Hear My Voice: Remembering Us in October

SheilaJohnsonGloverSheila Johnson-Glover blogs about the importance of discussing breast cancer in the African-American community and recognizing people who are living with metastatic breast cancer.

When people hear I have stage IV breast cancer, I wonder if they automatically think I’m going to die. No one has ever said that to me, but I still wonder this sometimes. I am a stage IV breast cancer survivor, and I’m proud to say that, because after 5 years, I’m still striving and thriving. I want people to not immediately think of metastatic disease as a death sentence. I want people to understand I still fight just as hard as people with stage I, II or III breast cancer. And as long as researchers continue to develop new medicines, we still have HOPE.

I was diagnosed with HER2-positive breast cancer in September 2009 while I was still on active duty in the military. When my doctor told me I had stage IV cancer, I asked, “How many stages are there?” She said, “Sheila, you have the top one.” Is stage IV breast cancer really a death sentence? My answer would be NO.

Still, when I found out I had metastatic breast cancer, my first thought was to ask God, “Am I going to die?” As the years passed, there have been so many different targeted therapies that have been approved for treating HER2-positive metastatic breast cancer. The advances in medicine have had a huge impact on my survivorship: I’m currently on Herceptin and Faslodex, and these two medicines have been working amazingly for me. My mother died of stage IV breast cancer in August 2004, and I wish I would have known more about the disease then. I wish she had had the medicines that I’ve been on these past couple of years – maybe she would have lived longer.

I’ve met so many amazing women with metastatic breast cancer and their journeys are truly amazing, as amazing as anyone diagnosed with this disease. However, as an African-American stage IV breast cancer survivor, I haven’t met many other African-American women with this diagnosis. When my mother faced this disease, cancer was not talked about too much in our community. It goes to show that it’s a subject that needs to be addressed and discussed in the African-American community. For African-American women, our mortality rate from breast cancer is much higher than it is for any other races. We need to talk about it. Continue reading

Hear My Voice: Facing the Emotional Roller Coaster of Metastatic Breast Cancer

MBC PyschoSocial Expert Julie Larson LCSWA diagnosis of stage IV breast cancer can lead to a roller coaster of emotions, which is normal. Julie Larson, LCSW, developed this list of tips and ideas to help smooth the ride. 

The weight in the room is palpable, thick with uncertainty and fear. Later I hear undeniable hope and the unmistakable clear tone of renewed perspective. Tears swell close to the surface during intimate conversations and the roar of laughter is a quick partner to humility and grace. This is the roller coaster of emotions that inevitably accompanies a cancer diagnosis, including metastatic breast cancer. Fear, worry and uncertainty woven together with hope, renewed perspective and gratitude. Experiencing the extreme shifts is often startling and unfamiliar to many affected by metastatic disease. Yet, most of those living with metastatic breast cancer (and their loved ones) have been affected by the ride.

Often it is helpful to know these emotional ups and downs are normal. You are not alone. After all, a metastatic breast cancer diagnosis is a life-changing experience. Treatment alone often demands changes in your daily routine, shifts in professional goals and physical losses which can be challenging to reconcile. “Why me” questions and the uncertainty about the future can be overwhelming.

Finding your way through the day to day is an exercise in self-awareness, acceptance, and frustration tolerance. And yet, those with metastatic disease all over the world are not only surviving but thriving as they live with cancer. The tips and ideas below may help smooth the ride a bit for you. Continue reading

Hear My Voice: The Silver Lining in the Malignancy

Susan RosenSusan Rosen writes about staying positive in spite of her diagnosis with metastatic breast cancer. 

 

When I was diagnosed with stage III breast cancer on August 10, 2010, I never questioned the diagnosis. I never asked, “Why me?” I would deal with the diagnosis and treatment and move forward.

Not this time.

In September 2013, my cancer metastasized to my bones, liver and dura (the outer covering of the brain). After more testing, a primary thyroid cancer was also discovered.

I went through a range of emotions. I was angry, I was mad. How could this happen to me when I took all the right precautions? My oncologist reassured me that I did all I could. It didn’t matter.

When my oncologist delivered my diagnosis, he brought up an image on a computer screen. It was the image of my body, all lit up. He looked sad. 
He said the cancer has spread. He was so sorry. My oncology nurse cried. I cried. My husband looked lost.

We then needed to tell our children. My daughter is 19, and a sophomore in college. My son is 15, and a sophomore in high school. It was not easy telling them last year, as they both adjusted to their freshman years. However, we have been sharing all news, good or bad, with our kids since the beginning of this journey.

Within a few weeks we all adjusted as well as we could to this devastating news. It was time to move forward, and begin treatment. I started chemotherapy right away. I felt weak and tired, but I did not lose my hair! I am now on hormonal therapy and a bone medicine.

I am feeling fine and handling my situation well… most days. I have my moments, especially when I think of my husband and kids.  Continue reading

Hear My Voice: From Cancer Mess to Organizational Success…

Katherine O'BrienKatherine O’Brien didn’t let being messy get in the way of organizing for metastatic breast cancer advocacy, awareness and support.

I have been living with a small volume of bone mets since 2009. In some respects, I think my metastatic breast cancer shares some of my character flaws. We know that cancer represents cellular chaos—all cancers start because abnormal cells grew out of control.

I can’t say that I am out of control, exactly, but I will confess to being a messy person. Organizational skills have never been my strong suit. I have purchased many filing systems, sorters, tote boxes, but inevitably I always default to my H&P ways: Heaps & Piles. Heaps of things represent unstable stacks—assorted mail pieces, notebooks, brochures, various business cards that spring up on my desk like toadstools after days of rain. Piles have fewer shape variations and more structural stability: I have piles of books on my coffee table, piles of CDs on an end table and, of course, piles of laundry.

If I were a neater person, I would probably be a far more efficient person. But at 48 years old, I am just happy to muddle along. I am glad my cancer—so far—seems to have this same attitude. It is too disorganized and lackadaisical to do too much. Let’s face it: I am the Oscar Madison of the metastatic world, too.

I thought of all of these things yesterday when I heard Joan Lunden actually say the words “metastatic breast cancer” on television as part of a story to kick off Breast Cancer Awareness Month. In prior years, such coverage focused almost exclusively on early-stage breast cancer. They never acknowledged either the 150,000 U.S, people living with metastatic breast cancer or the 40,000 U.S. people who die from it annually. Continue reading

Hear My Voice: Moving Past Diagnosis and Scans, Finding Joy in Life

MJSWe’re kicking off our new blog series, Hear My Voice, with Mary Jennings-Smith. Mary reflects on her metastatic breast cancer journey, going from newly diagnosed to doing what she enjoys.

As I sat waiting for news of my CT scan in the patient room of my oncologists’ office, my heart was beating so fast that I could hardly breathe. Just when I thought I couldn’t endure another moment, my doctor walks in carrying a bunch of papers. I knew by the look on his face that it wasn’t good news. My mind went blank. I did hear the words “metastatic,” “bone and lymph node” but I was barely absorbing the information. Fortunately, my husband was there and he filled in some of the blanks later that day. I always have someone come with me whenever I meet with my oncologist as the stress of dealing with metastatic cancer can make it difficult to retain what is discussed. This person always took notes while I struggled to retain the verbal information.

My oncologist explained that I would need to start chemotherapy right away as the anti-hormonal medicines were not working. Before I met with him again, I had a chance to read the pathology reports of my CT scans and the tumor marker test. I brought a drawing of a skeleton to our next meeting and asked him to point out exactly where the cancer had come back. He was glad I had brought the drawing, as to read the films of my skeleton were difficult for me usually because of tears in my eyes. I was unclear if the tumors were on the outside of the bones or on the inside. He explained that they were on the inside. Continue reading

White House | Black Market Supports LBBC

Donna Headshot

Today on the LBBC blog, White House | Black Market president Donna Noce discusses the long-standing partnership between LBBC and White House | Black Market and why they continue to support LBBC, not only during Breast Cancer Awareness Month but also Beyond October…

“I feel very strongly that we use the power that we have as a brand and an organization to support something that’s really good.” Donna Noce, President, White House | Black Market

Living Beyond Breast Cancer connects people to trusted breast cancer information and a community of support. Donna Noce is president of White House | Black Market, an international fashion boutique. Since 2004, together with its sister brands, Chico’s, Soma, and Boston Proper, WHBM has donated more than $2.1 million in support of LBBC.

Over the years, WHBM has supported LBBC through the sale of limited-edition products, register donations, in-boutique events and a dedicated mailer in October. In 2010, when White House | Black Market celebrated its 25th anniversary, they also honored 25 women fighting the disease. That same year, WHBM received LBBC’s Corporate Leadership Award.

On Living Beyond Breast Cancer

When I was first learning about Living Beyond Breast Cancer (LBBC), what struck me most was their commitment to creating a place where everyone touched by the disease could go for information and support. Through LBBC, I also learned about the complex challenges facing women after diagnosis, as well as during treatment, recovery and disease management. LBBC hears and respects women tremendously, regardless of age, stage of disease, background or identity. And it gives each person a voice.

On Breast Cancer Awareness Month

We believe that it’s important to recognize the role Breast Cancer Awareness Month (BCAM) has played in raising consciousness about the disease. However, one of the many reasons we’ve remained loyal to our partnership with LBBC is that they’re doing so much more. They educate and empower women by making incredibly complex information easy to understand, and creating a community of peers, patients, caregivers and medical professionals to offer thoughtful and compassionate guidance.

This year WHBM is supporting LBBC through the sale of limited-edition products, register donations, in-boutique events, and an exciting new social media initiative, through which followers of WHBM’s social channels are encouraged to add a pink filter to their profile pictures. WHBM will donate $1 for every profile pic, up to 25K.

Beyond October

The numbers prove that breast cancer doesn’t discriminate according to a month on the calendar:

  • 98% of breast cancer diagnoses occur in women
  • One woman in 8 women will be diagnosed with a form of the disease in her lifetime
  • Six to 10% of newly diagnosed women and 30% of women re-diagnosed after being treated for early-stage breast cancer will learn they have metastatic disease (meaning that the cancer has progressed from the breast to another organ in the body)

We are deeply aware of these sobering statistics, and are honored that our year-round support of LBBC served as the inspiration for the organization’s newly launched Beyond October initiative.

As a founding corporate partner of Beyond October, we will continue to demonstrate our commitment to those who depend on LBBC’s services by providing financial and promotional support of the organization’s programs and projects – not just in October but throughout the year.

We are committed to ensuring that each and every woman who shops at White House Black Market is aware that there is a safe and trusted place she can turn to for help, information, and support.

For more information about the items available from White House | Black Market supporting LBBC please click here.

From Silent to Vocal, Invisible to Visible, Underserved to Served

2012JeanSachsHeadshotVer2WebWhy LBBC Programs Focus on Metastatic Breast Cancer in October

By Jean Sachs, MSS, MLSP
CEO, LBBC

For nearly two decades I have dedicated my professional life to educating and supporting women, men and families whose lives have been impacted by breast cancer.  Over these years I have met so many incredible people who have faced this disease with courage and grace.  Every time I meet someone living with metastatic breast cancer, her story has a profound impact on me. LBBC is and has been committed to being there for these women and men.

In 2006, LBBC learned through its groundbreaking survey of women with metastatic breast cancer what I had heard so many times from my conversations with women living with the disease.  They often felt alone, poorly understood and served. The survey’s title, Silent Voices: Women with Advanced (Metastatic) Breast Cancer Share Their Needs and Preferences for Information, Support and Practical Resources, reflected this.

Before our study, women with MBC had never been asked about their needs as they faced the reality of a diagnosis that means they will always be in treatment. The survey also told us how isolated and alone women with MBC feel within the larger breast cancer community, especially during October when the focus of Breast Cancer Awareness Month skews heavily toward those newly diagnosed or whose treatment has ended—those who appear, at least on the surface, to be doing well.

LBBC took the information shared by our MBC survey respondents and began developing programs specifically for women with MBC to educate, connect and support them. Our Annual Conference for Women Living With Metastatic Breast Cancer was founded in 2007, and specialized guides, webinars and peer support soon followed. We began to focus our October educational programs toward MBC.

Thirteen personal stories will be posted over 13 hours, written by women and men living with metastatic disease, their caregivers and healthcare professionals. The posts will appear on a special webpage on lbbc.org as well as on our organizational blog, livingbeyondbc.wordpress.com. Going forward, the LBBC Blog will feature at least one MBC focused post a month under the Hear My Voice banner.

It is my hope that this October the national conversation will start shifting to include more messages about MBC and many more voices discussing it year round. National organizations, including LBBC, have already formed the Metastatic Breast Cancer Alliance (MBCA), a group of patient advocacy organizations and industry partners seeking to improve the lives of and outcomes for those with metastatic breast cancer and their families. MBCA seeks to increase awareness and education about the disease, advance policy and strategic coordination of research funding. This group will release a landscape analysis of MBC research and services on October 13.  Together we have a louder voice and more strength to respond to the needs of those living with metastatic breast cancer.

All of this brings me back to my intertwined personal and professional commitment to LBBC- creating a world where no one impacted by breast cancer feels uninformed or alone. Our work continues.