• Taking Control When Things Feel Uncontrollable

    Personal Stories, Leadership


    There are life-changing, joyous moments you never forget: the birth of a child; a wedding; a graduation. Then, there are moments you never forget for the opposite reason, such as the memory of discovering you have cancer.

    It was 30 years ago this month that I first felt the lump. While women weren’t routinely performing self exams on their breasts in 1984, things were different in my family. It was just four years earlier that my beautiful sister Suzy had died after a three year fight against breast cancer. Since then, I had helped create an organization in her honor to help find a cure for the disease.

    Through my work there, I had access to many resources and experts, and had learned a lot about breast cancer, including that it could be genetic.  But even with all that information, nothing prepared me for the grim feeling when, one evening, my hand casually brushed against my breast and I felt that lump. I had discovered lumps before, had them tested, diagnosed as benign, and been on my way. I sensed immediately this one would be different.

    It was harder, and similar in size and shape to the lump that my sister first discovered in her own breast.

    In 1984, I knew as much about breast cancer as anyone outside of the medical or scientific profession could know. I had watched my sister die from breast cancer, then spent several years educating myself and other women about the disease. Yet even with all that knowledge, I still felt scared and intimidated.

    I visited one of the top doctors I’d been introduced to through my work  and  had seen regularly in the past. His reaction was to adopt a ‘wait and see’ approach. I was skeptical but ultimately agreed, because he was the expert.

    The next day, I was scheduled to speak at a Susan G. Komen event. As I rose to address the women gathered, my notes that we needed to take responsibility for our own breast health stared back at me: “We can’t just take a physician’s word for it […]Just as a business hires consultants, you look to your own physicians to provide you with an expert opinion, but ultimately the decision is yours.”

    I was embarrassed. Here I was telling women to take responsibility for their health, even as I went against my own best judgment with mine.

    I hurriedly scheduled another appointment to get a second opinion. There too,  I was told that ‘wait and see’ was best.

    About 10 days later, the lump felt bigger. I went back to my doctor and told him in clear terms that I wanted this lump out, now. The next day he performed an outpatient lumpectomy, and he told me he would have the tissue tested but felt confident it would be good news.

    It wasn’t.

    The tumor was malignant. I had breast cancer. The years at Suzy’s bedside came rushing back to me – the questions without answers, the suffering, the empty reassurances, and I thought of my parents, who would face another long battle with another daughter. As the doctor began walking through my treatment options, my resolve grew. “I want them taken off,” I said, now.

    My desire to have a mastectomy was immediately resisted by my doctor who recounted all the reasons not to do it: it was caught early, there were other options, it was not “necessary.”He was an expert and a good man, but he wasn’tme. This was my choice. I was lucky to have seen and read enough to know how I wanted to wage this battle, and soon I was in an operating room about to lose a part of me.

    The doctors were entitled to their opinions, but I was entitled to my decisions. I’m still amazed at how easy it would have been to lose control of my own health amidst the sea of information and the fear that such a diagnosis brings. At least I was able to regain control of the process and had the resources to rightly follow my intuition, even if I sometimes had to be assertive.

    In the past 30 years, we have made enormous gains in raising awareness about breast cancer, but too many women facing this disease still feel like they don’t know enough, or may leave important decisions to their doctors. As a survivor, I understand this process and the wide range of emotions involved. I also know how imperative it is that we overcome this, by continuing to provide access to information and resources for those that face this disease, and their families.

    When I read criticisms of breast cancer awareness or hear people say there is “too much pink,” I think about the 1.7 million women worldwide every year who face their own life-changing news: discovering a lump, or finding out their tumor is malignant. I think about the quick decisions they will have to make, and the information that will be thrown at them. I think about the fear they experience not just about having cancer, but about having no clue on how to proceed.

    And when I think of the 40,000 American women who die of breast cancer every year, I think: there isn’t too much pink. There’s not nearly enough.

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