Archive for the ‘women's health’ Category

What, Me…Cancer??

April 11, 2013

On Tuesday we introduced first time contributor Sandi Dennis to the Living Beyond Breast Cancer Blog.  Sandi is a long time supporter of LBBC who grew up in Philly and attended Philadelphia High School for Girls (where she is looking forward to her 40th reunion in 2014!). She majored in journalism at Penn State and worked as a TV news reporter in Columbia, South Carolina, prior to attending University of South Carolina Law School. Today she practices FDA/healthcare law, and policy, including work for companies and nonprofits in oncology and patient advocacy.  She lives in Washington, DC, with her husband, daughter and a dog named Lulu. Here is part two of her story.

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On that day of the LBBC Yoga on the Steps Fundraiser in DC,  my sneaky triple negative breast cancer in fact was not gone, only as yet undetected.  And that 95% chance of non-recurrence? Well, somebody has to be in that 5%.  So much for my faith in statistics.   In early November 2012, a trip to the dentist and a routine x-ray showed something odd. “You don’t have a history of breast cancer, do you? I had a patient with breast cancer that metastasized to her jaw . .  .”  Well, my jaw dropped open, and then clenched through a roller coaster week of scans of my head, bones and brain (all normal), and a full body pet scan that showed metastases of my breast cancer to four sites—all soft tissue/lymph nodes.  In the world of Stage IV disease, I am very very early . .   . my cancer is virtually in its infancy. And I have every intention of keeping it there.  I am stunting your growth, you little b . .  .d!!

Wrong assumption # 5: stage IV is a death sentence.  I did not know that stage IV could be livable.  I truly thought that—except in rare instances—stage IV patients were down for the count.  I now understand that with current treatment I am likely to live for 20ish years (at which point I’ll be 75, which sounds way far away to me), and with treatment advances that are likely to emerge in the next decade, I’ll likely live longer than that–maybe even to my original target age of 90. (For some reason at age 45, I decided that 90 was a good ending point.)

I have just completed five rounds of chemotherapy, and am nearing the end of treatment.  The chemo was actually less fatiguing and I experienced fewer side effects this time.   I kept my hair, which shallow but true, makes me feel good about myself.  And I really, really don’t look sick at all, unless one notices my port.  I do suddenly have lymphedema in my right arm, a side effect of having fewer/less functional lymph nodes—even though those lymph nodes were removed surgically almost three years ago.  It’s always something.  But most importantly, the chemo is working! After three rounds, a scan showed that all four cancer sites had decreased in size by about 50%.  These numbers I can handle.  Hallelujah!  Thank you higher powers, and thank you drug developers, doctors, nurses, and everyone else that played a role in this.  Cancer, you’re going down.

Granted, I don’t always feel or act so tough.  Having a lifelong chronic disease is a life change that I haven’t quite wrapped my arms around yet. How exactly does one move on with life, and yet live from scan to scan? I feel like my cancer is a stalker that we may have driven away for awhile, but that is lingering nearby and can move back in at anytime.  My lifelong goal will be to keep him away from the good body parts.

In the meantime, I will continue to do the work I feel passionate about; work out, practice yoga, learn to meditate; be a loving mother, wife, sister, aunt, and friend; get pedicures, and buy rockin’ shoes.  Albeit, I will do all of these things as a cancer patient.  It’s not what I wanted or planned on, but it’s what I’ve got. And we don’t always get to choose.

You can continue to follow Sandi’s story by visiting her own blog, Cancer Diva 4 Ever and be sure to visit the LBBC blog for future posts by Sandi!

As we mentioned on Tuesday, LBBC will host its Annual Conference for Women Living with Metastatic Breast Cancer  Saturday, April 13 and Sunday, April 14 at the Loews Philadelphia Hotel.  The conference is designed to address the complex medical, social and emotional challenges that women diagnosed with metastatic disease, their families and their caregivers experience. To learn more about the conference visit lbbc.org.  In addition, on April 17, LBBC and the Triple Negative Breast Cancer Foundation will conduct a free webinar at 12:00 p.m. EST.  Also accessible by phone, the webinar’s featured guest is Dr. George W. Sledge Jr. Chief, Division of Oncology, Professor of Medicine, Stanford University School of Medicine.  During the call, you’ll hear about today’s standard of care in treating breast cancer that tests negative for the estrogen, progesterone and HER2 neu receptors and gain insight on making the treatment decisions that are right for you.  In addition, how to access clinical trials and get an insider’s look at the latest research on the horizon will also be discussed. Register online or call (610) 645-4567.

What, Me . . . .Cancer??

April 9, 2013

Today, we welcome first time contributor Sandi Dennis to the Living Beyond Breast Cancer Blog.  Sandi is a long time supporter of LBBC who grew up in Philly and attended Philadelphia High School for Girls (where she is looking forward to her 40th reunion in 2014!). She majored in journalism at Penn State and worked as a TV news reporter in Columbia, South Carolina, prior to attending University of South Carolina Law School. Today she practices FDA/healthcare law, and policy, including work for companies and nonprofits in oncology and patient advocacy.  She lives in Washington, DC, with her husband, daughter and a dog named Lulu.  

 

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I know far more about breast cancer than I ever thought I would.  In almost three years, I have gone from knowing a bit more than the average bear (as a healthcare lawyer I have worked with biopharmaceutical companies on treatment advances), to knowing a respectable amount.  And since breast cancer has now become part of my forever, I think I’m heading towards PhD status. Much of what I have learned has altered some of my basic assumptions: of who will be a breast cancer patient (not me, of course), what treatment is involved, what chemotherapy is like, and who will have a recurrence/metastatic disease (again, of course, not me!).

I was wrong on all counts.

First, I couldn’t count on lack of family history, my generally healthy lifestyle and overall excellent health, or regular mammograms and exams.  Cancer thumbed its nose at all of that. In April 2010–while trying to print out my boarding pass for a trip to Mexico and a week of intensive yoga, hiking, and vegetarian meals—I felt a lump just above my right breast.  I was not doing a self-breast exam; I think I was scratching under my arm.  If my Internet connection had been faster, I likely would not have found it.

Second, once I swallowed the “you have breast cancer” news (and bought a fabulous pair of retro-vintage high heeled mary janes in ecru lace with black leather trim), I thought I was just meeting with my surgeon to schedule a surgery date.

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(said mary janes)

I went alone, planned to drive to my office afterwards, hopefully in time for a late-morning meeting.  What was the big deal? Just a lumpectomy, I thought, maybe an estrogen-lowering drug . . .  but no, a diagnosis I’d never heard of: “triple negative . .   chemotherapy . .  you will lose your beautiful hair . . . “  I could not swallow those words.  The shoes did not help.  I called my two best friends who came to get me and my car, and stayed with me until my husband could get home.  He proceeded to refinance our mortgage at a lower rate.  I have no recollection of what I did for the rest of that day.

Third, I assumed chemo patients were pale, thin, and sickly, and expected to have my head in the toilet for days. Here, the reality was better than my assumptions. While chemo is no day at the beach, it can be livable and tolerable.  I worked, continued my workouts and yoga, and never felt nauseous, thanks to the advances in treatment of chemo side effects.  I got pedicures, which I once would’ve thought were verboten for chemo patients. I actually gained a bit of weight from steroids, and I never really looked sick, unless someone caught a glimpse of me without one of my wigs on (which did occur in yoga—95 degrees and sweat are not good for wigs!)

Fourth, once I got through surgery, chemo, and radiation, my “beautiful” hair grew back, and I became less fatigued (although fatigue never completely went away), I thought I was home free.  My chance of recurrence was decreasing every year, and at this point was only about 5%.  On October 14, 2012–exactly 2 1/2 years out AND my 56 1/2 year birthday– I proudly participated in LBBC’s Yoga on the Steps fundraiser in DC,  and was the top individual fundraiser.  (Yay me, and yay, my generous, thoughtful friends and family!) I was called up to the stage and given the microphone & announced that I was cancer-free, exactly halfway through my five year milestone. Yay me, yay science and medicine, yay life!

Wrong again, Mary Lou.

You’ll find the second half of Sandi’s first LBBC blog story on Thursday.  In the meantime, you can learn more about Sandi by visiting her own blog, Cancer Diva 4 Ever.

LBBC will host its Annual Conference for Women Living with Metastatic Breast Cancer  Saturday, April 13 and Sunday, April 14 at the Loews Philadelphia Hotel.  The conference is designed to address the complex medical, social and emotional challenges that women diagnosed with metastatic disease, their families and their caregivers experience. To learn more about the conference visit lbbc.org.  In addition, on April 17, LBBC and the Triple Negative Breast Cancer Foundation will conduct a free webinar at 12:00 p.m. EST.  Also accessible by phone, the webinar’s featured guest is Dr. George W. Sledge Jr. Chief, Division of Oncology, Professor of Medicine, Stanford University School of Medicine.  During the call, you’ll hear about today’s standard of care in treating breast cancer that tests negative for the estrogen, progesterone and HER2 neu receptors and gain insight on making the treatment decisions that are right for you.  In addition, how to access clinical trials and get an insider’s look at the latest research on the horizon will also be discussed. Register online or call (610) 645-4567.

Difficult Challenges can Make You Strong

March 29, 2013

I would like to introduce myself, my name is Lindsay Beckmeyer and I am the new Marketing and Public Relations Coordinator here at LBBC! Going forward  I will be managing the LBBC blogs and I’m very excited to share the stories we receive with all of you! That being said, Cameron Von St. James is an avid reader of our C4YW blog and he approached me about writing a piece to share his experience as caregiver for his wife who was diagnosed with Mesothelioma in 2005. While we focus on breast cancer, I felt that Cameron’s story would be appropriate to share for our readers who are currently in the position of caregiver because no matter the specific diagnosis the role of caregiver can be quite similar. Here is Cameron’s story…

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It’s hard to realize just how much cancer can change your world until your own family is confronted with a diagnosis.  My wife Heather and I were proud parents of a new daughter, Lily, and we weren’t prepared to receive the news that Heather had mesothelioma on November 21, 2005.  I was now a caregiver to my wife and daughter, a job that I had not been prepared for by anything else in my life to that point.  It felt like chaos was setting in.

As our doctor discussed the disease with us, he provided us with some choices for treatment.  We would need to see a specialist, and we could opt for a local university hospital, a regional facility that didn’t yet have a good mesothelioma program, or a reputable specialist in Boston.  The disbelief in my wife’s face was heartbreaking, and as I looked at her and waited for some sign of interest in any of the three choices, I realized that she was paralyzed by shock and fear.  I told our doctor, “Get us to Boston!”

Our next two months were rough.  The familiarity of our daily routines was gone as we devoted all of our attention to Heather’s medical needs.  She couldn’t work after the diagnosis, and we had both been accustomed to our full-time schedules prior to this.  Now, we were arranging child care for Lily so that we could deal with the medical steps we must take.  I was afraid of losing my wife to cancer, worried that we would lose everything in the process.  More than once, I broke under the pressure and dissolved into tears in private, but I didn’t let Heather see the worst of my meltdowns.  I needed to be strong on her behalf.

However, not all of this experience was bad.  Through our struggles, we encountered so many positives that helped pull us through.  First and foremost was the community that rallied around us in our time of need.  Friends and family came out of the woodwork offering help and support.  We were so touched by their generosity, and it was this kindness that allowed us to make it through the most difficult times. Complete strangers even provided assistance and support.  Comforting words were priceless, and financial help was certainly appreciated, as the bills kept piling up and our income was significantly lowered.

When you are faced with the overwhelming impact of cancer, take advantage of every little bit of help available.  People who care will sincerely offer.  Make the most of their support. The help and support of our community was invaluable in our fight with cancer.

Second only to the love and support of our community, our greatest tool to help us through was hope.  Throughout all of the struggles, all of the bad days and moments of fear and despair, we never allowed ourselves to give up hope for a better tomorrow.  A positive attitude and outlook can go a long, long way.  My wife has frequently said that she sees life through rose-colored glasses.  This positivity was key to her survival, as it encouraged both of us to never give up, even through the toughest times.

Heather’s mesothelioma treatment over the following months would drive her cancer into remission, and she has been cancer free to this day, over seven years since her diagnosis.  I grew and learned a lot during this time, and I can honestly say that being my wife’s caregiver has made me a better man.  Now, Heather and I hope that by sharing our story, we can inspire others in their own daily battles, whether it be cancer or any other obstacle in your way.  Never give up hope, and never stop fighting for the ones you love.

“Cameron is husband to Heather Von St. James, survivor advocate for the Mesothelioma Cancer Alliance, and father to Lily Rose. He, along with Heather and young Lily, had their world’s turned upside down when Heather was diagnosed with malignant pleural mesothelioma, just 3 1/2 months after the birth of his only child. When faced with the very real possibility of raising Lily on his own, he fought alongside Heather in her battle with mesothelioma. It was his determination and refusal to compromise on doctors or treatments that led them to Boston to receive radical surgery from esteemed mesothelioma surgeon, David Sugarbaker. Heather continues to thrive 7 years later.

Like Heather, Cameron is passionate about bringing awareness to mesothelioma and the dangers of asbestos exposure. It is his hope that sharing his story will help others those battling cancer and their caregivers who provide them care and guidance in their journey.”

I Talk To Strangers, You Should Too!

March 28, 2013

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Long time LBBC blog contributor, RANDI RENTZ, graduated with honors from The Johns Hopkins University with a Masters degree in Special Education. She was an editorial assistant for a publishing company in suburban Washington,DC before becoming a special education teacher in a school district outside Philadelphia, PA. Randi currently is an Asperger’s Support Teacher for grades kindergarten through fifth. Presently, Randi has her own consulting company for children on the Autistic Spectrum where you can see her work at   www.helpforaspergers.com. She is a proud member, supporter, and blogger for many breast cancer organizations and never leaves the house without diamonds. Visit Randi at her web site at www.randirentz.com. Be sure to check out the teaser for her upcoming book “Why Buy a Wig…When You Can Buy Diamonds!”

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Call me crazy, but I look forward to waiting in line, and just about any opportunity to shoot the breeze with people I don’t know. I’m chummy with the guy who pumps my gas, (the only gas station nearby where they still pump gas for you), still exchange holiday cards with my 4th grade elementary school teacher, and the other day I spent a solid hour gabbing with an 81-year old woman I met at the tailor’s while having my pants hemmed.

I’m now a life-long, die-hard people person. I never used to be, though. In fact, I never enjoyed chatty encounters with people I didn’t know…until cancer. I wasn’t hostile before breast cancer.  Every day I had pleasant exchanges with strangers and acquaintances—an enthusiastic “Morning!” or a friendly “Have a great day!”  Such moments continue to be life-affirming, yet, prior to breast cancer, they were blessedly brief.

On-the-fly updates from people I’ve barely met used to drain me. Seriously.  I always felt obliged to respond with genuine emotion, to pay real attention. I would fake outrage or concern, with a performance that was definitely Oscar worthy. That meant stopping whatever I was doing, and force myself to focus. Since my laser-beam concentration was always sensed by the people stopping me, their details got longer and longer. Oy, vey! I felt trapped like a mouse in a maze.

Did breast cancer make me a people person? Well, I think it made me more aware of the little moments in life that make up the big moments. I now enjoy being a true people person—even though I’m inclined to dislike anyone who describes himself/herself this way. Go figure. I digress, sorry. Anyhoo, hear me out. Lifting your head and engaging with whoever happens to be standing next to you is worth the effort. It’s nice to see people smile and to genuinely smile back. It really feels good and refreshing. You should try it.

For one thing, you never know when you will receive priceless advice.  The 81-year-old cautioned me to get in good with my son’s future wife and to always take the dog out for an evening walk to do “its business.” Little did she know, I have no children and own two cats which use a litter-box. Needless to say, I felt it worthy to file away her words of wisdom. Maybe a stepson and a dog are in my future. Who knows? I digress. Sorry. When I left the fitting room, fiddling with the waistband of my pants, she said, “With posture like that, who needs Spanx? Coming from a stooped octogenarian, her words felt like a wake-up call to enjoy my youthful existence.

I believe my world is bigger with my random encounters. My brushes with strangers bring me the thrill of the unexpected, to glimpse a world I used to brush off and otherwise never see or appreciate. In the frenzy of life, with intense money, work and time pressure, I honestly didn’t have much conversational energy to spare.

Now, I think of it as a habit as “meeting new people,” even if I never see them again. My encounters with strangers bring me back to a place where I long to be. I never had grandparents, because they died before I was born.  But now I cherish chance meetings with people of all ages, especially older people. I find their perspective to be rather eye-opening.

Instead of rolling my eyes, I appreciate the interruption. I am so grateful for the little things in life. I now understand what being a warm person means.

And now, onto the Spanx…

LBBC’s Triple-Negative Breast Cancer Focus Groups Need Participants!

March 27, 2013

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Do you have triple-negative breast cancer, or know someone who does? LBBC is planning several focus groups to learn about the needs of women living with triple-negative breast cancer. Groups are planned in the areas of Chapel Hill, N.C., on April 10; Philadelphia, Pa., on April 12 and April 13, (focusing on metastatic breast cancer); and San Francisco, Calif., and Indianapolis, Ind., the last week of April (dates TBD). Groups last 90 minutes, and participants receive a $25 gift card for their time. If you are interested in participating in a focus group, please contact us ASAP at publications@lbbc.org and let us know which location interests you. We will be in touch with more information!

LBBC Introduces New Guide To Understanding Breast Cancer

March 25, 2013

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Living Beyond Breast Cancer (LBBC) has announced the release of Hormonal Therapy, the newest title in this national nonprofit’s library of Guides to Understanding Breast Cancer. It joins nineteen other LBBC publications available in print and electronic formats designed to address the needs of women who have been diagnosed with breast cancer.

 

The guide provides insight and answers about the complexities of hormonal therapy, treatment that reduces estrogen in the body, for women with breast cancer. Hormonal therapy for breast cancer is sometimes referred to as endocrine or anti-estrogen therapy. Breast cancer hormonal therapy can reduce the risk of disease recurrence, prevent new breast cancers and improve survival. Approximately 70% of breast cancers are hormone-sensative¹ and many women are likely to receive hormonal therapy as adjuvant therapy – treatment given after primary therapy.

 

The Guide to Understanding Hormonal Therapy was co-authored by Janine E. Guglielmino, MA, LBBC’s director of publications and strategic initiatives, and medical writer Robin Warshaw.  “At Living Beyond Breast Cancer, we know women face many choices when it’s time to begin treatment for hormone receptor-positive breast cancer,” Guglielmino states. “This guide was developed to help women ask their providers informed questions about how hormonal therapies and their side effects may impact their day-to-day lives.  And since hormonal therapy lasts for many years, the guide aims to address the questions women have today – as well as those that may arise tomorrow – as those concerns may very well change over time.”

 

In addition to Guglielmino and Warshaw, a committee made up of more than a dozen oncology professionals, LBBC staff and women affected by breast cancer reviewed and contributed stories to the sixty-six page guide, which is divided into eight sections and written in clear and easy-to-understand language.  Section topics include hormonal therapy options, common questions about treatment decisions, coping with side effects, what to expect when treatment ends and additional resources.

 

The guide focuses on hormonal therapy for early-stage (ed. note – stage 0-II) or locally advanced (ed. note – stage III) hormone receptor-positive breast cancer. Hormonal therapy is also used to treat recurrent and metastatic (stage IV) hormone positive disease and to prevent first breast cancers in women at high risk for developing breast cancer.

 

“We believe women can play a powerful role in their treatment when they have the resources to help them make informed decisions and be full advocates for their own health,” say LBBC CEO Jean A. Sachs, MSS, MLSP. “In addition to this guide, LBBC has additional resources at lbbc.org.”

 

Free, individual copies of the Guide to Understanding Hormonal Therapy are available online or by calling (610) 645-4567. Larger quantities may be ordered for a small shipping and handling fee.

 

¹National Cancer Institute

YOGA ON THE STEPS: WASHINGTON, DC REGISTRATION NOW OPEN

March 13, 2013

 

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Registration is now open for Yoga on the Steps: Washington DC, the signature education and fundraising event for Haverford, PA-based nonprofit Living Beyond Breast Cancer.  The event is scheduled to take place rain or shine beginning at 5:30 p.m. Thursday, June 13 on the northeast quadrant of The Washington Monument.  The highlight of the event is a one-hour yoga class for all ages and skill levels designed and led by Yoga Alliance certified instructor and founder of Yoga Unites® Jennifer Schelter, MFA with Kirtan accompaniment by Yvette Pecoraro and other local area musicians. After the class, participants can enjoy refreshments while visiting a Healthy Living Expo where event sponsors, local area businesses, yoga studios and nonprofit organizations will feature products and services promoting health and wellness.

“While Yoga on the Steps is similar to other nonprofit grassroots fundraisers it really is a one-of-kind event,” explains Jenna Jackson, LBBC’s special events manager.  “People are asked to register as a team captain or participant at yogaonthesteps.org and then fundraise for LBBC by asking family, friends and colleagues for donations. But instead of using a walk or run as our event’s centerpiece, we feature a yoga class.  Jennifer has designed the class so that anyone, regardless of skill level or body type can participate. Yoga on the Steps is a unique and powerful education program in its promotion of yoga as an important part of a person’s overall wellness plan.” t is scheduled to take place rain or shine beginning at 5:30 p.m. Thursday, June 13 on the northeast quadrant of The Washington Monument.  The highlight of the event is a one-hour yoga class for all ages and skill levels designed and led by Yoga Alliance certified instructor and founder of Yoga Unites® Jennifer Schelter, MFA with Kirtan accompaniment by Yvette Pecoraro and other local area musicians. After the class, participants can enjoy refreshments while visiting a Healthy Living Expo where event sponsors, local area businesses, yoga studios and nonprofit organizations will feature products and services promoting health and wellness.

What has grown into LBBC’s signature education and fundraising event began after Schelter’s friend and student, Courtney Kapp, was diagnosed with breast cancer.  Kapp wanted to use her home as a place where women with the disease could form a support network through the practice of yoga. She asked Jennifer to teach the class and also introduced her to LBBC’s executive director (now chief executive officer) Jean Sachs, MSS, MLSP. Together, the three women founded Yoga on the Steps.

“Now,” says Sachs, “thousands of people, most with no formal training, annually attend Yoga on the Steps in different cities to raise awareness of LBBC’s resources, stand in solidarity with women diagnosed with breast cancer and honor the memories of those who are no longer with us.”

Studies continue to indicate a correlation between yoga’s stretching exercises, controlled breathing and relaxation techniques with stress reduction, lower blood pressure and improved heart function. “More and more studies we’ve been seeing, especially over the last few years, really confirm the relevance of Yoga on the Steps,” states Sachs.

 

A study conducted by UCLA researchers suggests that yoga can help women overcome post-treatment fatigue which is estimated to affect as many as one-third of women currently in breast cancer treatment. The research, which was published December 16, 2011 in the journal Cancer, discovered that after three-months-worth of twice-weekly yoga classes, “a group of breast cancer survivors in California reported significantly diminished fatigue and increased vigor,” Andrew M. Seaman of Reuters Health said. Cancer, Volume 118, Issue 15

In addition, at the 34th Annual San Antonio Breast Cancer Symposium held in 2011, a study presented findings that women with metastatic breast cancer might benefit from the practice of yoga, as well. A small randomized trial was collaboratively conducted by yogis and physicians, including S.K. Gopinath, MD, from the Department of Surgical, Medical and Radiation Oncology at the HCG-BIO Super Specialty Center in Bangalore, Karnataka, India. The researchers found data that suggest the practice of yoga might reduce psychological distress and modulate abnormal cortisol levels as well as immune responses in patients with stage-IV disease. Medscape News Today

In 2011, LBBC began the implementation of a national Yoga on the Steps expansion initiative developed by the organization’s Board of Directors and senior staff as part of LBBC’s 2011-2015 strategic plan.  “Yoga on the Steps is a low-cost, high-return way to introduce LBBC resources to communities that may not know of their availability,” explains Sachs.  “We’ve established annual events in Philadelphia, Washington, DC and Denver with Kansas City, Missouri recently named as our fourth Yoga on the Steps host city.”

“The increasing popularity of yoga is a big factor in the growing success of the event,” she continues. “But more than that, it’s LBBC’s reputation of sound fiscal management and the trust our supporters have in us that energizes Yoga on the Steps participants to fundraise for LBBC at the grassroots level. We maintain the lowest overhead possible for the event ensuring our resources are always available to anyone in need.”

LBBC’s most recent annual report, released in July of 2011, shows that 86 cents of every donated dollar is used to fund services. For eight consecutive years LBBC has been awarded a four-star rating by Charity Navigator, the  country’s leading organization that evaluates American nonprofits, signifying it exceeds industry standards and outperforms most other charities within its cause. LBBC 2011 Annual Report

Businesses wanting to learn more about national and local sponsorship opportunities and benefits are asked to contact LBBC’s associate director of marketing and corporate relations Kevin Gianotto, at kevin@lbbc.org. General Yoga on the Steps and Healthy Living Expo questions should be directed to Jackson by emailing jenna@lbbc.org. 

About

LBBC provides services designed to help improve quality of life for women who are newly diagnosed, in treatment, recovery, years beyond their diagnosis or living with metastatic breast cancer as well as resources for family, friends and caregivers.  National conferences, monthly teleconferences, regional community meetings, the Guides to Understanding Breast Cancer and a toll-free Survivors’ Helpline are examples of the services that are provided to help them make informed decisions for themselves and their families. 

If you are or someone you know is living with a history of breast cancer, regardless of stage of diagnosis, age, race, religion, sexual orientation or ability to pay, LBBC can help. For more information, visit lbbc.org to download a free copy of Empower, LBBC’s general information brochure or call (610) 645-4567.

“Hit it hard and hit it fast.”

March 13, 2013

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Last week, we introduced you to LBBC’s newest blogger, Laura Renegar, who was diagnosed with triple-negative breast cancer in 2011.  When we left off, Laura had asked her surgeon if the results he had just delivered did indeed mean she had TNBC.  Trying to be as compassionate as possible he stated, “Yes darlin’, it does.”   

Always the southern gentlemen even as I was being told I have been diagnosed with triple-negative breast cancer.  Here I was, thrown back down to the lowest point of the roller coaster ride yet. By this point, I had done enough research to know that I should be frightened. The research that I had seen showed the statistics and the prognosis of TNBC are not as positive as some other types of breast cancer, that there is not any targeted therapy for TNBC and that is usually very aggressive. Now I understood why my surgeon wanted my tumor out a few weeks prior. I understood why he didn’t want to waste another week waiting for the insurance company to decide the fate of my diagnosis while debating coverage for a blood test.  All things became clear. I had to become my own advocate and I had to seek every bit of information I could find and I had to do my research.  I didn’t know anyone that had triple-negative breast cancer, in fact, I had barely heard of it.

I had a port placed in my chest a few days later and in a few weeks, I began chemotherapy. Three days before chemotherapy I met my first survivor friend who had TNBC. She was coming up on her five year mark and I was impressed. She looked good and she was healthy. I became focused on just getting through chemotherapy because my oncologist said we were going to “hit it hard and hit it fast”, and we did.

I put my BRCA test results out of my mind and I gave 100% attention to staying well through chemotherapy. A month after my last chemotherapy treatment was my 48th birthday and it was time for me to make my decision for further treatment. Because of the fact that my cancer was triple-negative and the fact that I have the BRCA2 gene mutation, my decisions seemed pretty clearly defined. My oncologist seemed to think so, my surgeon seemed to think so, but yet, I had to make the final decision, and live with that decision, whichever path I chose.

I didn’t have to have a bilateral mastectomy. I didn’t have to have my ovaries removed. But if I didn’t have those surgeries, would that encourage a recurrence?  I clearly remember lying in my bed on my birthday and thinking “in order to have more birthdays, I have to do everything in my power to protect myself”.  I remember weighing my options. Even though my cancer was not in my lymph nodes, and I had chemotherapy, the fact that I was BRCA2 positive remained. My chance of a recurrence was extremely high; and the prognosis of recurrent triple negative breast cancer is poor. I had to do everything I could to secure my future and my life. I began researching bilateral mastectomies and what it meant to have my ovaries removed and what it would be like to be put in medical menopause at 47 years old. This option did not seem to be an easy path, but it did seem like the safest treatment path, to secure a future for myself.

The bilateral surgery, along with the oophorectomy (Ed. Note: the surgical removal of an ovary), was a hard surgery for me.  It was hard physically and emotionally, and my roller coaster ride continued through reconstruction while learning to live with menopausal symptoms and my new body.

March 1, 2013 was the date of my two-year survivor anniversary. I look back now and am so proud of the path I took and the decisions I made to ensure my health. I did everything I could possibly do to beat my triple-negative breast cancer diagnosis and reduce the chances of a recurrence.

Would I do the same thing over again? Yes I would!

My story is still unfolding but I live each day the best way I can. I volunteer a lot for the American Cancer Society, I continue to update my blog, I write stories and articles when I am asked to, and I tell my story when I am invited to speak about it. Mainly, I try to encourage women to be their own advocate, to get their annual mammograms, to have their yearly physical, and to do self exams. I encourage them to know their breasts and to know their health history.

I will continue to try and shine a light on TNBC until a targeted therapy is found. I now know 19 women with triple-negative breast cancer. Two years ago I was not fortunate enough to know, and love, these women but I consider this one of the many blessings of this diagnosis. If you are diagnosed with TNBC, please reach out to people in your community and to find other TNBC survivors. How? Ask your doctors to introduce you to some of them.  See if there is a local support group for TNBC.  You can also call the Triple Negative Breast Cancer Foundation and contact the American Cancer Society and ask for a TNBC volunteer with Reach to Recovery.

I also encourage you to seek out the many services available at LBBC for women with TNBC including their Guide to Understanding Triple Negative Breast Cancer, expanded sections of content on their award winning website and their upcoming free webinar featuring Dr. Eric P. Winer.

Take advantage of these resources and find other women – because they may need to have you in their life just as you will want them to be in yours.

On April 17, LBBC and the Triple Negative Breast Cancer Foundation will host a free webinar at 12:00 p.m. EST.  Also accessible by phone, the webinar’s featured guest is Dr. George W. Sledge Jr. Chief, Division of Oncology, Professor of Medicine, Stanford University School of Medicine.  During the call, you’ll hear about today’s standard of care in treating breast cancer that tests negative for the estrogen, progesterone and HER2 neu receptors and gain insight on making the treatment decisions that are right for you.  In addition, how to access clinical trials and get an insider’s look at the latest research on the horizon will also be discussed. Register online or call (610) 645-4567.

In addition, you can order a free copy of LBBC’s Guide to Understanding Triple-Negative Breast Cancer,  that offers helpful information, whether you have just been diagnosed or you are moving forward after treatment.

Be sure to check out Laura’s blog, too!

“Yes darlin’, – it does.”

March 6, 2013

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If we followed format, this is where we’d introduce you to LBBC’s newest blogger, Laura Renegar, with a few polite lines that could never  do justice to this amazingly talented and funny lady.  We’re still laughing over this offering of honesty:

When I had expanders in my chest they kind of formed a shelf below my collar bone. When I was sick and in bed and would eat propped up, I would CONSTANTLY have toast crumbs or Oreo crumbs on that “shelf” on my chest. Once I found a whole chocolate chip sitting there and once I found a piece of turkey. There are funny moments during expansion and reconstruction. 

Here is the first of a planned series of blogs where Laura will share her experiences as a woman diagnosed with triple-negative breast cancer.

On March 1, 2011, I received the call that every woman dreads. I was at work, sitting at my desk, holding my cell phone that showed the name of my OB/GYN calling. My mind debated about not answering the phone, but quickly considered the possibility that this phone call could be good news. When I answered that call, my life, and the life of my family and friends would be forever changed. “You have breast cancer” my doctor said, “I am sorry.” We talked for a few minutes as I sat numbly at my desk writing the name and number of the surgeon he suggested on a small piece of scrap paper.

A few days later my husband and I met my surgeon and his nurse. Right in the beginning of the appointment the doctor said “can I joke with you?” Are you kidding me? This was my kind of doctor! Not only did I want him to be able to joke with me, I needed him to be able to joke with me. No matter how serious breast cancer can be, I needed my medical team to be brutally honest, caring, and compassionate yet able to lighten some of the moments with a joke or some laughter.

My surgeon recommended genetic testing and I agreed to see a genetic counselor for my BRCA test. I had the blood test and genetic counseling and the waiting began. One week became two weeks. My insurance company was negotiating with the genetic testing company about my coverage for this $3,400 blood test. Two weeks! My surgeon scheduled my lumpectomy and sentinel node biopsy because he couldn’t allow my cancer to continue to grow and spread while waiting for the insurance company to make a decision. At this point I began to realize that my cancer was most likely aggressive. I was told that my cancer would be staged, and further diagnosed, when the tumor was removed during the lumpectomy. I felt lost and left somewhat in the dark. Every day seemed as if we were hurrying up for a test or an appointment and then we were waiting. I felt like we were always waiting for a call, an answer, or a test result. I felt immediate relief the night of the lumpectomy and sentinel node biopsy surgery, knowing that my cancer had been removed. I was very happy to have the surgery behind me, but little did I know that my real roller coaster ride was just beginning.

Two days after my surgery I got a phone call from the genetics counselor. Once again, a phone call that I was hoping was going to deliver good news – but I heard hard news instead. The phone call began with “I am sorry to tell you this, two days after your surgery, but your BRCA test came back positive yesterday.” What? The BRCA2 gene mutation put a whole different spin on my diagnosis. Now I felt as if I was at the bottom of the roller coaster loop and I began researching. My odds of getting breast cancer were obviously 100% (since I already had it) and the test showed my odds of getting ovarian cancer were over 50%. But what does this test say, and prove, about my chance of recurrence? I was recuperating from the surgery yet my mind and heart were nagged by this BRCA test result and worrying already about a recurrence. Five more days passed and we still had not gotten news on my pathology report from my lumpectomy. No news is good news right? Eight days after my lumpectomy, I was at work, and my phone rang; it was my surgeon’s nurse. No news was good news! My lymph nodes were negative for cancer and he was able to get clear margins. I am ecstatic, we are all celebrating and dancing around, and now I feel like I am on one of the upper tracks of my roller coaster ride.

Clear margins AND clean lymph nodes? How blessed am I? I am on the top of the world!

The next day I receive another phone call, this time it is with the result of my her2 neu test. I was still riding high on the lack of cancerous activity in my lymph nodes and the fact that he was able to get clear margins. My surgeon stated that my her2 neu test came back negative. I got very quiet and said to my surgeon, “this means I am triple negative, doesn’t it?”

He paused on the other end of the phone and said “Yes darlin’, – it does.”

On April 17, LBBC and the Triple Negative Breast Cancer Foundation will host a free webinar at 12:00 p.m. EST.  Also accessible by phone, the webinar’s featured guest is Dr. George W. Sledge Jr. Chief, Division of Oncology, Professor of Medicine, Stanford University School of Medicine. During the call, you’ll hear about today’s standard of care in treating breast cancer that tests negative for the estrogen, progesterone and HER2 neu receptors and gain insight on making the treatment decisions that are right for you.  In addition, how to access clinical trials and get an insider’s look at the latest research on the horizon will also be discussed. Register online or call (610) 645-4567.

In addition, you can order a free copy of LBBC’s Guide to Understanding Triple-Negative Breast Cancer,  that offers helpful information, whether you have just been diagnosed or you are moving forward after treatment.

Be sure to check out Laura’s blogtoo!

“My mom had breast cancer.”

March 1, 2013

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Drew and Courtney Daly and their boys

Courtney Daly was 37 years old when she was diagnosed with stage I invasive breast cancer, which manifested as two tumors in one breast.  In addition, she also learned that she had DCIS in both breasts. It is now one year since her diagnosis.  

Recently, her son Aidan completed a video project for school.  Let’s have him share his story in his own words. 

Hi, my name is Aidan. I made this video for a school project called “Think Care Act”.  For this project you choose a problem you care about and do something to help. Originally I wanted to raise money for LBBC, but then I decided to create a pamphlet and video for kids my age who might be scared if their moms have cancer. I wanted to help them know that there are other kids out there and people know how they feel.

This video tells the story of how my family and I got through my mom having breast cancer. My mom was diagnosed at age 37. She was one of the 10% of women diagnosed with breast cancer who are under age 40. It was really hard at first knowing my mom had breast cancer. But as we talked about the survivors we knew it got a whole lot easier. My parents were very reassuring and that made me feel better. Throughout the spring and summer, my mom had two surgeries, four chemo treatments, and tons of doctors appointments. She tried her best to come to my baseball games and other special events. She is an awesome-sauce mom!

I hope that this video helps many kids my age, and lots of families. If you are gong tough times right now I hope this video helps you.


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