Metastatic Breast Cancer Awareness Day 2020

Today, October 13, is National Metastatic Breast Cancer (MBC) Awareness Day! This year we want to continue to spread awareness and share what life is really like for those who are living with or have been impacted by a stage 4 breast cancer diagnosis. To this end, we asked our advocates to share their thoughts and experiences so we can hear and learn from them. Here is what some of them shared.

What should people know about metastatic breast cancer?

• "MBC is a terminal disease. There is no cure. It is not chronic." (Linda)
• "MBC is a permanent condition that does not go away. Please don’t ask me when I will be done with chemo." (Alyson)
• "It’s like being on a merry-go-round that you can never get off of, no matter how terrifying it gets. You’re just stuck on it forever." (Danielle)
• "MBC is a terminal illness and you remain in treatment for as long as the drugs are effective." (Rod)
• "From my perspective, people should understand that no two people will have the same experiences. Many experiences may be very similar, however, we all have our own unique experiences." (Gloria)
• "Metastatic breast cancer simply needs more of everything. We continue to lose way too many women to this disease. More research, funding, and awareness is needed." (Melissa)
• "I want people in the greater breast cancer community to know that men and women living with MBC need to be seen and heard. It isn't through any fault of their own that they were diagnosed stage IV. It's just bad luck. So instead of being scared of them, we should embrace them in every single context of breast cancer awareness. Our stage IV community has a lot to teach all of us about breast cancer." (April S.)
• "People should know that MBC is a chronic, terminal illness and that no matter how well we look, or how normal we appear, we are all fighting a battle for our lives. It’s a completely different disease from early-stage breast cancer." (Lynette)
• "Living with MBC, a terminal illness, is the hardest thing I’ve ever attempted. It is often like a weight around my neck that stifles any attempt at joy or progress. Underneath that struggle, however, I am still a person and I deserve to be treated like a valuable contributor to whatever group I’m in. I want and need human connection and to be included, even if I’m not always well enough to take part." (Abigail)
• "People should know that stage IV MBC is the only stage of breast cancer that’s terminal/incurable. Median survival is less than 5 years from diagnosis. And, 30% of those diagnosed with early-stage breast cancer will experience metastatic recurrence months, years, or decades following successful treatment for breast cancer." (Janice)
• "We don’t stop treatment. When others ask — “how much longer are you in treatment?” — I say: For life. Once cancer spreads through the lymph or blood systems, cancer cells are always looming. There is not a day when I won’t be doing something to actively treat the cancer. Even if there is no evidence of disease for a period, I am still on oral chemo, hormone blockers, and other agents to keep things stable." (Amanda)
• "MBC needs more — it is incurable breast cancer. And I know way too many women that have been diagnosed with MBC as their first diagnosis. The average lifespan after an MBC diagnosis is 2-3 years." (Sarah)
• "MBC is an incredibly misunderstood, complex, deceptive and confusing disease. It is often an invisible illness which many live with for years appearing totally fine. But ultimately, it has a high fatality rate. And so sometimes we aren’t fine on the inside – emotionally, or physically. Yet we want to live, happy, full lives, and are able to find joy and laughter despite the cards we’ve been dealt. So please don’t treat us differently; many of us are open books and want to talk about it. The worst thing you can do is ignore us, or the fact that we are dealing with MBC. If you have questions, just ask." (Elpida)

What does metastatic breast cancer mean to you?

• "You have MBC is a phrase no one should ever have to hear. It is a heartbreaking disease that slowly robs the person of their life." (Linda)
• "MBC is a horrific disease that wreaks havoc on your body, mind, and soul. The pain is real. The disease does violence to our bodies. For me personally, it tore through my neck and created a bullet-like wound. The scar persists and still causes me pain. There is nothing good about MBC except the friends it has led me to." (Alyson)
• "It means belonging to a brother and sisterhood like no other." (Danielle)
• "MBC means I will take each day as it comes." (Rod)
• "MBC means a cornucopia of feelings, positive and negative. I hate that it shoved me into bankruptcy and that the initial support I had is now nonexistent. I love that I have a new lease on life, that I am living my life to the fullest. I love that it pushed me to do things I was afraid to do, the most exciting is the earning of my master’s degree." (Gloria)
• "I am grateful that MBC has its own national day, however, this disease needs continued attention and focus EVERY day." (Melissa)
• "My immediate thought when thinking about this day is that it really should be MBC Awareness Month. I wish that breast cancer awareness month was more about putting the spotlight on those living with stage IV: what stage IV is, how it is different from treating early-stage breast cancer, the history of battling stage IV and how it continues to be deadly, what life is like for those diagnosed with MBC, and why understanding stage IV is paramount for combatting all breast cancer. If MBC can't have a whole month, then this is what MBC Awareness Day is all about for me. I want to amplify the voices of the MBC community, and I especially feel we need to hear from those diagnosed in their 20s, 30s, and 40s." (April S.)
• "Having MBC has been the ultimate challenge of my life, as well as my family’s. In many ways, it has helped us create a closer bond than ever before. It has also helped me to find the many things in my life for which I am grateful. I have developed a more mindful approach to life and have cultivated gratitude as never before." (Lynette)
• "MBC means to me — pain, nausea, struggle, pain, grief, death, pain, struggle, loss, pain, medication...the worst club with the best people." (Abigail)
• "MBC means that I won’t likely live to see my grandchildren grow up, my life will be cut short. It, also, means that living each day to the fullest, with gratitude, is important. Be fully present in the moment." (Janice)
• "It means a new way of life — a way that I didn’t want nor did I know of — before this diagnosis. It means viewing life as precious and making memories with my children. It means living each day to its fullest. It means valuing research and scientific advancement in a new and real way. It means giving myself space to grieve or rest or play — depending on how I feel and how my body feels. It means tending to my heart and mind, just as much as my body. It means prioritizing what really matters and letting the rest go. It means getting comfortable with the uncomfortable and finding peace in the unknown.💛 " (Amanda)
• "MBC means your breast cancer has spread to other organs. MBC does not only affect older women it also affects women in their 20's, 30's, 40's on upward. MBC needs more." (Sarah)
• "To me, MBC means the division of my life pre and post 2015. It means losing control. It means sitting on the sidelines and watching my life in a movie. MBC means being a professional patient. MBC means focusing and prioritizing my time and energy on who and what matters the most. MBC means patient advocacy – for myself and for others." (Elpida)

Today, tomorrow, and always we stand together for metastatic breast cancer.