A Moment in Time: The Survivorship Care Plan and Follow-Up Care as a Standard of Care

Barbara Unell PhotoBarbara C. Unell is the founder of Back in the Swing USA® and co-author of The Back in the Swing Cookbook: Recipes for Eating and Living Well Every Day After Breast Cancer. Ms. Unell wrote this blog post in anticipation of our upcoming town hall meeting, Survivorship 360: Navigating Your Way Through the Re-Designed Breast Cancer Roadmap.

I love the new song, “3 Things,” by Jason Mraz. In fact, I love it so much, that I decided to make it the theme of this blog, using a bit of poetic license to play off of Mraz’s message. He sings about the three things that he does “when his life falls apart.” 

His words resonate with me today, as I reflect on this particular moment in time in the history of breast cancer survivorship healthcare, a field in which I have planted seeds, along with hundreds of caring volunteers, dedicated healthcare professionals and generous sponsors, for the past 15 years.  I hope that you will take a moment (3 minutes, actually) to sit back, listen to Mraz’s song and be inspired, too.

The song’s lyrics remind me of my “new life” that started in the exhilarating days of 1999, after my treatment for breast cancer, when I was focused on “changing the conversation” between physician and patient. As an author, educator and social entrepreneur who is committed to translating scientific research into practical action, I was determined to move that conversation for consumers of cancer healthcare from the anxiety-filled moments of asking, “Now what?” to the confident steps of receiving a comprehensive, personalized survivorship care plan and follow-up recommendations during and/or after primary treatment ends. Continue reading

Hear My Voice: The Hope of Many Summers After a Metastatic Triple-Negative Diagnosis

Annie GoodmanNew York journalist Annie Goodman discusses the realities of a metastatic triple-negative breast cancer diagnosis, and living her life with more hope and less fear.

 

Maybe it’s all in my head. I can’t have brain tumors. Maybe I’m just depressed and need psychiatric help.

After discovering a lump, I was diagnosed with stage IIB triple-negative breast cancer on February 29, 2012. I was 30 years old with no family history of cancer. I had a mastectomy, reconstruction, four rounds of Adriamycin and Cytoxan and 12 rounds of Abraxane chemotherapy. While in treatment, I found out I had the BRCA1 mutation. On November 30, 2012, I finished radiation and my doctor declared I was in remission.

I went back to normal life. I enjoyed having a healthy appetite again. My hair grew back. I went back to work full-time. Having cancer was no longer all I could think about. It started to become a memory, and I loved life as a survivor.

Due to the BRCA1 mutation, I had to go for ultrasounds of my ovaries every six months. My first screening was perfect. In November 2013, I went for my second ultrasound, and as soon as I got into work, my doctor’s office called: I needed to come in immediately. My right ovary was 11 cm. A normal ovary is 3 cm.  Continue reading

Join Our Annual Fall Conference From the Comfort Of Your Home

If you can’t come to our annual fall conference, Breast Cancer Today: Individual Treatments, Shared Experiences, you can still join us for the live webstream of our morning and closing plenary sessions. Read below to learn more about our webstreams.

eblastSquare400x400 copylivewebstreams copyYou may be in the middle of breast cancer treatment. You may be a single parent and can’t attend a conference far away. Other reasons make it difficult for you to travel long-distance.

At Living Beyond Breast Cancer, we understand that you may experience obstacles that prevent you from attending a national conference that isn’t within an easy driving distance or close to public transportation. That’s why we’re bringing parts of the conference to you through free, live webstreams!

Join us on Saturday, September 27, from the comfort of your own home. Watch our morning and closing plenary sessions and ask our experts your questions! Through our webstreaming, you will be able to watch:

Morning Sessions 9:30 – 10:45 a.m. (ET)

  • Triple-Negative Breast Cancer: What We Know, What We Are Learning, How You Can Help with Rita Nanda, MD (presented in partnership with Triple Negative Breast Cancer Foundation)
  • Hormone Receptor-Positive or HER2+ Breast Cancer: What’s New in Targeted Therapies with Virginia Borges, MD, MMSc
  • Metastatic Breast Cancer: Treatment Strategies with Clifford A. Hudis, MD

Closing Sessions 4 – 5 p.m. (ET)

  • Thriving! A Discussion on Living Well—Body, Mind and Soul with Virginia Borges, MD, MMSc Lisa McLaughlin, MSW, LSW, OSW-C, and Marisa C. Weiss, MD

Continue reading

Reflecting on the “Let’s Talk About It” Series Video Shoot

20140912LTAIbehindscenesOur Young Women’s Initiative recently launched two videos as part of the “Let’s Talk About It” Video Series. Arin Ahlum Hanson, MPH, CHES, manager of the Young Women’s Initiative, wrote this post about the day of the shoot and working with the young women and video crew who helped create the additions to this series.

I always have a hard time sleeping the night before running the video shoot for the Young Women’s Initiative Let’s Talk About It Video Series. Yes, since I’m managing the project my brain is swimming with logistics, which does make it hard to relax. But I mainly can’t sleep because I’m so excited. I’ve quickly learned that these video shoots are one of my favorite work days of the year. I’m excited to meet the amazing young women from across the nation who have agreed to be a part of our video project and want to share their experience to help other young women cope with breast cancer.

Each year, the video interview participants seem to have no hesitations about arriving, meeting the group of strangers running the video shoot and then quickly launching into in-depth conversations about subjects that rarely get talked about openly.

This year’s April video shoot was no different. Assembly, the video production team, arrived with a 10-member crew and quickly set up the shoot in a small hotel room. Together, we spent the next 12 hours filming. Eight young women and three healthcare providers participated in the video shoot. Some of the young women were nervous when they arrived but relaxed once the interview started. Others had fun learning new make-up tricks from our stylist. Continue reading

It’s About You: Laura Ross’ Story

emailHeader760x160IMG_6449

LBBC would like to introduce our newest guest blogger Laura Ross. Today she shares her breast cancer journey and how she became familiar with LBBC’s programs and services, specifically our annual Fall conference.

Driving on I-95 South in Philadelphia, late October 2011, I passed a billboard for Breast Cancer awareness month. “Ah” I said, “I never want to be part of that club!” One month later I would be handed my membership, and would begin a journey that changed my life.

November 18, at age 41, while snuggling my 3-year-old daughter Aliya, her head hit a hard pea sized spot in my upper right breast. Calling my other daughters, Gianna and Isabella, into the room, I asked them if they could feel it too, and indeed, they said they could. I didn’t really think too much of it. I had never even had a mammogram. I called my gynecologist and made an appointment. She too, could feel it, and scheduled the mammogram for early December.

After the testing was over, the doctor who performed the biopsy looked at me and said, “This is definitely breast cancer, when you get the results on Monday expect it to be cancer.” Uh. OK. I was completely shocked. I was completely alone. Continue reading

Getting On Track – LBBC’s Reimagined Fall Conference

emailHeader760x160Our annual fall conference features three tracks because breast cancer is not just one disease. Clifford A. Hudis, MD, chief of the breast medicine service and attending physician at Memorial Sloan Kettering Cancer Center in New York City, wrote this blog post about the reasons for these tracks and how breast cancer treatment became more individualized. A member of LBBC’s medical advisory board, Dr. Hudis will lead our morning plenary session on metastatic breast cancer. 

Hudis_lbbcblogpostGiven LBBC’s recognition that not all breast cancer is the same and not all patients need the same information, it is natural to see that the annual fall conference, Breast Cancer Today: Individual Treatments, Shared Experiences, is organized in tracks that enable participants to most efficiently focus on what they find to be most relevant. 

Not Just One Disease

Starting with oncology pioneer George Beatson’s 1896 report that some, but not all, women with advanced breast cancer responded to treatment that reduces estrogen in the body, it was clear that we confront more than one, uniform disease. The subsequent description of the estrogen receptor by cancer researcher Elwood Vernon Jensen in 1958 simply allowed us to test for what we already knew – that some cancers are more or less likely to respond to hormone therapies.

The more recent description of the human epidermal growth factor receptor–2 (HER2) and the development of effective treatments that target it added another dimension to “binning” breast cancers. With effective hormone and anti-HER2 therapies we can no longer pretend that cancer is cancer is cancer. One size does not fit all, and one disease is not the same as another.  Continue reading

It’s About You: Lu Ann Cahn’s Story

emailHeader760x1604_BlogResize

  Cahn_photo2014We would like to introduce you to our blogging series, “It’s About You.” In addition to telling you their personal story, our bloggers in this series talk about their experience with past LBBC programs and/or their anticipation for the upcoming fall conference, Breast Cancer Today: Individual Treatments, Shared Experiences. Today, NBC10 reporter Lu Ann Cahn kicks off the series by sharing her breast cancer journey and the importance of connecting with individuals who share your experiences.

I was talking to a woman who just got through her second year of survivorship. We’d made a lunch date to talk about work, business opportunities.

I’d almost forgotten she’d had breast cancer until she mentioned she was dealing with horrendous hot flashes.

“The tamoxifen is making me crazy” she said.

“How are you feeling otherwise?” I asked

” Oh fine. I just want to forget about IT and move on.”

The IT she didn’t want to dwell on was Breast Cancer…and yet we spent the last twenty minutes we had together during our meeting, sharing our experiences, listening to each other.

I wished we’d started talking about it sooner. As much as she wanted to “forget”, I could tell it was a relief for her to talk to someone who has been there; someone who you don’t have to explain too much to, so much is already understood.

Her emotions were close to the surface; which is probably why she said she wanted to “forget about it”. Tears welled up in her eyes as she talked about how terrifying it’s been, the diagnosis, newly remarried, with a teen son.

I know . I remember.

It has been 23 years since I was diagnosed with an aggressive breast cancer. My daughter was four years old. The year before breast cancer, I was hospitalized for 5 months. I had to have my colon removed because of severe ulcerative colitis. I was just recovering and feeling better when I started to feel a vague mass in my right breast. Continue reading