WEBVTT 00:00:00.730 --> 00:00:03.424 What's the worst that can happen? 00:00:04.336 --> 00:00:06.558 Almost exactly 10 years ago, 00:00:06.582 --> 00:00:10.307 I was sitting in an exam room that was way too cold 00:00:10.331 --> 00:00:12.828 waiting to meet my new oncologist. 00:00:12.852 --> 00:00:14.787 I was terrified. 00:00:14.811 --> 00:00:18.788 Even though my partner at the time was sitting right by my side, 00:00:18.812 --> 00:00:20.787 I felt completely alone. 00:00:21.298 --> 00:00:24.284 I had just been diagnosed with breast cancer, 00:00:24.308 --> 00:00:25.934 and it seemed at the time 00:00:25.958 --> 00:00:30.131 that a single bright spot on a scan of my right lung 00:00:30.155 --> 00:00:33.090 meant that the cancer had already spread. 00:00:33.719 --> 00:00:36.123 I had metastatic breast cancer. 00:00:36.701 --> 00:00:39.166 I had no medical training at this point, 00:00:39.190 --> 00:00:41.280 but I knew what it meant if it were true: 00:00:42.076 --> 00:00:44.360 incurable breast cancer. 00:00:45.745 --> 00:00:48.263 Terminal breast cancer. 00:00:48.988 --> 00:00:51.390 I was 27 years old, 00:00:51.414 --> 00:00:54.075 had just been accepted to medical school, 00:00:54.099 --> 00:00:57.357 and I wondered if I was already at the end of my life. NOTE Paragraph 00:00:58.438 --> 00:01:03.006 My new oncologist was not a warm person. 00:01:04.117 --> 00:01:06.371 She dealt in simple facts, 00:01:06.395 --> 00:01:08.774 as many brilliant physicians do. NOTE Paragraph 00:01:09.747 --> 00:01:13.623 "Our body is made up of cells," she started. NOTE Paragraph 00:01:14.361 --> 00:01:15.941 I stopped her. NOTE Paragraph 00:01:16.385 --> 00:01:18.574 "I'm starting medical school soon. 00:01:18.598 --> 00:01:19.828 I know." NOTE Paragraph 00:01:20.796 --> 00:01:25.493 Instead of taking this as a signal to go backward, to start again, 00:01:25.517 --> 00:01:27.227 she went forward. 00:01:27.251 --> 00:01:29.704 She said that I would need to start on chemotherapy 00:01:29.728 --> 00:01:31.188 to control the cancer. 00:01:31.212 --> 00:01:34.744 She launched into the details of the drug and the side effects 00:01:34.768 --> 00:01:35.963 and the schedule. 00:01:36.542 --> 00:01:40.504 I reminded her that we hadn't even yet biopsied the bright spot on my lung, 00:01:40.528 --> 00:01:44.474 and I asked if she was sure that it was cancer. 00:01:45.282 --> 00:01:50.748 I remember viscerally how she seemed almost frustrated with my question. 00:01:50.772 --> 00:01:54.266 Perhaps she thought I wasn't following along with her explanations, 00:01:54.290 --> 00:01:56.852 or, worse still, I was in denial. 00:01:57.935 --> 00:02:01.372 I simply wanted her to understand that, as her patient, 00:02:01.396 --> 00:02:06.730 the biopsy was not just a mere formality to prove an already foregone conclusion. 00:02:06.754 --> 00:02:11.057 It was a steel needle through skin, muscle and bone 00:02:11.081 --> 00:02:15.353 that would deliver a deep piece of me to the surface and answer a question 00:02:15.377 --> 00:02:18.251 I wish didn't have to be asked. 00:02:18.275 --> 00:02:22.540 Before the biopsy, I could be a 27-year-old woman 00:02:22.564 --> 00:02:25.578 who might have metastatic breast cancer, 00:02:25.602 --> 00:02:29.023 who probably had metastatic breast cancer. 00:02:29.047 --> 00:02:31.427 This is a critical distinction, 00:02:31.451 --> 00:02:35.917 but it's not one that's emphasized in the most elite oncology training. 00:02:36.774 --> 00:02:40.771 Instead, I was dismissed with an appointment to start treatment 00:02:40.795 --> 00:02:42.487 in just a few weeks. NOTE Paragraph 00:02:43.531 --> 00:02:47.185 So much has happened since that first visit. 00:02:47.209 --> 00:02:50.459 Ironically, the biopsy was not just a mere formality. 00:02:50.483 --> 00:02:53.514 My former oncologist was right. 00:02:53.538 --> 00:02:54.661 (Laughter) 00:02:54.685 --> 00:02:56.273 It did show cancer, 00:02:56.297 --> 00:03:00.237 but it was a totally separate lung cancer, 00:03:00.261 --> 00:03:02.256 and as crazy as it sounds, 00:03:02.280 --> 00:03:04.996 this was great news. 00:03:05.020 --> 00:03:07.596 I did not have metastatic breast cancer, 00:03:07.620 --> 00:03:09.909 I had two different cancers, 00:03:09.933 --> 00:03:12.377 but both of them were localized, 00:03:12.401 --> 00:03:14.655 and so the lung cancer was localized enough 00:03:14.679 --> 00:03:16.563 that it could be removed. 00:03:16.587 --> 00:03:20.258 And so the onslaught of treatments began with a lung surgery, 00:03:20.282 --> 00:03:21.996 continued with chemotherapy 00:03:22.020 --> 00:03:26.228 and ended with a breast surgery just after my 28th birthday. 00:03:26.925 --> 00:03:28.623 And then two weeks later, 00:03:29.298 --> 00:03:31.355 I started medical school. 00:03:32.360 --> 00:03:34.675 My new oncologist -- 00:03:34.699 --> 00:03:35.733 (Laughter) 00:03:35.757 --> 00:03:40.626 who deals much more fluidly both with facts and their implications, 00:03:40.650 --> 00:03:42.138 very reasonably suggested 00:03:42.162 --> 00:03:46.195 that I should defer my acceptance to medical school for a year, 00:03:46.219 --> 00:03:49.954 take some time to rest, to recover, 00:03:49.978 --> 00:03:51.793 and I trusted her advice. 00:03:51.817 --> 00:03:56.442 I felt terrible during the intensive chemotherapy sessions. 00:03:56.466 --> 00:03:58.077 And so I wrote to the dean. 00:03:58.101 --> 00:04:00.125 I explained my circumstances, 00:04:00.149 --> 00:04:02.648 and a deferral was speedily granted. NOTE Paragraph 00:04:03.460 --> 00:04:05.945 But as the chemo fog lifted, 00:04:05.969 --> 00:04:09.232 I wondered what I was going to do with a year. 00:04:09.804 --> 00:04:12.201 Should I go to the beach? 00:04:12.225 --> 00:04:13.257 (Laughter) 00:04:13.281 --> 00:04:15.704 I wasn't really a beach person. 00:04:15.728 --> 00:04:16.806 (Laughter) 00:04:16.830 --> 00:04:20.851 And how many years did I have left, anyway? 00:04:20.875 --> 00:04:23.029 I really wanted to go to medical school. 00:04:23.053 --> 00:04:25.869 It seemed like a missing piece of my puzzle. NOTE Paragraph 00:04:26.474 --> 00:04:30.018 So instead of going around and around with indecision, 00:04:30.042 --> 00:04:33.044 I asked myself: What's the worst that could happen? 00:04:33.068 --> 00:04:36.882 Well, I could be too weak or too sick to do the work. 00:04:36.906 --> 00:04:39.328 It could be too hard for me emotionally. 00:04:39.352 --> 00:04:42.279 I could fail out of medical school. 00:04:42.303 --> 00:04:45.901 But then I remembered, that wouldn't be the worst thing that happened to me 00:04:45.925 --> 00:04:47.341 even that year. 00:04:47.365 --> 00:04:50.142 So why not get started? 00:04:50.166 --> 00:04:54.123 Why not continue living the way that I wanted to live? 00:04:54.671 --> 00:04:56.218 So I did. 00:04:56.242 --> 00:04:58.221 Bald and rail thin, 00:04:58.245 --> 00:05:01.894 I put on my best earrings and my favorite dress, 00:05:01.918 --> 00:05:03.624 and I started. 00:05:03.648 --> 00:05:05.807 I pretended to belong, 00:05:05.831 --> 00:05:07.292 and I began to. 00:05:07.918 --> 00:05:11.029 There is no way to describe how hard it was. 00:05:11.053 --> 00:05:13.509 Some days it felt impossible. 00:05:13.533 --> 00:05:17.787 It felt as I was doing things that would never matter in the future. 00:05:18.312 --> 00:05:21.780 But every day, I asked myself: Are you still enjoying this? 00:05:21.804 --> 00:05:23.963 Is this still what you want to be doing? 00:05:24.451 --> 00:05:26.651 And every day, the answer was yes, 00:05:26.675 --> 00:05:29.175 sometimes a very qualified yes, 00:05:29.199 --> 00:05:30.619 but a yes. 00:05:31.079 --> 00:05:33.465 And then, just as I was getting comfortable 00:05:33.489 --> 00:05:37.208 and feeling like I might not necessarily fail out of medical school, 00:05:37.232 --> 00:05:40.377 I received even more devastating news. 00:05:40.401 --> 00:05:47.032 I learned that I had a mutation in a gene called TP53, or p53 for short. 00:05:47.056 --> 00:05:49.618 Known as the guardian of the genome, 00:05:49.642 --> 00:05:50.934 a mutation, 00:05:50.958 --> 00:05:55.782 p53 is responsible for supervising the repair of our DNA. 00:05:56.166 --> 00:05:59.666 A mutation in this gene means errors go uncorrected. 00:05:59.690 --> 00:06:03.602 It means that normal cells become cancerous at a much higher rate. 00:06:04.358 --> 00:06:06.250 All of a sudden, with this knowledge, 00:06:06.274 --> 00:06:09.196 my medical history made a terrible kind of sense. 00:06:09.544 --> 00:06:14.044 I had had a childhood cancer -- rhabdomyosarcoma -- at age seven. 00:06:14.068 --> 00:06:16.074 It recurred when I was a teenager. 00:06:16.098 --> 00:06:19.709 And this was all before p53 had been discovered in the lab. 00:06:20.221 --> 00:06:23.661 Then I'd had young adult breast and lung cancers. NOTE Paragraph 00:06:24.373 --> 00:06:26.502 With the knowledge of this mutation, 00:06:26.526 --> 00:06:29.023 it seemed that there was likely no end 00:06:29.047 --> 00:06:32.164 to the number of cancers that I could expect in my future. 00:06:33.414 --> 00:06:34.749 And yet, 00:06:34.773 --> 00:06:38.753 I decided to become a radiation oncologist. 00:06:38.777 --> 00:06:39.841 (Laughter) 00:06:39.865 --> 00:06:43.885 I hoped to graduate from residency in just a few months, 00:06:43.909 --> 00:06:45.384 move to a new city 00:06:45.408 --> 00:06:49.814 and start my first real job as a doctor and researcher, 00:06:50.882 --> 00:06:53.265 because of grit, 00:06:53.289 --> 00:06:54.910 because of privilege, 00:06:54.934 --> 00:06:57.317 because of therapy, 00:06:57.341 --> 00:07:01.804 because of my medical teams and my family and my teachers, 00:07:02.595 --> 00:07:06.704 because genetic diagnoses should give us the knowledge 00:07:06.728 --> 00:07:08.046 to move forward. 00:07:08.683 --> 00:07:11.701 And even in the year 2020, 00:07:11.725 --> 00:07:16.406 that generally doesn't mean miracle cures or medical breakthroughs. 00:07:16.993 --> 00:07:20.043 Having a devastating genetic diagnosis 00:07:20.067 --> 00:07:23.314 means learning to live with uncertainty. 00:07:24.028 --> 00:07:27.371 It means learning that you and your diagnosis 00:07:27.395 --> 00:07:29.625 are not the worst thing that could happen. 00:07:30.481 --> 00:07:32.393 Learning to live with uncertainty 00:07:32.417 --> 00:07:34.791 means walking forward into a life 00:07:34.815 --> 00:07:39.334 that is as full of beauty as it is of challenges. 00:07:39.911 --> 00:07:44.856 It means learning for yourself that cancer is just part of your story. 00:07:44.880 --> 00:07:47.392 It may not be the worst thing that happens to you, 00:07:47.416 --> 00:07:49.323 and if it is, that's OK. 00:07:49.347 --> 00:07:51.816 You can claim that, and you can own that, 00:07:51.840 --> 00:07:55.572 but let that be a narrative that you author and you authorize, 00:07:55.596 --> 00:07:58.634 not one that's prescribed to you by someone else. 00:07:58.658 --> 00:08:02.896 Have your deferral letter in hand, but use it on your terms. NOTE Paragraph 00:08:04.353 --> 00:08:07.075 As I come to the end of my oncology training, 00:08:07.099 --> 00:08:10.537 I have déjà vu again and again with the following scenario: 00:08:10.561 --> 00:08:12.531 A patient has cancer. 00:08:12.555 --> 00:08:14.317 There are several options, 00:08:14.341 --> 00:08:20.286 all of which offer a different balance between cure and quality of life, 00:08:20.310 --> 00:08:24.166 between the possibility of alleviating suffering 00:08:24.190 --> 00:08:27.098 and the possibility of causing suffering. 00:08:27.122 --> 00:08:29.202 An oncologist lays out the options, 00:08:29.226 --> 00:08:32.540 but, somewhere in the discussion, things get skewed. 00:08:32.564 --> 00:08:34.614 The choice becomes something more like, 00:08:34.638 --> 00:08:37.957 "Well, you could choose to do something 00:08:37.981 --> 00:08:40.566 or you could choose to do nothing. 00:08:41.394 --> 00:08:45.735 We could be aggressive, and treat your cancer, 00:08:45.759 --> 00:08:47.117 or we could watch it." 00:08:47.844 --> 00:08:50.412 And 9.9 times out of 10, the patient says, 00:08:50.436 --> 00:08:54.050 "I want to do everything I can do." 00:08:54.655 --> 00:08:56.350 Of course. 00:08:56.374 --> 00:08:59.741 Who wouldn't want everything? 00:09:00.446 --> 00:09:02.049 But what is everything? 00:09:02.781 --> 00:09:08.424 Is everything the ability to sit in your own home in front of your window 00:09:08.448 --> 00:09:11.577 bathed in sunshine and surrounded by family? 00:09:12.041 --> 00:09:16.043 Is everything still being able to feel your fingers and your toes 00:09:16.067 --> 00:09:18.749 because they haven't gone numb from chemotherapy? 00:09:19.719 --> 00:09:24.061 As oncologists, our everything is cancer treatment. 00:09:24.672 --> 00:09:29.962 It's radiation and surgery and chemotherapy and novel treatments. 00:09:29.986 --> 00:09:32.383 And for us, the worst thing that could happen -- 00:09:32.407 --> 00:09:35.121 and I have heard more than one oncologist say this -- 00:09:35.145 --> 00:09:36.731 the worst thing that could happen 00:09:36.755 --> 00:09:39.715 is that the patient will develop metastatic disease. 00:09:39.739 --> 00:09:43.306 Or, the worst thing that could happen is that five years from now, 00:09:43.330 --> 00:09:46.417 the cancer will grow, and I'll have to give more radiation. NOTE Paragraph 00:09:47.047 --> 00:09:49.667 As a patient and as an oncologist, 00:09:49.691 --> 00:09:53.843 I would never argue that these are not devastating outcomes. 00:09:53.867 --> 00:09:55.779 But are they the worst? 00:09:56.192 --> 00:09:58.691 Should cancer control, 00:09:58.715 --> 00:10:01.942 be at the center of our thinking, always? 00:10:03.727 --> 00:10:10.727 Many unspeakably, unfathomably painful and brutal things have happened to me 00:10:10.751 --> 00:10:14.357 because of my cancers and my genetic mutation. 00:10:14.845 --> 00:10:19.031 And yet, I consider myself very lucky indeed, 00:10:19.055 --> 00:10:22.063 because the worst thing that could happen never came to pass; 00:10:22.902 --> 00:10:28.183 because I have let devastation and uncertainty sit at the table, 00:10:28.207 --> 00:10:30.712 but somewhere off to the side. 00:10:30.736 --> 00:10:33.348 When I was diagnosed with metastatic breast cancer, 00:10:33.372 --> 00:10:37.539 I went to Boston for a second opinion, because what could I lose? 00:10:37.563 --> 00:10:40.533 When my oncologist gave me very good and very safe 00:10:40.557 --> 00:10:41.935 and very standard advice, 00:10:41.959 --> 00:10:44.171 I started medical school anyway, 00:10:44.195 --> 00:10:47.207 even though I was undergoing active cancer treatment. 00:10:48.390 --> 00:10:51.402 Instead of shying away from patients with cancer, 00:10:51.426 --> 00:10:53.768 I became a radiation oncologist, 00:10:53.792 --> 00:10:56.255 and I work with patients who are very much like me 00:10:56.279 --> 00:10:57.622 every single day. 00:10:58.325 --> 00:11:03.534 Instead of imagining the suffering that I might cause to a future partner 00:11:03.558 --> 00:11:05.620 when I died of cancer, 00:11:05.644 --> 00:11:08.557 I married my wonderful husband. 00:11:09.398 --> 00:11:11.475 Because the worst thing that can happen 00:11:11.499 --> 00:11:14.728 is always a series of negatives. 00:11:14.752 --> 00:11:16.859 It's blank spaces 00:11:16.883 --> 00:11:18.974 that should be filled with life. NOTE Paragraph 00:11:20.351 --> 00:11:26.498 So what is the most that I have leaned in to this kind of radical uncertainty? 00:11:27.656 --> 00:11:30.800 Well, this is William. 00:11:32.064 --> 00:11:37.692 He is the most joyful person that I have ever met, 00:11:38.691 --> 00:11:43.857 and in just over a year, he has already made the world a better place. NOTE Paragraph 00:11:46.341 --> 00:11:50.263 As oncologists, we talk to our patients 00:11:50.287 --> 00:11:52.188 as if the worst thing that could happen 00:11:52.212 --> 00:11:54.490 is that their cancer could come back, 00:11:54.514 --> 00:11:57.598 or that it could spread, or that they could die from it. 00:11:58.071 --> 00:12:00.888 As a patient, I know that these are paramount. 00:12:00.912 --> 00:12:03.812 But I want to change the way that we think about this, 00:12:03.836 --> 00:12:07.600 and I want to change the way that we talk about this with our patients. 00:12:08.171 --> 00:12:09.702 As a patient, 00:12:09.726 --> 00:12:14.545 the worst thing that can happen is that cancer robs you of opportunity, 00:12:14.569 --> 00:12:16.564 of the ability to be 00:12:16.588 --> 00:12:17.901 and to do 00:12:17.925 --> 00:12:19.442 and to love. 00:12:20.044 --> 00:12:21.570 And it will. 00:12:21.594 --> 00:12:24.276 At least temporarily it will. 00:12:24.802 --> 00:12:28.032 But to minimize this loss of life in the living, 00:12:28.056 --> 00:12:34.432 that is the harder, and I would say, truer job of the oncologist: 00:12:34.456 --> 00:12:38.820 to take all the tools that we have and situate them in the context 00:12:38.844 --> 00:12:41.461 of a patient's whole entire life; 00:12:41.485 --> 00:12:45.505 to be guides for how to sit with suffering, 00:12:45.529 --> 00:12:47.713 acknowledge it deeply, 00:12:47.737 --> 00:12:52.820 but to not let fear of future suffering be the narrative for the journey forward. NOTE Paragraph 00:12:54.053 --> 00:12:58.525 One of my mentors always says the medicine part is easy. 00:12:59.571 --> 00:13:03.491 And it never feels that way to a junior doctor, 00:13:03.515 --> 00:13:06.104 but its contours are finite. 00:13:06.695 --> 00:13:12.680 We have big studies to guide us, and it's what we learn to do in residency. 00:13:13.695 --> 00:13:20.686 Much harder is learning how to help each patient navigate the multitudes 00:13:20.710 --> 00:13:22.876 contained in their illness. NOTE Paragraph 00:13:24.548 --> 00:13:29.618 So I find it really funny that, in retrospect, 00:13:29.642 --> 00:13:32.380 my life looks like a neat package. 00:13:32.938 --> 00:13:37.134 It looks as if I planned each successive step, 00:13:37.158 --> 00:13:41.620 and that perhaps cancer has led to the good things in my life. 00:13:42.465 --> 00:13:45.672 Step one: apply to medical school. 00:13:45.696 --> 00:13:49.107 Step two: get diagnosed with and treated for cancer. 00:13:49.131 --> 00:13:51.580 And step three: have it all, 00:13:51.604 --> 00:13:54.085 a career and a family. 00:13:55.266 --> 00:13:57.187 But I will tell you 00:13:57.941 --> 00:14:02.586 that each phase was a leap of faith 00:14:02.610 --> 00:14:06.868 despite an almost paralyzing uncertainty. 00:14:08.102 --> 00:14:09.798 And so it's that courage 00:14:09.822 --> 00:14:12.698 that I try to give to each of my patients. 00:14:13.287 --> 00:14:17.501 I try to do this regardless of the technical medical details 00:14:17.525 --> 00:14:19.651 of cancers and treatment decisions 00:14:19.675 --> 00:14:21.401 and mutations, 00:14:21.425 --> 00:14:24.281 regardless of the slippery fiction 00:14:24.305 --> 00:14:25.833 of prognosis. 00:14:26.637 --> 00:14:29.483 I try to learn what they want 00:14:29.507 --> 00:14:31.444 and what they need, 00:14:31.468 --> 00:14:34.886 what they wish and what they worry, 00:14:36.239 --> 00:14:39.122 what they dream about, 00:14:40.400 --> 00:14:43.258 what animated them before 00:14:43.282 --> 00:14:49.901 and what will sustain them during the beastly process of cancer treatment. 00:14:51.082 --> 00:14:54.538 It doesn't actually take that much time. 00:14:55.746 --> 00:15:00.342 It does take a few focused, quiet moments 00:15:00.366 --> 00:15:03.803 that require intentional cultivation. 00:15:04.956 --> 00:15:07.430 But this is partnership, 00:15:08.487 --> 00:15:10.482 and it matters, 00:15:11.538 --> 00:15:14.587 because the worst thing that can happen 00:15:14.611 --> 00:15:20.921 is to have an oncologist who does everything -- everything -- 00:15:20.945 --> 00:15:24.079 to help cure your cancer 00:15:24.103 --> 00:15:26.399 and who does nothing 00:15:26.423 --> 00:15:29.024 to help you live your life. NOTE Paragraph 00:15:30.587 --> 00:15:31.913 Thank you. NOTE Paragraph 00:15:31.937 --> 00:15:36.460 (Applause)