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

White House | Black Market Paint Your Profile Picture Pink

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White House | Black Market‘s philanthropic commitment to LBBC has allowed our organization to grow and expand in a way that now allows us to reach more women in need of our services than ever before.”
Jean Sachs, MSS, MLSP, CEO, Living Beyond Breast Cancer

As we continue to turn the calendar pages during this beautiful month of October, we are reminded daily that this is the month dedicated to breast cancer awareness.  How can you not notice – pink ribbons, pink building tops, pink fountains, pink toilet paper, pink professional sports teams…it’s a virtual sea of pink.  As an eight-year breast cancer survivor, it is particularly striking.  Most frustrating is to see items marketed during October with pink ribbons and to read the packaging and see that no money goes towards breast cancer research or support.  This is simply a marketing tool that companies use to sell their products.  This is an exploitation of all of the people who have experienced breast cancer.  I urge consumers to read the packaging and see where your money is going, don’t fall into the pink washing trap.

I have been actively involved with Living Beyond Breast Cancer since my diagnosis at age 31, while pregnant with my son, Hunter.  After I was diagnosed they helped me to navigate my options for reconstruction.  I became a helpline volunteer for them a few years ago and I volunteer whenever I am able.  I am currently off of the Helpline while I enjoy my children – 11, 8 and 1.  I am thankful for my life after breast cancer and for all of the support I received from LBBC.

A long time supporter of LBBC is White House | Black Market.  They, along with their sister companies, have donated over two million dollars to LBBC to fund its mission and programming!  The dollars they say they will donate, they DO donate.  They support women.  That is a statement in itself.  It is refreshing to run into a company that not only cares about their sales, but they care about the women who are their customers.  They have done many beautiful ad campaigns celebrating women who have been affected by breast cancer.  Each year they have products for sale and a large portion of the selling price is donated directly to LBBC.

This year White House | Black Market has committed to donate up to $25,000 though their “Pink your Pic” campaign.  It’s a simple way to show your support for breast cancer survivors while raising money for a great organization!  I kindly ask you to take a moment, follow the link below and Pink your Pic as a show of support for LBBC, White House Black Market and most importantly, women who have been affected by breast cancer.

Add pink to your Facebook profile pic and White House | Black Market will donate $1 to LBBC, up to $25k! Click here to get started! 

Weathering Through The Darkest Moments

post 1Today we would like to introduce Dana Donofree, LBBC friend and supporter but first time LBBC blogger! Dana’s story will span three blog posts as she shares her story and how her breast cancer journey impacted her life and career so be sure to check back to learn more! 

In the weeks leading up to my 28th birthday, cancer was the absolute last thing on my mind. I was, after all, putting together the last-minute preparations for my wedding and planning a trip back home to Ohio for my bridal shower. My career in fashion was taking off, and I was starting to realize how happy and lucky I was. Plus, I was young, taking care of myself and doing all the “right,” healthy things I would read about.

Oddly after several conversations with my best friend and sister about finding lumps in their breasts, that turned out to be benign, I guess you could say I must have had a heightened awareness to checking my breasts. It dawned on me that I too should do a self exam, but I didn’t, I had just been to my annual check up and if there was something there the doctor would find it, right? Well, it wasn’t until one day in the shower, when my wrist brushed against my armpit…yes, my armpit, that I even noticed a lump. After the initial shock of finding it, I sort of shrugged it off. My friend’s turned out to be nothing. I was going to be fine, too.

Only I wasn’t. The day before my birthday, surrounded by family, friends and bridesmaids I got the news. Invasive ductal carcinoma. Triple positive. I was staring down multiple surgeries, chemo (!) and all of the what-ifs that come along with the cancer. Everything in my life changed that day.

Obviously, my first move was to get ready for the grueling treatment and make sure I was in the best shape as possible. I was after all training for my wedding day and eating healthy and working out. I continued working my design job and tried not let cancer run my life. The May wedding got postponed, but my fiance, Paul, remained by my side throughout the whole ordeal. I got a bilateral mastectomy, spacers, reconstruction (though I opted out of nipple reconstruction). I played through the pain, I weathered the darkest moments the best I could, and I got myself involved with young survivor support groups.

Those groups were vital to my well-being. They helped me realize I wasn’t the only 20-something losing my breasts to this awful disease. They made me laugh, held my hand through the down days when I was feeling anything but beautiful and they helped me understand all of my emotions and the chemo side effects. It became such a part of my existence, I made it a point, once I recovered, to stop any woman I spotted sporting a headscarf, hear her story and pass along words of encouragement. They are also the reason why I am so supportive of organizations like Living Beyond Breast Cancer. LBBC provides a beacon of light in the cancer darkness, guiding women to resources and support networks to assist them in finding the right match to help with their treatments and recovery

Dana was diagnosed with triple positive, infiltrative ductal carcinoma at 27. She currently lives in Philadelphia with her loving and super supportive husband. They love hiking and biking when the weather allows for it, and dancing and yoga to stay healthy! She fills her days working on AnaOno, a lingerie line for breast cancer survivors, and loves every moment of it! 

Hear My Voice: Living the Life of Clichés (That Are True)

LBBC Blog - Scott Cotlar%27s PhotoScott Cotlar writes about living by common clichés for people affected by metastatic breast cancer.

When I was first diagnosed with metastatic male breast cancer, I was not prepared to make any major changes in my life. There were just a few small lesions in my lungs. I was fully functional, working full-time as an attorney and had no interest in changing my daily routine.

That was about 6 years ago. Fast forward to today – lesions in my lung are “too numerous to count” according to the radiologist’s report; 5 bouts of gamma knife radiation of the brain for a total of 13 lesions treated; radiation to most of my spine; and now large metastatic lesions in my liver. Even with all of this, my good quality of life did not change until…a lesion on my tibia (a bone between the knee and the ankle) gave me an “elevated risk for fracture,” requiring that I wear a leg brace and walk with a cane.

The lesion to my tibia was the game changer. All of a sudden, my quality of life was deeply affected: the simple act of walking was no longer quite so simple. I felt an urgent need to “get my affairs in order.” As I write this blog I am preparing for chemotherapy, which I have done my best to avoid for the past 6 years, taking advantage of any hormonal or targeted therapy that I could get my hands on. I am finally starting to feel like a “real cancer patient.” Continue reading

Hear My Voice: How Far We’ve Come and Where We Need to Go

MBC Medical Expert Julie Gralow MDJulie Gralow, MD, blogs about the advances we’ve experienced in treating and managing one subtype of metastatic breast cancer, and calls for more support in research and care for people affected by the disease worldwide.

 

Substantial advances have occurred in the field of breast cancer during the 20 years I’ve been caring for people diagnosed with metastatic disease. I had a chance to reflect on this last month, when I saw a woman newly diagnosed with breast cancer whose sister had also been a patient of mine. The sister died of metastatic breast cancer in 1995 at the age of 35. There were few effective treatments at that time, and despite access to state-of-the art care and enrollment in a clinical trial, her survival following recurrence was short.

My current patient accompanied her sister to many of those last clinic visits. Memories of those visits were prominent in her mind when she was diagnosed with breast cancer in 2014, at the age of 47, and became a patient herself. Both sisters were diagnosed with HER2-positive breast cancer, but there were no approved HER2-targeted therapies in 1995. In 2014, there are four approved therapies and others in development. What used to be an aggressive type of breast cancer with a poor prognosis has now become much more treatable and survivable. This woman’s outlook is tremendously hopeful.

Thanks to the Human Genome Project, we no longer think of breast cancer as a single entity, or its treatment as “one-size-fits-all.” Our increasing understanding of cancer genomics has revealed multiple subsets of breast cancer with different behavior patterns and different responses to therapy. Dozens of new agents have been approved for the treatment of metastatic breast cancer in the past two decades, offering meaningful improvements in the likelihood of response and length of survival. 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: Moving Beyond Awareness

AnnbyKorn1Ann Silberman wants readers to think critically and fund research to help people with metastatic breast cancer reach their goals and milestones.

 

It seemed slightly odd to be asked to write for a website called “Living Beyond Breast Cancer” when, as a woman with metastatic breast cancer, it is only my family who will live beyond cancer. I will merely live with breast cancer until it kills me.  But so much of Pink October has so little to do with those of us who are metastatic that I agreed that our metastatic voices need to be heard this month.

In 2009, I was diagnosed with Stage IIA HER2-positive breast cancer. I did the normal treatment for my diagnosis; mastectomy first, then “TCH” which is 6 rounds of Taxotere and Carboplatin and a year of Herceptin. I cried the night before I lost my breast, I smiled as the nurses handed me my chemo graduation certificate, and my last Herceptin treatment brought great relief. My year of endurance had ended and now I could get fully back to my life.

At my very first 3 month post-treatment appointment, my doctor sent me for a scan, which brought the devastating news: breast cancer had spread to my liver. My cancer is now incurable.

And so I did as we all do – I searched for survival statistics, read stories of struggle and death, and learned acceptance.  I figured out how to live with a terminal illness (and was not always graceful about it).  Finally, I set a goal: I would see my son graduate from high school.

Over the course of the next three years, I was sicker than I ever thought anybody could be, but my doctor did not give up on me, and I did not give up on trying for my son. I had half my liver removed in an effort to eradicate the liver mets, only to find they grew right back. I nearly died from c-diff sepsis that landed me in the ICU and then left me recovering at home, weak and sick, for months. I struggled through 7 different chemotherapy drugs, each with their own side effects, until my marrow would no longer recover and my immune system was gone. I did SBRT radiation on the mets that continued to mutate. And, finally, I was put on Perjeta, which I call my miracle. My mets disappeared into the ether and in May of 2014, I not only watched my Valedictorian son walk with his high school class, but also this September I took him to his college, Caltech, settled him in, and even made his dorm room bed. Despite the odds, I reached my goal. Continue reading