Living Cancer

Today, the impact of cancer is not limited to patients and loved ones, not confined to hospital wards and research labs. It's a powerful symbol appropriated by Hollywood, the news media, and every realm of expression to signify what we most fear. In the second hour of "The Cancer Show," the stories we tell about cancer: on stage, on the big screen, and online. This week’s On The Media is part of WNYC’s Living Cancer Series, a radio companion to “Ken Burns Presents Cancer: The Emperor of All Maladies, coming to PBS March 30. Support for Living Cancer is provided by the Susan and Peter Solomon Family Foundation. Additional funding for WNYC’s medical science reporting is provided by the Iris and Junming Le Foundation.

Melinda Townsend-Breslin keeps a photo of herself on her refrigerator standing with her mother, MaryLou Townsend, in the front of the Unique Thrift Store in Louisville, Ky. They're side by side in the parking lot, both wearing white T-shirts and sporting short, practical haircuts. Mom is proudly showing her discount card. "For the thrift store!" said Townsend-Breslin, laughing. "The discount for the thrift store!" For Townsend-Breslin, this photo captures her mother: a frugal woman with a cheeky sense of humor, not prone to indulgences. When she was diagnosed with metastatic pancreatic cancer at 58, she approached her grim prognosis with the same pragmatism. She wanted to pursue treatment, but only if it was working. The time between discovering a lesion on her pancreas and requiring surgery to remove it was just a few weeks, so when their family doctor recommended a noted surgeon, the family didn't hesitate to use his services. They knew he was out of their health plan's network of doctors, but at that stage, it was the least of their worries. "Mom, don't worry about it," Townsend-Breslin recalled saying to her mother. "Worry about being sick, worry about the time that you that have left, don't worry about the darn bills." John and MaryLou Townsend, out for dinner to celebrate their 36th wedding anniversary. (Photo courtesy of Melinda Townsend-Breslin. ) Townsend had several complications after surgery and had to stay in the hospital for 30 days. Not long after, the family began receiving bills for that part of her care. "There's not a lot of time to ask questions when they come and say we're going to do this surgery," Townsend-Breslin said. "We didn't have time to say, can you tell us how much the surgery is going to cost? How many surgeons are going to be involved? ... We had no clue of the bills that were on the other side." According to the family, the bills ballooned to over $300,000 before their health insurance kicked in. Until then, Townsend and her husband, John, had always been healthy. They rarely used the health insurance coverage that they received through his work as an automotive technician at a local car dealership. When the bills started coming in the mail, they weren't always sure what they were responsible for paying, and what would be covered. Townsend feared they would go bankrupt or lose the house. "She knew she was dying," her husband said. "And she was worried about paying the bills — me paying the bills after she was gone, on top of that." They soon realized that their insurance coverage was true to its policy. It covered many of the charges, but it didn't fully cover their out-of-network surgeon or the full cost of all of the procedures. The family owed over $100,000, even with insurance. "I always say, yes, $100,000 in debt is horrible," said Maggie Woods, director of the health and life division of the Kentucky Department of Insurance. "But half a million is much worse." "Unfortunately," she said, "Everyone thinks if it's insurance it's going to make you 100 percent whole. It's not the case." The family regretted not looking at the policy more carefully and takes responsibility for that mistake. The family faults the health insurance company for its refusal to pay for a blood thinner that Townsend required. She was suffering from blood clots and didn't respond to the standard drugs. She was in pain and only a blood thinner called Lovenox seemed to help. The drug cost around $1,000 a month and had to be paid out of pocket. Almost every month, the Townsends would have the same argument with their insurance company: The doctor said Lovenox was medically necessary; the insurance company wouldn't pay. After MaryLou Townsend died, her husband, John, was left with a large medical debt. (William DeShazer for NPR) The family doesn't believe it was told that under the Affordable Care Act every state is required to have a formal appeals process, where patients can ask an...

Over the last 2,500 years, cancer has shifted from a disease in the shadows to one at the center of scientific research and public discussion. In the first of two special episodes, On the Media dives deep into the way we talk about cancer: in the news, in the hospital, and in our private lives. This week’s On The Media is part of WNYC’s Living Cancer Series, a radio companion to “Ken Burns Presents Cancer: The Emperor of All Maladies, coming to PBS March 30. Support for Living Cancer is provided by the Susan and Peter Solomon Family Foundation. Additional funding for WNYC’s medical science reporting is provided by the Iris and Junming Le Foundation.

Dr. Harold Varmus, director of the National Cancer Institute, Nobel Prize-winning scientist, and former president of Memorial Sloan-Kettering Cancer Center, discusses the study of genomics in the treatment of cancer. Then, Susan Gubar, distinguished professor emerita of English at Indiana University, the "Living With Cancer" columnist for The New York Times and the author of Memoir of a Debulked Woman: Enduring Ovarian Cancer (W. W. Norton & Company, 2012), fields your calls about how to talk to people dealing with cancer and why the words we use matter.

In November 2013, MaryAnn Anselmo was recovering from a horrific traffic accident. She's a jazz singer, who lives with her husband, Joseph Anselmo, in Morganville, New Jersey. During her recovery, she started feeling dizzy one afternoon, and her husband insisted she go back to the doctor. An MRI revealed that she had a glioblastoma, a brain tumor. “You start doing research on that type of tumor and you’re saying, ‘Oh my god, you’re history.’ It’s like a death sentence,” Anselmo said. Only for her it wasn’t. Anselmo’s story shows how precision medicine, tailoring medical treatment to each patient’s genetic needs, is beginning to revolutionize cancer care. At first, the outlook seemed grim. While Anselmo’s doctor was able to surgically remove most of her tumor, her body rejected traditional chemotherapy. But she and her husband were not ready to give up. He’d read about advances in targeted therapies — drugs that target cancer at the tiniest, molecular level. So they had her tumor genetically sequenced in the hope that there would be a drug able to target one of the specific mutations causing her tumor to grow. Lara Winterkorn, a scientist at the New York Genome Center, prepares samples from a cancer tumor for sequencing. (Amanda Aronczyk/WNYC) The sequencing found that Anselmo’s tumor had a mutation common in skin cancer, but very unusual for a brain tumor. So her oncologist Dr. David Hyman at Memorial Sloan Kettering Cancer Center put her into a new kind of drug trial. Called a “basket” trial, the study is designed to include people whose tumors have the same kind of genetic mutation, rather than being designed around the location of the tumor within the body. Knowing more about the genetic mutations of a tumor enables doctors to find a potentially effective drug much more quickly and accurately. "It's like you're in a parking lot," said Hyman, “And you have a key to one of the cars in the parking lot. And so one option is just to go to each car and try to open the lock. The other is to know that it's the third car on the right. What we're doing now is we're saying okay this key fits that lock. And we're only going straight to that car." MaryAnn Anselmo is a jazz singer, her stage name is Mariel Larsen. (Photography by Kendall Messick.) Today, MaryAnn Anselmo is doing well. She’s been on the clinical trial for a year now, and continues to take the daily pills that are keeping her cancer from growing. Now she can focus again on the things she loves, like singing. She’s back training with her vocal coach and is planning a comeback performance under her stage name, Mariel Larsen. As this kind of genetic sequencing of tumors has become faster and cheaper, more patients will have access to this technology and more doctors will understand how to use the sequencing information to treat patients with a targeted approach. Hyman cautions that these treatments aren’t considered cures. It’s likely that at some point the drug that is keeping Anselmo’s cancer at bay will stop working and there’s no way to predict when. But in the meantime, patients like Anselmo are grateful to have time they would not have had otherwise. Our series is produced with NPR, and with ‘Ken Burns Presents: Cancer: The Emperor of All Maladies’ which will air on PBS stations March 30th, 31st and April 1st. Check your local listings for broadcast times.

Amy and Ryan Green grew up in Loveland, Colorado. They were high school sweethearts living a charmed life. Until 2010, when their one-year-old, Joel, was diagnosed with cancer. After surgery, Joel needed radiation, which stunted his intellectual growth. But that turned out to be kind of a blessing, since it meant Joel was unaware of how sick he was. “It was sweet in a way, because he was our baby for five years,” Amy says. “But you always wanted to know him more than you could know him." Joel did suffer sometimes. During his first overnight visit at the hospital, he was very thirsty. He kept asking for water, but drinking it made him throw up. At the time, his father Ryan was a data programmer, fascinated by video games. He kept thinking how that moment of suffering would play out in a virtual world. So he told Amy that he was going to make a game about Joel’s dehydration. Her reaction? "That’s the worst idea I’ve ever heard," she recalls. "No one will play that game.” But Ryan had a vision. With the help of a friend, he made a prototype and brought it to the 2013 Game Developers Conference in San Francisco. The reaction was overwhelmingly positive. So Ryan enlisted a team of friends to help him build a full-length game that would chronicle Joel’s treatment called That Dragon, Cancer. As Ryan worked on the game, Joel was defying the odds. He lived years beyond what his doctors expected. But he didn’t end up slaying the dragon cancer. Joel passed away at the age of five. After the funeral, his parents met with their team of programmers and decided to change the focus of the game from Ryan and Amy's experience as parents. Instead, the game would explore the question: "What is it like to love Joel?" The game will be completed in the fall of 2015. While Amy and Ryan got a lot of support from Kickstarter, it's unclear how many people will take time out of their busy lives to play a few levels of That Dragon, Cancer. If the game succeeds, it’s because it’s not really about cancer or death. The object of the game is to love someone as much as you can before time runs out. In that sense, it’s a lot like real life. This piece was produced with ‘Ken Burns Presents: Cancer: The Emperor of All Maladies’ which will air on PBS stations March 30, 31, and April 1. Check your local listings for broadcast times. A still from That Dragon, Cancer (Numinous Games ) A still from That Dragon, Cancer (Numinous Games) A still from That Dragon, Cancer (Numinous Games) The team behind That Dragon, Cancer: Jon Hilllman (composer and sound designer), Ryan Green (co-creator and Joel’s father), and Josh Larson (co-creator) (Elliot Trinidad, Courtesy of IndieCade)

Dixie Josephson was 56 when she was diagnosed with metastatic ovarian cancer. She’s 71 now, but the cancer is still with her. Josephson’s story is one shared by other fortunate cancer patients. Advances in treatment mean that people like Josephson can live longer with their disease. Still, the 5-year survival rate for metastatic ovarian cancer is 27 percent, putting Josephson in the minority. And the treatments that have extended her life have taken a toll on her and her family. “OK, ready,” she says during a visit to Women and Infants Hospital in Providence, R.I. “I’m here for an appointment. and I don’t ever feel good when I come in for that. It’s scary and depressing.” Left to Right: Barry Josephson, Dixie Josephson, Dr. Skip Granai. (Paige Cowett (WNYC)) Her oncologist, Skip Granai, says of Josephson’s treatment, “We’re into unchartered waters now.” He has overseen her care for the last 15 years. Over that time, Josephson has had to make a lot of choices about how aggressively to treat her cancer. She’s had surgery to remove her reproductive organs, endured 14 chemotherapy regimens and undergone two rounds of radiation. The chemotherapy caused Josephson to have chronic fatigue and severe nerve pain. She lost her teeth due to infection and developed diabetes. After suffering a pulmonary embolism, she takes blood thinners to prevent another life-threatening blood clot. “Everything I used to do has been totally limited, to really being a patient, that’s what I am, a professional patient,” she says. Yet, she remains vibrant, even though this summer, after a year-and-a-half-long break from chemotherapy, Josephson got bad news. The cancer had returned and needed to be treated again. In June, Josephson resumed chemotherapy, for the 15 time in as many years. “I absolutely experienced rage for the very first time ever in all the years,” she says. “I was so angry, I was swearing like a sailor, I just couldn’t believe it was coming back into my life.” Josephson knows that she’s lucky to have had the choice to keep treating her cancer, even while enduring the assault on her body. Choosing to treat the cancer has meant that she has gotten to see both of her sons, Braden and Mark, get married, and four grandchildren have been born. This past December, she celebrated her 50th anniversary with her husband, Barry. But it’s been hard on the family too. “You can’t function for 15 years with every 6 months, going into alert mode. You just can’t physically and emotionally do that,” says Mark, Josephson’s younger son. The Josephsons in 2001, after Dixie's diagnosis. Left to right: Sarah (Braden's wife), Braden, Dixie, Barry, Megan (Mark's wife), Mark (Courtesy of the Josephsons) Both sons are grateful their mom has been able to be around for so long, but have struggled with how to be supportive during what has become a marathon of treatment. Her oncologist takes the long view. “There has been a lot of scientific progress in the treatment of cancer,” Granai says. “It kind of gets sometimes obscured by the fact that we all always hope for more.” Josephson’s is not the story of a cancer patient who beats cancer after intense treatment or the story of a patient who fights but quickly succumbs to the disease. It’s a third kind of story of a patient and her family struggling to cope with cancer for the long term. It’s a story that more and more families will struggle with as more and more patients survive to manage their cancer as a chronic disease. At what point would Josephson decline treatment? “It would be at the point where it was pretty hopeless,” she says. “But I haven’t gotten to that point yet at all, not in my mind and not in reality. And I’ve discussed it with the kids and I said, “Don’t you dare pull the plug on me too fast.” Our series is produced with NPR, and with ‘Ken Burns Presents: Cancer: The Emperor of All Maladies’ which will air on PBS stations March 30th, 31st and April 1st. Check your local...

Ken Jeong describes his role in the 2009 blockbuster The Hangover as "the most obscene love letter to a spouse one could ever have.” He peppered his dialogue with bits of Vietnamese as an inside joke with his wife Tran. Ken met his wife while they were both practicing medicine at the same hospital in Los Angeles. Ken had always done comedy on the side. He even performed midnight improv while he was working up to 100 hours a week during his medical residency. But after he and Tran married, he quit medicine to pursue acting full-time. Then, a year later, Tran was diagnosed with aggressive stage III breast cancer. They had twins who were a year old. And Ken had just gotten an offer to play an Asian mobster in a Las Vegas buddy movie. Tran encouraged him to take the part. "You're kind of burning out right now," she told him. And he channeled his anger about her illness into his character's comedic rage. Seven years later, he talked to me about raising a family in the shadow of cancer and how his careers in comedy and medicine have converged in unexpected ways. This week’s episode of Death, Sex & Money is part of WNYC’s Living Cancer series, a radio companion to “Ken Burns Presents Cancer: The Emperor of All Maladies.” Support for Living Cancer is provided by the Susan and Peter Solomon Family Foundation. Thanks to WNYC's Mary Harris and Amanda Aronczyk for their help with this episode. Read a full transcript of this episode here.

Director Barak Goodman and executive producer Ken Burns talk about the three-part documentary series “Cancer: The Emperor of All Maladies,” which tells the comprehensive story of the disease and our quest to understand it, treat it, and cure it. The film mixes history with intimate stories about patients and investigates the latest scientific breakthroughs that may bring us closer to lasting cures. The series airs on PBS March 30 - April 1.

When a child is diagnosed with acute lymphoblastic leukemia now, there is more than a 90 percent chance of survival. But when James Eversull was diagnosed in 1964, there wasn’t much hope. He was just 18 months old when his parents discovered what was wrong. He remembers overhearing his family and doctors discussing his illness when he got a bit older. “My nickname was ‘Jimmy,’ and they would say ‘Jimmy with cancer, Jimmy with cancer,’” said Eversull. “Because you say cancer back in the 1960s and they think if you touch them you’re going to catch it.” James Eversull, left, when he was 5 years old, with his brother, Jeffrey. When this photo was taken, Eversull's leukemia had been in remission for a year. (Photo courtesy of James Eversull. ) But Eversull’s parents were determined to help him. The family drove almost 400 miles from their home in Louisiana to St. Jude Children’s Research Hospital in Memphis, TN. St. Jude was named after the patron saint of lost causes for a reason. “These children were often turned away,” said Dr. Donald Pinkel about his years as a young doctor in the 1950s. He went on to become the first medical director at St. Jude. “A lot of physicians just didn’t want to handle this situation, it was so sad.” Dr. Donald Pinkel was the first medical director at St. Jude and led the hospital's leukemia research trials in the 1960s. (Photo courtesy of St. Jude Children's Research Hospital.) According to James Eversull’s mother Brenda, the hospital was not an encouraging sight. “All during that day, I kept seeing kids die,” Brenda Eversull said. She was 19 years old at the time. “Tubes coming out here and there…it was horrible. I just wanted to take my son and go home.” But the physicians at St. Jude were trying something new: a chemotherapy drug cocktail paired with radiation. They called it “Total Therapy.” It’s an early variation of what most acute lymphoblastic leukemia patients still get today. But patients like Eversull were among the first ones to try it, acting as experimental guinea pigs. “You say experimental, you know, and I’m thinking, ‘Oh my god,’” Eversull said. “Like Young Frankenstein or Dr. Jekyll and Mr. Hyde. You’re giving me something and you don’t even know what it’s going to do?” This was an era before experiments on humans were regulated. Pinkel had an advisory board for difficult ethical questions; it wasn’t as though they had no oversight. But the doctors thought experimenting with toxic treatments was worth the risk of the kids developing secondary illnesses. They didn’t know if the kids would survive otherwise. “It was very difficult,” Pinkel said. “You have to be very careful in these early phases because you could shove them over the brink with your therapy.” Chemotherapy was showing promise for some young patients, but the challenge was maintaining remission. What distinguished Total Therapy III from earlier protocols was the use of radiation to the brain to avoid relapse. It would result in a lasting remission for many of the children and the challenge became deciding when to take the children off of the treatment. “I do remember one doctor said, ‘You stay with the winning horse,’” said Pat Patchell, 62, one of St. Jude’s oldest leukemia survivors. “I think it was a pretty big decision on their part,” Patchell said. “It was very much unknown territory. That’s why they kept an eye on me for so long. I was into my 30s before I stopped coming back every year.” Pat Patchell in 2014. He was diagnosed with cancer when he was 11 years old, and at age 62, he is one of the country's oldest survivors of childhood leukemia. (Photo courtesy of St. Jude Children's Research Hospital.) Both Pat Patchell and James Eversull still return to St. Jude for periodic check ups. Of the 26 children who started “Total Therapy III” treatments in the early 1960s, only five made it to adulthood and three are alive today. But this research was a crucial step in developing a...

When President Richard Nixon declared a war on cancer in 1971, there were high hopes that scientists were close enough to understanding the underlying causes that many cures were within reach. We obviously haven't won the war. In fact, a prominent cancer biologist argues that the conceptual framework for understanding cancer has come full circle over the past 40 years. MIT biologist Robert Weinberg made that provocative comment in an essay he wrote last year for the journal Cell. He's a luminary in the world of cancer and is a founding member of the Whitehead Institute for Biomedical Research in Cambridge, Mass. His argument goes like this. In the 1950s, medical researchers saw cancer as "an extremely complicated process that needed to be described in hundreds, if not thousands of different ways," Weinberg says. Then, scientists started glimpsing what they thought were simplifying principles. The first idea, which helped spur the government's war on cancer, was that viruses were the prime drivers of human cancers. That proved not to be the case. As that idea faded, it was replaced by the notion that cancer is all about wayward genes. "The thought, at least in the early 1980s, was that were a small number of these mutant, cancer-causing oncogenes, and therefore that one could understand a whole disparate group of cancers simply by studying these mutant genes that seemed to be present in many of them," Weinberg says. "And this gave the notion, the illusion over the ensuing years, that we would be able to understand the laws of cancer formation the way we understand, with some simplicity, the laws of physics, for example." But as scientists delved into cancer genes, the unifying principles gradually evaporated. "Over the last 10 to 15 years we began to accumulate once again an overwhelming mass of information that cancer is indeed a highly complex process, and that attempts at distilling it down to a small number of simple processes may not really work that easily," Weinberg says. "And so we're once again caught in this quandary: How can we understand this complexity in terms of a small number of underlying basic principles?" From the vantage point of 2015, it appears that those simplifying principles may not exist. "I think it may have been wishful thinking to think that a disease like cancer was simple to begin with," says Dr. Victor Velculescu, a professor of oncology and co-director of cancer biology at the Johns Hopkins University School of Medicine. He says it has become clear that cancer isn't a single disease or even a hundred different diseases. "Between everybody that has cancer today, to everybody that's probably ever had cancer since the beginning of humankind, [each person] has had different molecular alterations in this disease," he says. So you could say each case of cancer is a unique disease. "The other complicating thing is that cancers aren't static, they actually change over time," he adds, morphing within each patient. That's why a treatment that works for a while often loses its punch, and why doctors have to search for some other treatment. These bedside observations match what scientists had been discovering in the lab. Velculescu says there aren't just a few cancer genes. It turns out many genes can be damaged and can contribute to the process of malignancy. "But it also became clear that we could simplify these genetic changes into certain pathways," he says. Pathways are something like assembly lines within the cells — the chemical steps that keep the cells alive and functioning. Each gene creates a station along that assembly line. Scientists have discovered there are many different ways for these pathways to break down, leading to cancer. "And some of them were pathways that people had been thinking were important in cancer and some were totally new," Velculescu says. Those pathways provide potential places to block the progress of cancer, with drugs. The Novartis drug Gleevec, for...

Jenny Singleton got breast cancer at age 48. So did her mother, at age 66. “When my breast cancer was diagnosed, I immediately thought we must have a gene for it,” Jenny Singleton said. “So I was tested and I didn’t have the BRCA gene. And so that’s often left me wondering well, then why is it that my mom and I both got breast cancer?” Cancer susceptibility genes are estimated to account for only 5-10% of breast cancers overall. Now the Singletons and thousands of other families are part of a study that is looking to see if there is evidence that environmental exposures in utero could account for some breast cancers later in life. Barbara Cohn is leading this research. Cohn is the director of the Child Health and Development Studies (CHDS) in Oakland, Calif. From 1959 to 1967, CHDS researchers enrolled some 20,000 pregnant women — including Jenny’s mother, Bernice — in a long-term study to track their health and the health of their children. Over the past 55 years, researchers have continued to track those families, using the data to investigate everything from the effects of smoking and exposure to pesticides during pregnancy, to possible root causes of schizophrenia. CHDS samples at the UC Berkeley bio repository in Richmond, Calif. These samples are kept at negative 80 degrees Celsius. (Paige Cowett, WNYC) Having blood samples taken during pregnancy is allowing Cohn to test her hypothesis that pregnancy is a particularly vulnerable time to be exposed to environmental chemicals. “To our knowledge, we’re doing the very first, what I call womb-to-breast cancer study, in the world,” Cohn said. Health researchers in this field like to say that genetics load the gun, but the environment pulls the trigger. Finding that trigger, however, is hard. Cohn is hoping to pinpoint chemicals in the pregnant mothers’ blood that might be associated with a greater risk of breast cancer in their daughters, more than 50 years after they were born. Standard labs conduct this kind of research by testing for the presence of specific chemicals, one by one, a labor-intensive process. Cohn said, "One chemical at a time is never probably going to give us the whole answer.” Bernice Singleton pregnant with Jenny Singleton, 1961 (courtesy: Singleton family) That's why Cohn has turned to Dean Jones, professor of medicine and director of the clinical biomarkers laboratory at Emory University. Unlike most labs, his ultra-high resolution mass spectrometer can analyze tens of thousands of chemicals at once using just a drop of blood. His team has also developed complex algorithms that can analyze how those exposures are processed in the body. Barbara Cohn and Dean Jones at Emory University's Clinical Biomarkers Lab (Paige Cowett, WNYC) The collaboration between Cohn and Jones is just beginning to show very early results. When Jones tested Cohn’s study samples, he found that the mothers of daughters with cancer had a dysregulated process when it came to the metabolism of linoleate, an essential fatty acid. Jones doesn’t know yet why or how an exposure could trigger that dysregulation, but once he can understand that mechanism, he’ll understand how to intervene to possibly prevent or reverse that change. The goal for Jones is to be able to analyze a million chemicals someday and come up with an affordable clinical test that doctors could use on a routine basis to predict negative health outcomes based on specific biomarkers, “so that we can develop what I call a health forecasting system,” Jones said. The research and technology isn’t there yet, but Cohn and Jones are getting closer. Know Your Exposure: A Cancer Quiz Over a lifetime, our risk for developing cancer is affected by our exposure to all kinds of things. Chemicals, X-ray radiation and lifestyle can tilt the odds against us. Take our quiz to explore the risks, including some you can avoid. Our series is produced with NPR and with WETA, whose documentary Ken Burns...

Dr. Barbara Cohn, epidemiologist and director of the Child Health and Development Studies, a program of the Public Health Institute, tests pregnancy blood to see if environmental chemical exposure in utero eventually results in breast cancer in the child. She explains the links she's found, and what they tell us about cancer prevention. She is joined by Dr. Linda Birnbaum, director of the National Institute of Environmental Health Sciences (NIEHS), one of the National Institutes of Health (NIH).

After years of debating whether to have a second child, my husband, Mark, and I decided to give it a try. Two weeks later, we found a lump. I was 35. When the diagnosis of breast cancer was made, we learned how treatment could affect fertility: chemo could jump-start menopause. Doctors wouldn't feel comfortable letting us try to get pregnant until I'd completed five years of hormone therapy. Even adoption agencies would want to see that I'd achieved five year post-cancer survival. We quietly gave up on the idea of a sibling for our son, Leo. Then, the day before my scheduled lumpectomy, my oncology nurse called with stunning news: routine bloodwork had uncovered that I was already pregnant. You can listen to our audio diary above. October 25, 2013 This is the very first ultrasound I have of the baby we now call Stella. It was taken a few days after surgery. I’d had two ultrasounds already, but my obstetrician hadn’t let me see any images until this one — she didn’t want me to get too attached to the idea of a baby until we made it out of the lumpectomy OK. We were still waiting to find out how aggressive the tumor was, and whether it had spread. My doctors made me promise to revisit the idea of terminating the pregnancy if the cancer was worse than they expected. Three days after surgery, my doctors let me look at an ultrasound for the first time. (Courtesy of Mary Harris) February 20, 2014 Before chemo, we went away for a vacation with our son, Leo. We were sitting on the beach when I told him I was about to start therapy. “I have to take strong medication, and one of the side effects – when you take this medication – is that your hair falls out,” I said. “Nooooooo!” he yelled. I was shocked he reacted so strongly – until I realized he thought I was telling him HIS hair was going to fall out. When I explained that he would get to keep his hair, he was hugely relieved. Leo, me and Mark in Florida just before chemo. (Courtesy of Mary Harris) March 19, 2014 Everyone says “you just know” when you have to shave your head. You get sick of finding hair in the shower and on your pillow. My hair had been long for more than 20 years, and it was so thick that it took a long while for me to reach that point. But three weeks after my first round of chemotherapy, I’d stopped brushing and washing it, just to keep it attached a day or two longer. I actually took the day off work because I was afraid of my hair falling out in the office. That's how I knew -- it was time to let go. Mark and I shaved my head at home with Leo. We thought losing my hair would feel less traumatic for Leo if he was part of the process. (Courtesy of Mary Harris) April 29, 2014 My son had a hard time accepting the hair loss. He could be goofy about it — asking to show off my bald head to his friends — but then he brought home this journal entry from school, and I realized his feelings were more mixed. Leo's school journal was the one place he expressed any emotion about my cancer treatment. (Courtesy of Mary Harris) May 1, 2014 On my last day of chemo, we weren’t sure what to do, so we went to the Brooklyn Botanical Garden to celebrate. But it felt like we had so many hurdles still ahead of us — I had to get my blood counts up, give birth, then get radiation. And we were hoping the baby was healthy. On the last day of chemotherapy, my husband and I went to the Brooklyn Botanical Garden to celebrate. It was the first time I walked around in public without covering my head. (Courtesy of Mary Harris) May 30, 2014 Stella was born incredibly quickly; I spent just four hours in labor. When the doctor handed her to me, it was a huge relief to see that she had even more hair than I did, and her birth weight was normal, at 7 lbs. 5 oz. No one knows what her chemo exposure really was, but her mop of black hair seemed like proof that she was protected, somehow. My doctors have this picture pinned up in their office....

Immunotherapy has shown remarkable gains in treating cancer by harnessing the body’s own immune system, and Dr. Jedd Wolchok, chief of the Melanoma and Immunotherapeutics Service at Memorial Sloan Kettering Cancer Center is one of the leading researchers in the field. His patient, senior staff writer at Salon.com Mary Elizabeth Williams, is the beneficiary of an early immunotherapy trial, and her metastatic melanoma vanished after months of treatment. They join us in the studio to explain how this treatment works and how it could change the way cancer is treated from now on. They are featured in the upcoming Ken Burns/Ark Media documentary, Cancer: The Emperor of All Maladies, as well as the WNYC/NPR series "Living Cancer."

Today, cancer tends to be spoken about with openness. But 60 years ago, the medical approach to the diagnosis and prognosis of cancer was frequently a matter of how to deliver the worst news in the best possible way. In the 1950s, WNYC Radio and The New York Academy of Medicine produced a series of "Cancer Alerts" for doctors. According to Dr. Harold Sage, a surgeon at Bellevue Hospital and member of the New York Cancer Society at the time, the medical community feared that a patient would not be able to cope with a cancer diagnosis. Sage thought it was the doctor’s duty to protect the patient from what was a likely death sentence. In this recording, Sage asks: “Is the truth a necessity?” Deciding whether or not to tell a patient he or she had cancer was dependent on “the personality of the patient, his background of education and beliefs, his age and faith…” Sage said. One patient might be better able to cope than another, he felt, but ultimately peace of mind and consistency in approach took priority over truth. A half century ago, the idea of sacrificing a patient’s peace of mind was not worth “a little knowledge.” But today, quality of life — and the quality of the end of life in particular — continues to be redefined.

(The SOUND in the room is normal. No more SLOW-MOTION. Walt looks up from the man's lapel.) DOCTOR: Mr. White. Mr. White? WALT: Yes. DOCTOR: You've understood what I've just said to you? WALT: Yes. Lung cancer. Inoperable. DOCTOR: I'm sorry, I just need to make sure you fully understand. WALT: Best-case scenario, with chemo, I'll live maybe another couple of years. (Off the man's gaze.) It's just, you've got mustard on your... (He points to his lapel.) You've got mustard there. Right there. - Breaking Bad pilot It’s a cliché… a patient is diagnosed with cancer and told they have ‘x months left to live.’ And if that person lives less than that amount of time, they feel as though they have been cheated or mislead. If they live longer than their prognosis, they doubt their doctor or feel they are living on borrowed time. Dr. Tomer Levin, a psychiatrist at Memorial Sloan Kettering Cancer Center in New York, believes that the problem lies in a breakdown in communication between doctor and patient. “These prognostic conversations drive patients and their families crazy,” he explains. “Because it's hard to understand the stats. It really is.” To improve patients’ understanding of their prognosis, Levin helps run Comskil, communication skills workshops at Memorial Sloan Kettering to guide cancer doctors and caregivers on how to deliver a prognosis effectively and empathically. Here's what he thinks patients need to know: A cancer prognosis is not an absolute number. Cancer patients retain less than half of what their oncologists tell them. Studies show that when doctors make a personal connection with a patient, they tend to be overly optimistic. One in ten patients do MUCH better than the median survival for their cancer. a 1-year median survival; 1 of those patients will actually live for 3 to 4 years. And Our series is produced with WETA, whose documentary Ken Burns Presents Cancer: The Emperor of All Maladies will air on PBS in March.

Studies show cancer patients retain less than half of the information the doctor gives them in a prognosis. Dr. Philip Bialer, psychiatrist at Memorial Sloan Kettering and the interim director of COMSKIL, the communications skills research and training lab, discusses the accuracy of prognoses, and explains how doctors can do a better job communicating prognosis to patients.

Treating cancer is a race against time. And every once in a while, there’s a drug in development that is so promising, patients plead with pharmaceutical companies to gain access before the FDA’s approval. That has been happening with a new class of drugs, called immunotherapy drugs – treatments that harness the immune system to fight cancer. Kathy Liu first heard about immunotherapy a few years ago at a conference focusing on the rare renal cancer her 10-year old son Joey was fighting. Liu had her son’s cancer tumors analyzed and indeed he did seem like a candidate for immunotherapy. “That’s why I’m so desperate, contacting the drug companies,” she told WNYC. “I told them I understand the policy, I understand the regulation, and I understand all the risks, but my child just has no time to wait.” Listen to the challenges faced by the family, and their caregivers, as they try to save a dying boy. You can see more pictures of Joey on the family's website, Joey's Wings. Our series is produced with NPR and with WETA, whose documentary Ken Burns Presents Cancer: The Emperor of All Maladies will air on PBS in March.

When Barbara Marder was diagnosed with lung cancer three years ago, she had part of her right lung removed, went through a round of chemotherapy and tried to move on with her life. "I had hoped that everything was fine — that I would not create difficulty for my children; that I would get to see my grandchildren grow up," says Marder, 73, of Arnold, Md. But a routine scan a year later found bad news: The cancer was back — this time in her other lung. "I was very disappointed," says Marder. She knew her prognosis was grim. "I decided at that point that ... I should think about the fact that perhaps this was going to advance rapidly at this point. And check and make sure: 'Is my will in order? What should I do so that my children aren't left with a mess to clean up in my house?' " But Marder didn't give up. She started exploring her options, which eventually brought her to Johns Hopkins in Baltimore, where doctors are testing a new type of cancer treatment known as immunotherapy. "Immunotherapy for cancer means developing treatments to harness your immune system and using your own immune system to fight the cancer," says Dr. Julie Brahmer, an associate professor of oncology and Marder's doctor. Scientists have been trying to do this for decades. After all, our immune systems can fight off all kinds of health threats. So, why not cancer? But nothing seemed to really work. "It's been very frustrating," Brahmer says. But scientists recently discovered that cancer takes a page from Harry Potter: It puts on a kind of invisibility cloak. "Cancer can keep the immune system from recognizing that it's bad and keep it from attacking itself," Brahmer says. Now scientists have found a way around this. "The breakthrough is in therapies called 'checkpoint inhibitors,'" Brahmer says. Checkpoint inhibitors are drugs that pull off cancer's invisibility cloak by blocking the switch that turns it on. "It prevents that invisibility cloak or that force field or shield ... from going up," Brahmer says. "So it can't shield itself from the immune system." And these drugs seem to be working, at least for some patients — melting away the toughest tumors, such as some melanomas, the deadliest kind of skin cancer. "They seem to be working quite well for multiple different cancers," Brahmer says, including kidney cancer, bladder cancer, head and neck cancer, lymphoma and even perhaps breast and lung cancer. So Marder volunteered for one of Brahmer's studies testing a checkpoint inhibitor called nivolumab, or Opdivo, for lung cancer. Within weeks of starting her infusions, the tumors in her left lung began to disappear. "That was very, very exciting. It really changed my perspective. I thought, 'Jeepers,' " Marder says. Checkpoint inhibitors can cause serious side effects when the immune system attacks healthy cells, causing dangerous, even sometimes life-threatening, organ damage. But so far that appears to be relatively rare. Most patients just get a little tired. Some, like Marder, get an itchy rash. But compared to traditional chemotherapy, it's easier in most cases. "You can live a great life," Brahmer says. "Travel and try to live your life as as normally as possible. That's definitely different than chemotherapy." One big question is, how long will these drugs keep working? Traditional chemotherapy often stops working with time — the length of effectiveness varies depending on the patient, the type of cancer and the stage at which it was diagnosed. But so far checkpoint inhibitors seem to keep going a lot longer, even in patients who have stopped responding to standard chemotherapy. No one knows yet how much longer. But Brahmer says so far it looks promising. "We're reporting three-year survival rates in (lung cancer) patients who we would say typically should not be around," Brahmer says. For melanoma, researchers have followed patients for even longer, she says. When Marder came back for a checkup more than a year after...