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.

I Spy a Clinical Trial: Weighing the Benefits Against the Unknowns

Sometimes your doctor may recommend a clinical trial, a new approach that is being compared to standard treatment to see which is more effective. New LBBC Blogger Judy Weinstein writes about weighing the pros and cons of a trial she joined, ISPY2.

IMG_5627When I think back to the weeks following my breast cancer diagnosis, I picture myself in the middle of a tornado moving along at a frightening speed. One day I was pondering what to pack for my upcoming 25th wedding anniversary trip to Italy and the next I was in a swirl of medical appointment mania. I had to choose a hospital, an oncologist, and a surgeon, endure a slew of medical tests, take it all in emotionally and then break the news to close friends and family. Along the way, as all newly diagnosed cancer patients do, I took a crash course in understanding breast cancer and my particular type so I could make informed choices about my treatment. Just the vocabulary alone was enough to make my head spin! Words like triple-positive, HER2-positive, and neoadjuvant therapy were thrown around and I needed to understand it all. Just when I thought I had it all figured out, another new word was put in front of me that I needed to learn: ISPY2.

No, this was not the fun game you play in the car when you are bored and you say, “I spy with my little eye something blue,” and the other person has to guess what you are seeing. ISPY2 was a Phase II medical trial that, because of the exact nature of my cancer, I was eligible to be a participant. Questions came flooding in. Aren’t trials for people who are dying and have no other options? I know that trials are important to advance research but do I want my body to be the guinea pig? How could I live with myself if I found out the experimental medicine I was on actually doesn’t work, or has long term side effects that the doctors didn’t find out about until years later? Facing chemotherapy was scary enough. Did I want to be a part of a trial that had so many unknowns attached?

I learned that the goal of the trial is to pinpoint how each individual tumor grows and target treatment to a specific tumor type.  Today, most women affected by breast cancer receive standard chemotherapy. Some breast cancers respond to this treatment. Others do not. This study screens promising new targeted medicines that could increase success rates while reducing side effects. After much reading, talking to my doctors and to LBBC, and pondering it deeply with those closest to me, I decided to take the plunge…. well, only halfway. I found out that I could be screened for the trial, told which drug I would be getting, and THEN decide if I wanted to continue. At any point in the trial I could opt out. Continue reading

Volunteer Spotlight Q&A: Caryn Kaplan

CarynPhotoWe’re honoring National Volunteer Week 2015 with a Q&A with Caryn Kaplan, who’s volunteered for LBBC for 17 years. Digital Media Specialist Josh Fernandez interviewed Caryn about her interest in LBBC, what she loves most about volunteering and why she thinks others should volunteer.

 

Josh: You’re a longtime volunteer for LBBC. Why do you choose to donate your time to us?

Caryn: When I was first diagnosed 17 years ago, I used to crawl into my bedroom after chemotherapy and go online to look for any type of information that could help. I stumbled upon LBBC. The resources, even back in their infancy, were the best I had found. I knew it was a trusted source of information, and I knew this was the organization for me.

I started attending community meetings first and then I just felt a connection to the organization and the people who work there. I knew the fit was there. I knew it very the very beginning. Their arms were always outstretched and they always had an answer to the questions I had. Volunteering seemed like the least I could do.

Josh: What are some of your favorite activities to do as an LBBC volunteer?

Caryn: I do many activities for LBBC. Each one has its own special meaning to me. I enjoy coming into the office and helping during office hours. I enjoy attending events and representing LBBC in speaking engagements at places like Fox Chase Cancer Center. I spoke for the Combined Federal Campaign (CFC) for a few years.

I love doing the Breast Cancer Helpline. I love being an empathetic listener for the callers and giving them resources. Some need to really get ‘it’ out of their system. Others just need resources and a place to turn. I just did the Hear My Voice : Metastatic Breast Cancer Outreach Volunteer Program, which is going to be a great program – it’s already in action as we speak. It’s a wonderful way to spread the word about the need for research and creating more public awareness of what metastatic breast cancer means. I like any type of advocacy work I can do, especially if it’s for LBBC. Continue reading

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

Word Associations: Breaking the Bonds between “Palliative Care” and “Hospice”

Don S. Dizon, MD, FACP, regularly blogs on ASCO Connection, where this post originally appeared. Meet Dr. Dizon at our Ninth Annual Conference for Women Living with Metastatic Breast Cancer in Philadelphia, PA.

dizon_don 2012Mom. Dad.

Happy. Sad.

Friend. Trust.

I remember playing this game. A friend would say one thing, and then I would say the first thing that came to my mind. For some reason, it would pass the time. I remember how some words would spark an emotion or a memory. Sometimes happy, sometimes not so happy. But, playing that game was one of the first ways I learned the power of words.

I started thinking about this one day when a group of colleagues were discussing palliative care. Despite how we all believed in the benefits of palliative care, we each recalled experiences where the mere mention of those words to a patient caused them to become defensive, even angry.

“I remember taking care of an older woman,” someone had said. “She was on her fourth line of treatment for metastatic breast cancer, and her scan had showed some progression. She had been having issues with pain as well, and we had to adjust her medications several times in the past month. I mentioned that she would benefit from palliative care, and I was surprised about how upset this made her. She accused me of giving up on her, telling her she was dying. It was really upsetting.”

Hearing that story made me more convinced that the associations of palliative care have not evolved, even as the evidence that palliative care benefits patients far before they are deemed terminal has accumulated. It made me think, perhaps the way to increase utilization of this service is to sever the “palliative care means hospice” connection. Yet, how to do that? 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. 

IMG_3219

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.

Everyone Deserves Quality Health Care: On Writing “Breast Cancer inFocus: Getting the Care You Need as a Lesbian, Gay or Bisexual Person”

Josh_blog photoWriter and Web Content Coordinator Josh Fernandez writes about authoring Breast Cancer inFocus: Getting the Care You Need as a Lesbian, Gay or Bisexual Person, and why creating this resource was important to him and LBBC.

I came out to my primary care doctor when I was 16 years old.

I had come out to a few close friends in the weeks before, and they didn’t handle it well. After that, my anxiety gradually increased. I had been meaning to make a doctor’s appointment for other reasons, so this anxiety pushed me to schedule a visit.

There were words before and after “I’m gay,” but I couldn’t help but focus on those two. After I said them, my stomach and chest felt as if they twisted into knots. My doctor’s face didn’t change; she maintained her relaxed facial expression and asked me questions about the anxiety I had. We then talked about what was going on. Before the end of the appointment, she told me not to hesitate to contact her if I had other questions or concerns, or if I needed someone to talk to.

My doctor was affirming, which was something I really needed at that time. That’s not always the case. Among the different barriers and disparities lesbian, gay, bisexual and transgender people face when seeking health care, getting quality care that’s sensitive is a major one. Forms in the doctor’s office or a hospital sometimes offer very limited ways to describe your relationship or gender identity. Providers may make assumptions. Biases may directly or indirectly impact a provider’s approach to care.

This is why it was important to me to write Breast Cancer inFocus: Getting the Care You Need as a Lesbian, Gay or Bisexual Person for Living Beyond Breast Cancer. There are advocacy organizations and other institutions working hard to educate, inform and train healthcare professionals on adequate care for LGBT people. Things are improving – just look at the Healthcare Equality Index – but there is still much work to be done. LGBT people with breast cancer cannot afford to wait for this work to be finished before receiving care. I wanted to create a resource that could empower and help LGBT people while that systemic work continues. I also wanted this publication and related online content to include personal stories of LGBT people affected by breast cancer, so that readers know they’re not alone. Continue reading