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: 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

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: 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

Blog For Mental Health 2014: The Emotional Impact of Breast Cancer

mentalhealthblogdayToday is Mental Health Blog Day 2014, a Mental Health Month initiative from the American Psychological Association. As a contribution to this day, we wanted to acknowledge the emotional impact of breast cancer, in addition to sharing resources and letting you know that you are not alone.  

Whether you just heard the words “you have breast cancer,” are years beyond treatment or living with metastatic disease, it is likely that you experienced or continue to experience a range of complex emotions due to this major life change. At LBBC, we are dedicated to helping you cope with or manage these feelings by connecting you with trusted breast cancer information and a community of support.

In recognition of Mental Health Month and Mental Health Blog Day 2014, we wanted to highlight programs, resources and inspiring personal stories by men and women affected by breast cancer.

First and foremost, we have a toll-free Breast Cancer Helpline (888-753-52220) answered live from 9 a.m. to 9 p.m. ET. Staffed by volunteers who have been diagnosed with breast cancer, our Helpline will connect you with someone who cares and knows what you’re feeling. Call today or when you’re ready!

We also have some upcoming programs as well as podcasts and presentations of previous events, many of which you may find helpful: Continue reading

Blog Back: Healing and Embracing Change After Breast Cancer

LynnFolkmanLynn Folkman, manager of our volunteer programs, wrote her Blog Back post  about her personal growth after reaching her 5-year “cancerversary.”  Read her story and check out our past Blog Back columns.

“Feels like some kind of wild ride but it’s turning out just to be life going absolutely perfectly.”

Every morning, while having my espresso, I view a piece of artwork with the above statement and allow it to resonate in me.

In March 2009, I was diagnosed with stage I ER, PR and HER2-positive breast cancer. I have always been a believer that things happen for a reason. Although certainly at the time, I could think of no good reason why breast cancer and chemotherapy would be on that list. As 2014 began, I was rapidly approaching my 5-year mark and found myself filled with a variety of emotions: joy, sadness, anxiety and fear. Continue reading

Introducing My+Story

Kevin Gianotto is the associate director of marketing, public relations and corporate partnerships at Living Beyond Breast Cancer.  He’s worked for nonprofit organizations since 2002.

Two weeks ago, I attended a reception at the Dover International Speedway where I had the chance to introduce a number of individuals I met to the work we do at LBBC to connect people to trusted breast cancer information and a community of support.  The conversations I had that evening inevitably led to the opportunity for me to discuss what I am most passionate about here at LBBC –women who have been diagnosed with metastatic breast cancer, many of whom have become close friends, and the educational resources and support services LBBC has available for them.

52792_10151113120997285_1062790530_oMetastatic breast cancer—a form of advanced breast cancer also referred to as stage IV breast cancer—occurs when breast cancer has spread to other parts of the body.  Approximately 159,000 women in the United States are currently living with metastatic breast cancer, and this number is projected to increase to approximately 164,000 by the year 2015.

To raise awareness of Metastatic Breast Cancer Awareness Day on October 13, LBBC has partnered with the MedImmune Specialty Care Division of AstraZeneca to promote the launch of My+Story, an online resource center which highlights the needs of women living with metastatic breast cancer and calls attention to metastatic disease as a key component of October’s National Breast Cancer Awareness Month. Metastatic Breast Cancer Awareness Day was officially recognized by the U.S. Congress in 2009, following a grassroots awareness effort led by members of the Metastatic Breast Cancer Network (MBCN).

The My+Story site houses tools and information tailored for women living with advanced disease. The website is designed to connect patients with the information they need, and links to patient support groups that have specific programs for metastatic breast cancer patients—like LBBC and MBCN.

Visitors can learn about metastatic breast cancer and treatment options, find tips on how to take care of their bodies, and celebrate their life experiences by creating a hard copy photobook of personal stories that may be shared with loved ones. Women with metastatic breast cancer and those who are directly inspired by them can also create a personalized flower badge that can be shared at MyMBCStory.com and with their personal social media community to help raise awareness. In addition, supporters of women with metastatic breast cancer can visit MyMBCStory.com/awareness to download free educational materials and inspire members of their community to help raise awareness of the disease.

Other great interactive features (ones my social media team here at LBBC love) allow visitors to share their favorite images and information from the site with others via Facebook, Twitter and Pinterest. And, throughout the month, AstraZeneca will make a contribution to LBBC and MBCN each time visitors share content (up to a total of $28,000) in acknowledgment of the 28 years since National Breast Cancer Awareness Month was established and of the ongoing effort to bring metastatic breast cancer to the forefront. If you’re inclined, be sure to check out the site and let us know what you think.