On Hair Loss

Last week, our Facebook followers shared hundreds of tips for coping with hair loss. Blogger Judy Weinstein wrote this post about her personal experience with hair loss and how she handled the side effect.

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When you get a cold, you feel sick right away. Strep throat? It’s obvious something is wrong! Kidney stones? You are in the hospital crying in pain. Cancer is different.  Cancer silently does its evil damage while you are going about your daily life. You are working, laughing, and likely “sweating the small stuff” while your cancer sneakily divides and tries to conquer.

One day you wake up and realize that something isn’t quite right. You have a slightly unusual lump, a little blood where you shouldn’t, or unexplained pain. Then the bombshell is dropped. “You have cancer.”

For many women who endure chemotherapy, one of our preoccupations is about becoming bald. I was squarely in that category. I generally don’t wear make-up and I don’t spend a long time pondering what to wear.  I did, however, spend a lot of energy over my lifetime thinking about my hair. I will always remember the very first time I cut my long hair up to my chin. I was in 6th grade.  One of my parent’s best friends said “Today we lost our little girl.”  I puffed with pride that a shorter haircut could make me look all grown up. Soon after, I grew it out and curled the front in a desperate attempt to look like Farrah Faucet. Then later came the big hair stage… even with a perm my straight hair didn’t cooperate!

After my third baby was born, my hair began to change. I started to become gray and over time my hair became more wavy, frizzy and unruly.  And did I mention gray?  Those wiry gray strands were the worst!

Figuring out a style that was best became a monthly challenge.  What was the right color for my changing hair? This time it was too blonde…this time too red. Should I go short? Long? Bangs? No bangs? One style was good for the winter and another for the summer humidity. One style worked for pulling it back when I played tennis but wasn’t flattering at other times! My patient hairdresser, now a close family friend, made whatever changes I asked for, knowing that I would always second guess my hair decision.

Once I had a cancer diagnosis and knew I was facing hair loss, thinking about becoming bald was admittedly terrifying. How humiliating to lose what I thought played such a heavy role in defining my looks and by extension, who I am. My cousin told me about the penguin caps one can wear during chemotherapy that works to prevent hair loss. Suddenly my emotions began to shift. The only thing I could think of worse than losing my hair, was to sit for several hours, being infused with toxic chemicals, wearing an ice-pack on my head. I was NOT willing to do that to prevent hair loss.  So maybe, just maybe if I wasn’t willing to go to such great lengths to prevent hair loss, perhaps it wasn’t as important as I initially thought.

I began losing my hair on January 1.  While I had the rest of my uncomfortable treatment ahead of me, I also had the hope and wonder that comes with any new beginnings.  What would this year bring? Finishing treatment, my middle son graduating from high school and starting collage, my youngest son starting high school and thanks to this treatment, celebrating my half century birthday! Never before did I deeply appreciate the thought of reaching this milestone.  As my grandmother used to say “It’s better than the alternative!” Continue reading

Offering Support for the Newly Diagnosed: Tips for People Who’ve Been There

New LBBC blogger Joanne Hampton posts tips for offering the best possible peer support for people newly diagnosed with breast cancer.

joanne hampton photoMy journey has consisted of nine surgeries, chemotherapy, radiation, and a positive diagnosis of BRCA1. I am an 11 year survivor. I have spoken at numerous events, sat on different committees, ran many successful fundraisers, and yet, I still feel awkward talking to someone who is newly diagnosed. They look up at me like I am about to reveal some great secret advice to get them through this. Tears begin to form in their eyes they ask me questions like “What now?”

Even though I, too, am a breast cancer survivor and have traveled a similar path, I don’t always know what to say. Because of this I was inspired to do some research for myself and other breast cancer survivors who want to offer that glimmer of light at the end of the tunnel for someone recently diagnosed.

I want to focus on some tips to think about when you are asked to speak to someone who is diagnosed with cancer. So that you can make it easier by giving them strength, make a difference by inspiring, and help by holding a hand.

Tip #1: Each person’s reaction is different.

This is very important. I can’t stress this enough. The most miniscule thing to one could be earth shattering to another. To me, losing my hair was the least of my worries. But, I have met a lot of women who were devastated and felt they had lost their dignity along with their hair. A person can’t always help or control how they feel. There’s no rhyme or reason, there’s no right or wrong but, they are real feelings and people will react differently, based on those feelings. Not all wounds are so obvious. Walk gently in her life.

Tip #2: It is not all about you and your journey or the journeys of others.

Be sensitive to her journey. Make sure you do not compare. Try and avoid saying things such as, “I know how you feel,” or “I know how hard it can be”. She needs to be herself and take her own journey. The secret is changing saying “I know” to “I understand”… because to an extent you do. As for comparing, most of the time people don’t even know they’re doing it. We don’t want her to feel bad if she isn’t living up to the expectation she sets for herself based on your experience. Continue reading

TNBC Aware: Raising the Voices of Those Left Behind — LBBC’s Triple-Negative Needs Assessment

LBBC’s Senior Director of Programs and Partnerships, Janine E. Guglielmino, MA, concludes our TNBC Aware series with this post about LBBC’s survey findings and the needs of women diagnosed with triple-negative breast cancer.

One morning several years ago, an LBBC colleague rapped on my office door. She was distressed. She had just spoken to a woman with triple-negative breast cancer, a term we had only recently started using after it appeared in scientific journals.

The caller was crying, despondent. She had gone online to learn more about her diagnosis, which websites described as “rare,” “aggressive,” and “difficult to treat.” Someone she trusted had asked her why she couldn’t “just take one of those drugs I keep hearing about on the news.” Why, the caller pressed, does it feel like there is nothing and nobody out there for me?

That call was not the first LBBC had received about triple-negative breast cancer, or TNBC, a subtype that does not respond to therapies targeting estrogen, progesterone or HER2 receptors. Almost daily, we heard from women who felt deeply anxious and worried about their future. Those with early-stage TNBC feared recurrence, while women with stage IV demanded research to expand their limited their treatment options. All clamored for more, better, evidence-based information that could guide them through diagnosis, treatment, and beyond.

It was clear LBBC needed to take action. We partnered with the Triple Negative Breast Cancer Foundation on a Guide to Understanding Triple-Negative Breast Cancer  and a two-part webinar series, held each April. We developed a website section on TNBC, posting subtype-specific research news and clinical trials. But we knew we needed to do more. We needed evidence we could share with anyone who serves people with TNBC.

So in 2012 we sought funding to conduct a comprehensive needs assessment of women with TNBC, modeled closely on LBBC’s previous studies for women with metastatic disease and premenopausal women. Working with researcher Kathleen Swiger, MPH, we recruited an executive committee of advocates and prominent clinical professionals with a research interest in TNBC. We interviewed seven healthcare providers and women about their experiences, and held focus groups in four regions.

We then designed an 80-question online survey, informed by these activities, to answer one key question: Do women with TNBC want education, information and support tailored to the cancer’s triple-negative status? Continue reading

It’s About You: Lynn Folkman’s Story

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.   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!

Second Saturday Breast Cancer Six-Word Memoirs: April 2014

Welcome to the launch of Second Saturday Breast Cancer Six-Word Memoirs! Check the new editions below, and learn how you can contribute a micro-memoir of your own.

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Earlier this week, we announced that we were making the breast cancer six-word memoir campaign a monthly feature here on the blog. We proudly present five new six-words: Continue reading