On September 9, a breast cancer diagnosis shattered my plans for the new academic year. At the moment I heard the words spoken by the radiologist, my vision of the future simply dissolved. Later in the day, as my surgeon described the treatment plan, I was thinking about how it would affect me, my family, and my work at Simmons College. With barely any time to consider it, I made the instinctive decision to live my new future publicly, sharing my experience with the Simmons students, professors and staff in a real-time fashion. I am convinced this was the right decision for me.
Why I arrived at that conclusion so quickly is, I think, self-evident: I am president of a university that has an all-women's undergraduate college, graduate schools serving women and men, and a culture that emphasizes gender equality and celebrates diversity and inclusion. In this environment, how could I imagine maintaining a leadership role while combating a challenging disease in secret? Further, how could I not share my new and evolving learning about an affliction that affects 12 percent of the women in the United States? I could not. I would live this battle publicly.
Each week, I write to the Simmons community about things that are on my mind; it has become the natural way to share my breast cancer journey, and I have found the response to be overwhelmingly supportive. If I had a moment's hesitation over my decision to go public, it faded quickly once I recognized the opportunity to reassure my community that it is possible to contend with a challenging diagnosis and to continue meaningful work, as have many before me. I hope that by writing candidly, I can help make a difference for those who may be experiencing similar challenges.
As the semester moved along, I tried to keep the same robust schedule I’ve always maintained with a few modifications for my treatment. For example, many people are shocked to find themselves scheduled in a meeting with me the day after chemo. It’s two to four days after these treatments that become challenging for me because the steroids in my system are wearing off. Through the generosity of the college’s trustees, I am now driven to work and to my daily professional appointments. It was difficult for me to accept such support given how much I value self-reliance, but not having to personally drive has made a huge difference in my ability to maintain my working schedule.
One aspect of my treatment that I find particularly difficult is the requirement that I avoid large groups because of my weakened immune system. For a college president who regularly meets with students, faculty, alumni, staff, community members, and donors, this was a tough change. However, there is really no way to get around this important requirement. I have had to make adjustments such as canceling my annual fall community meeting and missing the annual faculty and staff holiday party.
A cancer diagnosis of any kind constitutes an unspeakable event for many people. There is no escaping the facts: cancer affects one in two American men and one in three American women, according to the American Cancer Society. Changing societal attitudes about cancer so that we talk about it in honest and authentic terms and arm ourselves with knowledge can only help us in dealing with the No. 2 cause of death in the United States.
Fear of breast cancer plagues patients, survivors and women who do not have the disease. Even women who acknowledge knowing that heart disease is the number one cause of death in the United States fear that they will most likely die from breast cancer. Such fear too often leads to avoidance of screening or even seeing a physician for self-identified symptoms, creating great risk of more serious disease.
I have generally shared these fears, particularly as I visited the Avon Foundation Comprehensive Breast Evaluation Center at Massachusetts General Hospital (MGH) every year for several decades for my annual mammogram. Many who participate in this important test will say that the waiting room is a quiet and sober place. All of us know why: Most of us will leave with a clean bill of health, while others require further review. This year I was in the second group, and while the anticipation was terrifying, it prepared me for my important learning that putting my life before my fear was the best way for me to handle the fear.
During diagnosis, surgery, and now chemotherapy, I have seen that my single greatest source of fear is lack of any sense of understanding or control over what will happen. My response has been to be as engaged a patient as I can be while soliciting as much information about my treatment from my care team as I can handle. Facing the fear head-on is empowering, oddly enough, and finding role models who have done so in any circumstance has been especially helpful. When I write about my experiences with breast cancer, I try to be as explicit as possible about how I am dealing with the fears associated both with the disease and the treatment.
In addition to the fear factor, I have observed what I consider is the diabolical confusion in the marketplace about the efficacy of mammography screening. The American Cancer Society advises annual mammograms for all women age 40 and over, while the United States Preventative Task Force (USPTF) a government agency, recommends biennial mammography after age 50 until age 74. In addition to confusion, this government advice opens the door to changes in reimbursement for testing done outside guidelines, particularly worrisome as we consider the ongoing national concerns about health care affordability.
Daniel Kopans, a physician at MGH, has been a particularly committed advocate for mammography in the face of this confusion, and cites both the poor quality of the Canadian studies, which are the basis for the USPTF guidelines, and the lack of media attention to the new Canadian studies, which demonstrate results supporting the value of mammography. As a woman who clearly benefited from annual mammography, I think anything less is a disservice to all of us.
My primary care physician has steadfastly advised me to have annual mammograms over the course of our 20-year relationship, and I have never missed one. All previous tests revealed nothing abnormal, but in the fall, the test revealed a stage 1, grade 3 tumor. Stage 1 is an early finding of a tumor less than 2 centimeters in size, while a grade 3 tumor is the most aggressive kind of tumor. Had I delayed this mammogram, the progress of the disease was inevitable. My story is the classic scenario in support of annual mammograms. However, women in the United States face great confusion due to significant differences in the recommendations of key advisers.
My battle with breast cancer is now fully engaged, and I am committed to all aspects of the fight – surgery, chemotherapy, radiation and long-term medication – and to doing everything in my power to defeat this disease. One of the unexpected gifts of this experience is that I see life with more clarity and in a more intense light than ever before and I feel a sense of urgency in everything that I do – for myself, for my family, for the college. We just need to get on with it – face our challenges squarely and make every minute count. There is no time to waste.
I trust that by sharing my experiences with those in the Simmons College community, I can help them face the challenges in their lives, too, whatever those are, and inspire them to engage their own challenges with tenacity.