What are the management and treatment options for individuals with ATM (Ataxia-Telangiectasia Mutated) gene mutations?

Medical Advisory BoardAll articles are reviewed for accuracy by our Medical Advisory Board
Educational purpose only • Exercise caution as content is pending human review
Article Review Status
Submitted
Under Review
Approved

Last updated: August 1, 2025View editorial policy

Personalize

Help us tailor your experience

Which best describes you? Your choice helps us use language that's most understandable for you.

Management and Treatment Options for Individuals with ATM Gene Mutations

Management of individuals with ATM gene mutations should be tailored based on whether they have biallelic mutations (causing Ataxia-Telangiectasia) or heterozygous mutations (carriers), with specific cancer surveillance and risk reduction strategies implemented according to the type of mutation and family history. 1

Biallelic ATM Mutations (Ataxia-Telangiectasia)

Clinical Management

  • Neurological Support: For progressive cerebellar degeneration and ataxia
  • Immunological Management: Treatment of recurrent sinopulmonary infections and bronchiectasis
  • Cancer Surveillance: Heightened monitoring due to elevated malignancy risk
  • Supportive Care: Median survival is between 19-30 years, with respiratory failure and malignancy being the main causes of death 1

Emerging Treatments

  • Dexamethasone Administration: Positive effects on neurological features have been observed in phase II and III clinical trials using dexamethasone delivered through autologous erythrocytes (EryDex) 2
  • Potential Gene Therapy: Research into ATM variants capable of restoring cellular functionality shows promise for future therapeutic approaches 2

Heterozygous ATM Mutations (Carriers)

Cancer Risk Management

Breast Cancer

  • Risk Assessment: Use individualized risk assessment models like CanRisk to determine surveillance needs
  • Enhanced Surveillance: Most ATM heterozygotes qualify for enhanced breast surveillance
  • MRI Screening: Many carriers meet criteria for breast MRI based on country-specific guidelines 1
  • Risk-Reducing Surgery:
    • Bilateral risk-reducing mastectomy is not routinely recommended but may be considered based on individualized risk assessment and shared decision-making
    • For women already diagnosed with breast cancer, contralateral risk-reducing mastectomy should be considered only after thorough risk assessment 1

Pancreatic Cancer

  • Surveillance: Consider pancreatic cancer screening, ideally as part of a clinical trial
  • Limited Evidence: Studies show limited detection of pancreatic cancers in ATM heterozygotes during surveillance programs 1

Prostate Cancer

  • Screening: Annual PSA testing beginning at age 40 is reasonable
  • Digital Rectal Exam: May be useful to guide interpretation of PSA findings 1

Ovarian Cancer

  • Risk-Reducing Surgery: Routine risk-reducing salpingo-oophorectomy (RRSO) is not supported by current evidence
  • Exceptions: Consider RRSO in the context of family history of ovarian cancer or if gynecological surgery is planned for other reasons 1

Special Considerations for Specific Variants

  • Higher Risk Variants: Some specific missense variants like c.7271T>G p.(Val2424Gly) confer significantly higher breast cancer risk (up to 60% by age 80) compared to typical truncating variants 1
  • Risk Assessment Tools: Note that standard risk assessment models like CanRisk may underestimate risks for these higher-risk variants 1

Family Planning and Genetic Counseling

  • Partner Testing: Consider partner testing before pregnancy planning, especially with family history of AT or in consanguineous relationships 1
  • Reproductive Options: Discuss preimplantation genetic testing and prenatal diagnosis options 1
  • Cascade Testing: Offer genetic testing to adult family members to guide their management 1

Treatment Considerations for Cancer in ATM Mutation Carriers

  • Radiation Therapy: Current consensus is to offer radiation therapy when indicated, without modification based on ATM heterozygote status 1
  • PARP Inhibitors: Limited evidence for effectiveness in ATM-mutated cancers, with mixed responses observed in clinical trials 1

Important Caveats

  • Variant Classification: Variants of uncertain significance (VUS) should not guide clinical management or predictive testing
  • Variant Reclassification: ATM variants may be reclassified over time as new evidence emerges
  • Research Gaps: Further studies are needed to fully define ATM-associated cancer risks and the effectiveness of early detection and risk-reducing interventions 1
  • Mutational Heterogeneity: High incidence of new and individual mutations has been demonstrated in different populations 3

References

Guideline

Guideline Directed Topic Overview

Dr.Oracle Medical Advisory Board & Editors, 2025

Professional Medical Disclaimer

This information is intended for healthcare professionals. Any medical decision-making should rely on clinical judgment and independently verified information. The content provided herein does not replace professional discretion and should be considered supplementary to established clinical guidelines. Healthcare providers should verify all information against primary literature and current practice standards before application in patient care. Dr.Oracle assumes no liability for clinical decisions based on this content.

Have a follow-up question?

Our Medical A.I. is used by practicing medical doctors at top research institutions around the world. Ask any follow up question and get world-class guideline-backed answers instantly.