Cure Is Not Enough

An interview with Wendy Hobbie and Kathy Ruccione, co-authors of Childhood Cancer Survivors: A Practical Guide to Your Future.

By Bonnie Allen

An increasing number of children survive cancer—up to 75%. But what happens to these survivors as they move through the rest of their lives? Nancy Keene puts it this way: "These children have decades of life ahead of them and they face a unique and complicated future. Yet almost all of the money, time, and energy is still going toward curing kids, and very little is being used to take care of them once they're cured."

Treatment harsh enough to kill cancer impacts young bodies and minds in varying ways, not all of them yet known. Childhood Cancer Survivors is a layperson's guide to the possible late effects of chemotherapy and radiation on every organ in the body. But it's much more. Drawing on survivors' own words, it explores the emotional impacts of growing up after cancer as well as how to find follow-up care and navigate the socioeconomic pathways of school, work, relationships, and health insurance.

Many families of survivors leave treatment with a precarious balance of gratitude for their cure, anger at the curve cancer has thrown them, and fear that the cancer will return. Often, appreciation for what their medical team has already done prevents families from asking for further help with future planning. The authors hope to provide them with both the answers they seek and the resources to advocate for what they need.

In this interview, authors Wendy Hobbie and Kathy Ruccione talk about important survivor issues and current research, and suggest future directions for those who want to become active in advocating for childhood cancer survivors.

Hobbie and Ruccione have many years experience in the field of childhood cancer survival, Hobbie as coordinator of the Follow-Up Program at the Children's Hospital of Pennsylvania (CHOP), and Ruccione at Children's Hospital Los Angeles (CHLA), where she established the CHLA LIFE Program for survivors.

Allen: When did children start surviving cancer in large numbers?

Ruccione: I started in this field in 1973, and it was between then and the beginning of the eighties that we started to see significant numbers of kids surviving their diseases.

Hobbie: Particularly children with leukemia. That's where the numbers really started to rise. We've reached critical mass with at least a quarter of a million childhood cancer survivors whose voices are starting to be heard.

Allen: Your book goes into the physical, emotional, and socioeconomic challenges that survivors face. What are the most common physical consequences of cancer in children?

Hobbie: The two areas most commonly affected are in the brain: the endocrine system and the neuro-cognitive system. Over half of children diagnosed with cancer each year have either leukemia or a brain tumor, and both groups receive treatment to their central nervous systems. Radiation to the head affects the endocrine system and growth. Other effects include damage to ovaries and testes and the thyroid gland.

Ruccione: One of the things Wendy and I hope to accomplish with this book is for survivors to understand that potential late effects vary according to their disease and the specific treatment they received. Long-term survivors sometimes get ahold of information about the range of possible late effects and assume it applies to them. In fact, it's a very individual matter. This underscores how important it is for parents and survivors to keep records of their illness and treatment.

Allen: One of the unique things about your book is how extensively it addresses the emotional side of survival, especially through first-person accounts.

Ruccione: We wanted to bring out the survivors' experiences, in their own words. Health professionals benefit greatly from hearing these accounts. It's also important for other survivors who didn't have anyone to talk to about their experience or who thought it was unique to them. The feedback we're starting to get from survivors is, "Wow, I thought this only happened to me."

Allen: What are some emotional late effects that childhood cancer survivors might experience?

Hobbie: Kathy and I work with a psychologist, Dr. Anne Kazak, and a psychiatrist, Dr. Margeret Stuber, to look at the psychological effects of surviving childhood cancer utilizing the paradigm of post-traumatic stress. We're finding that as young adult survivors of childhood cancer approach developmentally difficult periods of young adulthood, the stress of having cancer is compounded and these survivors may experience increased anxiety. For example, Nancy Keene sent us a review that mentioned a survivor saying, "I felt sick weeks before my visit to the follow-up clinic." We talk about emotional late effects in the book, but research is just starting to emerge.

Allen: There must be a desire to put thoughts of cancer completely behind you when treatment is over. Does this change as survivors get older?

Hobbie: Yes. We see many adolescents who are reluctant to talk about their disease and treatment. They don't want to think about what happened to them, much less what may happen to them in the future. However, young adults in their twenties and thirties have questions about the treatment they received and what effect it may have on them as individuals and on their offspring. This is why CHLA, CHOP, and other institutions are developing young adult programs.

Allen: What are some specific steps you'd advise a parent or survivor to take after treatment ends?

Ruccione: Number one, know what their diagnosis and treatment were, and learn what needs to be monitored in the future. They may want to schedule an appointment to talk with their treating physician, outside of the usual appointments for tests and physical exams. Sometimes it's called an "exit interview," but it's not a real exit—we don't really want them to disappear from our lives! We want to help them monitor their health into the future—to be knowledgeable about their own history so that they have that knowledge at hand if they go to another healthcare provider who may not know very much about childhood cancer.

Allen: In the back of your book is a tear-out health history pamphlet with space for survivors to record information about their treatment. Did you include that with the exit interview in mind?

Hobbie: Yes. All patients should have an exit interview. However, many institutions do not have exit interviews and families have found it difficult to get all the necessary information about treatment and potential late effects once treatment has ended. The pamphlet can act as a guide to what information is important to gather. In a situation where an exit interview isn't available, the family can follow the steps in the pamphlet to collect all the information from the patient's chart that will assist in determining risk factors and necessary follow-up care. They may not be able to calculate cumulative doses of medication, but they may be able to say, "My child received 15 doses of adriamycin," or "My child received radiation to her head or chest." This information, in combination with the book, will help in developing a plan of care.

Allen: What's been the medical community's response to your book?

Ruccione: I can tell you, having just come back from the first meeting of the Children's Oncology Group—the combined pediatric clinical trials cooperative groups that include the medical and nursing community, psychologists, pharmacists, and others—that the response was incredible. Many of them said they wanted to find a donor to help purchase books for patients at their hospital as they're going off treatment. Even though it wasn't really written for health professionals, I think they're going to use it.

Allen: Are there any follow-up studies on childhood cancer survivors?

Ruccione: There's a major national study called the Childhood Cancer Survivor Study, led by Dr. Les Robison, from the University of Minnesota. He's been following 15,000 survivors, registered at 27 participating institutions, who were diagnosed between January 1970 and December 1986. Through questionnaires and medical records, information is being gathered on the survivors' experiences, complications, and problems.

This is a critical study; it's the first time there's been strength in numbers and a thorough look at both medical data and survivors' personal reports. We'll be seeing papers in scientific publications beginning this year.

Some of the papers now in preparation follow things like pregnancy in survivors. They'll look at what they call "late mortality," the cause of death for long-term survivors. They'll report on the incidence of second tumors, and there will be a wide variety of reports that have to do with psycho-social issues as well as medical issues. These are the kinds of observations that can be made with a study this big.

Allen: What are the big issues that still need to be addressed?

Ruccione: One of the big issues we face is adequate funding. Our programs don't generate income, so we're dependent on philanthropic funding. We especially need funds to take care of patients who have no insurance. There are some real barriers to care that need to be overcome. I don't know today if we'll have a program next year, because of funding issues.

Hobbie: I am frustrated by the belief that follow-up care is a luxury. Follow-up care should be the standard of care. We need to educate health care providers to understand the importance of these programs and how they can improve the quality of life of individuals who have been treated for childhood cancer.

At this time we know that certain institutions have state-of-the-art programs. Most of these institutions—certainly CHOP and CHLA—do one-time evaluations for any survivors if they have their medical records available. This is not ideal, however, because there are so many survivors. But at least it is a place for them to turn for information. Hopefully this book will help survivors identify what they might be at risk for so they can receive adequate follow-up care.