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U-M doctors helping pediatric cancer survivors navigate uncharted waters

ANN ARBOR, Mich. - Modern medicine has made amazing advances during recent decades, especially when it comes to fighting cancer. However, in an ironic twist, pediatric cancer survivors are faced with a unique set of problems because of these advances.

Long-term effects include problems with growth and development, complications from prior surgery, organ system abnormalities from drugs and radiation therapies, potential problems with fertility, and the small but real risk of the development of new cancers.

"It's really amazing because many of these patients have a complete lack of understanding of what drugs they received, what therapies they received, and in many instances, they don't even remember much of what they went through," says Valerie Castle, M.D., a pediatric oncologist with the U-M Comprehensive Cancer Center and director of the Late Effects Clinic.

Cure rates for pediatric cancers have risen dramatically during the past 20 years; It's estimated that by next year, one in every 900 adults, aged 16 to 44, will be a survivor of pediatric cancer. These survivors face unique challenges as they become adults and move through life. They need to know what they went through as children and how it may impact them now and what ongoing and future problems they should anticipate.

With this in mind, the University of Michigan Comprehensive Cancer Center has created the Late Effects Clinic to help pediatric cancer survivors answer questions about their medical condition, their medical histories and assist them as they move through life. This is a new and evolving area of medical treatment. Many of these survivors would have died in an earlier generation, so there's a limited, but growing body of knowledge on what happens with pediatric cancer survivors 20 or so years after first treatment.

"When we talk about survival rates in pediatric malignancies, we now realize that diseases that were uniformly fatal 40 years ago are now curable up to 75 percent to 80 percent of the time depending on the malignancy," says Marcia Leonard, R.N, P.N.P, coordinator with the U-M Late Effects Clinic. "We've learned, however, that survival comes at a price for a great deal of these children. There are organ systems that were adversely affected because they were growing and developing at the time of cancer therapy."

Many of the patients were infants or very young children when they were diagnosed and treated, and their parents did not keep detailed records, so their understanding of their disease is limited. Patients who come to the U-M late Effects Clinic receive a comprehensive review of what their disease is, what treatments they received as children and how both may impact their life now and in the future.

"We all know that our understanding of these diseases and the side effects from therapy is continuing to evolve," says Castle. "So, one of our major roles is to remove the misinformation and provide our patients with good solid medical information that allows them to appropriately define what their medical needs may be in the future."

Castle says issues facing the survivor go far beyond just their medical treatments.

"It's their psychological well being, it's issues related to their insurability and their employer," says Castle. "We've had many instances where we've been able to intervene on behalf of the patient to reassure an employer that the patient is a good candidate. One of our major roles has to be an advocate for the patient and we take that role very seriously."

The U-M Late Effects Clinic is held once a month and is primarily run by a physician, two nurse practitioners and a social worker. Leonard points out that the clinic staff receive invaluable assistance from a large number of doctors in various subspecialties, such as cardiology, obstetrics and gynecology, radiation therapy, endocrinology and others throughout the Health System.

"I think, first and foremost, we teach our patients to be advocates for their own health and to be good health care consumers," says Leonard. "These patients have many unique needs that they need to be aware of and they need to be aware that they are responsible for much of the follow-up care they're going to receive. It's very important for survivors to help educate the people who are going to take care of them."

Facts about pediatric cancer and survivorship:

  • By 2000, one in every 900 adults, aged 16 to 44, will be a survivor of pediatric cancer.
  • Many cancers that were uniformly fatal 40 years ago are now curable up to 75 percent to 80 percent of the time depending on the malignancy.
  • Long-term effects related to a patient's cancer and subsequent therapy include problems with growth and development, complications from prior surgery, organ system abnormalities from drugs and radiation therapies, potential problems with fertility, and the development of second malignancies.

 

Find out more information on the Internet:

U-M Comprehensive Cancer Center's Pediatric Hematology/Oncology Clinic
http://www.cancer.med.umich.edu../clinic/pedclinic.htm

The National Cancer Institute's CancerNet cancer information
http://cancernet.nci.nih.gov/index.html

University of Michigan Health Topics A to Z http://www.med.umich.edu/1libr/primry/risks03.htm

The National Childhood Cancer Foundation
http://www.nccf.org/

The Candlelighters Childhood Cancer Foundation
http://www.candlelighters.org/

For more information via phone, call TeleCare at 1-800-742-2300, category 1010.

Written by Pete Barkey


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