A novel about Vivian, a young Irish girl sent by rail from a New York City tenement to Minnesota in the early 1900s. She was one of thousands of abandoned children sent to live with rural families for a better life. But not all ended up in loving homes.
With more than 11.1 million cancer survivors in the United States today, researchers and doctors are grappling with the challenge of helping patients maintain or regain a sense of well-being. But with increased survival rates another challenge has arisen — how are we going to fund increasing expensive, personalized and long-lived treatment regimes.
- Dr. Julia Rowland Director of the Office of Cancer Survivorship, National Cancer Institute
- Dr. Louis Weiner Director, Lombardi Comprehensive Cancer Center and Chair of the Department of Oncology at Georgetown University Medical Center
- Ellen Sigal chair and founder of Friends of Cancer Research, a cancer research think tank and advocacy organization.
- Dr. S. Ward Casscells John E. Tyson Distinguished Professor of Medicine and Public Health, and Vice President for External Affairs and Public Policy at the University of Texas Health Science Center at Houston. He is the former Assistant Secretary of Defense (Health Affairs).
A cure for cancer is the holy grail for doctors working in oncology, but that’s unlikely in the near future. Cancer patients are increasingly living longer and better lives. Guest host Susan Page and panelists discuss what this means for our approach to the disease, and for those living with it.
The Definition of “Cancer Survivor”
For many years, the definition of a cancer survivor was someone who had been alive and disease-free following cancer for five years. But that changed in 1986 with the creation of the National Coalition for Cancer Survivorship. The new group felt that it wasn’t O.K. for an individual to have to wait for five years to call him or herself a cancer survivor. So they proposed a change that would allow an individual to call himself a cancer survivor from the moment of diagnosis, according to Dr. Julia Rowland. About 12 million people in the U.S. are currently called “survivors,” and about 15 percent of them have been alive for 20 years.
What Is Helping People Live Longer?
About 40 years ago, the survival rate for those diagnosed with any type of cancer was about 50 percent. Today, it’s about 66 percent, according to Dr. Louis Weiner. Doctors are able to detect and treat cancers at an earlier stage, when it’s easier to treat them, Dr. Weiner said. In addition, doctors have been more successful at effectively managing the diseases of people whose cancers may not be curable by surgery or other treatments.
Investments in Research
There have also been extraordinary investments in biomedical research at institutes like the NIH and National Cancer Institute in recent years. It costs $500 billion each year to fight cancer, said Dr. Ellen Sigal. But as our national politics have been paralyzed in recent months by fears over budget deficits, doctors and researchers worry about cutbacks to necessary funding. “There’s considerable concern…that there will be insufficient support to do the work that’s necessary to keep these advances coming and to be able to identify molecular targets, to have tailored medicine, that this is going to be a new challenge for us,” Dr. Rowland said.
Some Challenges Facing Survivors
While most of the individuals treated for cancer do return to the workforce, survivors worry about discrimination in the workplace based on their illness. The Americans With Disabilities Act protects cancer survivors from discrimination, but it can happen. Guest host Susan Page asked the doctors if patients who have survived cancer are often “haunted” by fears that the cancer will return. “If you looked at one thing that’s common across all individuals who are diagnosed with cancer, it’s that fear of recurrence,” Dr. Rowland said.
You can read the full transcript here.
MS. SUSAN PAGEThanks for joining us. I'm Susan Page of USA Today sitting in for Diane Rehm. A cure for cancer is the holy grail for doctors working in oncology. Well, that's unlikely in the near future. Cancer patients are increasingly living longer and better lives. To discuss what this means for our approach to the disease, and for those living with it, we're joined by Dr. Ward Casscells from the University of Texas Health Science Center, Ellen Sigal from Friends of Cancer Research, Dr. Louis Weiner from the Lombardi Comprehensive Cancer Center, and Dr. Julia Rowland from the National Cancer Institute. Welcome to "The Diane Rehm Show."
PAGEWe're going to invite our listeners to join our conversation. You can call our toll-free number 1-800-433-8850, or send us an email to firstname.lastname@example.org. You can find us on Facebook or Twitter. Well, Dr. Casscells, you are both a doctor and a cancer survivor. Tell us about your experience with the disease.
DR. S. WARD CASSCELLSWell, Susan, thank you. I had some back pain about almost 11 years ago and I had had back pain from sports and so forth for years, so I didn't pay much attention the first couple of months. But then it developed a different quality, more relentless quality, so I sought out a couple of doctors and one -- each ordered different kinds of x-rays, but neither one picked it up. And I had asked -- I asked one of them for a PSA because I felt a little strange sensation down in the rectal area, and he said he ordered it.
DR. S. WARD CASSCELLSI stopped him a few days later in the hall, and I said, were all the labs normal? He said, yeah, they're all normal, so I assumed the PSA was normal, but it hadn't been ordered.
PAGEThis is, of course, a test for prostate cancer?
CASSCELLSYes. And this was -- here I was 47, and then at 49, after putting up with this for some time, I ordered my own MRI. Being a doctor, you're allowed to do that. And so with a young resident at 9:00 o'clock at night, we interpreted and he said, wow, that's a lot of metastatic cancer. How long have you had cancer? I said, this is the first I've heard of it. So that was a cold bath, particularly since the doctors were good doctors and friends of mine.
PAGENow, you were 49 at this time. How old are you now?
CASSCELLSI'm 59 1/2, gonna make 60 in March, it looks like.
PAGEWell, congratulations. So you lived a decade.
CASSCELLSI've lived a decade.
PAGENow, was that your expectation at 49 when this was diagnosed? Did you think you would last a decade?
CASSCELLSWell, no. Of course, when you have what I had, which was a very high-grade, ugly-looking prostate cancer, which is spread all over the place. In fact, the doctor, Dr. Logothetis at MD Anderson, one of the heroes and saints in the profession, said you have stage five. I said, there are only four stages according to the text book. He said, you have stage five, so that was pretty sobering and -- but I said, well, that sounds like two to three years, right?
CASSCELLSHe said no. We've gotten much more aggressive, and I'm almost sure I can get you eight. And if I can get you eight, you know, some of those kids will be teenagers and you'll have them on the right path. So that was enough. I said, you're my doctor.
PAGEWell, congratulations on making it to 10, and we hope that streak continues for some time. Dr. Julia Rowland, how do we define a cancer survivor? Clearly Dr. Casscells is one.
DR. JULIA ROWLANDSusan, that's a great question. You know, for many years the medical definition of a survivor was an individual who had been alive following cancer, but disease free for five years. All of that changed back in 1986 when a small group of individuals, about two dozen individuals, gathered in Albuquerque, New Mexico, and created what we know as today, the National Coalition for Cancer Survivorship.
DR. JULIA ROWLANDAnd at that meeting, they reasoned that it was not okay for an individual to have to wait five years to call him or herself a cancer survivor. You can't wait that long to have decisions about what your care is going to be like, whether you want to preserve your fertility, whether you want to preserve a limb, whether the treatment you might have will alter your outcome. So they proposed that we change the definition of a cancer survivor to embrace one that indicated that you could call yourself a survivor from the moment of diagnosis, and for the balance of your life.
DR. JULIA ROWLANDIt wasn't meant to be a label, it was meant to be a philosophical change to have the medical community embrace that definition and thereby work with individuals from the moment of diagnosis, making decisions about what's their life going to be like after this treatment.
PAGESo it assumes that you can survive cancer, that it's not a death sentence.
ROWLANDAbsolutely. It's a very hopeful message, and it's a very realistic one because we know that the vast majority of individuals who are treated today, diagnosed and treated, will be here more than five years, and I think Dr. Casscells is a wonderful example. We have people who are hear long term, living with even active disease, but living for years, which is a very different picture today.
PAGESo Ellen Sigal, how many people in the United States are now classified as cancer survivors?
MS. ELLEN SIGALThank you, Susan. Twelve million. But what's really interesting about that number is that of that number, 15 percent have been alive for 20 years. The average survival has gone up from five years to almost 70 percent, 68 percent, for most, and in pediatric cancers it's nine percent, and some cancer survivors in prostate and I breast are surviving fare more than that. So there's some really good news in survivorship.
PAGETwo-thirds of adults diagnosed with cancer today will be alive in five years, and it's interesting. One out of every six people over 65 is a cancer survivor. So Dr. Weiner, what is helping people live longer with cancer?
DR. LOUIS WEINERWell, first of all, I think Dr. Casscells' wonderful story is a testament to the improved care that we're able to give to people whose disease presents not at a very early stage, but after it's passed beyond the conventional point of surgical care. But I think it's important to note that the improvement in survival that we've seen, and to put this in perspective, 40 years ago, when the National Cancer Act was first adopted, the survival from cancer was roughly 50 percent, and as Ellen just noted, it's roughly two out of three people now, 67 percent or thereabouts who are cured of their cancers or are long-term survivors.
DR. LOUIS WEINERThat's a remarkable shift in a 40-year period for such a complex cancer. Obviously, we still have a long way to go. But I think that it's important to put in perspective why those advances have occurred. The first has been that we are doing a much better job of diagnosing cancers at an earlier stage when it's earlier to treat them with a curative intent, and that's a wonderful thing. And we've developed more effective strategies for approaching those kinds of cancers at an earlier stage.
DR. LOUIS WEINERComplimenting that has been our ability to effectively manage the diseases of people whose cancers maybe cannot be cured by surgery or other locally directed treatments, but are nonetheless amenable to long-term therapy, and I think Dr. Casscells' example I think is really very germane to this conversation.
PAGEWell, does this fact of longer survival and survival often with a better quality of life, does it require changes in the way doctors think about the disease and the way doctors relate to their patients?
WEINERAbsolutely. The medical oncologist has become the primary care physician for people with cancer in this country, and that is both a good thing and a bad thing, because medical oncologists have been trained historically to function really at the crisis moment for a patient, when there is a cancer that must be dealt with and there is aggressive therapy that must be managed. But now that we have people living four, five, 10, 20 years, sometimes with an advanced disease, there's a different dynamic that has to come into play, and our society and the medical profession have to adopt to that.
PAGEDr. Casscells, so you've lived 10 years with this cancer diagnosis, quite a dire one. What's your life been like? How has it affected your daily life?
CASSCELLSWell, Susan, at first, it's -- there's a tremendous sense of panic. You have a job, you have a family. I had little kids. My wife, of course, didn't believe the diagnosis. Neither did I at some level, but she came in and saw Dr. Logothetis with me, and he was so reassuring that we would get some good years. So we thought we certainly have to tell the kids, and tell them in sort of a confident way that they wouldn't think they were losing dad right away.
PAGENow, how older were your kids at that point?
CASSCELLSThe kids were -- Lily was almost four, and Henry was almost six, and Sam was 10, and so they needed -- they were at a stage where they still needed plenty of guidance. We had -- got a late start, my wife and I. So certainly we told the kids, told my parents, her parents, my siblings, her siblings. You got to tell your boss, and of course, then it spreads everywhere, and pretty soon you realize you gotta tell a ton of people, and then you don't want anybody's feelings to be hurt so you have to tell them all the same day.
CASSCELLSSo you make this big long list, and you quickly tell everybody you've got cancer and you're gonna try and tough it out, and then it sinks in that, holy smokes, you have very little time to make a little money and put it in the bank, and you've got very little time to wrap up some projects at work that people are depending on you for, and what's gonna happen to your spouse. My wife wasn't working at the time. She had worked at several administrations here in Washington, but all of a sudden it comes down on you like a ton of bricks.
CASSCELLSYou don't have enough money, you don't have enough time, you haven't written letters to your kids, you haven't a memoir. You've got a millions things to do and maybe only two to three years to do. So what do you cut out? You cut out sleep? Well, no. The doctor says you need to rest. Cut out exercise? No. The doctor says people who exercise live longer with cancer. So you're really in a quandary in the beginning.
PAGEWe're gonna take a short break, and when we come back, we'll continue our conversation about how individuals live with long-term -- over the long-term with diagnoses of cancer, and what it means to their families and to the medical profession, and to our society at large. How do we pay for this more extended care for more people? We're gonna take your calls, 1-800-433-8850, or send us an email, email@example.com. Stay with us.
PAGEWelcome back. I'm Susan Page of USA Today sitting in for Diane Rehm. And with me in the studio this hour, Dr. S. Ward Casscells. He's a professor of medicine at the University of Texas in Houston. He's a senior scholar at the Texas Heart Institute and a former Assistance Secretary of Defense. And Ellen Sigal, chair and founder of Friends of Cancer Research, a cancer research think tank and advocacy organization. Dr. Louis Weiner. He's director of the Lombardi Comprehensive Cancer Center and Chair of the Department of Oncology at Georgetown University Medical Center. Finally Julia Rowland, Director of the Office of Cancer Survivorship at the National Cancer Institute.
PAGESo certainly a remarkable array of talent here in the room with me. Let's let our listeners join this conversation. We'll go first to Grant who's calling us from Washington, D.C. Grant, hi. You're on "The Diane Rehm Show."
GRANTHow are you?
PAGEI'm good, thank you. Go ahead.
GRANTI just wanted to share a story. My son Ezekiel was diagnosed when he was three years old with a very rare form of bone tumor called Ewing sarcoma. We went through nine months of chemotherapy at Children's Hospital. He's now been clean for a year-and-a-half. He had his femur and his knee replaced as part of that surgery -- as part of that process. And we're actually getting ready to have a new femur put in. The one that he has actually broke. And so I wanted to commend on that.
GRANTAnd then I also wanted to comment that his particular type of cancer has a genetic marker, has some chromosomes that are translocated. And so it's become one of the targets for the new generation of chemotherapy drugs that are specifically targeting the diseased cells and trying to avoid kind of poisoning the rest of the body. There's a company just formed in L.A. that looks like it's bringing a drug to market.
PAGEGrant, your son was three when he was diagnosed? How old is he now?
PAGEHe's five. And how has it been raising -- we're so glad that he's -- he's doing well so far?
GRANTWhat was that, I'm sorry?
PAGEHe's doing well so far with the surgeries he's had and so on? Do you feel like things are going well or not so well?
GRANTOh, no -- yeah. It's going actually very well. He's been clean -- he's got CMs every three months. There are no blood markers for his particular cancer so he has to have, you know, radiology scans and cat scans. But, you know, with his age and his energy, you know, even with this latest setback with his artificial leg -- I mean, with his walker and his crutches he's been able to get around. I mean, it just never seizes to amaze me how adaptable he is and kinda just keeps kicking. And it's just very inspiring.
PAGEWe're so glad to hear that. Now raising a son three to five years old dealing with cancer, how do you manage to keep -- let him have a childhood while also dealing with this serious disease?
GRANTWell, he's one of five kids so he has lots of fun with his brothers and sisters. They're all very supportive. We actually have chosen to home school so we're starting that this year. You know, but he gets out and he plays with his friends. They play outside and, you know, he takes his walker or his crutch. Or, you know, most of the summer he was fine because he could walk on his leg with no assistance at all. And the new device that they're putting in is actually an expandable prosthesis. The first one that they put in him when he was three was the smallest one that they'd ever made. And so he's kind of participating in the cutting edge of technology.
PAGEWell, we're glad...
GRANTAnd it goes to the point, you know, that I feel like the longer we can fight and the longer we can hang on the better his chances to live a normal life will be.
PAGEWell, we certainly send our best wishes your way. A lot for a little child to be dealing with. Thanks so much for your call. Dr. Weiner, I know this -- these issues are -- seem especially acute for children who have cancer.
WEINERThey do. And it's, again, very inspiring to hear the story of this little boy. And it really brings up a couple of very important considerations. Firstly, Ewing sarcoma is a disease that really responds in the way that we would like a disease to respond to aggressive multi-agent and multimodal treatment, with surgery, radiation, sometimes chemotherapy, et cetera. It can be very responsive and children can be cured by that approach and that's really exciting.
WEINERBut the caller actually mentioned the chromosomal abnormalities. And several of my colleagues at Georgetown have actually done some seminal work in identifying this chromosomal abnormality called DWS Fly 1, which indeed is one of the drivers of the malignancy. So why is that important? Because as the caller mentions if you could develop a drug that could target the molecular driver of the cancer you might be able to develop a very safe and potentially very limited toxicity approach to keeping the cancer under control even if a cancer like that were to be active and not cured.
WEINERAnd this becomes the opportunity that's so great and the challenge that is so remarkable because these are going to cost money. This is a rare cancer. How are we going to afford it as a society? There are many questions that are raised but the opportunity is extraordinary.
SIGALSo this is a wonderful story but we have to put this in context in terms of why we're able to target drugs and have more effective treatment for children today, and for all people. And it's because of an extraordinary investment in biomedical research and the NIH and the National Cancer Institute specifically. And an ego system that has to work. Because if we're going to have direct research we're going to have to be able to get the drugs for these patients, these targeted drugs. We're not doing one size fits all.
SIGALAnd it's important to have a healthy FDA that's funded appropriately, that's ready for this personalized medicine. And just to have one statistic, it costs $500 million -- $500 billion a year to treat cancer. That saving would be enormous, just 1 percent -- 1 percent in decrease in cost of paying for cancer.
SIGALThe amount of money for research or research funding at the NIH is $30 billion. Imagine -- for the National Cancer Institute it's a little over 5 billion. Imagine what we would do not only in the research but for patients, to get them -- to diagnose them early, to treat them early, to get them the best treatments that work for them. And that's really what's really important to think about.
PAGEAnd yet of course, famously, we're very concerned as a nation about our big budget deficit, our mounting national debt. And I wonder how is this kind of research going to fair from a federal level amid that kind of climate do you think, Julia?
ROWLANDWell, there's certainly concern that we need, as Ellen said, to have continued money coming in for our grantees and our investigator community. And there's considerable concern in that community that there will be insufficient support to do the work that's necessary to keep these advances coming and to be able to identify molecular targets, to have tailored medicine, that this is going to be a new challenge for us.
ROWLANDNot least of which also is, as has been mentioned earlier, funds to identify what's the best way to care for individuals once they've finished that definitive therapy. Who's going to follow them? What are the tests that they need? What's the best way to deliver that care? And what are the cost concerns that are going to attend to that?
WEINERSaving money by reducing investment in research yields fool's gold, pure and simple. Every time we reduce the funding for research we are also failing to make the progress that's required to save a life. And I don't think it's an accident that the National Cancer Act, which is now 40 years old, led to an investment in research which has been associated with the dramatic reduction in the number of cancer deaths. So we're, you know, saving pennies but losing dollars.
PAGEDoes the healthcare overhaul that President Obama signed last year, does it affect funding for these kinds of -- this kind of research?
CASSCELLSWell, Ward Casscells here. Susan, NIH funding is about flats when real dollars is going down National Cancer (unintelligible) republican bill has the increase, the senate bill has the decrease. It'll probably end up flat. On the Department of Defense side where I used to put in about $600 million into cancer research when I ran that, we're looking at a small decrease as well. So there is some jeopardy and I agree with what Julia and Lou and Ellen have said.
CASSCELLSBut I would say one other thing, if I may, and that is that as much as we put into research that's not the whole story. And you've put your finger on it. What does Obama care -- as a Republican (word?) I have to use that phrase, but I'm in favor of it. And what does Obama care to do for cancer patients? It does a heck of a lot. Here's what. It has special funds just to improve the quality of care. And the quality of cancer care is terribly uneven. It's a dirty little secret that people don't like to talk about.
CASSCELLSIn my opinion, minorities don't get as good care, women don't get as good care. And that's a subtlety. That's not a fault of the system but it's a family issue. Almost no one gets the kind of fantastic care I got because it requires a combination of living next door to the NV Anderson Cancer Center, being a natural nag and hysteric, which I am, being vice-president of the university. Having made a little money in a startup cancer company interestingly enough, that I could put money into some of these things and serve on the board and be a big pain in the neck to some of the doctors.
CASSCELLSSo when I go in for care, not only do I have the very best doctor, Dr. Logothetis who's thoughtful and caring and open to my questions about alternative and complimentary things, you know, curcuma and red pepper and pomegranate juice, but everybody in his staff is on the lookout because frankly I'm sort of a VIP in the neighborhood. Well, not everybody has that.
CASSCELLSAnd when I go home, Susan, I've got a loving wife and loving kids and I'm not as poor as I was when I was a young faculty member because of some entrepreneurial things I did in science. So we actually have someone who comes in and can help clean the house. And my wife can take care of me. Well, what if you were a single mom or your husband's working and your mom with cancer. It's hard as heck for them.
CASSCELLSSo I had it easy and I've had a great -- I mean, I've lived three times longer than the average person with metastatic stage five Gleason nine prostate cancer, three times longer. I would say that research -- and I've been involved in six clinical trials -- has been a contributor but certainly not all.
PAGEI'm Susan Page and you're listening to "The Diane Rehm Show." We're taking your calls, 1-800-433-8850. Ellen Sigal, you wanted to weigh in on this point.
SIGALYes. Well, I just wanted to mention two things. As part of the ACA, there is...
PAGEThe ACA being...
SIGAL...which is the Affordable Care Act, there is a commission called -- independent called Patient Centered Research Outcome Institute (sic) PCORI P-C-O-R-I, and I serve on it as the patient advocate. And our goal is really to have patient-centered research really looked at in a different way to look at treatments, to answer questions that patients may have. And at the end of the day all patients want to know, will this work for me. What are my choices? What are the toxicities? So this commission is really set up to look at the healthcare along all sectors and to see what works for patients and to put patients first. So that's very important.
SIGALBut I do want to go back to the healthcare issues and the NIH and the FDA because we have gained an enormous amount of knowledge. We are keeping people longer -- keeping people alive longer but there's a lot of progress that we still need to make. We still don't know exactly how to diagnose pancreatic cancer, liver cancers, esophageal cancer, brain cancer. So there's a lot that we need to do. We have 325,000 researchers that are funded by the NIH. We are funding over 3,000 universities. If we don't continue this we will be giving patients treatments that don't work. So this is a part of the system that must work.
WEINERSo I think it's really important -- I want to echo one of the comments that Ellen just made. We need to do a better job of taking care of patients and making our care patient-centered. It has to be about the person with cancer. And even more importantly we have to recognize that the best treatment for a person with cancer is not only giving the state of the art care for today but giving tomorrow's treatments today. And the way we do that is by figuring out how to integrate research studies into our clinical care so that our patients get the absolute cutting edge of what's available to them at all times.
WEINERThat is what was done for pediatric cancer over the last 40 years and it has led to remarkable advances in patient management. And I believe the same can be accomplished if we do this with adults.
PAGENow, Julia, there are lots of aspects to the quality of life for cancer survivors. One is access to the most cutting edge care. Of course it's very important. There are other things too like employment problems and what it means to personal relationships in a family. Talk a bit about those challenges.
ROWLANDWell, certainly employment in the United States is a big issue and a concern for those who are diagnosed because most of us get our insurance from our status of employment. And if that's jeopardized we will worry about whether we can even afford care if we're diagnosed with cancer or if our loved one is diagnosed with cancer. So that's been a very seminal theme in the United States at least.
ROWLANDBut what we do know from the studies that have been funded looking at this is the majority of individuals who are treated for cancer actually remain in or go back to the workforce. They're invested in doing that. Some of the myths that used to be common or that somebody who had cancer would be a less functional employee, which we found is not the case. In fact there's data that suggests that individuals who have a cancer history actually work harder and have fewer days off than their peers or colleagues who don't have a cancer history.
ROWLANDSo we're seeing that change. But it's very important for individuals who are diagnosed to know that they have legal rights. So Americans with Disabilities Act protects them for coverage in their employment that accommodations can be made. And it's very important for them to know that when they're negotiating what needs to be done while they're in active treatment. Can they have flexibility in the workplace? What accommodations will be made? And then what's that reentry going to be like?
PAGESo is it illegal to discriminate against someone because they have cancer or to make an employment decision on the basis of their diagnoses?
ROWLANDYes, it is illegal.
PAGESo it's illegal but does it happen?
ROWLANDIt probably does happen. It's -- again, when people are looking for a job and you have a cancer history you do not have to disclose that history. However, if there's been a long hiatus between the time you were working and you're now starting a new job you may be asked about what were you doing during that period. And certainly if you're offered a job and you agree to take a new position you do have to at some point tell your employers about your history for insurance purposes. But it's only at that point in time.
PAGEI wonder if you've survived cancer, to what degree does it kind of haunt you? Do what degree do you worry that it's going to come back? Or are people able to move totally on and past this experience?
ROWLANDSusan, great question and if you looked at the one thing that's common across all individuals who are diagnosed with cancer, it's that fear of recurrence. Is this disease going to come back now that the treatment is stopped? And that is a nagging worry for many, many individuals. Does not necessarily go away over time and for some can be incapacitating.
PAGEWe're going to take another short break. When we come back, we'll go back to the phones. We'll hear some of your own stories about your experience with cancer, experience in your family. Our phone line, 1-800-433-8850 or send us an email at firstname.lastname@example.org. Stay with us.
PAGEWe'll go straight to the phones and talk to Jesse. He's calling us from St. Louis. Jesse, thank you for holding on.
JESSEI am calling because I have several people in my family and friends that have had cancer. The most recent is my fiancé. Her dad had prostate cancer and he actually is, you know, still living. He had the octopus surgery where they turn him upside down and go in and cut it out. And he is -- he just got his results back after a few years and he's completely cancer free. I mean, yeah, so we're extremely happy about that. My grandfather had prostate cancer and it metastasized, went to brain cancer and then just kinda spread from there. He did not make it.
JESSEA friend of my mother's, her daughter had osteosarcoma right above her knee and it metastasized, went to the lungs. And then actually she's not -- predicted not to make it. It's very aggressive. One of her friends from her school actually has the same condition and she has already died from that.
JESSEMy comment is, I've done a lot of reading about cancer over the years. And I just want to make one comment that the five-year role for survivorship, it was never based on whether you were disease free but whether you were living at the five-year mark from the first diagnosis. And changing that to where now that everyone's considered a survivor, it just really hides the grim fact that most people don't make it to the five-year mark and that most -- there are a lot of people who are counted as survivors even prior to the rules being changed that still be on their deathbed at the five-year mark but then if they died one day after that they were counted as a survivor.
PAGEJesse, thanks so much for your call. We're sorry to hear about the struggles among your family and friends with cancer. We have a similar email from Amy. She writes, "Not all types of cancer are being successfully treated. Pancreatic cancer, which my 49-year-old husband is living with, has a one-year survival rate of 20 percent and a five-year survival rate of 5 percent. These statistics have not changed for the past 25 years despite the fact that pancreatic cancer is the fourth leading cause of cancer death in the United States.
PAGEWell, Dr. Weiner, what about Jesse's point? He said that most cancer patients don't make it to the five-year mark.
WEINERWell, actually if you look at the statistics, about 1.5 million people will be diagnosed with cancer in the United States this year and a little over 500,000 will succumb to the disease. And if you just look at those numbers and you work them out that means that two out of three people -- or roughly two out of three people are surviving and are making it more than five years. Sometimes it's very hard. If you look at your own immediate group of friends and family you can sometimes be influenced by your personal observations and think that perhaps things are really worse than they really are. But in fact two out of three people are surviving cancer.
WEINERSome -- now the five-year rule is in fact a guideline. There are some cancers, certain kinds of aggressive cancers where two years of disease free survival almost always means that the individual is cured. There are other diseases where we have to wait a lot longer before we can be confident that somebody is cured. And as we've talked about earlier, many people can actually live with cancer that is active for longer than five years.
PAGEYou know, Ellen, you were making the point that the survivor rates for different kinds of cancer vary really widely.
SIGALYeah, I think it's important because there's so much good news in terms of survivorship for breast cancer and prostate cancer and so many. But there are deadly cancers. We don't know how to cure brain cancer, pancreatic, liver cancer, ovarian. The numbers aren't so good if we get it late, certainly stomach cancer, esophageal cancer. So there are cancers that we have not made enough progress on and the statistics are pretty grim. In pancreatic if we can diagnose early, which is rare, we can do something. So I think there's a lot of good news but we have to be careful among some of the more deadly cancers.
PAGEAnd you mentioned some of the most deadly cancers. What are the cancers that they're real success stories where we've really made a lot of progress?
WEINERWell, we've made a lot of progress in the childhood cancers. We've made progress in the treatment of lymphomas, which are diseases of the blood-forming cells. We have made significant progress in the management of early stage breast cancer. In early stage prostate cancer we've made some very significant progress over the years.
WEINERBut I want to go back to that email that you just read. Certainly pancreatic cancer remains an extraordinarily challenging cancer to deal with. And I think this highlights the unbelievably critical importance of investment and research. We are not going to make progress in the battle against pancreatic cancer if we don't invest significant resources into trying to better understand what the molecular causes of that cancer are, what the risk factors are, how to better diagnose it at an early stage and how to develop more effective therapies. This is why we must do research.
PAGEIs there a direct relationship between the amount of money spent on research and the rate of survival for cancers, or does this in fact reflect the difficulty of some cancers versus others? Can you draw a cause and affect between spending money on research and the survival rates for a particular kind of cancer?
ROWLANDI think the answer to that is yes, as you've heard Dr. Weiner say, for some of the really remarkable success stories. And particularly in the arena of pediatric cancer, and I think of our earlier caller and his son with Ewing sarcoma. We've been able to manage some of these and leukemia in childhood has just been a real stellar example of money well spent and where we've really turned around the prospects for these young individuals who are diagnosed.
ROWLANDBut, as we know, we have some areas that are resistant, that they're highly lethal cancers we just haven't been able to move. Lung cancer, another good example, very common cancer, and yet we haven't been able to push the boundaries there. And without the definite additional scientific investment in that we're not likely to change that. So it is important that we move forward on that.
ROWLANDAnd I wanted to make, Susan, another comment too, because we've had so many family members call here. And one thing to realize is that when that definition -- the coalition changed that definition of a survivor from -- to say it's from the moment of diagnosis forward, under that umbrella they included family members. Because we know, and as we heard Dr. Casscells say, family is so important for survivors when they're going to get through their treatment and for their recovery. And we know that social support system really makes a difference.
ROWLANDSo family are affected by this and I think that's what we're hearing from these calls and emails, that they're touched by that. They are making the journey alongside their loved ones.
PAGEYou talked about the success in dealing with many childhood cancers. And I wonder when you talk about long term survival from cancer, certainly children would be the most dramatic example of that. What do we know about the experiences that childhood cancer survivors have as young adults?
WEINERSo at this point in time the treatments that we typically use to offer curative options to our patients are pretty toxic. They cause damage to normal cells and they cause damage to normal organs. When somebody has a disease that's not going to be effectively treated, the long term consequences don't matter much.
WEINERBut if somebody is cured and if somebody has perhaps a 70 to 80 year lifetime horizon in front of them there are long term consequences. And there can be cardiac problems. There can be thyroid problems, cognition problems because of brain damage, for example, from some types of radiation therapy that are given. There are lots of long term consequences. And the challenge we face is that our medical care system doesn't yet really have good mechanisms in place to address these long term consequences in an organized and coherent fashion.
PAGESo this is damage done to kids not from the cancer, but from trying to treat the cancer...
PAGE...and dealing with the consequences of that over a long time.
SIGALWell, I want to add, that can be true in adult cancers too but what we know about the success rate in pediatric cancers are these children are on clinical trials. They are treated in academic medical centers and I think the number is something close to 90 percent of these children are on clinical trials. And that makes a huge difference (unintelligible) ...
PAGEIt gives them better care.
SIGALIt gives them better care and it -- there is a direct link to that. So the knowledge is really important.
PAGEToday one out of every 500 young adults is a childhood cancer survivor. Three out of four of those patients will have some side effect from their cancer therapy. Let's go back to the phones. We'll talk to Jack. He's calling us from Williamston, Mich. Hi, Jack.
JACKHi, how are you?
JACKMy son-in-law is mid 40s and he and my daughter have been teaching in Norway for about four years. And he was recently diagnosed with stage four follicular cancer, which fortunately is a very treatable cancer and he's going to be doing quite well. But of course he'll require regular treatments over his lifespan. And they're kind of trapped in Norway now. Even though they like it there they can't come back to the United States because with the state of the insurance industry he won't be able to get insurance anymore. And in Norway everything has been totally taken care of (unintelligible) .
PAGENow is your son-in-law Norwegian or is he there as an American teaching or working?
JACKNo, American, American.
PAGEYes. Yeah, well, that would be quite a dilemma. Any comment from our panel?
ROWLANDI think there's no question. Again, this gets back to the issue of employment and insurance. It is the case that if you're someone with a cancer history, if you find employment in a very large corporate setting, again they can't discriminate against you for your cancer history. So it does open the door to having employment in a larger setting. If you want to go and work at a small business however, you may find that the premiums are so high that it would be difficult for you to get the kind of coverage that you want.
ROWLANDAnd certainly as we think about healthcare reform in this country and trying to say what's that going to look like and how can that benefit our cancer survivors, we've certainly heard a lot of issues raised today about how that picture could be better if we reform the delivery of care that we have now.
PAGEBut now didn't the healthcare overhaul that was signed outlaw refusing insurance to people...
PAGEYes, preexisting conditions, yes.
SIGAL...preexisting conditions are now not allowed. You are not allowed to be denied insurance if you have a preexisting condition. And I believe the enforcement of that comes in in 2012 where if you -- I'd have to double check that, but that is in the law.
CASSCELLSI think it's 2013 and he'll be able to come back from Norway. And of course if he joins a big employer then it's not going to be an issue. But if he's trying to get self employed insurance, this is a big problem. But this is one thing that the Affordable Care Act will address, people who are uninsured, people with preexisting conditions. Of course it's an expensive act. The Republican in me requires me to say that but it's certainly a step in the right direction in terms of fairness.
WEINERI just want to point out the cruel irony of this situation in that this is a disease, follicular lymphoma that typically has a natural history that can extend over a decade or even longer in some cases. And it's especially true because there are effective and reasonably nontoxic treatment alternatives available to these patients. 'Cause this is a fella who can come back to the United States working fully for many, many years and with complete confidence by his employers that he would do well. So it's a darn shame that this is happening.
PAGEI'm Susan Page and you're listening to "The Diane Rehm Show." Yes, Jack, we're very grateful for your call and we wish the best to your son-in-law. Let's talk to Beth. She's calling us from Monroe, N.C. Hi, Beth.
PAGEPlease go ahead. Beth, you're on the air. I think perhaps something has happened with Beth's phone line. I know that she was going to talk about how she is -- has stage four cancer, is living with it and has refused a treatment that she thinks would be worse than the disease. And we have a similar email from Margie who writes us from Indianapolis. She says, "My husband was a long term survivor of primary brain cancer. He developed a bone marrow disorder due to the treatment for his brain cancer. That is what ultimately killed him though his brain tumor never returned. It is important to remember that people surviving cancer are often debilitated. Surviving longer is great but the costs are still often very high." What about these long term consequences, Julia?
ROWLANDSo this is a very important point and it's the exact reason why the Office of Cancer Survivorship, the office that I have the privilege of directing was established at the National Cancer Institute, is to conduct and support, direct that research, looking at what are the persistent and late effects of surviving cancer.
ROWLANDAnd we know that very few of our therapies are benign and that many of them confer some kind of trouble for somebody after the treatment ends, which is why we're looking at these long term outcomes. Common persistent problems or fatigue, pain syndromes, memory problems, sexual dysfunction and late consequence or late occurring, obviously fear of recurrence, second malignancy recurrence. But cardiovascular disease, osteoporosis, stroke, diabetes all may attempt to aggressive treatment or comprehensive treatment for cancer.
ROWLANDSo we are looking at those long term and late effects. And it's really the survivors themselves who've been willing to talk to us and tell us and advocate for their own care that has made this happen. This is why we have attention to the long term and late consequences of cancer because the community has risen up and said, you have to tell us what the outcomes are going to be. It's not just that we have to increase the length of survival. It's the quality of that survival that's increasingly important.
ROWLANDAs Dr. Weiner said earlier, when people didn't live very long we didn't worry about the late consequences. We could do whatever treatment and not think about the alterations that that might have. But now that's no longer the case. We really have to be concerned about what are the kinds of problems that you might encounter as a function of your treatment.
PAGEDr. Casscells, you're a ten-year cancer survivor. What's your perspective on this?
CASSCELLSWell, I feel terrible when I hear about people who are afraid to enter a clinical trial or they're afraid of side effects. Or like Steve Jobs who spent so much time with nutritional therapies that he missed a curative surgical opportunity for his pancreatic cancer. So this is a tragedy.
CASSCELLSWhen I had my cancer Dr. Logothetis said, look I'm going to be frank with you. You're going to be exhausted. Your IQ's going to drop a few points because of radiation, chemotherapy and the anti-testosterone treatments. You will not perform as well at work. People are going to drift away, some of your research colleagues. Some of your patients will drift away. This is a big undertaking. Do you want to undergo it? You're going to completely lose your sex life, for example. And then he finished by saying, but I will tell you this. My 85-year-old father is going through this exact regiment. At that point I would've been humiliated to turn it down.
CASSCELLSBut I will say this. Sure, 24 hours later our sex life was gone but it improved our love life. I can't do as much. I can't play golf anymore. I can't exercise but I can help the kids with homework. I'm chairman of three small companies. I teach at a medical school. Life is good. It's just not what it used to be.
PAGEWe're glad to hear that life is good, and we've been glad to be joined by our panel. I want to close with an email from Kat. She writes us from Bellville, Ill. She says, "My husband was diagnosed with cancer in 2009. We have learned to appreciate each and every day and not worry about the things we have no control over. We love stronger, laugh when we can, enjoy the simple things in life. Living with cancer is just that, living with cancer, not dying with cancer."
PAGEWell, Kat, thanks very much for that email and thanks to our panel. Dr. Ward Casscells, Ellen Sigal, Dr. Louis Weiner, Julia Rowland, thanks for being with us this hour.
PAGEI'm Susan Page of USA Today sitting in for Diane Rehm. Diane's husband is having surgery today. We certainly send our best wishes to him. She'll be back soon. Thanks for listening.
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