I was a cancer expert long before I was a patient: in control, passionate about my work and invulnerable. Yet all of this would change with one phone call.
It was a morning like many before. While discussing a complicated case with a colleague, my cell phone began to vibrate. Seeing the familiar number from the university’s radiology department, I knew it would be a “finding of concern.” With a pang of sadness, I pondered which of my patients I would soon be calling with bad news.
The voice on the other end of the line sounded cheerful and upbeat. She told me that they had found five little “irregularities”—likely nothing of concern; I just needed to follow up and do more tests. Feeling distracted, I asked her to repeat which patient she was referring to. There was a pause on the other end, before she said, “This is about your recent mammogram.” I’d missed that she hadn’t begun the conversation with, “Good morning doctor, this is about…”, but instead had called me by my first name. I should have realized then that this call was not about a patient; it was meant for me.
Nothing prepared me for that sickening sense of foreboding and the guttural fear that gripped me that day. I was not ready for breast cancer.
Unlike for most of my patients, the actual decisions about which treatments to choose and how to find the best medical team were the easy parts. So many times in my role as a breast cancer expert, I had been asked, “What would you do?”—so when it came to my specific case, I never doubted that a double mastectomy was the right choice. Yet as a woman I still wrestled with the need for such a drastic step. After almost a year of more tests, frequent visits to the doctor’s office and multiple surgeries, I thought it was all behind me. Just as life started to return to normal, I found out that I carried the BRCA gene. This inherited gene is likely going to affect other family members, and made me worry about my 10-year old daughter.
The BRCA gene puts me at high risk for ovarian cancer, which meant I needed to remove my ovaries and fallopian tubes. The night before my surgery to remove my ovaries, I asked my friend and patient Lis how it would feel to have my ovaries removed. She stared at me with undisguised bewilderment. “How can the thief of so many ovaries ask a question like this?” she asked, referring to the fact that I had recommended this procedure for countless women as part of their breast cancer treatment. We both realized that although I could explain the surgery and its medical and emotional consequences in great detail, I never had to consider this option from a patient’s perspective. I had no idea how I would feel about losing more precious body parts and how I could handle going into menopause overnight.
Doctors live in a world of statistics and probabilities, and we often use numbers to reassure patients. These numbers feel very different when it is your cancer. I knew there was already a 2-3% chance of finding ovarian cancer during that surgery. As a doctor, I interpreted this to mean that there is 97% chance of being cancer free—something I thought should be reassuring to patients. Yet all I could think of was waking up from surgery and a doctor with a sad smile telling me, “You have ovarian cancer.” None of the reassurances from the medical team or the favorable statistics would let me rest until I got the call from the pathologist that I was cancer free.
Oncologists are among the most compassionate doctors I know. Yet few of us can truly comprehend the profound sense of upheaval that a cancer diagnosis brings. Despite the fact that I had three young children, a hectic job and a busy career, my life was in control—in my control. Cancer turns life into a roller coaster of hope and despair. Like an intruder lurking in your closet, you never quite feel safe. It was difficult to be out of control, at the mercy of the kindness and skills of medical professionals.
I really try hard to be the best doctor I can be—smart, up to date on the literature and competent in communication. We spend years honing our skills. Yet doctors are human, with real feelings and limits. It is much easier and safer to hide behind facts and technical terms. It takes a toll to stay in a difficult conversation, and true courage to be compassionate and allow suffering to get close to us.
My cancer journey has forced me to accept fears and being out of control.
But I am lucky. Buoyed by friends and family, I continue to work in cancer research and with the most amazing, courageous patients. Most importantly, however, as I go to clinic now, I am no longer afraid to feel empathy for someone I might not be able to help. I am more at ease now to have those difficult conversations, because as a patient I know I needed to have them.
Dr. Pamela Munster is professor of medicine at University of California San Francisco, program leader for experimental therapeutics and co-leader of the Center for BRCA Research at the UCSF Helen Diller Family Comprehensive Cancer Center.