A Formidable Type of Childhood Cancer Gets Added to Highly Regarded Library of Treatment Recommendations

“I know what these guidelines will mean to patients and their families,” said Paula Head, patient advocate on the NCCN Guidelines^® Panel for Pediatric Bone Sarcoma. “Families who are walking that journey, need clear, accurate medical roadmaps that reduce anxiety, and bring confidence in the care their child is receiving. As a parent who experienced this with my daughter, I wanted there to be guidelines that are specifically for pediatrics, because these cancers and their treatments are different than for adults.”

NCCN’s evidence-based, expert consensus-driven recommendations for prevention, screening, treatment, and supportive care are relied on by care providers around the world. The guidelines provide a roadmap for making optimal treatment decisions, putting guardrails in place against over- or under-treatment.

All NCCN Guidelines are available for free at NCCN.org or via the Virtual Library of NCCN Guidelines^® App.

NCCN has added several pediatric cancer guidelines to its robust library during the last few years, including:

• Pediatric Acute Lymphoblastic Leukemia
• Pediatric Aggressive Mature B-Cell Lymphomas
• Pediatric Hodgkin Lymphoma
• Wilms Tumor
• Pediatric Central Nervous System Cancers
• Pediatric Soft Tissue Sarcoma

The new NCCN Guidelines for Pediatric Bone Sarcoma is focused on a type of cancer called Ewing sarcoma and other undifferentiated round cell sarcomas. While extraordinarily rare overall, it is the second most common primary bone tumor affecting children and adolescents. It typically impacts teenagers between the ages of 15-19¹, and can present as severe and persistent pain or swelling in the limbs or pelvis. Those symptoms are also common to other teen bone issues, so x-rays are a key first step in the diagnostic process.

“Teenagers are at a unique point in their lives. Intensive cancer treatment can drain their energy and disrupt their developing sense of autonomy,” explained Patrick Leavey, MD, UT Southwestern Simmons Comprehensive Cancer Center, Chair of the NCCN Guidelines Panel for Pediatric Bone Sarcoma. “These guidelines can help ensure they are not alone; that they know they have a knowledgeable team ready to support them.”

Dr. Leavey noted the importance of clinical trials for advancing new treatments. The extreme rarity of Ewing’s sarcoma can make it difficult to achieve therapeutic advances. However, there have been significant improvements on the topic of risk stratification in recent years.

Currently, the 5-year survival rate for Ewing sarcoma when diagnosed at an early stage is 81%, though that drops to 41% for metastatic disease². Speaking of the toll Ewing sarcoma takes on teens and other young people, Paula Head concluded: “Whether it’s one or 101, whatever that number is, it’s too many.”

Frequently Asked Questions:

What are the NCCN Guidelines?

The NCCN Guidelines are a comprehensive set of evidence-based, expert consensus-driven recommendations covering cancer prevention, screening, treatment, and supportive care. The intent of the NCCN Guidelines is to assist in the decision-making process of individuals involved in cancer care—including physicians, nurses, pharmacists, payers, patients and their families—with the ultimate goal of improving patient care and outcomes. Independent studies have found guideline-concordant care is associated with longer lives, better outcomes, and lower costs, across a variety of cancer types.

Who maintains the NCCN Guidelines and how frequently are they updated?

The NCCN Guidelines are updated continuously by more than 60 different panels featuring more than 2,000 interdisciplinary experts from NCCN’s 34 Member Institutions along with patient advocates. They are the most thorough and frequently updated clinical practice guidelines available in any area of medicine.

How can people access the NCCN Guidelines?

The NCCN Guidelines are available free for non-commercial use at NCCN.org or via the Virtual Library of NCCN Guidelines^® App. Most of the NCCN Guidelines can also be explored digitally via the NCCN Guidelines Navigator™, in addition to the traditional PDF format, for easy searching. Free website registration is required in order to access clinical content. Visit NCCN.org/login to create an account.

About the National Comprehensive Cancer Network
The National Comprehensive Cancer Network^® (NCCN^®) is a not-for-profit alliance of leading cancer centers devoted to patient care, research, and education. NCCN is dedicated to defining and advancing quality, effective, equitable, and accessible cancer care and prevention so all people can live better lives. The NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines^®) provide transparent, evidence-based, expert consensus-driven recommendations for cancer treatment, prevention, and supportive services; they are the recognized standard for clinical direction and policy in cancer management and the most thorough and frequently-updated clinical practice guidelines available in any area of medicine. The NCCN Guidelines for Patients^® provide expert cancer treatment information to inform and empower patients and caregivers, through support from the National Comprehensive Cancer Network Foundation (NCCNF). NCCN also advances continuing education, global initiatives, policy, and research collaboration and publication in oncology. Visit NCCN.org for more information.

¹ Siegel RL, Kratzer TB, Wagle NS, et al. Cancer statistics, 2026. CA: A Cancer Journal for Clinicians 2026;76:e70043. Available at: https://acsjournals.onlinelibrary.wiley.com/doi/abs/10.3322/caac.70043.
² American Cancer Society: Prognostic Factors and Survival Rates for Ewing Sarcoma. 2026. Available at: https://www.cancer.org/cancer/types/ewing-tumor/detection-diagnosis-staging/survival-rates.html. Accessed July 2, 2026.

Media Contact:
Rachel Darwin
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SOURCE National Comprehensive Cancer Network