Posts Tagged ‘newly diagnosed’

It’s About You: Lynn Folkman’s Story

September 4, 2014

emailHeader760x1604_BlogResizeAt this year’s annual fall conference, Breast Cancer Today: Individual Treatments, Shared Experiences, we’re not just providing you with the unique information you seek; we’re offering you the chance to connect with others and learn that you’re not alone.  While being treated for breast cancer, Lynn Folkman went to her first-ever LBBC fall conference in 2009. She blogs about that day and the importance of creating the conference experience you want. Lucky for us, Lynn joined the team at Living Beyond Breast Cancer in 2012 as our Community Engagement Manager.

Lynn Folkman LBBC Fall ConferenceIt was fall 2009 – I had just completed chemotherapy, radiation therapy and was a few months into my year of taking trastuzumab (Herceptin) and I was exhausted. I found out about the LBBC Annual Fall Conference through one of my support groups and the thought of attending alone was too overwhelming for me, so I agreed to attend with a friend I met during treatment.

The conference that year was held at the Pennsylvania Convention Center. I was a bit nervous about attending, as I had previously worked at the Convention Center and still knew quite a few people there, and they did not know that I had breast cancer. As well, the tables were turned; I was a meeting planner and instead of producing the event, I was experiencing the conference as an attendee.

I was in an emotionally raw and vulnerable state. I was at the point in my treatment where I often wondered if or when I would ever feel like myself again. I was tired of hearing the comment, “You look really great!” I longed for a day where I could be invisible and no one would know that I had breast cancer. However, I was still mostly bald and there was no masking what I was currently experiencing. I was apprehensive about having to endure glances from people who knew me, which would be mixed with a combination of sympathy and trepidation.  They were used to the vivacious energetic Lynn, not the exhausted Lynn.  How could I possibly fake it when I did not even have the energy to do so?

A few things occurred that day which continue to deeply comfort my mind and spirit and reinforce the special place in my heart for the LBBC Fall Conference. Since it was my first time attending, I had no idea what to expect. The day began with the opening session, the speaker welcomed the group and then asked people how far out they were from the time of their diagnosis. When your year was called, you were instructed to raise your hand. One year and under, my hand went up. I don’t remember the exact breakdown, but it went something like this: 1-5 years, 5-10 years, 10-15 years, more than 15 years and so on.  What I do remember is being overwhelmed as I heard cheers and looked around the room and saw so many raised hands and proudly smiling faces.   (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!

Yoga: A Survivor’s Tool for Strength

May 27, 2014

KateGarza2 for 5 28Kate Garza is a mother of three teenagers, cancer survivor and yoga instructor in Cheltenham. Her “Team Kangaroo-om”  participated in our event, Yoga on the Steps: Philadelphia, on Sunday, May 18.  For more information or to register for a Yoga event near you, visit yogaonthesteps.org. Read Kate’s blog at LotsaHelpingHands.com.

I climbed the steps of the Philadelphia Art Museum last Sunday for Living Beyond Breast Cancer’s Yoga On The Steps, a sun drenched block party of yoga enthusiasts and breast cancer affiliates. Occasionally my thoughts traveled back to last year’s event, which I attended during my own active treatment, bandanna wrapped around my chemo-bald head. On that gray day a year ago I felt as bad as the cold fog and drizzle that enshrouded the steps.

But last Sunday, bathed in sunshine, I shook off a year and a half of living with breast cancer treatment. I gathered with a large team from my kids’ high school, faculty and students together. I was there to give and gain support and to advance LBBC’s mission of bringing patients together with resources throughout the journey, one that can thankfully now include many years of health beyond treatment.

Cancer survivors have long had an intuitive sense that yoga helps body and mind, but now we have studies to prove it. In March, the Journal of Clinical Oncology published a study of 191 breast cancer patients by researchers at MD Anderson Cancer Center in Houston. It linked yoga to improvements in self-reported quality of life, including measures of mood, pain and fatigue. Practicing yoga also appeared to help regulate the stress hormone cortisol, which is tied to poor survival among breast cancer patients.

Aware of these unique qualities of yoga, Living Beyond Breast Cancer has held Yoga on the Steps as its signature fundraising event since 2001, and in recent years has expanded to other cities — this July in Kansas City and September in Denver. Last year, LBBC, the Ardmore-based national education and support organization, published a Guide to Understanding Yoga and Breast Cancer, detailing the benefits of yoga to coping with anxiety, fatigue, strength and body image.

But what exactly is it about yoga that helps? (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…)

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…)

Blog Back: Healing and Embracing Change After Breast Cancer

March 31, 2014

LynnFolkmanLynn Folkman, manager of our volunteer programs, wrote her Blog Back post  about her personal growth after reaching her 5-year “cancerversary.”  Read her story and check out our past Blog Back columns.

“Feels like some kind of wild ride but it’s turning out just to be life going absolutely perfectly.”

Every morning, while having my espresso, I view a piece of artwork with the above statement and allow it to resonate in me.

In March 2009, I was diagnosed with stage I ER, PR and HER2-positive breast cancer. I have always been a believer that things happen for a reason. Although certainly at the time, I could think of no good reason why breast cancer and chemotherapy would be on that list. As 2014 began, I was rapidly approaching my 5-year mark and found myself filled with a variety of emotions: joy, sadness, anxiety and fear. (more…)

This Week at LBBC: March 25 – April 1, 2014

March 25, 2014

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Welcome to our new blog column, “This Week in LBBC,” a weekly update of local and national events, programs and other initiatives by Living Beyond Breast Cancer.

National Programs and Initiatives

ANNUAL CONFERENCE FOR METASTATIC BREAST CANCER : We’re excited that registration opened for our eighth Annual Conference for Women Living with Metastatic Breast Cancer! Come join us Saturday, April 26 – Sunday, April 27, at the Philadelphia Marriot West in West Conshohocken, Pa. Register for the conference or apply for a travel grant and fee waiver. Visit lbbc.org/metsconference to download a conference brochure.

TRIPLE-NEGATIVE BREAST CANCER WEBINAR SERIES: Learn more about triple-negative breast cancer during our free, two-part webinar series:

  •          Part One: Medical Update: On Thursday, April 17, from noon – 1 p.m. ET, featuring Rita Nanda, MD, who will help you understand today’s standard of care treatments for triple-negative disease.
  •          Part Two: Managing Fears of Recurrence: On Thursday, April 24, from noon – 1 p.m. ET, Julie Larson, LCSW, will discuss triggers of fears of recurrence and teach you strategies that will help you.

(more…)


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