WEBVTT

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What's the worst that can happen?

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Almost exactly 10 years ago,

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I was sitting in an exam room
that was way too cold

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waiting to meet my new oncologist.

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I was terrified.

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Even though my partner at the time

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was sitting right by my side,

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I felt completely alone.

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I had just been diagnosed
with breast cancer,

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and it seemed at the time

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that a single bright spot
on a scan of my right lung

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meant that the cancer had already spread.

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I had metastatic breast cancer.

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I had no medical training at this point,

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but I knew what it meant if it were true:

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incurable breast cancer.

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Terminal breast cancer.

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I was 27 years old,

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had just been accepted to medical school,

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and I wondered if I was already
at the end of my life.

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My new oncologist was not a warm person.

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She dealt in simple facts,

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as many brilliant physicians do.

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"Our body is made up
of cells," she started.

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I stopped her.

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"I'm starting medical school soon.

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I know."

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Instead of taking this as a signal
to go backward, to start again,

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she went forward.

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She said that I would need
to start on chemotherapy

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to control the cancer.

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She launched into the details
of the drug and the side effects

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and the schedule.

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I reminded her that we hadn't even yet
biopsied the bright spot on my lung,

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and I asked if she was sure
that it was cancer.

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I remember viscerally how she seemed
almost frustrated with my question.

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Perhaps she thought I wasn't
following along with her explanations,

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or, worse still, I was in denial.

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I simply wanted her to understand
that, as her patient,

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the biopsy was not just a mere formality
to prove an already foregone conclusion.

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It was a steel needle
through skin, muscle and bone

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that would deliver a deep piece of me
to the surface and answer a question

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I wish didn't have to be asked.

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Before the biopsy, I could be
a 27-year old woman

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who might have metastatic breast cancer,

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who probably had metastatic breast cancer.

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This is a critical distinction,

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but it's not one that's emphasized
in the most elite oncology training.

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Instead, I was dismissed
with an appointment to start treatment

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in just a few weeks.

NOTE Paragraph

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So much has happened
since that first visit.

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Ironically, the biopsy was not
just a mere formality.

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My former oncologist was right.

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It did show cancer,

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but it was a totally separate lung cancer,

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and as crazy as it sounds,

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this was great news.

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I did not have metastatic breast cancer,

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I had two different cancers,

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but both of them were localized,

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and so the lung cancer
was localized enough

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that it could be removed.

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And so the onslaught of treatments began
with a lung surgery,

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continued with chemotherapy,

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and ended with a breast surgery
just after my 28th birthday.

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And then two weeks later,

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I started medical school.

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My new oncologist,

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who deals much more fluidly
both with facts and their implications,

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very reasonably suggested

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that I should defer my acceptance
to medical school for a year,

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take some time to rest, to recover,

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and I trusted her advice.

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I felt terrible during the intensive
chemotherapy sessions.

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And so I wrote to the Dean.

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I explained my circumstances,

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and a deferral was speedily granted.

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But as the chemo fog lifted,

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I wondered what I was going
to do with a year.

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Should I go to the beach?

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I wasn't really a beach person.

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(Laughter)

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And how many years did I have left anyway?

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I really wanted to go to medical school.

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It seemed like a missing
piece of my puzzle.

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So instead of going around
and around with indecision,

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I asked myself, what's the worst
that could happen?

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Well, I could be too weak
or too sick to do the work.

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It could be too hard for me emotionally.

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I could fail out of medical school.

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But then I remembered, that wouldn't be
the worst thing that happened to me

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even that year.

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So why not get started?

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Why not continue living
the way that I wanted to live?

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So I did.

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Bald and rail thin,

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I put on my best earrings
and my favorite dress,

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and I started.

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I pretended to belong,

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and I began to.

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There is no way to describe
how hard it was.

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Some days it felt impossible.

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It felt as I was doing things
that would never matter in the future.

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But every day, I asked myself,
are you still enjoying this?

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Is this still what you want to be doing?

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And every day, the answer was yes,

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sometimes a very qualified yes,

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but a yes.

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And then, just as I
was getting comfortable

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and feeling like I might not necessarily
fail out of medical school,

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I received even more devastating news.

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I learned that I had a mutation
in a gene called TP53, or p53 for short.

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Known as the guardian of the genome,

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a mutation, p53 is responsible
for supervising the repair of our DNA.

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A mutation in this gene
means errors go uncorrected.

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It means that normal cells
become cancerous at a much higher rate.

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All of a sudden, with this knowledge,

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my medical history
made a terrible kind of sense.

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I had had a childhood cancer --
rhabdomyosarcoma -- at age seven.

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It recurred when I was a teenager.

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And this was all before p53
had been discovered in the lab.

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Then I'd had young adult
breast and lung cancers.

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With the knowledge of this mutation,

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it seemed that there was likely
no end to the number of cancers

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that I could expect in my future.

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And yet,

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I decided to become
a radiation oncologist.

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(Laughter)

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I hoped to graduate from residency
in just a few months,

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move to a new city,

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and start my first real job

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as a doctor and researcher,

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because of grit,

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because of privilege,

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because of therapy,

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because of my medical teams
and my family and my teachers,

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because genetic diagnoses

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should give us the knowledge
to move forward.

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And even in the year 2020,

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that generally doesn't mean
miracle cures or medical breakthroughs.

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Having a devastating genetic diagnosis

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means learning to live with uncertainty.

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It means learning that you,
and your diagnosis,

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are not the worst thing that could happen.

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Learning to live with uncertainty

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means walking forward into a life

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that is as full of beauty
as it is of challenges.

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It means learning for yourself
that cancer is just part of your story.

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It may not be the worst thing
that happens to you,

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and if it is, that's OK.

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You can claim that, and you can own that,

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but let that be a narrative
that you author and you authorize,

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not one that's prescribed to you
by someone else.

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Have your deferral letter in hand,
but use it on your terms.

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As I come to the end
of my oncology training,

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I have deja vu again and again
with the following scenario.

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A patient has cancer.

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There are several options,

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all of which offer a different balance
between cure and quality of life,

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between the possibility
of alleviating suffering

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and the possibility of causing suffering.

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An oncologist lays out the options,

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but, somewhere in the discussion,
things get skewed.

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The choice becomes something more like,

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well, you could choose to do something

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or you could choose to do nothing.

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We could be aggressive

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and treat your cancer,

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or we could watch it,

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and 9.9 times out of 10, the patient says,

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"I want to do everything I can do."

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Of course.

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Who wouldn't want everything?

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But what is everything?

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Is everything the ability to sit
in your own home in front of your window

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bathed in sunshine
and surrounded by family?

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Is everything still being able
to feel your fingers and your toes

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because they haven't gone numb
from chemotherapy.

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As oncologists, our everything
is cancer treatment.

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It's radiation and surgery
and chemotherapy and novel treatments.

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And for us, the worst thing
that could happen,

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and I have heard more than one
oncologist say this,

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the worst thing that could happen
is that the patient will develop

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metastatic disease.

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Or, the worst thing that could happen
is that five years from now,

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the cancer will grow and I'll
have to give more radiation.

NOTE Paragraph

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As a patient and as an oncologist,

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I would never argue that these
are not devastating outcomes.

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But are they the worst?

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Should cancer control,

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be at the center, of our thinking always?

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Many unspeakably, unfathomably painful
and brutal things have happened to me

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because of my cancers
and my genetic mutation.

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And yet, I consider myself
very lucky indeed,

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because the worst thing
that could happen never came to pass,

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because I have let devastation
and uncertainty sit at the table,

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but somewhere off to the side.

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When I was diagnosed
with metastatic breast cancer,

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I went to Boston for a second opinion,
because what could I lose?

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When my oncologist gave me
very good and very safe

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and very standard advice,

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I started medical school anyway,

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even though I was undergoing
active cancer treatment.

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Instead of shying away
from patients with cancer,

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I became a radiation oncologist,

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and I work with patients
who are very much like me

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every single day.

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Instead of imagining the suffering
that I might cause to a future partner

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when I died of cancer,

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I married my wonderful husband.

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Because, the worst thing that can happen

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is always a series of negatives.

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It's blank spaces

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that should be filled with life.

NOTE Paragraph

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So what is the most that I have leaned in
to this kind of radical uncertainty?

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Well, this is William.

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He is the most joyful person
that I have ever met,

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and in just over a year, he has already
made the world a better place.

NOTE Paragraph

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As oncologists, we talk to our patients

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as if the worst thing that could happen

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is that their cancer could come back,

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or that it could spread,
or that they could die from it.

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As a patient, I know
that these are paramount,

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but I want to change the way
that we think about this,

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and I want to change the way
that we talk about this with our patients.

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As a patient,

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the worst thing that can happen
is that cancer robs you of opportunity,

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of the ability to be and to do

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and to love.

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And it will.

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At least, temporarily, it will.

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But to minimize this loss
of life in the living,

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that is the harder

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and I would say truer job
of the oncologist:

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to take all the tools that we have
and situate them in the context

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of a patient's whole entire life;

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to be guides for how
to sit with suffering,

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acknowledge it deeply,

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but to not let fear of future suffering
be the narrative for the journey forward.

NOTE Paragraph

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One of my mentors always says,

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the medicine part is easy,

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and it never feels that way
to a junior doctor,

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but it's contours are finite.

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We have big studies to guide us,
and it's what we learn to do in residency.

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Much harder is learning how to help
each patient navigate the multitudes

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contained in their illness.

NOTE Paragraph

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So I find it really funny

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that, in retrospect, my life
looks like a neat package.

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It looks as if I planned
each successive step,

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and that perhaps cancer
has led to the good things in my life.

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Step one: apply to medical school.

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Step two: get diagnosed with
and treated for cancer.

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And step three: have it all,

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a career and a family.

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But I will tell you

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that each phase was a leap of faith

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despite an almost paralyzing uncertainty.

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And so it's that courage

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that I try to give to each of my patients.

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I try to do this regardless
of the technical medical details

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of cancers and treatment decisions

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and mutations,

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regardless of the slippery fiction

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of prognosis.

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I try to learn what they want

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and what they need,

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what they wish and what they worry,

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what they dream about,

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what animated them before

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and what will sustain them during
the beastly process of cancer treatment.

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It doesn't actually take that much time.

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It does take a few focused, quiet moments

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that require intentional cultivation.

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But this is partnership,

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and it matters,

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because the worst thing that can happen

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is to have an oncologist
who does everything,

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everything to help cure your cancer

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and who does nothing
to help you live your life.

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Thank you.

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(Applause)