Childhood Cancer Survivors

WebMD Live Events Transcript

Event Date: 06/16/2000.

Childhood cancer cure rates are rising but what are the long term effects of treatment? Nancy Keene, Wendy Hobbie and Kathy Ruccione, authors of 'Childhood Cancer Survivors: A Practical Guide to Your Future,' will be on hand to answer your questions.

The opinions expressed by the guests are theirs and theirs alone. If you have questions about your health, you should consult your personal physician. This event is meant for informational purposes only.

Moderator: Greetings and welcome to WebMD Live! Our guests this evening are Nancy Keene, Wendy Hobbie and Kathy Ruccione.

Keene has been involved with the medical world for over two decades as a caregiver and a patient. In addition, Nancy spent years advocating for and supporting her young daughter through intensive treatment for acute leukemia.

Hobbie is the Associate Director of the Pediatric Oncology Nurse Practitioner Program at the University of Pennsylvania and the Coordinator of the Follow-Up Program at Children's Hospital of Philadelphia. During the past 15 years, Wendy has devoted her professional life to the follow-up and treatment of survivors of childhood cancer and their families.

Ruccione is the Nursing Administrator in the Children's Center for Cancer and Blood Diseases at Children's Hospital Los Angeles. Her particular interests are in three areas: Preparing patients and families to be informed participants in their care; the long-term follow-up of childhood cancer survivors; and the epidemiology and genetics of childhood cancer. She has published extensively and is frequently invited to speak on these topics.

Keene, Hobbie and Ruccione have recently collaborated on the book Childhood Cancer Survivors: A Practical Guide to Your Future. Why a book about childhood cancer survivors? They've been cured, isn't that the real struggle?

Keene: Dr. G. D'Angio said twenty five years ago, "Cure is not enough." That still has not changed. Chemotherapy, surgery, and radiation can affect growing bodies and developing minds. Many survivors are at risk for numerous late effects. It's just as important to take care of children as they age as it is to cure them in the first place. Curing children of cancer is one of the miracles of modern medicine. Much attention has been focused, and with good reason, on this dramatic increase in cure rates. However, too many survivors are left to fend for themselves after cure. Surprisingly few children's hospitals have long-term multi-disciplinary clinics to care for survivors. It really is time to broaden the focus from cure to cure and care thereafter.

Ruccione: One of the pioneering MD's I worked with early on used to say, "If we could cure children of cancer we'd jump for joy and treat the complications." We're jumping for joy now but we're also very aware of the complications, the cost of cure.

mold28_webmd: My daughter is being treated for leukemia now; she's eight. The doctor has said that chemo and radiation may affect her growth. Is there any way to prevent this? And stunt her growth by how much?

Hobbie: In recent years the dose of radiation given to children treated for leukemia has been reduced to doses that don't affect growth as dramatically as they did in the past. However, a child who receives any radiation to the brain is at risk for growth hormone failure. There really in nothing to be done to prevent it; however, keeping careful records of her growth after she completes therapy and noting any declines early so that she could be seen by an endocrinologist (hormone doctor) is the best thing to do. This way if your daughter has a growth delay, she can be treated with growth hormone and achieve a good adult height. However, she may not have this problem since the doses of radiation have been decreased over the years. It is very hard to predict the potential for loss of height. The best defense is early recognition and intervention. Generally, the rule of thumb for late effects from radiation is the greater the dose and the younger the age, the greater the risk of problems. So, very young children who have high doses of radiation are at greater risk for disruptions in growth. Another thing to consider is what is your child's growth potential? One way to evaluate this is for her health care providers at a late effects clinic to evaluate her growth charts from before she had cancer.

Moderator: Should one keep following up on a child's mental development after treatment?

Hobbie: One of the greatest issues that arise for survivors of cranial irradiation are learning problems. Radiation delivered to a growing brain may affect a child's ability to learn. Children who have received radiation to the brain should have routine evaluations of school progress. Nancy will address more specifics related to this topic.

Keene: YES! I have been a member of online support groups for parents of kids with cancer for five years. One of the most heartbreaking topics is parents' struggles to get support for their children who develop learning disabilities. Any child who had radiation or chemotherapy to the brain is at risk for learning problems. Many of these are subtle -- drifting attention, slow handwriting, difficulty with organization. Often, the child is called lazy or spoiled. If treatment centers proactively identified these children and provided educational information and support, these children would get the help they deserve as soon as the problems develop. There are some institutions that do this, but I would like to see universal testing of all survivors at risk for learning disabilities. Another point that parents need to know is that many of these problems do not develop until several years after treatment ends. So, evaluations need to occur periodically for several years

Hobbie: Children who are treated with Adriamycin (doxorubicin) require life long follow-up of their heart function. The risk to one's heart is proportionate to the dose of Adriamycin the child received and the age of the child at the time of treatment. If your child receive only three doses of  Adriamycin, the follow-up of heart function will be different than if your child receive a larger dose. I would speak to the oncologist, get your son's dose and then discuss that frequency of follow-up. However, all children require some frequency of cardiac follow-up. Small problems are easier to handle before they become big ones.