By Kathleen Uberuaga
Listening to a perfect stranger tell you over the phone that you have cancer is pretty weird: “You have a very early stage of cancer. Why don’t you call your doctor right now?” All I could think was How many times a day does she do this?
I asked no questions; I just hung up the phone. Then I called my husband. No words came out. My chest was tight, and the tears of acknowledgment started to flow. I hung up with my husband, took a deep breath, and called my doctor, who suggested that I come in to discuss the biopsy results. Then I just stood there. How could five minutes change things so? Early, noninvasive—that’s good, I said to myself. Cancer, that’s not so good.
After a month of appointments, I had to make some decisions, which included finding breast and reconstructive surgeons. As I launched into that process, I experienced many conflicting feelings. While I felt lucky to be in New York City, home to some of the best medical care in the world, I was faced with the choice between two worlds: In one world, where I had received all my previous medical care—consisting largely of yearly physicals and care during my uneventful pregnancies—the doctors and the space were nice, simple, and comfortable. Waiting rooms were adequate, not fancy, but the care was always intimate. I never waited for hours. My calls were always returned promptly. I felt like there was always time for me.
But this was cancer, everyone kept reminding me, and I needed to step it up.
A good friend opened the doors to a top-rated cancer hospital. I felt privileged, as though I had been upgraded to a better hotel room, but guilty that I was leaving my original surgeon behind. The place was run like a successful corporation. The waiting rooms were beautiful, full of up-to-date reading material, snacks, tea, and coffee. (I would discover later that the presence of these amenities relates directly to the anticipated waiting time for the facility’s patients.) Medical records were kept electronically, and all the equipment was brand-new. I was constantly aware of how lucky I was to be there.
As I got sucked into this new world, I remained grateful. Convinced that the best equipment and the most advanced research meant the best care, I went ahead with appointments to set up my initial surgery. Everyone was happy. My family was relieved. I liked my breast surgeon well enough—she was intelligent, experienced, and personable. Next I made an appointment to meet with a reconstructive surgeon. To me this step was secondary. Get the cancer out was all that was on my mind. Whatever could be done after that was icing on the cake.
The day of the appointment arrived. The reconstructive surgeon walked in, shook my hand, and said, “So, you’re having a mastectomy. Take off your gown.” Flustered and still torn between a lumpectomy and a mastectomy in my own mind, I stammered, “I’m still deciding.” His response was curt: “The only reason to see me is for a mastectomy, so let’s see what can be done.” The rest of the appointment followed suit: he spoke quickly, telling me what would be done and what the follow-up would be, never mentioning any emotional impact or concern. As he drew on my chest with a black permanent marker, I felt nauseated. My husband and I sat there, asked a few useless questions, and nodded at appropriate intervals. By the end I was signing surgical waivers because, if not, he said, he might not have an opening for months.
A few days later, I got a call from my original surgeon—the one who performed my biopsy—who asked me to come in after I heard my diagnosis; he’s the one who never made me wait and whose staff all knew my name. He was checking in to see if I had made a choice about my surgery—not if I had selected him but if I had chosen between a lumpectomy and a mastectomy. He also had a few recommendations of reconstructive surgeons he thought I might like to meet and interview. “You mean I get to choose who my reconstructive surgeon is?” This was not an option at the other hospital.
I had not spoken to him since I’d decided to switch hospitals. Every day for the past week, I had looked at his number but then chickened out. Now he was calling to offer me more information. “I just need you to know that, upon further review, I would not recommend anything but a mastectomy,” he said, going on to explain that this type of cancer, called ductal carcinoma in situ (DCIS), has a 50/50 chance of never turning into invasive cancer, but there is no way of finding out until after it is removed. He also explained that, if I chose a lumpectomy, the area that I would need to have removed would likely leave me with a very different-looking breast and one that would not allow for an implant. He then discussed the drugs that most lumpectomy patients take for a period of years after surgery, and said he would not recommend having any more children while I was taking this drug. Now I needed to make a final decision about a third child? This was too much. All signs pointed to mastectomy—the mastectomy I had already signed up for at the other hospital.
I then confessed openly and honestly that I had made the decision to receive care at another hospital. He understood. As he explained, to him it was like choosing between Harvard and Yale. I really couldn’t go wrong, and I needed to go where I felt most comfortable. Most comfortable?—the words rang in my ears. Comfortable is not what I had been feeling in my new world. And it was suddenly clear: I needed to return to my original hospital.
My decision went against the tide of approval. It wasn’t as if I was choosing between surgery and an herbal remedy, but it was a lonely choice. Still, I was following my own instinct and doing what was right for me as a patient and a person, and that was a choice I could live with. It was my surgeon’s insight that helped me make my decision to have a mastectomy, but it was his manner that made me comfortable with that decision.
Almost six years have passed since this roller-coaster ride began. I am not the same person. I am aware of life and its fragility, of what it can sustain and what needs to be let go of. My marriage did not survive, but I did. I am grateful for the two children I had before cancer and for the miracle of my third child, who arrived after. I am aware of what I avoided—the later diagnosis, the chemo and other drugs. I am also more aware of who I am: I am someone who can make decisions for myself, listen to my heart, and confidently take things into my own hands. You’d think that, as a woman over 30, who has had a job, a business, and a family, I would have come to this place already. But I hadn’t. I had always looked to the expert—the one with more schooling, more confidence, or simply more opinions.
Now I listen to myself. I don’t have to be loud to be heard. I don’t have to be pushy to get my way. I don’t have to show myself at all times to be noticed. And for me, as for so many of us, that is not an easy lesson.