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.

Ruccione: One of the benefits of a comprehensive long-term follow-up program is that there are good linkages to cardiologists (heart doctors) and other specialists so that the appropriate follow-up can be obtained. These issues of late effects are the very reason it's good to find a comprehensive long-term follow-up program.

Keene: Wendy just mentioned the importance of knowing the dose your child received in order to choose the most appropriate follow up. We interviewed over a hundred survivors while writing this book, and only one had a written summary of his treatment. It is very important that every survivor have a treatment history that includes type of disease, names of drugs and total doses, location and dose of radiation, et cetera, in order to provide all future health care providers with the information they need to provide good care.

Ruccione: And there is a card summary provided in each copy of the book that can be filled in by the nurse or doctor at the treatment center and carried along when care is provided outside the original treatment center.

pattyfeist_webmd: I asked my son's oncologist at diagnosis with ALL (acute lymphocytic leukemia) over three years ago: If he is cured, how long will his lifespan be? She shook her head and said, "We don't know." Still true?

Hobbie: Life span is not a easy question to answer. The type of cancer a child has and the type of treatment they receive may impact life span. However, in most cases when a child is cured of their cancer and they don't have any major organ damage, one can expect that they will have a long life span. We currently follow people who are 30 and 40 years past their diagnosis of childhood cancers and are doing well. But this is a question that I think we all wish we had a crystal ball to answer. But with what we know so far, things look good.

guitarman17_webmd: My 'child' is actually a young adult (21) being treated for ALL. He has some neuropathy problems (low blood pressure and slight hand tremors). Does this diminish with time?

Hobbie: In general, symptoms that children and young adults have while on therapy diminish once they have completed therapy. However, some problems may linger, but in general neuropathies from drugs like vincristine are short term. The low blood pressure could be related to a number of issues and most likely is either treatment-related or disease-related. What I mean by that is cancer treatment can be hard on one's body and the body responds in a variety of way, e.g., low blood pressure, fatigue, weakness.

Keene: The neuropathies of most children and teens that I know who were treated for leukemia disappear gradually after treatment ends. However, some especially sensitive children and some who relapsed and received a second course of very intensive treatment have persistent problems with neuropathies. Quick evaluation and intervention from physical therapists experienced treating this type of problem is very beneficial.

mold28_webmd: How important is psychiatric care after cure?

Ruccione: I would say that psychosocial (emotional) care is very important and that it really should start before care as a part of good care. We now know that good emotional support from the multi-disciplinary team (nurses, doctors, social workers, psychologists) can make a tremendous positive difference in the lives of children and families dealing with cancer and treatment. We also have learned that children are very resilient and most come through the experience very intact. However, there is a subset of young people who are affected by post-traumatic stress and have significant challenges in their survivorship. Seeking good mental health care is a smart and brave thing to do, and can benefit these young people and their families greatly.

Moderator: Here is a great comment from one of our members...

guitarman17_webmd: The comment that you have followed some cases of childhood cancer who are doing well 30 to 40 years after their treatment provides much needed hope for those of us going through this. In many chat groups/bulletin boards, there is essentially NOBODY out there to tell us "I made it, and am doing fine 20 years later." Thank you.

Moderator: What should one expect from their children's treatment team?

Hobbie: Initially when a child comes off treatment, it is best if there is an end-of-treatment family meeting. At that time, which is often filled with a lot of emotions and fears, the family and child can get an idea of what to expect over the next few months and years. After the initial year or so off treatment, it is best to have follow-up visits that focus on health promotion. That is, as the risk of relapse or recurrence decreases, one should begin to focus on the future and taking care of oneself for life.

Keene: Follow- up programs usually provide a review of treatments received, counseling regarding potential health risks, and any necessary diagnostic tests such as cardiac evaluations, hormonal studies, psychological evaluations, or testing for learning disabilities. In addition, members of the follow up team act as advocates for survivors with school, insurance agencies, and employers. They should listen and care. We recently helped Candlelighters Childhood Cancer Foundation (CCCF) update their list of long-term follow-up clinics. To get a copy, call 1-800-366-CCCF or go to www.candlelighters.org.

Ruccione: Another thing that the team may provide is support groups for survivors where folks can get together and share experiences and benefit from each other's perspectives. The treatment team should be teachers to patients and families, but we should also be life long learners - learning from the patients and families.

Moderator: Well, our time is about up. Do you all have any parting comments?

guitarman17_webmd: Do you have experience with insurance, i.e., how difficult is it for childhood cancer survivors to obtain health or life insurance?

Keene: Many follow-up clinics provide consultations with survivor's primary care doctors. So, teens and adults who have an internist or family practitioner can have this doctor call the clinic for information or advice. The easiest way for survivor's to get health or life insurance is to work for a company or institution with a large number of employees.

Ruccione: There are some really challenging issues about insurance and survivors have reported difficulties in getting health and life insurance. There are some good resources for more information, including our book.

Keene: These companies often enroll new employees without requiring a medical history or physical. Thanks for your questions and best wishes for good health.

Hobbie: Survivors of childhood cancer have been referred to as pioneers. Their trials and tribulations after cancer treatment would be hollow victories if we, the health care team, didn't help to guide them through the time after treatment ends. Knowledge is power, so know what kind of treatment you received and what might be the risk for your health in the future. Take control of your life by taking care of your bodies and minds. Eat well, exercise, never smoke, wear your seatbelts, and practice safe sex. If you follow a healthy routine in your own life, the risks imposed on you by the disease and treatment most likely will be diminished. We hope our book helps empower cancer survivors to live life to the fullest.

Ruccione: As we conclude, I would have to say that from day one, our dream with this book was to empower young people and their families to know their health history, know what they need to do for life-long health care, and to feel less alone with the challenges of survivorship. We all believe that saving lives is vital, but we want survivors to have good quality in the lives saved. That is our passion.

Moderator: Our guests this evening have been Nancy Keene, Wendy Hobbie and Kathy Ruccione, who have recently collaborated on the book Childhood Cancer Survivors: A Practical Guide to Your Future. And thank you to all of our members for asking great questions! Good night.

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