On the final day of my medical school orientation — between my scrubs fitting and receiving my badge — I missed a phone call from my genetic counselor. Once at home, I calmly returned the call, eager to put my anxieties to rest. Instead, as my genetic counselor spoke, I suddenly found it hard to breathe. I must have begun crying because I noticed my boyfriend, in town for my white coat ceremony, start rapidly Googling. He couldn't hear the conversation, but he knew what the tears meant. I had a BRCA mutation. My risk estimate for developing breast cancer in my lifetime hovered just above 80%.
The internal debates that ensued felt endless. I had one summer off during medical school, which would allow just enough time to recover from prophylactic surgery. Alternatively, I could wait until I completed my medical training, at which point I would be just shy of the age my mother was when she was diagnosed with metastatic breast cancer. Certainly, I wanted to do everything in my power to give myself the best chance at a long, healthy life; but the idea of surgery terrified me to my core. As I vacillated, I scoured online forums and attended support groups, wishing I would come across some sliver of information that would suddenly make my choice clear. No such epiphany was had but as time went on, I reflected on my mom’s battle with breast cancer. The memories of those seven agonizing years ultimately made my deliberations one-sided. My mind was made up. Several months after learning about my genetic aberration, I met with a breast surgeon.
I walked into the clinic, feeling self-assured and at peace with my decision. After a brisk exam, the surgeon got to the point: "Everything looks good. I've gone ahead and scheduled your first mammogram, six months from now. We'll follow the most current screening recommendations, which means alternating mammograms and MRIs every six months. In addition, you should continue to do a self-breast exam every month. Any questions?" I sat, blinking — did she have me confused with another patient? I was referred here for a mastectomy consult by a breast oncologist who had explained my options at great length. During that long, poignant conversation, the oncologist asked thoughtful questions and listened carefully as I detailed my motivations for seeking risk-reducing surgery. She also listened as I enumerated the incalculable losses — the big things like giving up the chance to breastfeed in the future and the small things like sleeping comfortably on my stomach. Despite my apprehension and grief, nothing outweighed my fear of developing cancer. I needed this surgery for peace of mind. And in a way, I felt grateful that I had the chance to make this decision out of precaution, unlike my mother, whose mastectomy was out of urgent necessity.
So it took me by surprise when the breast surgeon laid out a plan of rigorous screening. When I told her that I had come to the clinic to discuss surgical options, her demeanor abruptly changed. Moments earlier we had been laughing about the woes of being a first-year medical student. Now I tried to avert her disappointed gaze. "Look," she sighed, "many women don't find out that they have this mutation until they are much older than you. And even then, most will wait years before deciding to have a procedure like this. Perhaps you should consider waiting until after you've had children." My heart dropped. I had feared that I might face judgment for choosing to have such a drastic surgery at my age — I just didn't expect it would come from my physician.
Another consultation, another disappointment. The nurse gathering my history appeared shocked: "A double mastectomy consult? But you're so young!"
My agreeable self would ordinarily offer a polite smile in response; instead, I matter-of-factly replied, "Well, my mom was also 'so young' when she died of breast cancer." In the following months, I saw more doctors than I had in the previous decade. When I eventually spoke with a medical provider who presented the facts plainly, I felt the overwhelming sense of relief of no longer having to be on the defensive.
Deciding to have a prophylactic double mastectomy at age 24 was not easy, nor did I take it lightly. I only wish that the journey to reach this decision was not made even more difficult by feeling belittled and judged by the providers I entrusted with my care. Was I naive to believe that my physicians would withhold their personal beliefs and simply provide objective care?
Numerous studies demonstrate that patients consider being treated with respect and dignity among the most critical determinants of their experience. Conversely — and unsurprisingly — patients who feel they have been disrespected, stigmatized, or not taken seriously are more reluctant to disclose personal information. As mistrust in medicine increasingly threatens to upend the health of our communities, it is imperative that we as a profession part ways with our paternalistic past. I felt my concerns were dismissed and in turn, I found myself alienated from my entrusted health care professionals. I can only imagine the damage that is inflicted on those less equipped to advocate for themselves. To best align our actions with patients' wishes, we must admit that patients have insight into their health that we can only understand by listening.
In case you were wondering, I had the mastectomy one week before my 25th birthday. As I groggily came to after surgery, tears filled my eyes, not because of my aching body but because of the all-consuming feeling of relief. I nearly opted against surgery because of the doubt introduced during those initial appointments. Now, I am so glad I trusted my intuition and did something that terrified me in the interest of bettering my health. As I approach the beginning of my clinical years, I will remember how I felt throughout this experience. When caring for patients, I will be exceptionally mindful of the weight that my words carry and will use those words to build my patients up.
Bridget Marcinkowski is a medical student in Washington, DC and a former EMT. She is interested in violence prevention and health policy.
Illustration by Jennifer Bogartz