The Late Effects Study

All treatments, even taking aspirin, can lead to complications.  It was learned early in the 1900's that radiation therapy given to developing tissues can cause disturbances in normal growth.  It also was found that adding radiation therapy to children after surgery for Wilms tumor appeared to increase their chances for survival.  One way of avoiding treatment effects is not to treat at all, of course.  This is not an option when radiation therapy is known to be beneficial.  The same holds for chemotherapy.

The National Wilms Tumor Study has therefore focused on defining low and high risk groups of patients according to how advanced the disease is at the time of diagnosis, and what the tumor cells look like under the microscope.  By doing this, it has been possible to use the least amount of treatment of patients at low risk, reserving the more aggressive treatments such as radiation therapy and certain toxic drugs only for these children in whom relapse and death are real threat.

The successive clinical trials run by the National Wilms Tumor Study Group have been successful in these endeavors with extremely gratifying results.  However, "success" when treating children with cancer requires a very demanding definition.  Not only a cure, but also normal subsequent development through the adolescent years, and—eventually—a productive adulthood.

The NWTS has therefore included the monitoring of treatment-related complications from its inception in 1969.  It was the first childhood cancer study group to do so.  As a result, we know that treating patients in the low risk category with only two drugs is not associated with late complications, especially now that the length of treatment has been reduced from 1-1/4 years to only three months.  Radiation therapy and a drug that can cause heart problems in long-term survivors are used only in patients who clearly need these forms of therapy.

Late Study Aims:

To determine the incidence of serious medical conditions in survivors of Wilms tumor (WT), specifically a) congestive heart failure; b) second malignant neoplasms (SMN); c) renal failure; d) chronic restrictive pulmonary disease; and e) diabetes. To relate the risks of these events to the type and amount of radiation and chemotherapy, to disease factors and to host factors. Where possible, to compare the incidence rates to national population data. To coordinate an international collaborative study of SMNs in WT survivors.

To determine mortality rates in former WT participants, to compare these with national population rates and to evaluate the long term effects on mortality of treatment with radiation and chemotherapy during childhood.

To determine the risks of serious pregnancy complications and adverse reproductive outcomes in survivors of WT and how they vary with the type and amount of radiation and chemotherapy. In particular to confirm or refute an earlier National Wilms Tumor Study (NWTS) finding, based on small numbers, of an increase in congenital malformations in offspring with increasing abdominal radiation received as a child by the mother. To compare live birth rates among participant subgroups defined by treatment and with those obtained from national statistics.

To determine the frequency of WT and other cancers in the children and other family members of WT participants to estimate the recurrence risk in siblings and offspring; and to identify familial cancer syndromes that may include WT.

To compare the frequency of successful breastfeeding of their infants among three groups of mothers who had WT: 1) those who received no radiation as treatment; 2) those who received abdominal radiation only; and 3) those who received whole lung radiation.

To contribute to the genetic epidemiology of WT through statistical analysis of genetic heterogeneity, familial disease and heritability. To collaborate with molecular biologists, combining laboratory and epidemiologic data and identifying the most informative subgroups of WT participants for sequencing or assay of loss of imprinting (LOI) or loss of heterozygosity (LOH) of genes implicated in Wilms tumorigenesis.

Who is eligible for the Late Effects Study?

We have been asked by a number of Wilms tumor survivors who were not registered on our study at the time of diagnosis if they can be enrolled on or contribute information to our Late Effects Study.  We appreciate the generosity of these offers and recognize that they are made with the motivation to share information that may lead to improved treatment and long-term outcome.  Regretfully we cannot accept these offers for the reasons listed below.  However, we encourage everyone who has had Wilms tumor to contact us.  We want to remain a resource for all of you by answering specific questions, send copies of our newsletters, and using our resources to put you in contact with medical and counseling providers.

The NWTS Late Effects Study is funded by the National Cancer Institute (NCI) and subject to their regulations.  There are a number of elements that make someone eligible to participate in the NWTS Late Effects Study.

The above is the summary picture of eligibility.  Our clinical trial protocols adhered to very strict guidelines in order to provide scientifically valid results.   While we very much appreciate offers to provide us data about Wilms tumor experiences from people not registered on the NWTS, we cannot currently include these in analyses because we are prohibited from using them in any way.  Even in our newsletter, our information must be based upon eligible patient data.  According to the rules that govern how we communicate about late effects, we cannot use data from other than NWTS participants

If you were diagnosed with Wilms tumor after September of 1969, you might have been enrolled on one of our clinical trials and now be eligible for the Late Effects Study.  If you would like to find out, please contact us. If you diagnosed before October of 1969 or after 2002, or were diagnosed within this period but not enrolled, we would still like to hear from you.  Whether you were registered on an NWTS clinical trial study or not, you are welcome to the information and support that we have to offer.

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National Wilms Tumor Study
Fred Hutchinson Cancer Research Center
1100 Fairview Ave. N, M2-A876,
PO Box 19024, Seattle, WA 98109-1024
Phone: (206) 667-4842 or (800) 553-4878
FAX: (206) 667-6623
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