Encouraging, Educating and Empowering By Sharing My Metastatic Breast Cancer Story

Update, June 21, 2016: Sarita Joy Jordan passed away on June 19, 2016. Beloved by so many, she was a member of Living Beyond Breast Cancer’s 2015 inaugural Hear My Voice: Metastatic Breast Cancer Outreach Program, and, prior to that served on LBBC’s Breast Cancer Helpline and volunteered at many LBBC programs. Sarita spoke frequently to those in her local Philadelphia community including the media, medical students, and the general public. She used social media to reach a broader community through blogs and a Facebook page she created. An information seeker by nature, Sarita attended many national and local conferences gathering knowledge that she then shared with others.

The LBBC staff wanted to reshare this blog post Sarita wrote last year for the Beyond The Breast Campaign. It provides a sense of what a remarkable person she was and how she lived her life with joy and commitment. We will miss her.

Sarita Joy Jordan

In December 2005, I attended my first educational conference about breast cancer. The topic was about fertility in young women while going through a breast cancer diagnosis and treatment. I remember it like it was yesterday. I sat there and just listened to all that was going on around me. I had just had chemotherapy treatment that week and wasn’t feeling 100%.

There was a guest speaker who told her story. Her journey through breast cancer was incredible. Through all the surgeries and treatments she endured displayed an insurmountable amount of strength. I remember sitting there thinking, “I don’t have a story like that, WOW!” I had just started my journey and was in a fog as to what living beyond breast cancer should look like because I was a “newbie” in the fight.

11935020_10207730658931621_429639499760256324_nAs I continued on my path, growing through each step of the process, I began to think maybe I do have a story. There are so many things that go on that are ‘not so pretty in pink’, that no one prepared me for. At each conference I attended, trying to figure out my new normal, I learned something new to add to my zest for life. Somewhere in this process I began to blog from time to time and shared my story with almost toanybody who would listen. I didn’t want anyone to have to experience the depression, fear, anger, loss friendships due to their inability to cope, and loneliness. These are the things that all cancer patients go through behind closed doors. Eventually I was able to retire from my job and define my purpose and eagerness to help others by becoming a breast cancer advocate. I learned how to tell my story to encourage, educate and empower others to fight through a breast cancer diagnosis.

SO, I was asked, why do I tell my story? Honestly, I had to think: Why do I tell my story? There are several reasons. I choose to share my story so that others don’t feel they are alone. I tell my story because I am an African-American and my community needs to be able to relate to the messenger. I tell my story because I was stage I at my initial diagnosis and now LIVING with stage IV. I tell my story because I will celebrate 10 years of survival this month and I know this gives other women hope. I tell my story because I’ve learned that little money is spent on research for metastatic breast cancer and I’m running out of time to have my voice heard. This is why I am so grateful to be a Hear My Voice Outreach Volunteer with LBBC: to participate in community events and advocacy for metastatic disease. I tell my story for those that are no longer able to tell theirs.

12002748_10207917950653797_566816831184771998_nLastly, I tell my story for my children. They will always be able to access who their mom is as a person who truly cares, as a survivor, as a fighter, as a friend, as an advocate and someone who has used her own journey to try to save lives. In closing, I realize I do have a story. Each and every on of us does. Sharing is caring!

Connecting You to the Many Voices of Those Living With MBC

Catherine Ormerod, MSS, MLSP, is Vice President, Programs and Partnerships at Living Beyond Breast Cancer. responsible for overseeing the implementation of all direct service and partnership initiatives in support of Living Beyond Breast Cancer’s mission. 

Cathy (1)_0Last year as part of its long-standing commitment to those living with metastatic breast cancer (MBC), Living Beyond Breast Cancer launched an advocacy program called “Hear My Voice.” We introduced the program on Metastatic Breast Cancer Awareness Day, the one day in October dedicated to the raising awareness of the needs and voices of people with MBC.  Because women living with MBC will always be in treatment, their outlook and concerns are different from women treated for early-stage breast cancer.  As an organization that represents all people impacted by breast cancer, LBBC is committed to building public understanding of the different stages of the disease.

The first initiative in this program highlighted the many voices of MBC in a blog carnival. On October 13 we posted one blog post every hour, on the hour, for 13 hours. These diverse and riveting stories from women and men living with the diagnosis quickly became our most widely read stories on the blog.

We launched the second phase of the program — the Hear My Voice Outreach Volunteer Program — in the spring of 2015. This  10-month volunteer commitment teaches and refines participants’ communications skills and asks them to find others with MBC in their communities and connect them to resources and information.  We also ask the volunteers to create projects that they work on during their time as volunteers. In addition, each of them participated in an online public education campaign about MBC in September called #BeyondtheBreast. Through strong images on social media, this campaign made the point that metastatic breast cancer is cancer that has spread to other parts of the body.

“We at LBBC learned during the past year that the commitment of our volunteers is both deep and diverse.”

With all of this, we at LBBC learned during the past year that the commitment of our volunteers is both deep and diverse. Their activities and actions have far exceeded the expectations we set for them in the program.  They have sat on research panels, pitched their stories to local and national news organizations, planned rallies, written books, launched support programs, and met with legislators to demand more research dollars are spent on understanding the process of metastasis.  And they connected hundreds to information and resources, breaking the isolation that study after study confirms is experienced by so many with MBC.

MBC blog feature HMV volunteers 2015

Our Hear My Voice Outreach Volunteer Class of 2015.

Today, as we recognize Metastatic Breast Cancer Awareness Day, we will highlight some of our most moving blogs written by those living with advanced breast cancer from this past year and our previous blog carnival (see below). Our volunteers continue their work in a stunning variety of ways to push forward change.  And because many others are focused on changing the trajectory of MBC — volunteers, nonprofit organizations, researchers and others — we have the opportunity to move the conversation about MBC forward and thus move closer to achieving our shared vision: ending metastatic breast cancer.

We began the program with 31 volunteers and last month lost a devoted volunteer, dear friend and powerful voice to the disease. We dedicate our efforts this month to the memory of Marcia Taylor.

Please join us and share what you learn. Be a part of expanding the conversation around breast cancer and saving lives. Find out more about MBC, research and resources.

Read a selection of powerful and inspiring stories of women and men living with MBC:

Paying it Forward: Scarlett Gibbs’s story written by Nicole Katze, LBBC’s editor and manager, content development

The Hope of Many Summers After a Metastatic Triple-Negative Diagnosis: An inspiring post written by the late Annie Goodman

Living the Life of Cliches (That Are True): Scott Cotlar writes about common sayings people with MBC hear many times over.

How I Manage Scanxiety: Written by LBBC Board Member Amy Lessack.

Getting the Support You Need as a Young Mom With Metastatic Breast Cancer: The late Terri da Silva on support for young moms living with MBC.

‘You Beat It By How You Live: The Late Norma Pitzer-Kelly writes about late ESPN anchor Stuart Scott’s approach to coping with advanced cancer.

Thriving, Despite Almost 2 Decades of Breast Cancer: LBBC Writer and Content Coordinator Erin Rowley profiles Sherry Lawson, who discusses living with metastatic breast cancer and navigating healthcare as an out lesbian woman.

Getting Off the Couch for Wellness: Sarita Joy Jordan writes about finding a passion for exercise and maintaining healthy living practices after an MBC diagnosis.

When Breast Cancer Awareness Is Every Month: This blog post, which kicked off our #BeyondTheBreast Campaign, was written by LBBC Board Member Ayanna Kalasunas.

From the Start: De Novo Metastatic Breast Cancer: Blogger Beth Caldwell on finding out she was de novo metastatic, coping with diagnosis and the benefits of community.

When the Breast Cancer Went Beyond the Breast: Mandi Hudson’s blog post is about discovering she had recurrent stage IV disease.

The Long-Term Merry-Go-Round: 13 Years With Metastatic Breast Cancer: Award-winning blogger Jill Cohen on living long-term with MBC.

Communication, Trust and Dignity in Metastatic Breast Cancer Care: Laura Snyder’s blog post bout making treatment decisions and clear communication in health care.

My Climb is a Gamble

Concluding our blog series for Beyond the BreastLesley Glenn writes about preparing for her climb of Mt. Whitney, which she’s attempting today (we’re rooting for you, Lesley!). She reflects on how the preparation has informed her approach to living with metastatic breast cancer. Take action with the Beyond The Breast Campaign.

As you are reading this, I am attempting my first climb up Mt. Whitney, the tallest mountain in the lower 48 at 14,505 feet.

The stats say that 2 out of 3 people who attempt the mountain on their first try, don’t make it.  I am going with two of my girlfriends. You do the math. All of us have been training equally.  Not one of us has an advantage over the other.  We each have the desire, tenacity and perseverance to conquer the mountain.  We each want our summit experience.

IMG_3340But what we don’t know is how each will respond to the high altitude. Or what weather system might be waiting for us at 10, 12, or 14,000 feet. No matter how optimistic, how much we have trained, or are prepared for this climb….

…It’s a crap shoot – something that is random, not based on skill.

All of us may summit, two of us, one of us…. or maybe none of us.


It’s just like stage IV metastatic breast cancer – the incurable breast cancer.

You’ve heard these stats.

  • 1 in 8 women will be diagnosed with breast cancer.
  • approximately 30% of all women diagnosed with early-stage breast cancer will go on to have metastatic disease regardless of treatment.

But do you know these figures?

  • Approximately 40,000 women and men die of metastatic breast cancer every year in the US, and this number has not changed meaningfully in 40 years. (1) Break this down to #110 daily.  Yes, daily.
  • The median survival from diagnosis with metastatic breast cancer is 2-3 years, and this number has not changed meaningfully in 20 years. (2)
  • About 24% of patients with metastatic breast cancer will be alive 5 years after diagnosis.(3)

Living with metastatic breast cancer is also like climbing a tall mountain.

It’s a crap shoot – something that could produce a good or bad result.

In other words, some of us might live a long life (summit). But statistics show most of us will die from the disease. (We won’t make it to the top.)


My climb is a gamble.  My life is a gamble.


Yes, I know…..I hear it all the time.  “Everyone’s life is a gamble.”  It’s true.  But the odds are more against me than those who don’t have a metastatic cancer diagnosis.

When I come back down off of the mountain, my hope is that I will be able to share with everyone about my summit experience.  But if I’m not able to, then I will share with you about my journey in trying to get to the top…..the challenges, the victories, the moments where I wanted to quit, and the junctures where my dream to summit drove me forward.

As is my  intention to share my journey in living with metastatic breast cancer.   The good, the bad, the ugly, the inspirational….the reality.

Lesley is a wife, mom, artist, writer and an avid hiker. Since January of 2015, she has hiked over 40 trails, and climbed up 10 mountains. She has been living with stage IV disease since May 2013, and is currently stable. She just turned 50 years old. Lesley also runs the #voicesofMBC blog and tells her own authentic story of thriving with cancer at www.livingauthenticallylesley.com

Stats: Special thanks to MET UP – MBC Exchange to Unleash Power for these statistics and being a voice for the metastatic community. You can find them here on Facebook.  

  1. Metastatic Breast Cancer Alliance Landscape Analysis (2014), p. 8 http://mbcalliance.org/docs/MBCA_Full_Report_Landscape_Analysis.pdf
  2. Metastatic Breast Cancer Alliance Landscape Analysis (2014), p. 8 http://mbcalliance.org/docs/MBCA_Full_Report_Landscape_Analysis.pdf
  3. American Cancer Society, http://www.cancer.org/acs/groups/content/@research/documents/document/acspc-042725.pdf

Refusing to Be Silent

Kahron Palet is a Hear My Voice Outreach Volunteer and the creator of this powerful video below. In the video, she shares her story about her diagnosis with stage IV disease and asks you to get educated and support research. Learn how you can support people living with metastatic breast cancer by joining Beyond the Breast and taking action.


Just Beyond Our Reach

Lori Tragesser blogs about living her life after a stage IV diagnosis and having hope for advances in research and the larger breast cancer conversation. Support people like Lori. Join the Beyond The Breast Campaign.

I never dreamed that I would be here…in this moment. My story…beyond my wildest dreams.

Breast cancer beyond my breasts.  When I was first diagnosed with breast cancer, I didn’t even know it was possible to have breast cancer go beyond the breast.  But on August 27, 2014, at 43 years old, I joined some 150,000 U.S. women and men in a journey beyond our control.


I am blessed beyond measure with the people in my life.  I am wife and a mother, a daughter and a sister, an aunt and a niece, a friend and a co-worker.  My husband and I are raising four teenage boys and a middle school-aged daughter.  Our lives are sometimes busy beyond belief, but they are everything to me.  My heart breaks for them.

When you are stage IV, you learn to look beyond what you can see.  We all have a timeline with no real numbers on it.  But when your cancer has metastasized, you are suddenly holding that timeline in your hands.  No numbers. Only an average of three years. What does that mean?  How long is that?  There is no time to waste.  Life is found somewhere beyond our doubts.

I have to live beyond my limits. This isn’t day-to-day life anymore.  With ongoing infusions and injections, my body changes.  Exhaustion hangs on my shoulder.  My stomach battles me at will.  Then there are all the other side effects that come and go as they wish.  But there still is so much I want to do and see. So I seek to find sustainability and balance for myself. I teeter totter between pacing myself through my treatments and doing as much as I can with my friends and family.

I found myself beyond scared.  I knew there wasn’t time to waste dwelling on “poor me.”  I wanted everyone to hear my voice. I quickly found that I was not alone. Our voices are being heard as the landscape of our prognosis is ever-changing. But sadly, approximately 110 of my stage IV sisters are still dying every day. We need more.  Research does continue to make remarkable advances in treatments, but they can only do this with more funding.  With good news always on the horizon, I don’t lose faith that the cure is just beyond our reach.

I never dreamed I would be here…with cancer beyond the breast.

Read more of Lori ‘s story on her blog, Thanks for the Mammories.

Dealing With Change After Diagnosis

From the moment she was diagnosed with inflammatory breast cancer, Adrian McClenney dealt with a rollercoaster of change. She writes reflects on her journey, including life after her diagnosis of stage IV. Learn how you can support people like Adrian through our Beyond the Breast Campaign.

I am a wife, mother, grandmother , sister and friend. On May 19, 2011, I was diagnosed with inflammatory breast cancer. My treatment regimen consisted of me completing 16 cycles of chemotherapy treatments, getting a bilateral double mastectomy and 37 radiation therapy treatments. I finished treatments in March 2012, which is when I was considered no evidence of disease (NED).


In July 2012 I had some issues with with my ovaries. After medical screenings, it was then suggested that I have a hysterectomy. I had the surgery and the surgery went well. I had a few minor complications after the surgery which delayed my healing. It can take anywhere from 6-8 weeks for healing after this particular surgery, but it took me about 12 weeks because of minor complications.
Being diagnosed with a deadly disease such as breast cancer changes your life in ways you can’t begin to imagine.
I remember sleeping a full night sleep, which was about 7 to 8 hours. Now, I’m sleeping only 2 to 3 hours a night, if that and that has been going on since 2011. There are many things in life that happen completely unplanned (much of it we don’t even want to happen) but we adjust, regroup and keep pushing forward.
My daughter was in 4th grade when I was diagnosed with stage IIIB breast cancer. My son had just graduated high school and started his first year of college. I attended PTA meetings, football games, birthday parties, family trips, family dinner dates and just plain old mother and son time with my son. I feel like my daughter is being cheated out of time with her mom because I was unable to attend her dance practices, cheerleader practices, school events, family events, fixing her hair, shopping and so much more due to this deadly disease. I worry about my daughter more than anything in this world. No one can love her like me.
There are so many things that changed with my day to life especially my energy. Many things changed tremendously with my husband and me. He cooked dinner, cleaned our home, he did laundry and worked 60 hours a week at his job. I may be wrong for saying this but there are many days I would look at my husband and actually feel sorry for him and feel like he deserved better. I say this because there are so many days where I don’t want to talk yet along hug or kiss.
As months past I tried very hard to get my life in order. I would attend therapy treatments to help me move forward. The psychiatrist that I saw on a weekly basis felt like I was doing quite well under the circumstances.
Moving forward and healing quite well I was hit with yet another devastating blow. In July 2014. I was devastated when I was re-diagnosed with a metastasis of my original breast cancer diagnosis.  The cancer has now spread to my neck, chest wall and pelvic area. To hear those words made me very sad. My oncologist said to me, “Unfortunately Mrs. McClenney you will be doing chemotherapy for the rest of your life.”
Life as I know it has completely been turned upside down. At this time it is hard for me to even handle a simple load of laundry, get the mail, cook a simple meal or even drive my car. These simple things make me feel as if I have ran miles. Marathon miles.
No matter what I refuse to lose. I am tired every day, but it is my duty to fight like a big girl. I face all my the challenges with a smile. I have a family that needs me but loves me more. At the end of the day I am EXHAUSTED and I may not be the same but I refuse to not fight back. Some days the most I can do is shower and read; with those days, I feel as if I have conquered the world. If I could leave you with any words today it would be to know your family history and most of all know your body. And most importantly, you’re not alone!

Lost and Found: Passed Time and Gained Purposes From Early-Stage to Metastatic Breast Cancer

Long-time LBBC volunteer Caryn Kaplan reflects on what’s she’s lost and gained from her initial diagnosis to a re-diagnosis of metastatic breast cancer.Join Caryn in our Beyond The Breast Campaign.1036BC1E-98A5-493F-9CA2-70A82FC13EA7
So much time has passed since my first diagnosis of breast cancer, which was T1N1, infiltrating ductal carcinoma, ER-positive, HR-negative. That was 17 years ago. At that time I had a lumpectomy followed by chemo and radiation. My kids were so young at that time, but I shared with them gingerly what they needed to know.

Passed…. Losing that year and watching my children grow, my husband changed-becoming a caretaker of both me and the kids.

Passed… Losing control of what I could not change, while working full time

Gained… Finding my inner strength!!

My second diagnosis, reoccurrence of the cancer about 6 years later.  This time mastectomy, reconstruction, followed by chemo.

Passed….another year lost in the haze.  More time lost with my kids and husband. Still working full time, my husband took charge once again.

Passed.. My fear of reoccurrence.

Gained.. The knowledge of new drugs introduced, to help with the side effects.

Gained.. Peaking my interest in helping others touched by cancer.

My third diagnosis, metastatic breast cancer, approximately 6 years later. Mets to my liver and bones. This time my life has totally changed. I decided to stop working and devote myself to my family, taking care of myself, and helping others.

Passed…  Feeling of insecurity.

Passed… Now, although my children are grown,  not being present in their life.

Gained..My passion fulfilled.  Giving much of my time back to those touched by breast cancer.  Helping those in need of a person to talk to..Living Beyond Breast Cancer’s Breast Cancer Helpline.  Being an advocate to help raise awareness of Metastatic Breast Cancer. Fighting for more funding to help research. I have never been so fulfilled by all the volunteer work I do.

Gained….Thanking my breast cancer for molding my life and helping me find what I always wanted to do, working for the “greater good”, helping others and fighting for more research.