A Child with Cancer, and Difficult Choices A recent study, published in The New England Journal of Medicine, reports that more than 1/3 of childhood cancer survivors can expect to have a life-threatening illness or serious chronic disease by the age of 45. A childhood cancer survivor talks about his experience and reaction to the results of this study, and doctors discuss how these future health problems can be avoided.
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A Child with Cancer, and Difficult Choices

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A Child with Cancer, and Difficult Choices

A Child with Cancer, and Difficult Choices

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This is TALK OF THE NATION. I'm Neal Conan in Washington.

By any measure, the treatment of childhood cancer is a triumph of modern medicine. With chemotherapy, radiation and surgery, almost 80 percent of children and teenagers diagnosed with the disease will survive it. But those treatments pose risks of their own, and a study published in The New England Journal of Medicine reports that childhood cancer survivors are likely to suffer from one or more chronic health problems years after their cancer treatments.

The study looked at the records of more than 10,000 people whose cancers were diagnosed between 1970 and 1986 and found that nearly three-quarters of childhood cancer survivors will suffer some kind of chronic health condition and that more than a third can expect a life-threatening illness or serious chronic disease by the age of 45. Those at highest risk are people who survived bone cancer, central nervous system tumors, or Hodgkin's Disease.

There are well over a quarter of a million Americans who survived childhood cancers, and as you might expect, the study comes as very scary news. We'll talk with one of them in a few minutes, and we'll learn more about the study, it's findings, and what can be done.

Later in the program, an annual report names St. Louis as America's most dangerous city. The mayor joins us to object.

But first, the late effects of childhood cancer treatments. If you had cancer as a child or if your child suffers from the disease, we'd like to hear from you. Give us a call: 800-989-8255, 800-989-TALK. E-mail us: talk@npr.org.

Matt Gurson(ph) is a music business executive. He was diagnosed with a stomach tumor at the age of 10. He's now 48, and he joins us now on the phone from Los Angeles. Nice to have you on the program today.

Mr. MATT GURSON (Music Business Executive): Good afternoon, Neal.

CONAN: I know you had a variety of treatments during the period that this study focuses on: a surgery, chemotherapy and radiation. That must have been awful at such a young age.

Mr. GURSON: Yes, it was. It was absolutely a - it's a traumatic and difficult time and - but the very good news, as you cited in your introduction, is that we've gone from a period of time when I was treated where about 30 percent of those diagnosed beat the disease; today that number is almost 80 percent, a triumph of modern medicine, as you said.

CONAN: Mm-hmm. After you were cured, did doctors tell you or your parents about any long-term possible problems?

Mr. GURSON: No, but I was - this was - I was treated in 1968, and I was diagnosed the day that Martin Luther King was assassinated. So in terms of pediatric cancer treatments, that was the Mesozoic Age. So I don't think the doctors were thinking about that as much as they were thinking of cure the patient, beat the disease, and obviously they did so.

CONAN: Yeah, and it must have been hats in the air, I mean a celebration.

Mr. GURSON: Exactly. I mean it was a 30 percent cure rate back then, and so as I said, it was devastating. And random and unfair as that diagnosis felt, there was only one goal: to beat the disease. And once the treatment is complete, you just got to play it where it lies. And to me the recent study reaffirms the need for cancer patients to keep a record of their treatments and to just be active and engaged and informed patients, even after they walk out of the clinic for the last time.

CONAN: I wonder, when this study was published, did it come as a surprise to you?

Mr. GURSON: Oh, yeah. I remember I was going out to meet some friends for dinner and I was watching one of the nightly newscasts, and they said that they were - they were about to run a story on this, and I sat down and waited for them to run the story and was late in meeting my friends.

And to me it was something of a wakeup call that you do have to be an active patient, and I - I mean the way I dealt with the news is that I went and found a late-effects specialist and scheduled an appointment to go see her and walked through the treatments that I received, to the extent I still know them, and see if there's anything special that I should be on the lookout for.

That's another message to me of this study, is that when you walk out of the clinic after you've had your last treatment as a patient, you need to walk out with a packet of information that says these are the medicines that I had and these are the radiation protocols that I had. And throughout the rest of your life, you're going to have to go see somebody who specializes in what to look for, because in almost every illness, early detection is always best. And if you're on the lookout for some of these late effects or collateral damages from the cancer treatments, you're going to be in that much better position to deal with it.

CONAN: Now, you said you'd scheduled an appointment. Do you suffer any after-effects?

Mr. GURSON: Sure. I think everybody who goes through this has some kind of aches and pains and bumps and bruises that they deal with, you know. Chemotherapy is a poison that they put into your body in measured doses, and radiation causes a lot of damage. And at the time when I was treated, the field of radiation was not as precise and perfect as it is today. Today they put that radiation exactly where they want to.

But the radiation and other treatments definitely cause damage, and now, you know, again, the message to me - to patients - is that when you walk out of a clinic, know exactly what they did for you, and find the late-effects specialist in your area and go see them every year or whatever is necessary, so that they're looking out for some kind of problem that may arise.

And some of the problems that were articulated in that very scary news - I think is what you called the study that was recently released - it was scary indeed. But that just means be an active patient.

CONAN: Let's get a caller on the line: 800-989-8255 if you'd like to join us. Or e-mail us: talk@npr.org. This is Russell, Russell calling us from here in Washington, D.C.

RUSSELL (Caller): Good afternoon. How are you today?

CONAN: Very well, thanks.

RUSSELL: Outstanding. Pleased to have a chance to chat with you. I'd like to congratulate the caller before me for having survived. It is an interesting thing. I, too, am a survivor, but actually predate him by almost a decade. I was diagnosed with terminal cancer at age three, treated with - well, let's just say the treatment regimen was pretty vigorous.

CONAN: Hmm. I can hear that's a bit of an understatement.

RUSSELL: Yeah, well, you know, as a - with the diagnosis of terminal cancer, they pretty much pull out all the stops, and so I was subjected to massive amounts of radiation. I had surgery to remove kidney, spleen, and anything else that wasn't red hot or bolted down; and was also a guinea pig for the first chemotherapy agents that had been developed.

And the study that had come out and the recent article in the Washington Post was quite correct in that the treatment for childhood cancers are most unpleasant. It's a serious illness. I'm sure you'll chat later today with some serious people that are doing everything they can to treat the disease. But I would agree with the previous caller: first and foremost, the decision is to cure the people that have it.

And I think what the study did not convey, you know, well - as well as perhaps the recent newspaper articles about it - is although the serious treatments are accompanied at times by serious consequences, the thing is, it's important to live long enough to have the consequences manifest themselves. You know, for a parent who is facing a situation like this, it basically boils down to choosing to make decisions that result in your children living with the side effects or essentially choosing for them to die. It's a scary thing. But being afraid isn't a sin, but being ignorant is.

CONAN: Matt Gurson, I assume you would agree with that.

Mr. GURSON: Oh, absolutely. And you know, as I said, the key is to, A) beat the disease, and then be an informed patient. The great news is today the number you cited is almost 80 percent of pediatric cancer patients that are diagnosed in the United States, they are going to beat the disease. The doctors and researchers are obviously getting better and better at treating and beating cancer. And maybe tomorrow we'll be - we'll get better at limiting the collateral damage caused by the treatments.

CONAN: Russell, congratulations. Thanks for the call.

RUSSELL: Thank you, sir, and good day to you.

CONAN: Good day. And Matt Gurson, I know you have to run. We appreciate your time today.

Mr. GURSON: Thank you very much. I enjoyed being on.

CONAN: Matt Gurson, a survivor of childhood cancer, now a music business executive, and he joined us on the phone from Los Angeles.

There are some 270,000 survivors of childhood cancer in the United States. The need to understand how cancer treatments can affect patients in later life has become increasingly important. To talk about this and The New England Journal of Medicine's findings I'm join by Philip Rosoff. He's an associate professor of pediatrics at the Division of Hematology Oncology at Duke University's Medical Center and the director of the Young Cancer Survivors Program. His commentary on the results of this study was also featured in The New England Journal of Medicine. He's with us today from studios at Duke University in North Carolina. Nice to have you with us.

Professor PHILIP ROSOFF (Duke University Medical Center): Thank you very much. Nice to be here.

CONAN: And I think both our caller and Matt Gurson made an important point. It's nice to be able to suffer the side effects decades after treatment, after you had a diagnosis of terminal cancer.

Prof. ROSOFF: Yes. I think that the point made by the second caller, Russell, was very germane and an important one. This is not to diminish or to demean the importance and the relevance of the long-term side effects, often permanent side effects, of cancer treatment. But we always keep our eyes on the prize, and the prize is the cure of the cancer, which is, as I'm quite sure everybody knows, particularly in children, is not a chronic disease. It is an acute life-threatening disease, and we spend an enormous amount of energy attempting to reach that cure.

CONAN: And I guess the other point is that as these - techniques must have improved since the days that Russell was talking about, and even Matt Gurson.

Prof. ROSOFF: Yes, they have. The - obviously the goal is still the same, but I think that we've had a very laudable motive for the last 25 or 30 years as we in pediatric oncology have noticed, perhaps sooner than other folks in the fields of oncology, that patients are surviving, patients are being cured of their cancer, and that we are seeing these long-term side effects.

And while not losing sight of the important goal of curing 100 percent of children with cancer, we have begun to fine tune some of our treatments and hone them to the point where we can begin to consider some of these long-term side effects and see if we can change around some of the medicines, change around some of the treatments so that we can use some of that knowledge in formulating treatment plans to try and minimize the long-term side effects, minimize the risks of them, at the same time without sacrificing any chance of cure.

CONAN: And were doctors, do you think, surprised by these - the findings of the study?

Prof. ROSOFF: Well, I suppose it depends upon which doctors you're talking about.

CONAN: Which doctors, yeah.

Prof. ROSOFF: If you're talking about myself and my colleagues - pediatric oncologists throughout the United States, Europe, Canada - no, this is not surprising at all. I think to a certain extent perhaps some of our colleagues might have been surprised by the magnitude of the long-term side effects, by the number of patients who were actually affected by this.

Clearly those of us who take care of long-term survivors for a living were not surprised by this, but it was, I think, important to document this in such a prominent way, and I think Kevin Oeffinger and his colleagues at the Childhood Cancer Survivor Study are to be congratulated for the - not only for keeping at this and updating this data periodically, but clearly with the - because of the clarity with which they presented this information. I think...

CONAN: Well, we have to take a short break, so stay with us.

Prof. ROSOFF: Okay.

CONAN: And I'm sure we want to get some calls in from some worried parents and some worried patients as well. Give us a call: 800-989-8255, 800-989-TALK. E-mail us: talk@npr.org. I'm Neal Conan. We'll be back after the break. It's the TALK OF THE NATION from NPR News.

(Soundbite of music)

CONAN: This is TALK OF THE NATION. I'm Neal Conan, in Washington.

We're talking about a report that shows that survivors of childhood cancer are more likely in many cases to suffer serious health problems later in life. Still with us is Philip Rosoff, associate professor of pediatrics and oncology at the Duke University Medical Center and director of the Young Cancer Survivors Program.

Of course we hope that you'll join the conversation. If you had cancer as a child, if your child suffers from the disease, give us a call: 800-989-8255, 800-989-TALK. E-mail is talk@npr.org. And let's introduce Aziza Shad, chief of the Pediatric, Hematology, Oncology Division at Georgetown University Hospital who runs their cancer survivorship program. She's with us here in Studio 3A. Good of you to join us today.

Dr. AZIZA SHAD (Georgetown University Hospital): Hello, Neal. Thank you for inviting me.

CONAN: And we hear earlier from one patient, Matt Gurson, who said he didn't really receive any advice or information about the effects of cancer treatment when he was a child, nor did his parents.

Dr. SHAD: That's right.

CONAN: Do you hear this a lot from patients?

Dr. SHAD: You used to hear it a lot. You don't hear it as often anymore. You know, every now and then our cancer survivorship program, we get patients who come from outside Georgetown who've not been given a treatment summary, who've not really had a face-to-face meeting with their physician after they finish treatment to describe what they need to look for, what kind of follow-up they need. So yes, you do hear it every now and then.

CONAN: And when people - well, you work with cancer survivors daily, and they're obviously concerned about this study. And clearly, as we were hearing from Philip Rosoff earlier, this doesn't come as a surprise to a lot of people. What do you tell people?

Dr. SHAD: Well, it doesn't come as a surprise to us who take care of the cancer survivors because bits and pieces of this study have been published over the last few years. It does come as a surprise to people who weren't expecting the magnitude of the late effects, you know. A large number of patients will have some kind of chronic ailment

So you know, we've had mixed reactions. I've had calls from parents who've been very distraught, especially after the ABC piece aired, because to them it was a very negative connotation of what their children were going to experience later on in life. I've had calls from survivors who've said, what's the point of getting treated? And I really need to go back to the comments of Mr. Jefferies(ph) and Matt Gurson.

You know, you're always balancing cure versus the after-cure, and if you can - you continue to treat children, we try and modify our treatments accordingly now so that we are very aware of the late effects and we can take care of them. And at the same time, you provide them with guidance, with treatment, and with education. Education you can't underemphasize. You know, they can have productive lives.

CONAN: Philip Rosoff - we're going to get to callers, and they're a lot of good questions on the lines...

Dr. SHAD: Mm-hmm.

CONAN: ...but I did want to ask you before we go to the phones if more than a third of cancer survivors can expect to have a life-threatening illness or a serious chronic disease by the age of 45, what kinds of problems are we talking about?

Prof. ROSOFF: They run the gamut. They can run - they can be problems associated with a second malignancy - a second type of cancer that's induced by the treatment - chronic cardiac problems such as congestive heart failure or cardiac failure, kidney failure, chronic lung problems. It really is a very, very wide range of problems.

If I can just echo something that Dr. Shad just mentioned, that I think that the - that what I hoped that the piece that I wrote would generate - would be a call for education. But not only just education for our patients and their families, for how they can take care of themselves better in the future - and I think that was echoed by one of your callers - but also education for the wider group of primary care physicians who by and large are taking care of these patients out in the community.

CONAN: Let's get some callers on the line, and we'll begin with Peter, Peter calling us from Rochester, New York.

PETER (Caller): Yes, thank you. Seven years listening, first time caller.

CONAN: Well, thanks.

PETER: Uh-huh. I have a son diagnosed seven years ago with ALL, and obviously at that time I was grateful he got it at that time compared to 20 years ago, but...

CONAN: ALL is a form of leukemia?

PETER: Yes. Sorry, leukemia. Five-year treatment and, you know, we still have six months of follow-up, but the focus was obviously beat the cancer. We were warned of developmental concerns as he grew up, and now he's 10, and we're seeing some of those minor side effects, but - so this is kind of new. What do I do with him now, age of 10, to help him prepare for later on? Do we collect those records? We keep files? What are we supposed to do to help him prepare for this potential likelihood?

CONAN: Aziza Shad, I see you nodding your head.

Dr. SHAD: Oh, yes. Thank you for your call. That's an extremely important question. I think you need to go back to your oncologist. First of all, get a treatment summary of the treatment that your son received, so you know exactly what kind of chemotherapy. Get the agents he received. Did he get any radiation? If he got radiation to the head, how much radiation did he receive? What are the long-term possible side effects that he could have? The most important thing is that you get clear-cut, regular follow-up for your son.

PETER: And that's just with the primary care, or do we continue to meet with a specialist?

Dr. SHAD: I think you still need to meet with a specialist. I think there are various different models now of long-term follow-up clinics, and the ones that are most commonly followed today, at least for the younger children, are coming to me for the pediatric oncologist. Not on a day when patients are getting chemotherapy but at a specified time when you can come and spend time with them and go over all the side effects. Get your echo cardiograms regularly. You're told how to - what to eat, what to watch out for, how much calcium in the diet you should take, so on and so forth.

CONAN: Let me ask you, though, Philip Rosoff, as the experiences of having cancer treatments, particularly as a young person, can be, well, a little terrifying, and a lot of people don't want to go back to the hospital.

Prof. ROSOFF: Oh, I think that's true, and I think that's one of the major barriers to getting effective healthcare for these children, and then adults as they age after the cancer experience.

I recall - if I can tell a short story - I recall a young man that we saw in our long-term follow-up clinic a few years ago who had been off treatment for the same disease as Peter's son is now off treatment for. He'd been cured from his acute lymphoblastic leukemia, and he was now about 17 or 18. He hadn't been to our long-term follow-up clinic in a number of years, and he read about something that we had written or some publicity, and he came in for his checkup. And the minute that he saw the clinic and the minute he saw one of the IV pump machines, he had an anxiety attack, and it reminded him of all the experiences that he had before. And unfortunately, he's never come back again.

And I think it's all too often that two things happen. One is that we tell patients that they're cured, and patients and their families all to often take that as meaning that there's nothing wrong with them and that nothing will be wrong with them; they're finished with their cancer. The other is that we're not very good, I think, at something that Dr. Shad mentioned, that in giving out information, not only to patients but also to their primary care providers who can help reinforce this idea of life-long vigilance.

CONAN: Peter, please wish your son the best of luck.

PETER: Great, thank you.

CONAN: Bye-bye. Now let's turn now to Jeannie. Jeannie's calling us from Northern California.

JEANNIE (Caller): Hi.


JEANNIE: Thank you so much for this broadcast. I literally cancelled an appointment when I heard what you were doing today and rushed home to listen to it.

My daughter is a survivor of a neuroblastoma. She was diagnosed when she was two, a year and a half of treatment. She's 16 now, and she's beautiful. And she's been suffering for quite some time from a plethora of reasonably nonspecific ailments which two years culminated in the removal her fallopian tubes and her ovaries, and other things continue to present in the abdominal area, which is where her cancer was and all the scar tissue remains.

What comes up for me, as well as everything that's being said is so relevant to me, are the psychological difficulties that accompany the recurring physical ailments, the return to clinics. I have not dealt with clinicians who are receptive and responsive to long-term ailments that are related to the recovery, and I've reached out into other realms - New Age practitioners, psychology - various places we have gone as a family to support this vibrant, beautiful, athletic girl who continues to fight against her body.

And what's out there for families in the psychology realm - because I feel that that component is critical for young adults to make proper decisions about how they're going to move forward in their adult life with these liabilities, if you will, physical as well as psychological liabilities.

CONAN: Aziza Shad?

Dr. SHAD: First of all, let me just let you know that most of the late-effects programs, the long-term follow-up programs that are well developed in the United States today, should have the services of a psychologist available for their patients. We've been fortunate that we do have not one, but two. We have a neuropsychologist and a psychologist who deals only with young adults who actually have had cancer or have cancer.

CONAN: With respect, that's at Georgetown University Medical Center...

Dr. SHAD: That's right.

CONAN: ...a great university. How common are these places?

Dr. SHAD: Very few, unfortunately...

JEANNIE: (unintelligible)

Dr. SHAD: ...and I agree.

(Soundbite of laughter)

Dr. SHAD: No, and I agree with you that, you know, what we don't pay attention to as much as we should is the psychological effects, the posttraumatic stress syndrome, the aches and pains that actually deter a person from leading a normal, healthy, productive life.


Dr. SHAD: So what's available out there? There are numerous Web sites, and I think one of the other people who's going to be participating in this program, who runs a cancer advocacy program, can actually give you a list. If you go to curesearch, which is the Web site for the Children's Oncology Group...

JEANNIE: Could you repeat that site again?

Dr. SHAD: Curesearch.

CONAN: Cure search. And we'll get a listing and posting on this on our Web site so you can just a couple of hours from now go to the TALK OF THE NATION page at npr.org.

Dr. SHAD: If you go to the CureSearch Web site you can actually see a whole host of different links and Web pages that you should be able to read her.

JEANIE: That's beautiful. Thank you so much.

Dr. SHAD: You're welcome.

CONAN: Thank you and good luck Jeanie.

JEANIE: Thank you.

CONAN: Bye-bye. And let's see if we can get another caller on the line. This is Lisa or Lissa. I'm not sure how it's pronounced.

LISSA (CALLER): Oh, it's Lissa.

CONAN: Lissa in Jackson, Michigan. Go ahead, please.

LISSA: Yeah. Hi. My son was diagnosed - actually, at nine weeks of age - with AML(ph) leukemia. And we're excited that he's going to be six years cancer-free this December. But I was just going to comment that we had such great doctors at University of Michigan at Mott Children's Hospital there. They did tell us -they advised us of all types of long-term side effects.

In fact, before we even started treatment they - he went through and said here's the drug that he's going to be getting. These are the possible side effects. These are the long-term possible side effects. This is, you know, the second drug that he'll be administered, here's the side effects, here's the possible long-term side effects. So they just did a fantastic job of that.

But also, one of the side effects that hasn't really been addressed - the chronic illnesses have been - but there's also, we're finding developmental side effects. And I'm not sure if maybe that's because our son was diagnosed at such a young age - nine weeks, it turned out he was actually born with it - or if that's something that other kids are seeing as well, the developmental side effects.

CONAN: Why don't we get a response from Philip Rosoff?

Dr. ROSOFF: I think that we are become - we've known for sometime now, but we're becoming increasingly aware that treatment of cancer in children -particularly young children - is completely different from treatment of older children, teenagers, or adults, particularly in the area of development, particularly in the area of neuropsychological development.

I think one of the reasons why Dr. Shad has two psychologists and we have one and a half psychologists associated with our program is because of these issues. Not just the psychological, such as post-traumatic stress syndrome -Treatment with high-dose chemotherapy and especially radiation therapy to the very young can have lifelong and fairly severe side effects in terms of neurocognitive development.

And I think being aware of this and being constantly on the lookout for these types of things - testing for these types of things, and particularly, knowledge of them with early intervention - can truly make a major positive impact as these children grow up.

LISSA: Thank you. And we're finding that - we have actually attend - we've gone and seen the neurological psychologist at U of M. But it's interesting because, you know, we had to be our son's advocate at such a young age because he didn't have a voice, and now we're finding ourselves being his advocate in the school system.

And it's very interesting. But at the same time we had - we have had such a great experience with our doctors and the long-term follow-up clinic at U of M who have just - it's been a fantastic experience for us. We feel like we're still part of a team. That we have all - the team is still working together trying to map out the best life possible for our six-year-old.

CONAN: Lissa…

Dr. ROSOFF: I think that's a - oh - I just want to say one thing. I think that something that Lissa just said was truly critical. That having that ongoing relationship - particularly as your son gets older, into his teen years -having that collaborative type of arrangement with people who know what his issues are and can help with him - help him directly but as well as intercede with other professionals to get him the resources that he needs as he grows up - I think is critical.

Sending him out into the community, even with well-meaning and well-wishing general pediatricians or general family doctors, may not be the types of resources and the types of help that he needs to give him all of the help and the resources that he needs to do the best he can with what he's got.

CONAN: Lissa thanks very much and good luck to you.

LISSA: Thank you.

CONAN: Bye-bye.

LISSA: Bye-bye.

CONAN: We're talking about long-term effects of childhood cancers. And you're listening to TALK OF THE NATION from NPR News.

And Aziza Shad you wanted to ask something?

Dr. SHAD: No, no. I was just right along the same lines. You know we when were talking about school. When we talk about education and then we talk about education of survivors and we talk about education of general practitioners and the family practitioners and the pediatricians - I think one group that we must not forget is also education of the teachers in schools.

CONAN: Ok. Let's get one last caller in on this segment of the program. John with us. John calling from New York.

JOHN (CALLER): Hi. My daughter had Wilms' tumor at three-and-a-half years old. She's sixteen now and is doing fabulous. We actually have an appointment on Friday with her doctor and we're what's called a KNOT program, which is Kids Not on Therapy.

CONAN: And was that scheduled already or was it prompted by the study?

JOHN: It was (unintelligible) when she was three years old. They told us every year you're coming back, you're going to have a specialist who's working with you and we're going to discuss all the issues, you know, as she goes through her life.

CONAN: Mm. And that suggests, Aziza Shad, that follow-up is becoming part of the routine.

Dr. SHAD: Follow-up is becoming part of the routine and should stay part of the routine. Actually, on the day of diagnosis - from the day of diagnosis, through the treatment, we continue to educate the survivors or the patients at that time - and their families - on the side effects of treatment and what to anticipate when treatment is done and what kind of follow-up they need.

When they're done, we have a family meeting with them. We bring the parents in, we bring the other caregivers in, we invite the pediatricians or the internists and we have the survivor there themselves. And we talk to them, we give them a treatment summary, which indicates when they were diagnosed, what treatment they got, what are the anticipated long effects, what is the follow-up, including echocardiograms, (unintelligible) function tests.

And then we give them a schedule of follow-up. In addition to that, at our institution, we also have seminars for them. We bring them and we do studies and we teach them how to take care of their health. I think that's the piece that we need to focus on - how to use sunscreen, how not to drink in excess, how to avoid smoking. How to not become obese, because that's another factor that's going to…

CONAN: Good advice for all of us, but especially important for cancer survivors.

Dr. SHAD: Particularly for them. And we've developed a CD-Rom that actually helps them through that.

CONAN: Ok and we can - John, your daughter, does she worry?

JOHN: Well, she does a little bit. Mostly, this has kind of pushed her into a medical field. She wants to become a doctor.

Dr. SHAD: Great.

CONAN: Wish her good luck with that.

JOHN: Thank you.

CONAN: And wish you good luck with the bills.

JOHN: Thank you.

CONAN: Thanks very much for the call. And we'd like to thank our guests. As we suggested we're going to be continuing this conversation after a short break with someone else. But Philip Rosoff, we wanted to thank you very much for your time today.

Dr. ROSOFF: Thank you very much.

CONAN: Philip Rosoff is an associate professor of pediatrics oncology at the Duke University Medical Center, director of the young cancer survivors program with us today from a studio at Duke University in North Carolina.

Aziza Shad thank you very much.

Dr. SHAD: Aziza Shad chief of the pediatric hematology oncology division at Georgetown University Hospital where she runs their cancer survivorship program. She was with us here in Studio 3A.

When we come back from a short break we're going to continue this conversation and also talk with the mayor of St. Louis, Missouri - named today as America's Most Dangerous City. I'm Neal Conan. It's the TALK OF THE NATION from NPR News.

(Soundbite of music)

CONAN: In a few minutes, the mayor of St. Louis objects to his city being declared the most dangerous city in the country. But first, getting survivors of childhood cancer the follow-up treatment they need. The largest regional conference for childhood cancer survivors was held here in Washington, D.C. two weekends ago. It was organized by the Children's Cause for Cancer Advocacy, An organization that works to address the needs and concerns of survivors. Craig Lustig is executive director of that organization. He's been kind enough to join us here in Studio 3A. Thanks very much for coming in.

Mr. CRAIG LUSTIG (Executive director, Children's Cause for Cancer Advocacy): Thank you for inviting me.

CONAN: And what is being done right now to assist cancer - I mean, the results of this study must be petrifying to a lot of people.

Mr. LUSTIG: Well, indeed they are, but I think we have an opportunity, if you will - two opportunities. One is through activities - and we've heard from a couple of the other speakers and many callers that there's an opportunity to educate and prepare survivors and families through education - and so that was really the goal of our conference.

And we launched it about a year and a half ago and it includes education around late effects and late effects risks. Resources - there are now guidelines published a little over a year ago, which are very, very useful for survivors and families, where they can look for the type of disease that they had, as well as the various modalities - the chemotherapies drugs, let's say - that they were treated with and understand what their risks are for different late effects and use that to then determine the kind of screening and follow-up care they might need.

CONAN: And where might people go to find some of these tools?

Mr. LUSTIG: There are really a couple of different places? One is the Web site of my organization , the Children's Cause for Cancer Advocacy. And our Web site is childrenscause.org.

CONAN: And again, we'll post that on our Web site later today at TALK OF THE NATION. Go ahead.

Mr. LUSTIG: And also CureSearch, which Dr. Shad mentioned earlier as a resource for those guidelines.

The other part of the conference - or components of the conference - were very important because there was a comment earlier about the fear that may cause survivors - especially those that are young adults to, if anything, flee from going back for their follow-up.

And I think our model looks to engage them through a variety of other topics that they're very interested in. Things like health insurance, employment issues, reintegration with education, fertility, and - as was mentioned by the 16-year-old that's considering medical school - many of these survivors are interested in becoming active in advocating on behalf of, not only themselves, but the broader community.

CONAN: Let's see if we can get a caller on the line. And this is Gail(ph). Gail's calling us from California.

GAIL (CALLER): Hello. I was calling to find out what are the issues associated with survivors of children's cancer - getting insurance, health insurance, how to pay for these expenses.

CONAN: Pre-existing condition that somehow popped into my head.

Mr. LUSTIG: Absolutely, and it's a real challenge and something that we tried to address at our conference because it is such a complicated situation. The, if you will, sort of the broad brush is that for many survivors if they go to college and they are full-time students and if their parents have health insurance they are typically covered under their parents policies until about the age of 23.

This all varies state by state. The key again is being a full-time student and that your parents need coverage. What we've seen is a movement in some states to actually expand the age that a child is defined as being a dependent, so that those policies that a family may have will extend and cover that young adult child to an older age. So, for instance, in New Jersey they now have a mandate - or a definition of the dependent child up to age 30.

CONAN: Mm-hmm. But some of the treatments - the follow on treatment that Dr. Shad was saying was so important, and Dr. Rosoff as well, these are not cheap.

Mr. LUSTIG: Absolutely. And often the challenge is that sometimes the insurers are not willing to cover follow-up treatments, diagnostics tests, those kinds of things. And so there are a variety of other strategies, if you will. There is a site through the Georgetown Health Policy Institute that I believe is healthinsuranceinfo.net. And what they have done - again, because this is a state-by-state issue - is to provide sort of primers, documents, for each state that help the reader to understand what the opportunities are for coverage.

CONAN: In a particular state.

Mr. LUSTIG: Exactly.

CONAN: Yeah. And again, we'll get a link to that on our Web page as well. Gail, thanks very much for the call.

GAIL: Thank you.

CONAN: Bye bye. Let's talk now with Cole. And Cole is with us from Buffalo, New York.

COLE (Caller): I just had a question regarding the amount of money that the FDA is allotted a year according to the general or governor's accountability office, saying that they only get one million a year to do follow-up studies when follow-up study average like cost around $3 million a year for a follow-up study. I just - I was wondering, your comments on that…

CONAN: We're basically talking about federal government spending on follow-up studies on this question, Cole?

COLE: Yes.

CONAN: Okay. Let's ask Mr. Lustig.

Mr. LUSTIG: Well, certainly I can't quote you the specific numbers, but I would say that globally we know that right now federal spending at the NIH and particularly at the National Cancer Institute, where many of the follow-up studies in childhood cancer are funded, is under a great deal of pressure.

And so something that - another part of what my organization does is to work in partnership with other patient advocacy groups to do advocacy around things like getting research - more dollars pumped into survivorship research.

CONAN: Cole, thanks for the call.

COLE: Thank you.

CONAN: And let's - we have time for one more call on this. I think this is Hank, Hank calling from Grand Rapids.

HANK (Caller): Oh my goodness. I thought with what my comments were you wouldn't get me on the air. I like your programs, but I never hear anything from natural medicine. You still with me?

CONAN: I'm with you. You're on the air. Go ahead.

HANK: I mean I hear about radiation, chemotherapy, and I don't even know if they even try out different kinds of chemo on people, I mean if they take their blood and find out what really works.

But those are not really solving the problem. You know, you talk about cancer. Cancer is what - it's coated with a foreign protein. Proteolytic enzymes go in and strip foreign protein out of your body. So that opens up the cancer cell to your immune system to devour it. But I don't hear anybody talking about that stuff. I ask surgeons, you know, do you use proteolytic enzymes before and after surgery because it'll eat up scar tissue? Never heard of it. Well, guess what? All they could do is do operation again when the scar tissue comes back and the area they had surgery on is scarred up and they…

CONAN: See if we can get a response from Craig Lustig. Go ahead.

Mr. LUSTIG: Sure. And I'm not a researcher, so I'm not sure I can answer it in quite that level of detail. But I can talk about what I think is part of the comprehensive model of how we treat children with cancer. And that includes thinking about things like nutrition and the well being, the psychosocial issues that we heard about earlier in making sure that the patient and the family are doing well.

So I think - again, I can't answer the specific question…

HANK: How does that heal the patient?

CONAN: Pardon?

HANK: How does that heal the patient?

CONAN: Well, presumably better nutrition is good for everybody, isn't it?

HANK: Yeah. Do you tell them to keep off soft drinks because of their acidity, which cancer loves to grow in that condition?

CONAN: Hank, thanks very much for the call. We appreciate it. Okay. Bye bye.

And Craig Lustig, thank you for joining us today. We thank you for coming in to join us here in Studio 3A.

Mr. LUSTIG: Thank you.

CONAN: Craig Lustig is executive director of the Children's Cause for Cancer Advocacy. And again, we'll have those links that Craig and other guests on the program mentioned up on our Web site in a couple of hours time at Talk of the Nation page at npr.org.

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