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: Getting the Support You Need as a Young Mom With Metastatic Breast Cancer

photo-1terriYoung mothers living with metastatic breast cancer face unique hurdles and uncertainty. Terri da Silva provides insight on these issues and shares resources and tips for supporting your family while living with this diagnosis. 

Living with breast cancer is tough. It’s especially difficult when you’re a young woman trying to navigate your way through adulthood, building a career, starting a family, and then you find out you have metastatic breast cancer. The kind that rarely goes away. The kind that requires lifelong treatment. The kind that is terminal.

I was diagnosed with metastatic breast cancer in 2011 at the age of 37 when my daughter was only 2 years old. I had no previous breast cancer scares. No family history. I was otherwise healthy. Suddenly my life was flipped upside down.

Young moms with metastatic breast cancer face a unique set of hurdles. Unlike most breast cancer patients whose treatment has a prescribed end date, those of us with stage IV metastatic disease live our lives going from one treatment to the next. Praying the treatments will slow down or stop the progression of our disease long enough so we can see our kids learn how to ride a bike, go on their first date, graduate from school. Praying the side effects from our treatment won’t cause us to miss soccer games and parent-teacher nights. Praying our loved ones won’t tire of supporting us year after year after year. Praying for the strength to make the most of each day we are still here. Continue reading

Hear My Voice: How I Manage Scanxiety

LBBC Board Member Amy Lessack writes about how she manages her emotions before and after she gets scans.

“You must be freaked out every time you get a scan and have to see the doctor.”

If you are a breast cancer survivor or someone living with metastatic breast cancer, this is something that well-meaning people say because they probably don’t know what to say.

The obvious answer is, of course, I am concerned and worried. You pray to whomever, whatever to get the clean scan and the OK from the doctor that you are good for 6 months, a year, or even more.

No one ever asked for breast cancer. I certainly DID NOT invite it in my life, and it needs to go. However, that is not my journey.  I continue to be on the roller coaster of vacillating between the 3-month and 6-month of scans and back to 3-months. So how do I handle it, manage my emotions and get through it? I get through using the following seven steps before every scan:

#1           I had to make a conscious choice – “scans are my friend.” Why are they my friend? Because they are the only things that can “see inside my body” and help the doctors and me cheer when things look good, and research or make a plan when or if necessary.

#2           I now schedule my scans on Mondays and doctor appointments the Friday after the scan. This is so that I don’t have to wait to hear the results knowing that it takes 2 – 3 days to get them.  Continue reading

Hear My Voice: Relationships, Faith and Being Declared NED

Serenity KislingSerenity Kisling blogs about navigating her relationships, her strong faith and being declared no evidence of disease.

 

As I write, it’s the first day of 2014’s Breast Cancer Awareness Month. I’ll be honest: now that I’ve been declared NED (no evidence of disease), I don’t want to watch the Today show’s #PinkPower, or think about cancer. I am so traumatized by the last 7 years, and wondering if I was going to see my son’s third, fourth, fifth, sixth and seventh birthdays.

However, I want to reflect on my journey. Despite what I have experienced with my health and my family, I got through this journey with metastatic breast cancer through faith, laughter and by living my life.

First, let me say that the breast cancer journey sucks, no matter if you are lesbian or straight. I was initially diagnosed with stage III ER/PR-positive breast cancer in 2008, at age 35. I had a 2-year-old son and a different partner at the time. At that point, my relationship with my partner was rocky, and she was not very emotionally supportive while I had breast cancer. She had no idea what I was going through: being bald from chemo, becoming so sick because of the chemo that I could not drink or eat anything, ending up neutropenic, dehydrated and in the hospital for a week and developing pneumonia.

In 2009, my then-partner and I celebrated when oncologists declared me in remission. We thought life would go back to normal and not the “new normal” commonly associated with post-treatment — just “normal,” period. It seemed like I was better after finishing treatment. I even went back to my hardcore workouts. But then I started feeling fatigue, and with that came insomnia. Life became miserable for various reasons, and I decided to divorce my partner. It was the hardest decision I have had to make thus far in my life. Through all of this, maintaining my positivity (though hard at times) and my faith got me through this major life change.

Something that made me depressed was that the oncologist who declared I was in remission did not discuss preserving my fertility before I proceeded with chemotherapy, and now it’s too late. I had been in survival mode, I had a beautiful son, and having another child hadn’t crossed my mind. I wish now I had frozen my eggs. I would have loved for my wife to carry my child. Even though I live with this regret, I have come to realize that it may not have been meant to be, and I must accept this and cherish my one beautiful son. Continue reading

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: 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

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.