Cancer Advocate Spotlight: Valerie Fraser
Valerie Fraser
3-year Inflammatory Breast Cancer Survivor
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It was New Year's Day, 2007, when my personal journey into the world of cancer would begin. The ease of life that existed before that day would be forever challenged; nothing would ever be the same again. The truth is that a cancer diagnosis changes everything and challenges your very core. Each decision going forward will now be critical to survival. The love of your family and friends and the heartfelt connection with other survivors is what will feed your soul through this journey. Somehow we find the strength to persevere and proudly refer to ourselves as "survivors." Each step on our journey changes something within us; each decision we make empowers us.
I have survived the most rare and deadly of all breast cancers: inflammatory breast cancer, or “IBC.” On my Cancerversary – January 1, 2010 – I will have crossed the three-year mark with no evidence of disease (NED). Like most women over 40, I made sure to get my annual mammogram so as to catch any cancer early. I was shocked to learn after my own diagnosis that IBC rarely shows up on a mammogram because it does not present with a classic "lump.” Instead, it spreads rapidly through invading the dermal lymphatics of the breast. As a result, many women with this disease are diagnosed late once it spreads into the body and face years of aggressive treatment to try to control the growth. If diagnosed early there is a high chance for cure. In my own case, I experienced all of the classic symptoms: breast swelling, thickening, skin dimpling, rash and nipple retraction, which are often thought to be an infection. Fortunately, my sixth sense told me to see a breast surgeon ASAP. That was instrumental in saving my life. So, on my 36th wedding anniversary I received my first chemotherapy infusion thousands of miles from home. I had made a decision to have my treatment with a leading research oncologist knowledgeable of how to treat this rare cancer, and since have flown more than 75 times from my home in Michigan to Texas for treatment. It is truly amazing that I responded so well to the chemotherapy protocol I was given. I not only had IBC Stage 3B, but also two tumors of Intraductal Carcinoma Grade 2 along with the most aggressive receptor Her2+. Following six rounds of treatment, there was no detectable sign of the large mass that had spread through my breast and although this cancer has a high recurrence rate, I continue to be NED.
As I stood at each crossroad I faced with this cancer both physically and emotionally, I learned that I was the most important part of my health care team. It was to my benefit to be proactive and important that I be my own best advocate. I became informed about treatment options and was thoughtful about the questions I needed answered by my doctors. I took the time to research and fully understand my disease. I knew the impact it could have not only for my own treatment, but the broader benefit it might have for the cancer community. At each crossroad I gained more strength; strength I would need further down the road when faced with many unexpected challenges such as my husband's loss of his 20 year employment, the costs surrounding my care, and our fear of loss of health insurance. Many times as survivors we not only face our own healthcare crisis, but also face other far-reaching repercussions of this disease.
As survivors we have a unique opportunity through our own struggles to impact change. Reversing the effects of this disease on our lives, our community and our world must begin with us. One voice can make a difference, and when joined with other powerful voices, it can effect change. Fortunately, there are plenty of ways individuals can take action and many tools available to help with raising awareness. The Internet and social networking are proving to be great resources. Use your strengths and talents to transcend your illness and make a difference. We hold the power to transform our own experience into greater good. I have chosen to embrace each opportunity to use my strengths and talents in many ways over the past two years through participating in peer review panels to ensure funding for research will have the greatest impact for the cancer patient; engaging legislators about the critical issues surrounding cancer; participating in local and national cancer organizations such as NCCS that are at the forefront of standing up for change; becoming involved with leading medical institutions and sharing perspectives; leading support groups and retreats; and sharing my experience with other women who face the fear of this disease.
The first steps to effective advocacy begin with finding common ground, asking tough questions and demanding the best of our doctors, researchers and lawmakers.
Don't be silent. Share your knowledge, plant seeds of change and make a difference by finding your voice. When faced with your next crossroad, search beyond the obvious. Take the hidden path; the one less traveled. That will make all the difference.
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February 20, 2010
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December 10, 2009