video shoot was no different. Assembly, the video production team, arrived with a 10-member crew and quickly set up the shoot in a small hotel room. Together, we spent the next 12 hours filming. Eight young women and three healthcare providers participated in the video shoot. Some of the young women were nervous when they arrived but relaxed once the interview started. Others had fun learning new make-up tricks from our stylist. Continue reading

“If I Can Make a Difference In ONE Person’s Life, Then I Know This Journey Was All Worth It”

imageToday we introduce Jessica, LBBC friend and guest blogger, who is sharing her breast cancer journey and how she came to discover LBBC’s Yoga on the Steps: Denver.

My journey started at the early age of 40 in late September of 2013 when I was sitting in what I call, ironically, my “happy place”. My happy place is a small chair in my bedroom next to  a large window where I look out at the mountains, decompress and think of my day, my family, what I am doing the next day or maybe what I am making for dinner. I remember standing up to go downstairs and feeling that something felt strange and cold. I checked under my shirt and saw that I had a small amount of discharge from one breast that had stained my shirt, and when I say small, I mean tiny – it was hardly visible. I changed my shirt and didn’t think twice about it and went on with my day which was having lunch with one of my best friends. We usually talk about our kids, school or maybe something our husbands did wrong the night before. That day, however, was different, for some reason we discussed what its like to get older, our aches and our pains. We laughed, and I remember the words I said to her exactly “at least you don’t have liquid coming out of your breast! A few more laughs and as always, I left, picked up my kiddos from school and went on with my daily routine.

 

A few hours later, I was sitting at home and got a call from this same friend. “Jess”, she said “I just talked to my Mom and I mentioned our discussion to her, the one where you told me about “liquid and breasts, her words to me were “My mom thinks you need to get it checked out, my Mom is a mammographer and she thinks it’s no joke”. Honestly, that is when my life changed, in an ironic twist of fate, a comment I made as a joke, saved my life.

Continue reading

It’s About You: Kate Garza’s Story

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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.  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

It’s About You: Lu Ann Cahn’s Story

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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. Continue reading