Synopsis: Doctors can cure cancer in children better than ever, but decades later, many survivors suffer from serious, chronic disease as a result of powerful cancer treatments. Often those survivors don’t get screening and treatment for late effects. Experts and survivors discuss how treatments influence life decades later, how survivors can get treatment they need, and new ways of treatment can lessen late effects.
Host: Reed Pence. Guests: Matthew Zachary, cancer survivor, founder & CEO, Stupid Cancer; Dr. Lisa Diller, Chief Medical Officer, Dana Farber Boston Children’s Cancer and Blood Disorder Center and Professor of Pediatrics, Harvard Medical School; Dr. Les Robison, Chair of Epidemiology and Cancer Control, St. Jude Children’s Research Hospital and Associate Director, St. Jude Comprehensive Cancer Center; Keenan Green, cancer survivor
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The Late Effects of Childhood Cancer
Reed Pence: From the age of 11, Matthew Zachary knew he was going to be a concert pianist. In fact, that’s him at the keyboard. But those plans were derailed between his junior and senior years of college, when his left hand started tingling. Before long he was having trouble at the keyboard. By the end of the year he couldn’t even write his name. Zachary was diagnosed with a cancerous brain tumor, caught just in time. But 19 years later, he still feels its effects.
Matthew Zachary: Cancer is the gift that keeps on giving for way too many people, and not enough people understand that, are sensitive to it and respect it. Just because I survived, didn’t mean I was cured, and the ensuing life after that diagnosis and surgery and radiation was very, very different than anything I’d ever expected.
Reed Pence: Zachary had neurosurgery and radiation, which produced severe temporary effects such as skin burns, massive weight loss, body-wide inflammation, and a loss of his ability to walk. But he says it wasn’t until a few years later that his problems really began.
Matthew Zachary: Those include dry mouth, esophagitis, bipolar, I have hyperthyroidism, so I’m on thyroid medications, I have a chronic hormone imbalance and I’m infertile. I get sick pretty often, I have a good immune system, but it’s still not quite where I’d like it to be. I do have fatigue. I am predisposed to some heart damage, which I thankfully don’t have, and I go to the doctor very vigilantly once a year for a little maintenance tune up. And I’m at risk for another cancer in my life.
Reed Pence: Zachary’s not complaining. He says he’s happy to manage his conditions since it beats the alternative. Today he’s 40, and the founder and CEO of Stupid Cancer, an organization serving the needs of young adults who’ve had cancer. And there are plenty of them out there. Experts say nearly a half million people are alive today who were treated for cancer as children or adolescents. And many of them know the book isn’t closed when the doctor says, “you’re cured.”
Lisa Diller: Oh, no, the story is far from over. The therapies that we use in children in order to cure them, especially very young children, can have a significant impact upon their health during childhood, adolescence and adulthood. Both because they were children when they were treated and therefore they have a lot of development and growth that has to happen that the chemotherapy or radiation therapy can impact upon, and because the diseases that we see in long-term survivors of childhood cancer are diseases of great concern that require screening and sometimes intervention to prevent them.
Reed Pence: That’s Dr. Lisa Diller, Chief Medical Officer at the Dana Farber Boston Children’s Cancer and Blood Disorder Center and Professor of Pediatrics at the Harvard Medical School.
Lisa Diller: The middle-aged adults that we are caring for now, who were treated for childhood cancer, as many as two thirds of them have at least one significant chronic condition. And many of them have multiple chronic conditions.
Les Robison: Unfortunately the longer we follow survivors the greater we start to appreciate the magnitude of the impact and of the occurrence of what we refer to as chronic health conditions.
Reed Pence: Dr. Les Robison is Chair of Epidemiology and Cancer Control at St. Jude Children’s Research Hospital and Associate Director of the St. Jude Comprehensive Cancer Center. He says decades ago, doctors maximized the chances of survival by hitting cancer as hard as they could.
Les Robison: By the age of about 45 to 50 years of age, almost 95% of childhood cancer survivors will have at least one chronic health condition. For instance, if we’re talking about risks of cardiac dysfunction that might result from the treatment those can be very serious, very severe, life-threatening and even fatal. We have other types of outcomes on the other end of the spectrum that might be less life-threatening, such as infertility resulting from cancer therapy, but yet can have a very significant impact in terms of quality of life.
Reed Pence: Damage to the heart is exactly what happened to 40-year old Keenan Green of Dallas. As a 12-year old, he was treated for Hodgkin’s lymphoma. He started having late effects of his cancer treatment about 20 years later.
Keenan Green: I was very active in basketball, and I played in a company league. And we were going out for our next season, and I worked out three to four times a day like I was fine. But it was just that season that I could not get up and down the basketball court. So, it just so happened I had a physical later on that month and they found out my heart was enlarged.
Reed Pence: Nine years later, Green is on his second pacemaker and his heart output has declined to only about 15 percent of normal. Radiation for cancer treatment can do that, and chemotherapy can, too.
Les Robison: The treatment is extremely effective. Right now over 95% of children with Hodgkin’s lymphoma will be cured of their cancer and be long-term survivors. But to achieve that cure in the past a considerable amount of treatment, in terms of radiation and exposure to given drugs are involved. One of the drugs that has been very effective is the class of drugs called anthracyclines, and anthracyclines are known to be cardio toxic. They can cause acute cardiac effects sometimes during the treatment for cancer, but more importantly they are associated with very long-term risk.
Reed Pence: Patients like Green also have a higher risk for secondary cancer as a result of radiation treatment. It’s very common in people who were treated for Hodgkin’s lymphoma as children.
Lisa Diller: For example, when adolescent girls were treated in the 70’s and 80’s, the standard of care was to receive radiation therapy to the site of the tumor itself, which most commonly was where the heart sits in the middle of your chest, and where there are lymph nodes that can develop Hodgkin’s disease. Well, what we didn’t realize then that we realize now is that the risk of breast cancer in those young girls, who were treated then, the risk for them to develop breast cancer later in life is extremely high.
Les Robison: In fact, their risk of developing breast cancer is comparable, potentially even higher, than women who have a BRCA1 mutation. But if they know that they received chest radiation, the recommendations are that they initiate breast screening at a much earlier age, so that you can detect those breast tumors at a much earlier progression. They’re more easily treated, and hopefully, you know, will not result in any really serious long-term morbidity or mortality.
Reed Pence: The important thing is that patients know they have a risk for breast cancer, heart failure, or other disorders as a result of their childhood cancer treatment, and that their doctor knows it as well. Then the patient can be screened from an early age and even given medications to stop the progression of some diseases. But often that doesn’t happen. Survivors may have no clue what kind of treatment they received as an infant, for example, and have no idea what their risks are as a result.
Lisa Diller: So, a 30-year-old who received treatment for a childhood cancer at age 18 months may not really know a whole lot about their childhood cancer, may not self-identify as a childhood cancer survivor, and his or her parents may no longer be around in order to encourage them to get the right kind of care. As a doctor who takes care of childhood cancer survivors, I’ve been struck by how major events in an adult’s life tend to bring them forward to receive the kind of care you’re talking about. Very often a fiancé will bring in a future husband and say, “Now tell me what he had and tell me what kind of care he needs?” Because the person themselves may not be too aware or have a lot of information
Reed Pence: Most primary care doctors also have extremely limited experience with childhood cancer survivors. They may have only one or two in their entire practice, so they often don’t think about it much, or know what to look for. Zachary says the patient may end up being treated just like anyone else.
Matthew Zachary: There’s a massive elephant in the room in primary care, where they’re not trained to truly look beyond the little sheet you fill out in your triage chart’s about your health history. They can ask you, “Oh cancer, what was that? I had it 20 years ago. Oh, well how are you feeling?” There’s a shared responsibility for patients to know what happened to them as well as doctors to understand what that means, but when you’re diagnosed as a child or a teenager and you’re 20 years out it’s hard to remember what happened to you back then. It’s different when you’re diagnosed in your 50s, 60s, and 70s because that’s right then and there. So, specifically unique to pediatrics, teenagers, adolescents, and young adults is this massive disparity of remembering what their treatments were and articulating that to their primary care physician, and having primary care physicians be able to filter that to treat you individually.
Reed Pence: A survey by St. Jude Children’s Research Hospital finds that less than a third of adult survivors are getting care that focuses on their childhood cancer. That’s why a few major cancer centers around the country have established clinics designed for lifelong follow up for these patients. But many survivors don’t live near one. Diller and Robison say they need to shoulder the responsibility for their own care.
Les Robison: That’s really one of the challenges that we face is really to be able to educate healthcare providers, and we’ve actually found now that the best way to approach this, that we think is going to be most effective, is really to educate the survivors themselves–educate them to be their own advocate and to be knowledgeable advocates in terms of knowing what their history was, what their treatment was, and knowing what their healthcare needs are going forward, so that they can inform their healthcare providers.
Lisa Diller: The way we tried to address that is by empowering patients and making sure that they have treatment summaries that have specific guidelines around how a patient exposed to certain therapies should be screened.
Reed Pence: Diller says doctors hope today’s cancer treatments will result in much less collateral damage in the future. They’ve learned how to treat patients with much more precision, with lower doses of drugs and radiation, yielding just as high a survival rate with fewer side effects.
Les Robison: With time and with the appreciation of these late effects that have occurred, much of the treatment strategy’s in many of these diseases for newly diagnosed patients right now is how do we get an appropriate balance between being able to effectively treat the cancer, cure the cancer, but do that with the minimal amount of long-term side effects. Priorities had to be put, I mean, if you were not able to cure a patient, they wouldn’t be able to develop late effects. So it was really an evolution over time to where precision in terms of treating cancer improved, survival rates improved, then greater emphasis being placed on how to prevent long-term consequences.
Reed Pence: Diller and Robison suggest that patients get their records where they were treated if they don’t have them already. And if a late effects treatment center isn’t nearby, consult with an oncologist to plot out appropriate screening and care. Support is also still important. Zachary’s group is one place to find it at stupidcancer.org. You can find out more about all of our guests on our website RadioHealthJournal.net.
I’m Reed Pence.