TNBC Aware: Leaning Into the Wind

Blogger Anna Craig wrote this original post about living with stage IV triple-negative breast cancer for our TNBC Aware series. 
AnnaI am 38 years old and I have stage IV triple-negative breast cancer.  This is the bad kind of breast cancer that no one really talks about.  It is incurable and will ultimately take my life. Triple-negative breast cancer is defined by what it is missing. It is the left over breast cancers that do not have one of the three known receptors; estrogen, progesterone and HER2. More likely to occur in young adults, triple negative makes up 15% to 20% of all breast cancers.  We are a minority.

Living with metastatic breast cancer is like playing a game of Whack-A-Mole, where each person has a finite bag of mallets. When a metastasis shows up on a scan you try to whack it on the head with a mallet. Sometimes it works, sometimes it doesn’t.  When it doesn’t, you grab a new mallet and keep whacking until you run out. As you can imagine, the bigger your bag of mallets the more likely you are to extend your life. Unlike HER2- and hormone-positive breast cancer, triple negative does not yet have targeted treatments like Herceptin. My treatment options, outside of clinical trials, are limited to chemotherapy, surgery and radiation. This means my bag of mallets is much smaller.

Having metastatic breast cancer in your 30s is complicated. As with most young people my age, I am in the thick of my life. I have two small children and a budding career as an architect.  Until cancer, I was healthy, active and ambitious.  I had patiently begun to build my life. I had even started to discover things that inspire me to dream without limits.  My life was just starting to take flight, when in an instant, cancer happened and my world crashed at my feet.

I’ve always been a person who embraces the idea that life is a journey.  I pictured my career as a long twisting road of discovery.  My twenties and thirties would be about understanding how buildings work and how materials come together.  I would take time off to have a small family.  I would balance my career and my ambition with parenthood.  Life would be thick, active and vibrant.

In my forties and fifties, I would start to come into my own.  I would create a body of work that was imaginative and inspiring. My buildings would have spaces full of light, texture and meaning.  In my sixties and seventies, I would travel the world and work on a few special projects. My buildings would reflect my wisdom and grace.  I would be an eccentric old architect with lots of grey hair, wrinkles, colourful socks and brightly patterned clothing.

Triple-negative breast cancer with its never ending toxic cycles of chemo derailed that life. Instead of balancing my career with my family, I have spent days and weeks in bed. Cancer can be very isolating.  Sometime I get so trapped in my illness and my discomfort that I struggle to relate to the people around me.  The more time I spend in bed, the more my dreams and passions drift away. Often I feel very alone, vulnerable and angry.  Continue reading

TNBC Aware: Education and Support Through Virtual Community

Today, March 3, marks Triple-Negative Breast Awareness Day. LBBC is marking the day with a Twitter Chat and an . Jennifer Stringer Staggs kicks of our series with a post about being newly diagnosed with triple-negative breast cancer, worrying about her daughter and sister, and finding support and community online. 

 

When my provider told me that I had triple-negative breast cancer, I was overwhelmed. Before learning my diagnosis, I Googled the different kinds and triple negative scared me the most. I read a lot about this type of breast cancer, and was told a lot of things that scared me. For example, I heard that if I had triple-negative that my chances of survival would be less than if it was hormone-sensitive, and that there was more of a chance it was genetic and could be passed on to my children.

My provider gave me a lot of information, but I found the best information going on Facebook and finding breast cancer forums. Diagnosed at age 29, I did not want to go to a local support group that had a huge age gap. It was a lot easier for me to get information and support online because everyone there either wanted the same information or already went through it. It felt more like a sisterhood in the forums. Nobody judged the questions I had and they were able to tell me what to expect from the treatments I was about to receive.

I got some of the best information going to Living Beyond Breast Cancer’s Fall Conference. I listened to professionals explain what triple-negative meant and what kind of treatments and side effects to expect. They also had an expert speaking about young women going through all of this and what to expect from “chemopause” and changes in your sex drive. I learned so much information there that none of my doctors covered.

Having triple-negative breast cancer made me very concerned for my daughter and my sisters and their kids. I worry they could still get cancer, even though I tested negative for the BRCA gene. I don’t want any of them to have to go through what I have had to endure. 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

Yoga: A Survivor’s Tool for Strength

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? Continue reading

Our New Vision and Mission

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This morning, Living Beyond Breast Cancer’s CEO Jean Sachs released the following message to our friends and supporters:

Dear Friends:

All of us at Living Beyond Breast Cancer are excited to share our new vision and mission statements with you:

Our new vision

A world where no one impacted by breast cancer feels uninformed or alone.

Our new mission

To connect people with trusted breast cancer information and a community of support.

These new statements were developed with the help of over 1,200 of you who responded to a survey we sent out earlier this year. Your input was used in a day-long retreat with members of the board of directors and staff. We learned what LBBC services are valued most and why so many have come to depend on our educational programs and services that allow for connection to others diagnosed with breast cancer.

For me, these new statements say with clarity what we strive to do every day and what we hope to achieve over time. Yesterday, I spoke with a long-time friend who had just been diagnosed with breast cancer.  She was overwhelmed, scared and shocked. Our conversation and the resources I was able to put in her hands grounded her and provided her with enough comfort and confidence to take the next step.

This is what LBBC does every day, and it is exactly what the new vision and mission statements express.

I hope you share my enthusiasm and, as always, if you have comments I would love to hear from you.

Warmly,

Jean 

Jean A. Sachs, MSS, MLSP

Chief Executive Officer

LBBC

I Talk To Strangers, You Should Too!

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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 Introduces New Guide To Understanding Breast Cancer

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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