What's the worst that could happen? Almost exactly 10 years ago, I was sitting in an exam room that was way too cold waiting to meet my new oncologist. I was terrified. Even though my partner at the time was sitting right by my side, I felt completely alone. I had just been diagnosed with breast cancer, and it seemed at the time that a single bright spot on a scan of my right lung meant that the cancer had already spread. I had metastatic breast cancer. I had no medical training at this point, but I knew what it meant if it were true: incurable breast cancer. Terminal breast cancer. I was 27 years old, had just been accepted to medical school, and I wondered if I was already at the end of my life.
My new oncologist was not a warm person. She dealt in simple facts, as many brilliant physicians do. "Our body is made up of cells," she started. I stopped her. "I'm starting medical school soon. I know." Instead of taking this as a signal to go backward, to start again, she went forward. She said that I would need to start on chemotherapy to control the cancer. She launched into the details of the drug and the side effects and the schedule. I reminded her that we hadn't even yet biopsied the bright spot on my lung, and I asked if she was sure that it was cancer.
I remember viscerally how she seemed almost frustrated with my question. Perhaps she thought I wasn't following along with her explanations, or, worse still, I was in denial. I simply wanted her to understand that, as her patient, the biopsy was not just a mere formality to prove an already foregone conclusion. It was a steel needle through skin, muscle and bone that would deliver a deep piece of me to the surface and answer a question I wish didn't have to be asked. Before the biopsy, I could be a 27-year-old woman who might have metastatic breast cancer, who probably had metastatic breast cancer. This is a critical distinction, but it's not one that's emphasized in the most elite oncology training. Instead, I was dismissed with an appointment to start treatment in just a few weeks.
So much has happened since that first visit. Ironically, the biopsy was not just a mere formality. My former oncologist was right.
It did show cancer, but it was a totally separate lung cancer, and as crazy as it sounds, this was great news. I did not have metastatic breast cancer, I had two different cancers, but both of them were localized, and so the lung cancer was localized enough that it could be removed. And so the onslaught of treatments began with a lung surgery, continued with chemotherapy and ended with a breast surgery just after my 28th birthday.
And then two weeks later, I started medical school. My new oncologist —
who deals much more fluidly both with facts and their implications, very reasonably suggested that I should defer my acceptance to medical school for a year, take some time to rest, to recover, and I trusted her advice. I felt terrible during the intensive chemotherapy sessions. And so I wrote to the dean. I explained my circumstances, and a deferral was speedily granted.
But as the chemo fog lifted, I wondered what I was going to do with a year. Should I go to the beach?
I wasn't really a beach person.
And how many years did I have left, anyway? I really wanted to go to medical school. It seemed like a missing piece of my puzzle.
So instead of going around and around with indecision, I asked myself: What's the worst that could happen? Well, I could be too weak or too sick to do the work. It could be too hard for me emotionally. I could fail out of medical school. But then I remembered, that wouldn't be the worst thing that happened to me even that year. So why not get started? Why not continue living the way that I wanted to live? So I did.
Bald and rail thin, I put on my best earrings and my favorite dress, and I started. I pretended to belong, and I began to. There is no way to describe how hard it was. Some days it felt impossible. It felt as if I was doing things that would never matter in the future. But every day, I asked myself: Are you still enjoying this? Is this still what you want to be doing? And every day, the answer was yes, sometimes a very qualified yes, but a yes.
And then, just as I was getting comfortable and feeling like I might not necessarily fail out of medical school, I received even more devastating news. I learned that I had a mutation in a gene called TP53, or p53 for short. Known as the guardian of the genome, a mutation — p53 is responsible for supervising the repair of our DNA. A mutation in this gene means errors go uncorrected. It means that normal cells become cancerous at a much higher rate. All of a sudden, with this knowledge, my medical history made a terrible kind of sense. I had had a childhood cancer — rhabdomyosarcoma — at age seven. It recurred when I was a teenager. And this was all before p53 had been discovered in the lab. Then I'd had young adult breast and lung cancers.
With the knowledge of this mutation, it seemed that there was likely no end to the number of cancers that I could expect in my future. And yet, I decided to become a radiation oncologist.
I hope to graduate from residency in just a few months, move to a new city and start my first real job as a doctor and researcher, because of grit, because of privilege, because of therapy, because of my medical teams and my family and my teachers, because genetic diagnoses should give us the knowledge to move forward.
And even in the year 2020, that generally doesn't mean miracle cures or medical breakthroughs. Having a devastating genetic diagnosis means learning to live with uncertainty. It means learning that you and your diagnosis are not the worst thing that could happen. Learning to live with uncertainty means walking forward into a life that is as full of beauty as it is of challenges. It means learning for yourself that cancer is just part of your story. It may not be the worst thing that happens to you, and if it is, that's OK. You can claim that, and you can own that, but let that be a narrative that you author and you authorize, not one that's prescribed to you by someone else. Have your deferral letter in hand, but use it on your terms.
As I come to the end of my oncology training, I have déjà vu again and again with the following scenario: A patient has cancer. There are several options, all of which offer a different balance between cure and quality of life, between the possibility of alleviating suffering and the possibility of causing suffering. An oncologist lays out the options, but, somewhere in the discussion, things get skewed. The choice becomes something more like, "Well, you could choose to do something, or you could choose to do nothing. We could be aggressive, and treat your cancer, or we could watch it." And 9.9 times out of 10, the patient says, "I want to do everything I can do." Of course. Who wouldn't want everything?
But what is everything? Is everything the ability to sit in your own home in front of your window bathed in sunshine and surrounded by family? Is everything still being able to feel your fingers and your toes, because they haven't gone numb from chemotherapy? As oncologists, our everything is cancer treatment. It's radiation and surgery and chemotherapy and novel treatments. And for us, the worst thing that could happen — and I have heard more than one oncologist say this — the worst thing that could happen is that the patient will develop metastatic disease. Or, the worst thing that could happen is that five years from now, the cancer will grow, and I'll have to give more radiation.
As a patient and as an oncologist, I would never argue that these are not devastating outcomes. But are they the worst? Should cancer control be at the center of our thinking, always?
Many unspeakably, unfathomably painful and brutal things have happened to me because of my cancers and my genetic mutation. And yet, I consider myself very lucky indeed, because the worst thing that could happen never came to pass; because I have let devastation and uncertainty sit at the table, but somewhere off to the side. When I was diagnosed with metastatic breast cancer, I went to Boston for a second opinion, because what could I lose? When my oncologist gave me very good and very safe and very standard advice, I started medical school anyway, even though I was undergoing active cancer treatment.
Instead of shying away from patients with cancer, I became a radiation oncologist, and I work with patients who are very much like me every single day. Instead of imagining the suffering that I might cause to a future partner when I died of cancer, I married my wonderful husband. Because the worst thing that can happen is always a series of negatives. It's blank spaces that should be filled with life.
So what is the most that I have leaned in to this kind of radical uncertainty? Well, this is William. He is the most joyful person that I have ever met, and in just over a year, he has already made the world a better place.
As oncologists, we talk to our patients as if the worst thing that could happen is that their cancer could come back, or that it could spread, or that they could die from it. As a patient, I know that these are paramount. But I want to change the way that we think about this, and I want to change the way that we talk about this with our patients. As a patient, the worst thing that can happen is that cancer robs you of opportunity, of the ability to be and to do and to love. And it will. At least temporarily it will. But to minimize this loss of life in the living, that is the harder, and I would say, truer job of the oncologist: to take all the tools that we have and situate them in the context of a patient's whole entire life; to be guides for how to sit with suffering, acknowledge it deeply, but to not let fear of future suffering be the narrative for the journey forward.
One of my mentors always says the medicine part is easy. And it never feels that way to a junior doctor, but its contours are finite. We have big studies to guide us, and it's what we learn to do in residency. Much harder is learning how to help each patient navigate the multitudes contained in their illness.
So I find it really funny that, in retrospect, my life looks like a neat package. It looks as if I planned each successive step and that perhaps cancer has led to the good things in my life. Step one: apply to medical school. Step two: get diagnosed with and treated for cancer. And step three: have it all, a career and a family. But I will tell you that each phase was a leap of faith despite an almost paralyzing uncertainty. And so it's that courage that I try to give to each of my patients. I try to do this regardless of the technical medical details of cancers and treatment decisions and mutations, regardless of the slippery fiction of prognosis. I try to learn what they want and what they need, what they wish and what they worry, what they dream about, what animated them before and what will sustain them during the beastly process of cancer treatment. It doesn't actually take that much time. It does take a few focused, quiet moments that require intentional cultivation. But this is partnership, and it matters, because the worst thing that can happen is to have an oncologist who does everything — everything — to help cure your cancer and who does nothing to help you live your life.