October 13th is Metastatic Breast Cancer Day. Here’s What You Need to Know

October is a month awash in pink and festooned with ribbons. Everywhere you look; there are pink products you can buy to support the overall cause – from pins, stickers and tee shirts to fancy sneakers and pricey kitchen appliances. In the midst of all of that, there remains a lack of awareness around breast cancer’s deadliest form. Today, October 13^th, is Metastatic Breast Cancer Awareness Day. Here are some facts we all need to know, via ItsAboutTimeMBC.com.

MBC is the only breast cancer that kills, and it is treatable but cannot be cured.

 Treating early stage breast cancer does not mean one never has to worry about breast cancer again. MBC can occur 5, 10 or 15+ years after a person’s original diagnosis and even after successful treatment and annual mammograms.

 Although some people can live for years with MBC, most people will ultimately die of their disease (the five-year survival rate is 22%). 

  An estimated 155,000 Americans are currently living with metastatic breast cancer. Metastatic breast cancer accounts for approximately 40,000 deaths annually in the U.S.

Compared to their white peers, African American women are less likely to develop breast cancer. When they do, they are 37% more likely to die from it.

 MBC focused research made up only 7% of the $15 billion dollars spent on breast cancer research from 2000-2013 by major government and nonprofit funders.

 

Metastatic Breast Cancer is the only breast cancer that kills, but it only gets 7% of the research funding. And in October, National Breast Cancer Awareness Month, it gets a fraction of the attention it deserves. This year, the folks involved in the Metastatic Breast Cancer Awareness Day campaign allowed me to interview Khadijah, a woman living with MBC who is sharing her story to empower and inform others. This is her story.

 I didn’t realize how strong my voice really was until I was diagnosed with breast cancer in 2003. I was 28 years old with lots of dreams to fulfill and my daughter was a spirited 6-year-old. It felt unfair to have to deal with such a devastating illness at a young age. When I explained to her that I was going to have to take medicine that would make me lose my hair, a single tear fell from her large almond-shaped eyes. This ignited my fire to fight with everything that I had so I could be around to raise her.

  After I had a mastectomy and endured chemotherapy for several months, I was deemed “cancer free.” I wanted to help other survivors along their journey, so I started working with Young Survival Coalition as their program manager. In this role, I participated in various events and conferences to educate the public and the healthcare community about young women with breast cancer.

 I continued living my “new normal” until I developed a persistent cough in 2010. To my dismay, a chest x-ray showed a blood clot and multiple tumors in my lungs; a biopsy confirmed that the cancer had returned. Unlike when I was first diagnosed and cried profusely, I didn’t this time. The doctor tried to gently explain what metastatic breast cancer meant, but I told him that I understood: my disease was incurable. I wondered how I was going to relay this information to my loved ones. This time around my daughter was 13, so she understood what cancer could mean. When I told her the news, she gave me a hug and said sweetly,” Mom, you beat it before, you’ll do it again.” My heart wept. Yet, my faith abounded.

 I had relied heavily on prayer and reading the Bible during my first diagnosis. I knew that my spirituality would have to anchor me once again because I was literally fighting for my life. My doctor recommended that I take oral chemotherapy, which worked for over a year to relieve my symptoms and minimized the coughing. In 2012 my airway was cleared with radiation and with the new chemotherapy regimen that I’m on, my tumors continue to shrink so we treat this as a chronic illness.

 Following my diagnosis, I had the audacity to attend graduate school at Columbia University, where I received my graduate degree in journalism in 2013 – because my dreams are still relevant, and attainable. I now work full-time for the New York Police Department and am affiliated with the Young Survival Coalition. I encourage women with breast cancer to be proactive about their health and to stay hopeful despite the adversity they face. I keep moving forward because it’s not over until I stop singing and I don’t plan to do that any time soon.”

 

I got to ask Khadijah some questions about MBC, about self care, and what we all need to know to raise awareness and address these scary statistics.

Afrobella — What’s the one thing you want people to know about you and your MBC experience?

Khadijah  — I do not define myself by my breast cancer experience from my initial diagnosis when I was 28 to who I am now 13 years later as an MBC survivor. This test is part of my testimony about the power of God’s love, grace, and spiritual healing. The same year I was diagnosed with MBC, I applied to an Ivy League graduate school. I was accepted and graduated two years later. Some may have felt this would be counter-intuitive, but I was not going to allow my diagnosis to interfere with my plans or purpose.

Afrobella —  How do you stay positive? Keep yourself healthy?

Khadijah –  I cling to my faith in God to help me withstand the everyday trials and tribulations of life, which include my MBC experience. Although I do have some challenges, especially when I allow myself to think about the “what ifs,” I refocus and center myself and cling to the peace that surpasses all understanding.

Afrobella —  What brings you joy?

Khadijah –   Joy is different than happiness. I have inner joy, which is something that is not shaken no matter what I face.  What makes me feel happy is when I spend time with my loved ones. My now 19-year-old daughter is the light of my life!

Afrobella —  Afrobella is a blog about brown girl beauty. Are you a beauty girl? If so, are there any tried and true beauty tips you break out when you’re not feeling 100%?

Khadijah – When I’m not feeling 100%, like when my hair is looking a little crazy (smile), I wear one of my fedora hats and a bright red lipstick.

Afrobella —  Any other self-care tips you’d like to share?

Khadijah –  I’ve learned to establish boundaries and the power of saying “no” to people and things that do not fit well with my spirit or my destiny.

Afrobella —  Most people are aware of breast cancer because of the pink ribbon, etc. I think far fewer people are aware of metastatic breast cancer. What do you think more of us need to know that most people don’t?

Khadijah –   Metastatic breast cancer is the disease that (can) kill you. But, because of advances in treatment, it is now being managed as a chronic illness.  I know several women who have lived with the disease for 10+ years.

Afrobella —  What advice would you give to someone who has been diagnosed with metastatic breast cancer?

Khadijah –   Do not blame yourself or think that you did something wrong because everybody’s cancer experience is different. Do not compare yourself to anybody else. Work with your healthcare team to create a treatment plan that’s suitable for you. I also think attending support groups and individual therapy is essential to good mental health.

Afrobella —  If you’re a loved one or close friend of someone going through this, what should you do to be supportive and show love at this time? Some people barely know what to say, much less how to act.

Khadijah –  I suggest that you ask your loved one how “they” wish to be supported, and do your best to help them. Also, just try to treat them as “normal” as possible.  And, pray for them.

Afrobella —  What do you hope to see in terms of change or increased awareness around MBC?

Khadijah –   The public needs to understand what MBC is but they do not need to be afraid of what it “could” mean regarding it being a death sentence. We need more money to be allocated to research to find the “cure” so that no one else has to die from metastatic breast cancer. We need to be very clear about what it means when we say that people die from this disease. They don’t die from breast cancer; they die from metastatic breast cancer. Furthermore, the healthcare industry needs to be more mindful about enhancing the quality of life of people with MBC.

To learn more and support awareness, visit the website, http://www.itsabouttimembc.com/, check out www.facebook.com/ItsAboutTimeMBC, and on Twitter, @ItsAboutTimeMBC.