hey, larry.

it's so to be here with you. it's great to see you, amy. thanks for joining me. oh, no, it's my pleasure. i wanted to talk about your amazing book. it's partly a family memoir and it's partly this thrilling story of trying to unravel this scientific and medical mystery. why did you decide to combine those stories than just a memoir or justice science story? you know, i have to go back to how i got interested in this. and i wasn't really initially thinking of writing a book in september of 2019. my brother died with death. my family had been wiped by cancer. my mother died in 1968 when she was just 42 years old. and she had had a breast cancer and she had had cancer off and on for about a decade.

our youngest sister died when she was 24 of an abdominal cancer. our next sister died at age 32 of lung cancer and also one of my nephews, one of my brothers son, had cancer at age two and eventually died of his third cancer. he was 39. my brother had his first cancer at 46 and died at 69. and you know, i just was curious to know more about what this inherited condition was that had caused all these cancers died. and it was called lee brown meanie syndrome. i knew very little about it. i knew that it was caused by a mutation in a really, you know, kind of an important gene called p53, which i knew very little about. so i started digging around just kind of, you know, of going on the internet. i wanted to understand this. and it wants me on this journey of discovery. and that was as you mentioned, it was two types of discovery. it was the discovery about my family and the discovery about,

you know, kind of how these doctors solve this medical mystery and became a little bit broader discovery about how science evolves, how they understand they have cancer evolves. and it just occurred to me, you know, kind of i wanted to tell a story that would reach a lot of people. and in doing so, i wanted to be not just about my family, although i thought it was an interesting story, but also a family about, you know, kind of scientific describe very about, you know, researchers going out into the unknown, finding stuff that, you know, and trying to help people. and that's how idea of kind of when i finally decided to write a book weaving together these stories probably would be the best way to reach people. to touch people. yeah, absolutely. i mean, i think it's really interesting that one of the main points you make is that the scientists who sort of made these discoveries relied on family trees and family and families.

you know what can you talk a little bit about how important family history is in understanding diseases like cancer? yeah, you know, so you go back, it's one thing that i had to do and i think in portrait readers do, because you think how much is known about cancer today? a lot is known about cancer today. we're still trying to solve it. but if you go back to the 1960, us cancer was quite a bit of a black box. at that time, the belief of most cancer researchers was that the vast majority of cancers were caused by viruses. so a lot of the research was focused on that. but still, you know, kind of there was much that was not understood. and it turns out that a bunch of what was understood was wrong. so two young doctors at the national cancer institute, frederick lee and joseph brown, many in the late 1960s stumbled across a family that they found very interesting. it started with a father who was just 23 years old, who had

leukemia. and while he was being treated for leukemia in baltimore, his ten month old son developed a soft tissue cancer in his arm. either of these would have been very unusual because of the young ages of these cancers. but as they started looking into this family, they found that it was riddled for generations with cancer. all kinds of cancers, often starting with young cancers. and it was it was this journey that they began to kind of put together. okay. first of all, we have to figure out a family tree. how many? that wasn't easy. it was a sprawling family all over the united states. but they did. it took them a couple of years. and what they found was this astonishing array of cancers which late led them to write a paper in 1969. this was just a year after my mother had died. that said, you know, is there something going on here? is there a familial syndrome? in fact, the paper ended in a question mark. and up to that point.

yes. yes. because they couldn't be sure. i mean, they were surmising, based on the history, but they couldn't rule out, as they noted in the paper, they couldn't rule out that it was environmental cause. they couldn't rule out that it might have been caused by some unknown virus, even though they tested the tissues from some of the family members and couldn't find anything and they couldn't rule out it was just kind of random chance. i mean, you know, there are more than 100 million families in the united states. so the fact that you would have some families with the high level of cancer would not be surprising. but still, they were kind of curious enough that, you know, kind of their maybe there is some we don't know, but maybe there is something going on. and to their credit even though there was a lot of skepticism by the more established cancer researchers about the paper, didn't get a lot of attention. and to the extent that it did was like, hey, you know, it's just random. you can't really be for sure. yet they were undeterred and they decided to keep following this family and some of the

other families that were in that. they had four families total in that paper, but they were focusing mostly on this family. family, a and then over the years kept adding more families, you know, kind of bits to their credit. you know, one of the things that i found fascinating, not having been a science writer in the past, is just kind of learning how science and scientific discovery occurs. halting. it's slow. it takes a lot of patience. it is very meticulous. but leon found many joined by other researchers over, you know, started to build more and more of a case that maybe something really is going on here. yeah. you think that one of the things that makes their their research and scientific in general slow is funding. could you do describe how a rise in public funding for cancer and a recognition of cancer as a public health disease did seem to change things up. i think it's a combination of

funding and you come across something new that it's hard to figure out exactly what is going on. so in the funding, remember, there was an increase funding, but a lot of the funding went to at kind of potential viral causes of cancer. now it turns out that about 10 to 15% of cancers are caused by viruses, but that's a small percentage compared to what was believed the time. the bigger issue, i think, and again, you have to kind of go back into time and it's hard to to think about it, the technology to understand dying of genetics in the human genome. and the tools to look inside, you know, kind of our genes and to examine individual genes and see what's going has expanded dramatically in the past 50 years. you know, kind of back back in the 1960s and early 1970s and even until the eighties, you know, kind of there was kind this knowledge about, you know, kind of maybe how genetics work, but there wasn't the tools to really look inside. there was an explosion.

there was a true scientific explosion of knowledge about genetics that period of time. and so it just took science to catch up with their theory before they could actually kind of look inside genes and find out. so so again, it kind of gets back to that point that, you know, kind of, you know, science is so fascinating that that we think that it is a straight line. rarely is there a straight line. and we think that it happens like this. but often you have to have a bunch of things all come together. and it wasn't just them. there were other pioneers that started looking at genetics. and i think it was the collective knowledge that started to come together in the seventies and eighties, finally enabled some of their breakthrough findings. one of the interesting things you point out in your own, which i think helps illustrate why this is so challenging for researchers too, is that after your mom passed away, it was like more than a decade until another incident where popped up in your family. so i think, you know, like as

were doing research on the book did learn a little bit more about you know what we understand now you know why some people who are in the same family and maybe have the mutation of course why they may get a different cancer or they may a cancer earlier or later in life rather than clustering all at the same time in the same organ. right. so, again, you know, kind of it's fascinating. and it's another explanation, as you note, amy, about why it takes along. so even in this family, which was riddled, riddled with cancers, you would go several years without member getting cancer and then you might two or three get cancer in the same year. one of the things that that leon found me and he started concluding over time was that even though they couldn't totally rule out initially there was an environmental factor, these family members were all living in different parts of the country. so that helped them say.

you know what? it's unlikely that it's environmental. in addition, it's unlikely it's viral. maybe they were all living together and spreading a virus among themselves. but it took, you know, kind of there were all these a long periods, even more so with my family. so my mother died 68, and my youngest sister was 1980 when she got cancer. and six months later, in early 1981, that she died of cancer. there's still is not a lot of understanding after all the research why, you know, people with lead from any center in, families with the same mutation in one gets cancer at age two like my nephew and you know kind of his dad my brother paul doesn't get cancer. his first cancer at 46 and they get different cancers. there's still a lot of ongoing research to try to understand that. so so, you know, even with all the advances, what you realize is that, you know, kind of science is constantly evolving.

understanding is constantly evolving. advances are constantly, you know, kind of being made. but there's still a lot that is unknown. yeah. i mean, i think pretty remarkable. given given many years have passed since the original discovery. you know, it feels like it would have gone even faster. but, you know, i was thinking about do you think you talk a lot in the book about scientia competition versus scientific, scientific collaboration. let's let's talk about the the competition, because that is a very dramatic and exciting part of the book. you've got these competing to be the first, you know, sequencing the gene, looking for the mutation and trying to figure it out. they want to be first. it's exciting to be first, right? we know that as reporters, exciting to be birth. so can you talk about that excitement and then we'll move into the collaboration aspect of things, too. so again, you know, you had a bunch of different scientists interested in genetics.

you know, it was in the seventies and into the eighties, attention started shifting toward, you know, kind of maybe genetics has a bigger cause of cancer, an inherited genetic conditions are a bigger cause of cancer than believed. at the same time, there was a growing recognition that there were environmental factors as well. so you have all these different things going on at the same time. and to some extent, scientists. one of the ways that the collaborate is they published papers. somebody else reads a paper and they say, oh, maybe i should examine this. so there was a lot of informal, as i would put it, collaboration. one discovery we adding to another adding to another. throughout that period of time, for example, it was around in the late seventies that that this gene p53 was first identified. it was co-discovered by a couple of scientists. one in the us and one in

scotland. they didn't know exactly what it what its purpose was, but it did enable other scientists to start saying, hey, maybe we should study this gene. so you have all this stuff that is evolving. finally, you get to the late eighties where you're talking where the competition starts heating up. you have the tools for the first time to do sequencing. that is, you have the tools kind of look inside individual genes and see where occur. and so there were two teams unbeknownst to each other, that had tissues from families with lead from any serum. these cancer ridden families that are both trying to find what is is there a specific mutation in a specific gene that is common in all the family members who have cancer. but for the family members who

don't have cancer, they don't have that mutation. there are a lot of genes in the body. so kind of figuring out where to look is one of the big challenges that they have. and so two teams, both starting in 1989, you kind of start this search using this gene, seek relatively new sequencing technology, which very laborious. nowadays can be done, you know, kind of because technology improves it'll be done very fast. but it was very laborious back then amazingly, after more than a year of looking at the genes and doing all this gene in august 1998, both identify a mutation on the same gene p53 after looking at other genes that is in common in all these different many families and and neither know it. so both know that they have to you know any scientists you don't want to be wrong what you do the first thing when you find something and do discovery you

do the test. you want to make sure you're right. you do it or three times, and then you start writing a and they're being very careful about everything. so it turns out one of the teams up at massachusetts, massachusetts general hospital in boston may manage to get into publication just slightly before the. but there was also a little bit of back drama because they finally, a month before in october, they learned of each other. and that ended up in this big race to be first. and one team was first. the other was a few weeks later because they just took a little bit more time to write their paper and get it in. and, you know, kind of the first team talk about the first team got the credit and the second team, you know, kind of got less credit. it's also going to the world series. nobody remembers who lost the world series. everybody remembers one who won the world series, but actually, there are two great teams. and i think in that case there were two great teams here doing the research.

you have these great themes where like one of the teams like races to get their paper in the hands of fedex so that they can get it to the journal faster. yeah. yeah. think back that back in the day, you know, kind of no email know you can't kind of get it that way. you know, kind of, you know, he's he he drove under the tarmac at boston logan airport to get, you know, kind of the paper the britain paper in so that it could then be sent down new york and get into public asian first. you know, it was i think very exciting times for all that you know and amidst all the competition. the important thing is that it was solved. this medical mystery was solved. it was a huge, huge breakthrough. you know, it was it was not just in the scientific world. the new york times ran a front page story, two columns above the fold. the wall street journal ran a very large story saying, hey, there's this amazing

breakthrough where for the first time we've identified a major gene with a mutation that causes cancer. and it turns out this gene is very important because it's a cancer gene. so we all have our cells are constantly dividing and most of the divisions, you know, the mutations that we have when our cells are dividing are benign. occasionally there is mutation that could become malignant, it could be cancerous. but p53 is this amazing gene that over millennia has evolved into what is called a cancer suppressor gene. it's a it's a seek and destroy gene. it fine is potentially cancer cells, identifies them and either kills them or repairs them. i mean, how amazing is that? the problem, of course, if you're born with gene in a mutated form, it doesn't do its job nearly as well. but this was a huge, huge breakthrough that that, you know, kind of raised, you know, kind of a lot of a lot of

excitement. but it also explained a lot like, for example, you know, my family, family a why there were so many cancers. so it turns out, you know, kind of if you're born with this inherited mutation, the figures are staggering and, you know, kind of heartbreaking. by age 40, if have this inherited mutation, there's a 50% chance that you'll have have had cancer. often multiple cancers, often starting at early ages. it's a versus a 5% chance in the overall population. and you can extrapolate that all the way out. that's how pernicious this particular mutation is. so it's not a question of if, it's a question of when and how many. yeah. and if there's a 5050 chance, you know, that you'll inherit it from one from the parent that has. yes, yes. there is a 5050 chance. and it turns out that i did not, which was know kind of, you know, quirk fate, you know, kind of the luck of the scientific, scientific draw and explains why i've never had cancer, you know,

kind of i'm in my seventies now, never had and always, you know, kind of been ben healthy, you know, kind which which on the one hand is great, you know, kind of with the other hand, you know, kind of looking at my siblings, you know, kind of my family history. it's like, you know, kind of amazing and hard. yeah. you know, you you talk about this, there's a very sort of poignant part of your book where you talk about people's decision is there's a there's a test that people can take now to learn whether they've inherited this this mutation or not. and you describe in your book how different people decide whether they want to know or they don't want to know. and, you know, can you talk a little bit about what prompted you to take the test so interestingly? my brother and i never really suspected, even though of so much has been written even at the wall street journal. and my brother and i both senior editors at the wall street journal, we never paid attention to research that said know kind

of by the way, cancer families, you know, kind of may have a genetic defect and p53 probably the most that's become the most studied gene in the human body. but there 40 or 50 different kind of cancer genes, mutations that predispose people with cancer. the best known is brac, which was discovered in 1994, a few years after the p53 mutation leapfrogged syndrome and brac, of course, causes breast cancer and occasionally ovarian cancer to. so why didn't we suspect that we had a mutation kind of goes back. our father was a research chemist in the wood products industry. he worked with a lot of different chemicals. so our supposition for many years was he must have carried chemicals home, you know, kind of on his clothes tiny particles that when he was at home, you

know, kind of get in the air. we must have breathed them in, resulting in cancer many years later. they kind of fit a little bit with the growing understanding of environmental carcinogens, you know, of all types. yeah. we didn't have any you know, there was no proof of that. but of course, it's hard to prove you know, kind of if you if you have a, a, a cancer that is caused by a carcinogen, it's hard to prove that. so we had this very much in our mind. you know, you kind of persuade yourself something. you look when there is no explanation, you look for an explanation that's human nature. and so i think we persuade it ourselves that you know kind of that must be it. so flash. to 2015 and my brother who had his lung cancer and had also then a few years after that prostate cancer and, you know, kind of survived that his

prostate cancer, there was some that it might be coming back. at which point, you know, his doctor said, you know, with your cancer, your son's your sister's dying of cancer. your mother died. you know, maybe you have a genetic mutation. and given the fact that there are all these different cancers, which is a signature of the p53 mutation, given that you have all these different cancers, maybe you should tested. and so he got tested. and sure enough, he tested positive and he sent a note to me and he said, you know what? it's, you know, kind of it's almost a relief to know that because now we have a real explanation of all these, you know kind of cancers in our family and. if you have now that have the mutation, what i can do is kind of get screened frequently and try to can't catch any potential cancers early, which is one of the benefits of knowing you know, i still didn't think a lot about it. you know kind of at that point i

was in my, you know, kind of early sixties. i hadn't had cancers. and so i didn't kind of immediately say, oh, you know, kind of i need to go get tested. and plus, by the way, kind of back then, testing was genetic, test was was quite expensive, you know, kind of 3000, $5,000. and, you know, insurance sometimes covers it sometimes, does it? but finally, you know, kind of i've got two kids and and know my daughter said dad, you know, i would really like to test it. and that was the moment where i said, okay, i'll i'll i'll get tested. and and you know, kind of one of the driving things is, you know, my brother said well, you know, there's there's a high chance if you have the mutation that you will get cancer. but, you know, it's kind of a small percentage chance, you know, kind of people with this mutation, it's like less than 5% will get cancer in a lifetime. so it's possible that i was a carrier that i actually had the

mutation but didn't cancer but because i was a carrier then i could have passed it on to my children right. so you ended up doing the test. so i ended up doing the test and fortunately he got me into an academic study. his his doctor knew somebody is doing an academic study, so i was able to get it at, no cost. and i tested negative, which was a great relief, of course, to my children because, you know, that meant they didn't have they couldn't pass it on to their children, you know, kind of my grandchildren you know, i point out, by the way, the cost of genetic testing has declined. now, it's not cheap for everybody, but it's like $250 for a genetic test. and if you have a a lot of cancers in your family, if they are cancers that young ages, you know, i would recommend that you consider get tested. i mean, you should talk to your genetic counselor. there are issues some people don't want to know. some people, you know, kind of

feel that it could affect their insurance, you know, kind of that's all understandable. but the benefit of knowing if you have a genetic mutation, not just this, but whether brac or whatever, then you can, you know, kind of get regular screening. the best way to catch to beat cancer is to catch it at early stages. you know, some of the people you quote in the book, who are part of families that have this mutation, also, they say something that really, you know, made me stop like in the middle of reading and really ponder. some of them said that they don't to take the test because there's not all that much that doctors can offer them. right. you know, even if they find out that they're positive for this mutation and, you know, it is incredibly frustrating that there isn't something more. and can you talk a little bit about that? and, you know, especially from the perspective of a person who's, you know, part of one of

these families. yeah. so again, think it's important to think of the p53 mutation versus the brac mutation or henry lynch syndrome named after dr. henry lynch, another of the genetics pioneers, lynch syndrome causes colon cancer with with lynch syndrome having a test knowing that you have it is is very important because. there is something that you can do you know kind of you can get regular colonoscopy starting at a young age and they can spot precancerous polyps before they become cancerous. so the the death rate of people who have lynch syndrome and who get, you know, kind of regular colonoscopies and know kind of get them taking care of his dropped dreams medically so you can do something kind of very directly treatment if you have instead of similarly with brac, a woman can make a decision. it's not an easy decision, but,

you know, can if you are really concerned. first of all, you can get screened frequently, but also you can choose to have a mastectomy or double mastectomy again, i'm not saying it's an easy decision, but there is something that, you know, kind of that you can actually do that been shown to affect the outcome. p53 is is complicated. it it can result in cancers any place in your body. so what can you do you can't like. okay, i'm going get a mastectomy. although there are a lot of breast cancers in women who have me syndrome. you know, can't choose to, you know, kind of just lop off different parts of your body or have surgery everywhere. so that's why the what the only thing that really is shown to be helpful is regular screening to try to catch them early. and some people say, well, i'm going to still get get the cancers anyway. and i think that's why there is this hesitation.

why should i, you know, kind of there is nothing that can be done. and one way that is true, you know, kind of there's nothing there's no surgical procedure. there's no magic bullet drug that can be done to that. not now. we can hope someday, but but, you know, all the studies that have been done shown that if you do regular screening, it prolongs life on average 5 to 10 years. it doesn't mean you're not going to get cancer. you're still going to get cancer, but you can probably catch the cancer. and that's and that's really the to me, the value and the other thing i say to people, especially who, you know, kind of have it and they have children, it maybe kind of will let you live longer, you know, kind of so you'll be longer. you'll be around longer as a parent for your child. so consider that as well as as one of the factors. again, it's a very personal decision. i would never presume to tell somebody. you know, kind of you should get

tested. you shouldn't get tested. you need to do kind of you need to make that decision yourself in consultation with the rest of your family and your genetic counselor. yeah, i'd to sort of also hear a little bit about, you know, the research investigation that went into this book. i mean, you know, you're a great reporter and you did so much reporting on this book, not only about the other families that worked with the scientists, but you but your own family. what was it like to report on your own family or your siblings and your parents? yeah, you know, as we talked about earlier and that kind of they're, you know, kind of the book alternates between chapters, my family family. and we can talk about family a little, you know, kind of such a fascinating family and the researchers in the research and all i found it all pretty you know i thought that kind of going oh i my family's history that will be easy. well on one level it was kind of easy because i did know my family's history. but but i realized that there

were a lot of things that i didn't know and that i needed to know about and and so, again, that's why i call this it really is a journey of discovery, a journey of reconnection. so now, my youngest sister, angela, died when. she was 24. and, you know, again, i this is like more than 40 years ago, you know, kind of i was living in a different city. of course, i spent time and went down, you know, kind of she was living in chicago with her, but there was a lot of stuff that didn't know. but i did know that she had a best friend who was by her side. most of the time angela was never married, but her best friend was named anita and i had forgotten her anita's last name, but fortunately my wife remembered her last name. and so, you know, kind of i went on the internet kind of, you know, so much of the stuff that that know, finding people kind of finding information you can

find you know, you can get on the internet nowadays, which have been very hard to do years ago. and you i tracked her down on facebook. i sent her a message that said, anita you know, kind of you may or may not remember me, but i'm angela's brother. could you talk. and of course, i immediately back and she was like, oh, my gosh, i think about angela. i think about it all the time. i mean, were like close, close friends. they had been friends and they lived in the same apartment building in chicago and. she told me stuff that i didn't know. angela had had, you know, kind of had some abdominal pains for a couple months, didn't say anything, and finally said to anita and i said, oh, you got to see a doctor. angela saw doctor. but then, you know, kind of went away for the weekend, i think it may have been memorial. so it was a long weekend. amazingly, the doctor who was anita's doctor referred to called anita and said, i need to

talk to angela like right away. this is before cell phones. and so there was no way for her to reach angela. angela got home and anita said, your doctor needs to talk to you. and she said, why he says, well, you know, the doctor thinks that you might have i mean, it was it was amazing. just whole kind of, you know, kind of connection. and she was able to tell me all angela's fears. i she put me in touch with other friends of angela. so, again, even though i didn't, you know, kind of i thought i knew everything. there was so much that i didn't know. kind of about angela's hopes and fears. you kind of. anita shared some, you know, kind of letters that that angela had. and suddenly with my my sister, gina, who was a little bit older, was married, never had children. she died when she was 32. and i had been in touch, you know, kind of forever with her, her husband. but when i told them i wanted to write a book, he said, i've got a diary that gina wrote, you know, kind of, would you like that? i said, well, sure. she so gina began keeping a

diary when she was sick. she found out that she was sick again. she within about six months. and it was very, you know, kind of very cathartic, was also painful to read the diary because going back, you know, kind of this was this was in the eighties when there was a lot of feeling like, you know, mind over if you just kind of have enough willpower you could defeat illness including and so i'm reading this and gina is not exactly blaming yourself but but you know kind of saying, look, you know, this is up to me to beat this cancer, you know, kind of if i'm just like kept and more positive if i, you know, kind of have stronger willpower, this cancer will go away, i can expel it from my body. and, you know, kind of i'm reading this thinking, oh, my god, you know, you didn't know we actually have this gene. it's kind of there's nothing that you could have been done. and the other thing i learned,

which was, you know, kind of very hard, is that michael told me her husband told me actually when gina was diagnosed the doctor said, you have six months to live, you should get your affairs in order. and they never told us that. she didn't tell me or my brother and i like why not? well, if you put in context again to tell us that would have been to accept, you know, kind of defeat to to and to to to tell us that have reduced her ability have the willpower to expel the cancer. again it kind of goes back to, you know sometimes what, you know, kind of people are told what they people i think i think that was false at the time but it was pretty popular. again, it was kind of painful to hear her her, you know, kind of, you know, kind of thinking about that and not telling us that that it was terminal. fortunately, we were able to spend a fair amount of time with

her. we again lived in a different cities, but we spent a fair amount of time with. so i was happy to that and have those strong memories, but still, you know, kind of that was part of this journey was learning more i was never able to find a lot of about my mother or the medical records are gone you know kind of but i did i did come across some lovely, you know, kind of back and forth with her mother, you know, you know, kind of little snippets, you know, kind a few handwritten notes, not a but you know, kind of for everybody, you know, kind of i would you know, whether you have cancer, where you have illness in your family or, you know, kind of that reconnecting with the past i would kind of greatly encourage it's it's really moving it kind of it it you know kind of is fulfilling in the end. you know, kind of what's important in life families, you know kind, of friends, you know, kind of that's important to life. how you weigh. i was thinking about a lot as i was reading the book, how did you weigh what to reveal i mean, because it's very private to read so much diary you know she's writing it she's not

anticipate doing that. her brother or anyone else, let alone people who aren't related to our are going to read about it. how did you and you know when you write a public figure or you write about someone who's consented to be in your in your work, you know these, you know, letters and diaries revealing the inner life so essential as a part of reporting. but how did you weigh like to respect her privacy versus desire to make her come alive and knowing that you were reading something she might not have wanted to show your brother. yeah. you know, amy, it's such a good question, because i did think about that quite a bit about both my sisters. i won't kind of go into it, but there's one thing about my sister, angela. anybody who reads the book, i think that that, you know, kind of you read it and you kind of it it will kind of almost make you cry. it made me cry about some, you know, kind of hurt about her hopes and desires, you know, kind of, you know, she wasn't married, but, you know, kind of she had hopes and desires and then so too so.

a why would i include that? in fact, one of my editors asked me, you know, kind of why did you talk about some very personal in the book in that way? and to me and and similarly with my sister gina from the from the diary is to me, you know, kind of it important to show up a life cut short. what does one you know all the things that we who have been fortunate to live long lives have had been able to do the we almost take for granted that somebody who has, you know, kind of a disease who whose life is short they miss out on all these things and i just wanted to show kind of the pain for somebody like that the pain in a family of what it is to have, you know, kind of a life cut short. and so i did with that. i, i thought long and hard about

including some of those things in and, and, you know, kind of even thought, you know, kind of i, you know, kind of was sitting there with them, you know, kind of. and they were going to ask me, you know, kind of, why did you you know, kind of why did you include that? and i said, you know, this is why i think it's really important to know that, you know, kind of it be a little bit painful. but for reader, i really want to kind of, you know, kind of give them this sense of of what you missed out on, you know, of what i missed out on, you know, kind of by not having you around. i thought it was very beautiful and very brave, but i, i did think about that. the other thing i thought about that i love to hear your thoughts on, you know, you and paul, you and you, both of you and it was hard nosed reporters. and you say several times in the several times in the book actually, you point out that, you know, you're journalists and you didn't ask a lot of questions or you didn't push or you didn't you didn't, like go after the go after the doctors with.

tough questions that you might have had you been doing an article for the wall street journal or the new york times. so can you talk about like that disconnect right from your reporter cells, which is such an essential part of who you are and the fact that when it came to confronting your doctors or pushing back, you weren't so much reporters, patients and family members. i don't know, kind of, you know it's such a question because you kind of. yeah, i've asked myself that. so the first thing i would say is is when you get a cancer, diagnose basis, your initial reaction isn't a what cost it. your initial reaction is, am i going to what is the treatment? you're so on the moment. and that's actually what is most important, you know, kind of trying to to talk to what is

what is the the best to to deal with this and and, you know, kind of look, you know, kind of with my nephew charlie, you know, kind of when he his first cancer, it was a cancer. his jaw, you know, coming was two years old in his cheek, rather. the doctor said he had a 20% chance of survival. i mean, you're really thinking what what does my child need? you know, kind of similarly for my my brother's cancer, my sister, you're really laser focused on that. the cost of the cancer whatever it is. yeah, it turns out to be, you know, kind of far less important you than that, you know, kind of what do i need to try to survive this thing? and we did ask him. so so for example, you know, kind of my my sister, gina's husband, michael, she died. he actually sent a letter to a an academic in the products research world saying, you know, could my wife's cancer have been

caused by some of the chemicals her dad carried home as a research working in the wood products industry? and the guy said, look, i can't tell you for sure. i just don't know. it seems unlikely that the minute amounts that might have carried home would cause cancer, but still that it dispels. we didn't have any other. the other reason, you know, kind of why we didn't kind of follow closely, you know, kind of the evolving research and the understanding of, you know, kind of cancer genetics. you know, i really can't explain that. you know, kind of i wish i wish i you know, kind of i wish i could turn back the clock because, you know, it i don't know that it would have helped, but having that understanding would have been good. yeah. you also you do a an amazing journalistic feat of tracking down all these families, you know, other families whose genetics helped. you know, the scientists identify what was going on. before you talk about that, i

was also sort of curious when you approached these families, when you were reaching out, interview them and you know, you're writing a book. did you also say that, you know, i have skin in this game? you're not just a reporter. i'm a family member. yeah. yeah. so very early on, i felt that to be able to tell how the medical mystery was solved, it was really important to try to find one of the families that was a subject to the research. my my family was not the subject of any research, again, because we didn't actually know many years later that we had lead from any syndrome. so i told the nci, which was very helpful to me of dr. family is still alive. dr. lee died in 2015, so he was very in explaining, you know, kind of take me back in time how they kind of initially of came on to this how they you know, kind of wrote this paper and had a lot of skepticism early on but there but you know, kind of again, we're 50 or 60 years on, you know, he's got a very sharp

memory. but he didn't remember every detail. and so i knew i really make this book compelling. you need to tell it through the families and the families who lived it and suffered in addition to the science and how they kind of solve that medical mystery. and so you know, kind of i contacted the nci, i said, can you put me in touch with this family, which is so central? and they said, you know what, patient confidentiality. you and i had told them, i understand, might be difficult, but i said, can you let if i write a letter to you, can you pass it on to them that way you're not kind of giving me their name and if they are interested in talking to me, they can. and of course, in that letter i said, by the way, your family is my family in many ways, you know, kind of i've gone through this. my family has been wiped out. that's why actually become interested in this. i want to, you know, kind of help people understand this. i want to show this great scientific achievement by leon

brown meaning and that was kind of helpful. i think that that people, you know, kind of so i did in touch with two younger members that family remember that family was really wiped. it's been really terrible that they the surname was bilious and. that's what dr. family had remembered. but they knew a lot of the recent history of the family. they didn't know a lot about, you know, kind of the early years of research. so my next step was to say to an national cancer institute, which is, hey, i, i presume because this family has been studied much, it's somewhere there are all the documents, medical records, etc., etc. and, you know, can i have access to that? and again, the answer was, well you know, kind of that's a confidentiality. and i said, okay, i get it. how about if i if these family members if if the surviving family members say, you know, kind of he can look at that, you know, kind of would that be okay. and that was yes, i like it.

and and that was so important. and i've got to, you know, kind of thank that family so much because it's painful to have to talk about all this stuff and to reveal this stuff. but i was able to get the medical records and it was amazing, was kind of it was a treasure trove. it was beyond my wildest dreams, not just was it the the, you know, kind of hospital records, many of these family members, but it was a, you know, letters that dr. lee had written. you know kind of to hospitals around the country and that family members who had been in contact with as he tried to build the family tree. it was like a almost, you know, kind of a week to week recounting of his detective work. it was like a detective. yeah. so so that was, you know, kind of incredibly, incredibly. yeah. and you finding, you know, nancy. yes. and the final the final piece was they were very helpful. but but even the medical records couldn't tell me all the details

about. so this the killer's family was mostly on the west coast. they were spread all over, but a lot of them were in the west coast. but, you know, kind of dr. william family had come across his father and son in baltimore and how did that happen? and and dr. family didn't remember it. so i found out that although the father had died of of leukemia within a year of getting it, his baby son survived lived into till he was 29 had many subsequent cancers lived until he 29 but was married. and i found i found a mention of his wife's name. his wife's name was was fairly common. it was it was, you know, kind of difficult to track her down. but it took a while but i found her and i wrote her an email and said, the way i need to, i think you're the person i'm looking

for. can you help me out, you know, kind of again, explain, you know, kind of my background and why i was working on this. and i kind of in response, i got an email initially not from her but from her former mother in law. nancy killian schooled who the the wife of the husband, the mother of, the son who had cancer. and she was able to give me, you know, kind of the amazing story about how they had ended up in baltimore, because even though they were on the west coast, you know, kind they had been told that the only possible treatment might be at the nci. so they traveled across the country. she told me that the terrifying story about you know, kind of getting home from the hospital, kind of where her husband was being treated one day and, you know, kind of her her baby's babysitters said, i feel a lump on his arm and, you know, kind of being totally frightened, kind of taking him to the doctor, you know, kind of right away in the doctor's saying, yeah, i think this is cancer. we may have to cut off his arm, amputate his arm to save him. and she was like, oh, my gosh.

but then they decided, you know, can look, we can just kind of cut the muscle out. it was an amazing story and can you imagine, you know, kind of nancy, getting this, you know, kind of email from this, you know, totally unknown person, you know, kind of basically. and it wasn't worded exactly this way, but basically, i want you to talk and open up about the most painful things in your life and, you know, kind of she was like, i need to think about this. but very quickly said, i see what you're doing. this can help a lot of people. so, yes. know kind of i'll talk to you kind of just just wonderful. i can i can't tell how touched i've been by them and by other people kind of, you know, kind of since book has been published, too, about, you know, kind of how meaningful it has been for them. you know, let's i let's talk a few minutes about that, because one of the things i find kind of amazing about this book also is that despite this amazing, like, you know painful loss that experienced with your family, there's remarkably little anger, you know, in your book. it's really a very story.

and, you know, poignant, but guess i wanted to ask you like this gets back to the question about scientists collaborating versus like do you think things have been further along or move faster if they had worked together rather than competing against each other? and do you feel any anger that there's not more to offer families beyond screening this point, despite how many years have gone by? you know, kind of. i, i think as long ago, kind of decided, you know, kind of the anger over any of this, just not a good thing to have. you know, kind of in the case of my nephew. so charlie, you know, had cancer when he was two and then not for another almost 30 years until. he was 29 or 32. he had his second cancer. and that cancer was just he was

he had gone to doctor. he was having abdominal problems. he, you know, kind of said, i think there's something wrong. the doctor, you know, kind of didn't suspect anything, although i think he should have asked questions at that time because he had a person who was a previous patient and histories of cancer in his family. a lot cancers of the family. and it wasn't until like, you know, kind of eight months later, he says, oh, maybe we should do a colonoscopy and found that he had had colon cancer, you know, kind i think that the doctor failed him then and you know i don't think i've really ever my brother or his wife be angry about that, you know, kind of it's the anger doesn't serve a lot of purpose i think that was particularly tragic because to to to for charlie to kind of defeat that

colorectal cancer he had in 2010. he had to get a lot of radiation and radiation and, you know, kind of itself can can lead to cancers and so kind of seven years later he got he cancer came back for charlie his last cancer was in his it was in his hip. and and in so tragically to try to save him, they amputated his his leg up, you know, kind of his right leg, including his hip. but even that it metastasized. would that have happened if, you know, kind of. maybe not. if if the doctor had been more aggressive years earlier. but again, you know, kind of i feel that, you know, kind of anger doesn't serve it. but i look at the scientific progress. i think, could it be faster? yes. but if you but i do see kind of you look at the arc of what has happened over the 56 years, the understanding of cancer survival rates of many cancers, not all cancers have have improved dramatically. so it you know, kind of yes, it

would be it'd be faster. it would be nice if we kind of get, you know, kind of therapies. but, you know kind of science moves at its own pace. i don't think anybody's trying not to move fast, i just think that it moves it at a pace that often is is frustratingly slow and and, you know, kind of we may not be happy about that, but you rush, you know, science. so what's you know, you know, kind of coming to the end in a sense of the conversation, it's just been so amazing. i have so many questions, but i guess i want to at least end with a few minutes where we can talk about, what's the message of this book? what do you want people to take away, you know, where should where should we go next? so so i'm hoping that people kind of understand this is about family. it's about discovery. it's about connection and reconnection. and, you know, kind of there's there's no point in your life that you shouldn't, you know,

feel that that this is something that is important to you. one of the things i know that my my book is occasionally i come across people who are estranged from their siblings. i got to tell you, it, for somebody who has no siblings, you know, kind of cold and kind of. yes there may be a good reason that your estrangement or sibling but try to figure it out you know kind of i wish i had my siblings and i have none and the other messages i think i'm trying kind of hope you know kind of are heartbreaking aspects of this book. but also i think, you know, kind of there are inspirational aspects, you know, kind of these were true heroes. they dedicated to helping people. and there are a lot of scientists. there's a bit of cynicism about science now. but but scientists, you know, kind of really, you know, kind of these alien and the others who joined them, you know, kind of wanted to solve something, not just to solve something, wanted to solve something to to to help people. that is the there's an inspirational aspect of this and, you know, kind of on their

work, you know, there are a lot of doctors are carrying on their work. there's sort the leap from any syndrome which which is kind of a support group, but also, you know, kind of raises fund research hoping to solve this someday and you know, kind so many of these it is a very rare mutation. there are only probably to 10,000 families in the u.s. with it. people still go to doctors and you know, kind of doctors have never heard of it. so so, you know, kind of part of the book, i think, is to raise awareness, you know, kind of again, a lot of people have reached out to me and said, thank you for writing this. you know, kind of people will now understand, you know, kind of what my family has been going through in a way that they probably never have been able to understand that and one of the people who writes a letter to you is a doctor worked on this and is still has a company that's trying to come up with drugs that would tackle, you know, 53. so, yeah, so that was one of the kind of touching after the book was was published. arnold levine, who's one of the most renowned cancer researchers

of the past 50 years, and he plays he's got a small role in the book because he he's done a lot of p53 research, you know, kind of he wasn't on the the team that discovered the mutation. you know, he sent me a note and he said, just love the way that you kind of weave together, you know, kind of the families and research because it does. that's what it's all about. that's what we're trying to do. it is about the families and explaining how difficult the research is. and, you know, kind of he's been working for many years, you know, kind of trying to come up with with solutions along with other doctors, you know, kind of new therapies and, you know, kind of there's an acknowledgment this is going to be it's hard. we understand that. but, you know, kind of we're also hoping, you know, kind of that that, you know, kind of there might be some breakthrough. i do think kind of mostly kind of, you know, kind of we shouldn't expect magic bullet, i think for a long time, people thought that might be possible with cancer. i think that we can expect, you know, constant incremental improvements going forward

that's going to be going to help families, you know, kind of with hereditary conditions and by extension, all families with cancer. but but, you know, kind of what's what's have realistic expectations, you know, kind of we're still, you know, kind of years away from from solving. yeah, larry, thank you so much for this remarkable book. i know it's going to help a lot of people, amy. it's been a pleasure chatting with you. same.

i am delighted tonight to have a very special duty. our speaker this evening, as you all know, is i don't even have to say his last name. er