Understanding and Reporting Pediatric Kidney Cancer

Topacio Garrido, MS, CTR CDC Leave a Comment

Understanding and Reporting Pediatric Kidney Cancer

Wilms tumor, also known as nephroblastoma is a cancerous tumor that occurs in the cells of the kidney. Some signs and symptoms of nephroblastoma are fever, abdominal swelling, stomach pain, fatigue, constipation, hematuria, weight loss and loss of appetite. Wilms tumor can occur sporadically after birth if there is a mutation in cells or a genetic defect. Some tests used to diagnose the disease or determine if the cancer has metastasized can include CAT scans, chest X rays, MRIs, bone scans and biopsies. The average age of children diagnosed with Wilms tumor is 2-3 years old. The tumor can affect a single or both kidneys. This type of cancer affects millions of children around the world. Further research into better treatment and a cure for cancer is needed.  

About 10,470 of new cases of childhood cancer in the United States will be diagnosed among children from birth to 14 years, and about 1,050 children are expected to die from the illness. Although cancer death rates for this age group have decreased by 71 percent, cancer remains the leading cause of death from disease among children. There are many types of childhood cancer but there is no cure yet. The most common types of cancer diagnosed in children areleukemias, brain and other central nervous system (CNS) tumors, and lymphomas. The most common types of kidney cancers are renal cell carcinoma, nephroblastoma and transitional cell carcinoma. 

Coding Wilms Tumor

As a cancer registrar when coding a Wilm’s tumor also known as Nephroblastoma, you must follow the solid tumor rules of the given year the cancer was diagnosed. This type of cancer can occur anywhere in the kidney. The solid tumor rules state that Wilm’s tumor histology is coded to 8960. When there are bilateral nephroblastomas, you must abstract as a single primary. When coding a Wilm’s tumor timing does not matter even if the cancer occurred at the same or different time. The tumors might also occur simultaneously and contralateral. The best type of treatment for this type of cancer is surgery if the cancer has not metastasized to other organs. According to SEER, it will be code 30 for a partial or subtotal nephrectomy or code 40 for a complete nephrectomy. 

New Advances in Cancer Registry for Childhood Cancer Reporting

To help address the burden of childhood cancer the Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act was signed into law. The CDC is developing a project called the “Childhood Cancer STAR Project which is a new data collection system in the CDC’s National Program of Cancer Registries (NPCR) to facilitate rapid case reporting and contribute to the understanding of cancer and best treatment options. They created software that will allow cancer registries to collect, edit, and store cancer information more effectively. The system allows laboratories to send data to central cancer registries and they are currently testing the software in some states. The CDC and the National Cancer Institute (NCI) are working with cancer registries to improve the understanding of cancer in children, adolescents, and young adults. 


  • Centers for Disease Control and Prevention. (2022, August 30). Cancer surveillance cloud-based computing platform. Centers for Disease Control and Prevention. Retrieved December 25, 2022, from https://www.cdc.gov/cancer/npcr/data-modernization/cloud-based.htm  
  • Wilms tumor and other childhood kidney tumors treatment (PDQ®)–patient version. National Cancer Institute. (n.d.). Retrieved December 25, 2022, from https://www.cancer.gov/types/kidney/patient/wilms-treatment-pdq  

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