Kindred Spirits at Namas Day Philadelphia

This blog post by Liz Barker originally appeared on ChangedbyChance.com on April 28, 2015. It was reprinted here with the author’s permission.

I volunteer at numerous Living Beyond Breast Cancer events through the year. Spring brings an all-day yoga event called Namaste`Day to Philadelphia. LBBC is an advocate of yoga because of its mind, body, and spirit connective healing philosophy. They appreciate that healing a life threatening illness such as breast cancer needs to be addressed with all of the body’s senses. And so, they had a booth at Namas Day and I volunteered because I love yoga.

Typically, there are at least 2 of us survivors at an LBBC event and it is always nice to meet someone new and to hear their BC story.

Well, this encounter turned out to be extraordinary! (Of course, it should have been no surprise given the spiritual nature of Namas Day.)

So, my fellow volunteer that day is Elizabeth Howanski. As usual, we swap our Breast Cancer stories. As usual, I expect that when I tell my new friend that I am a 24 year, young survivor, she will be wowed by the survivor-ship years. Which I am grateful for every day folks.

LBBC EventHowever, much to my surprise, Betsy tells me that she is a longer survivor! Although we are both the same age (58), Betsy was diagnosed younger, at age 26. Therefore, she is now a 32 year survivor! Neither of us has a family history of BC. Our name and age similarities don’t end there. Betsy was also diagnosed while she was pregnant, at about 5 months along with same timing – diagnosed in May and due date was early October! We were both given the same trite, horrifying advice by our doctors – “terminate your pregnancy to save your life.” Sadly, our parallels end here.

Betsy followed her doctor’s advice and reluctantly terminated her pregnancy. (Remember, there was no Internet and not much history of BC at young ages or during pregnancy back then. Without question, doctor knew best.) I almost followed that advice but, I was fortunate that a family friend, a doctor himself, (an angel I call him), intervened and saved my baby’s life. Betsy and I wept and hugged as we shared our stories. I felt a bit guilty and humbled, that I was touched by an angel and that Bryan was saved. More importantly though, I felt a kindred spirit with Betsy, not only due to our similar past, but also because of our futures and our philosophies of “living beyond breast cancer.”

Betsy bravely moved on with an enthusiastic and positive spin on life. She adopted 3 wonderful children from Korea who are now 21, 29, and 31. She is a long time professional working at Drexel University’s development office. We both echoed the same sentiments about our lives – that the BC experience was a life lesson. It taught us both some sage advice. That we need to be self-advocates and to educate ourselves when we are faced with serious obstacles in our lives. It’s the 3 R’s that I talk about in my book – Recognize, Research, and then React. Live and learn.

Another day, another journey… Namaste~

Liz Barker Author Living Beyond Breast Cancer

Liz Barker is a longtime LBBC volunteer. Learn more about Liz and her personal experience with breast cancer on her blog, ChangedbyChance.com.

Embracing Community and Participating in Yoga on the Steps

FullSizeRenderMarisa Gefen, MD is a 35-year-old physician and mother who has now added “patient” to her resume. She was diagnosed last April with ER/PR-positive breast cancer. Marisa reflects on how this journey led her to Living Beyond Breast Cancer and Yoga on the Steps.

After my shocking diagnosis in April 2014, I immediately went into survival mode. I hyper-fixated on getting through the current phase of treatment and onto the next phase. It was a whirlwind of getting a port, quickly followed by starting chemo, managing chemo side effects, finishing chemo, then on to a 9-hour surgery comprised of a double mastectomy, sentinel node biopsy, and free flap breast reconstruction. Soon, I was home recovering from this massive surgery and then stumbling into radiation daily for 5 weeks.

Then, I woke up one morning in January and suddenly realized that active treatment was all over. Now what? In this frightening journey, I was missing a sense of community of others with similar experiences, both past and present. The endless support from my husband, family, and friends, did not fill the entire void.

I heard about Living Beyond Breast Cancer right after my diagnosis. When I happened to be looking for local office space, my tour of commercial real estate ironically took me right through LBBC headquarters, which I toured. The office was warm and full of young, vibrant people. I wasn’t ready at that moment to reach out.

I was reintroduced to LBBC in December, when I tried frantically to interpret the results of the Suppression of Ovarian Function Trial (SOFT). This major trial will likely change the standard of care for me and other women under age 35 with ER-positive breast cancer, by recommending induction of early menopause (as if we haven’t been through enough) and possibly switching from tamoxifen to an aromatase inhibitor. 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

Discussing Fertility Preservation with Young Patients Diagnosed with Cancer

Kristin N. Smith, a patient navigator at Robert H. Lurie Comprehensive Cancer Center, blogs about some fertility options healthcare providers could discuss with young patients diagnosed with breast cancer. Ms. Smith is the speaker for our webinar, Fertility and Breast Cancer: Educational Opportunities and Preservation Options. Register now for this program and discover more about how you can help young women learn about fertility after breast cancer.

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Providing care to young cancer patients who wish to pursue fertility preservation prior to initiating cancer treatment requires the collaborative efforts of oncologists, reproductive endocrinologists, nurses and many more within a short time frame.

Being able to effectively communicate and educate patients about the potential gonadotoxicity of cancer therapy, or damage to reproductive organs caused by treatment, and the available options for fertility preservation is essential to improve patient care. Many of the treatments we use to treat cancer for adolescent and young adult (AYA) women can decrease the likelihood of having biological children. High dose alkylating agents and pelvic radiation can destroy the ovarian reserve; radiation to the brain can harm the way the brain communicates to the gonads and surgical resection of reproductive organs can all make family building more difficult for patients.  Continue reading

Changing The Way I Viewed Stage IV: How I Learned I’m Not Alone

Sheila Johnson-Glover is back on the LBBC blog to talk about the Annual Conference for Women Living with Metastatic Breast Cancer, how it changed the way she saw her diagnosis and connected her with a community of support. Learn about our Ninth Annual Conference for Women Living with Metastatic Breast Cancer, taking place April 11-12, 2015 in Philadelphia.

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Motivating, exciting, empowering, community building, love, strength, laughter and unity – these are the words that describe how I felt during and after I attended my first Annual Conference for Women Living with Metastatic Breast Cancer. For me, this conference was a game changer on how I viewed my diagnosis. The event gave me a new hope and a new beginning. I determined then that I would fight and continue to fight and to encourage other’s to attend this conference so they too can make lifelong friendships and get all the updates on research, treatment and support for people living with a stage IV breast cancer diagnosis.

I was diagnosed with HER2-positive metastatic breast cancer in December 2009. I had to ask my doctor, “Well how many stages are there?” My doctor responded, “Sheila you have the worst one.” As you can imagine, my heart felt like it had exploded and my whole body went numb. I needed to know more about metastatic breast cancer and meet women like myself who were living with this diagnosis, and learn if they felt the same way I did emotionally and physically. I was a total wreck when I learned I had stage IV breast cancer. I knew nothing about stage IV and I didn’t have anyone I could relate to.

Living Beyond Breast Cancer has been a true blessing in my life. I was introduced to LBBC by my support group, the Young Women’s Breast Cancer Program in St Louis, Missouri, and what a joy it’s been! I soon learned about the amazing conferences LBBC hosted, and I thought attending one would be a great opportunity to meet those who understood the same battle that I faced every day. I wanted to ask other people living with stage IV breast cancer questions like how they deal with side effects and what questions I should ask my oncologist. I would later learn that every cancer treatment plan is different but still, I needed to hear from others who understood what I was going through.  Continue reading

Addressing a Gap Identified in Our Needs Assessment of Young Women: Discussing Fertility After Breast Cancer

Whether treatment will affect their ability to have children in the future is one of the most common worries among young women who are diagnosed with breast cancer. LBBC’s Arin Ahlum Hanson, MPH, CHES, manager of the Young Women’s Initiative and YWI Program Coordinator Ingrid Mapanao blog about this gap, in anticipation of an upcoming healthcare provider webinar on fertility and breast cancer. 

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LBBC’s Arin Ahlum Hanson, manager of the Young Women’s Initiative (left) and YWI Program Coordinator Ingrid Mapanao (right).

The National Comprehensive Cancer Network guidelines recommend all premenopausal women diagnosed with breast cancer be informed about the potential impacts of treatment on their fertility and asked if they would like to have future pregnancies. LBBC’s national needs assessment of over 1,500 young women affected by breast cancer found that only half of the young women surveyed reported discussing fertility issues with their healthcare providers. Of those women who did discuss fertility impacts with their providers, the majority of those women initiated this important discussion with their healthcare providers rather than having their healthcare providers bring up the subject.

LBBC is working to close this communication gap by educating healthcare providers through an upcoming webinar. Healthcare providers participating in this webinar, Fertility and Breast Cancer: Educational Opportunities and Preservation Options , will learn about fertility preservation options available for young women and how breast cancer treatments impact fertility. The webinar will be held on Wednesday, March 18 from noon-1pm ET and the guest presenter will be Kristin N. Smith, a fertility preservation patient navigator at the Comprehensive Cancer Center of Northwestern University in Chicago.

Free CEUs will be given to the first 150 nurses and 150 social workers who register!

Our hope is that many healthcare providers join our Young Women’s Initiative’s commitment to strengthen and expand programs for young women affected by breast cancer. Healthcare providers can do this by participating in the webinar. If you’re a healthcare provider, register now to learn the roles you can take to educate your young patients about their fertility options.

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