Navigating the Evolving Landscape of Pancreatic Cancer Surveillance: Key Insights from the PRECEDE Consortium

Chandrika Kurpad, MS, LCGC - CGA-IGC Communications Committee Member

Source: Manam A, et al. Areas of Uncertainty in Pancreatic Cancer Surveillance: A Survey Across the International Pancreatic Cancer Early Detection (PRECEDE) Consortium. JCO Precis Oncol. 2025;9:e2500696. doi:10.1200/PO-25-00696

Introduction

Pancreatic cancer remains one of medicine's most formidable challenges, with a current 5-year survival rate of just 13% in the United States. However, when detected at stage IA, survival rates exceed 80%, a stark reminder that early detection saves lives.

For healthcare providers managing high-risk individuals (HRIs), understanding current surveillance practices and areas of ongoing uncertainty is critical to optimizing patient care.

A landmark survey recently published in JCO Precision Oncology provides the most comprehensive assessment of pancreatic cancer surveillance practices to date, revealing both encouraging consensus and significant variability across 54 international centers participating in the Pancreatic Cancer Early Detection (PRECEDE) Consortium.

Key Findings: Where Do We Agree?

Surveillance Program Structure

The survey revealed several consistent practices across high-volume surveillance centers:

• Enrollment settings: The majority (81.5%) of sites enroll participants in outpatient clinic settings.

• Internal referrals predominate: 74% of participants are referred from within the institution's network.

• Multidisciplinary involvement: Gastroenterologists (39%), medical oncologists (22%), and surgeons (22%) serve as principal investigators, with genetic counselors playing increasingly important roles.

• Age of initiation: There was strong consensus that surveillance should begin at age 50 for most gene carriers, regardless of sex.

  
  

Standardized Clinical Processes

Encouragingly, most sites have implemented standardized approaches to:

• Family history acquisition (88.9%)

• MRI reporting (81.5%)

• Risk factor documentation (79.6%)

• EUS reporting (72.2%)

  
  

Critical Areas of Uncertainty

The Family History Dilemma

The most striking finding was substantial heterogeneity in how sites apply family history criteria when determining surveillance eligibility for pathogenic germline variant (PGV) carriers. This variability directly reflects discordant guideline recommendations:

For BRCA2 carriers without family history of pancreatic cancer:

• 44.4% of sites would offer surveillance

• 55.6% would not

For other PGV carriers without family history:

• BRCA1: 35.2% would offer surveillance

• PALB2/ATM: 31.5% would offer surveillance

• Lynch syndrome: Only 13% would offer surveillance

Among sites that do consider family history, 51.9% only count relatives with pancreatic cancer from the same side of the family as the PGV, while nearly 30% count relatives from either side regardless of genetic testing status.

Why This Matters Clinically

Relying solely on family history has significant limitations: patients may not know their family history (particularly in cases of adoption), may have incorrect information about family members' cancers, or may have family members who died early from other cancers, preventing the manifestation of pancreatic cancer risk. Additionally, the majority of patients with BRCA1- or BRCA2-associated pancreatic cancer will not have a family history of the disease.

Imaging Strategy Variability

While there was more consensus on imaging approaches than on eligibility criteria, important differences remain:

Index imaging modality:

• MRI/MRCP: 64.8% of sites

• EUS: 25.9% of sites

• CT: 3.7% of sites

  
  

Longitudinal surveillance strategy:

• Alternating MRI/MRCP and EUS: 66.7% of sites

• MRI/MRCP exclusively: 22.2% of sites

• EUS exclusively: 3.7% of sites

  
  

Surveillance interval:

• Annual imaging: 85.2% of sites

• 6-month interval: 11.1% of sites

Although data suggest EUS may be more sensitive for solid lesions while MRI/MRCP is more sensitive for cystic lesions, insufficient evidence exists to definitively recommend one modality over the other.

Practical Barriers to Implementation

The survey identified significant real-world challenges to pancreatic cancer surveillance implementation:

1. Insurance coverage burden (63% of sites)

2. Out-of-pocket costs (48.1% of sites)

3. Need for participant outreach to ensure timely follow-up (44.4%)

4. Limited accessibility to endoscopy or imaging services (25.9%)

These barriers were cited as the single most common obstacle by 42.6% and 18.5% of sites for insurance coverage and costs, respectively.

Clinical Implications and Recommendations

For Genetic Counseling and Risk Assessment

1. Educate patients about evolving guidelines: Be transparent that recommendations for surveillance eligibility, particularly for gene carriers without family history, are evolving.

2. Document family history comprehensively: Recognize limitations but gather as much detail as possible about both sides of the family.

3. Consider additional risk factors: Beyond genetics and family history, sites reported that pancreatic cysts on previous imaging (78.7%), patient motivation (55.3%), chronic pancreatitis history (55.3%), and unknown family history (46.8%) influence surveillance decisions.

   
   

For Surveillance Program Development

1. Start with MRI/MRCP or EUS: Both are acceptable index modalities, with choice dependent on institutional expertise, patient factors, and resource availability.

2. Consider alternating modalities: The majority practice of alternating MRI/MRCP and EUS may capture both solid and cystic lesions more effectively.

3. Establish standardized reporting: Implement structured reporting protocols for consistency in documentation and follow-up.

4. Address access barriers proactively: Work with financial counselors and patient navigators to mitigate insurance and cost challenges.

   
   

When to Stop Surveillance

Sites reported they would discontinue surveillance when HRIs develop life-limiting comorbidities (79.6%), are no longer surgical candidates (64.8%), or develop other malignancies requiring treatment (63%). Only 16.7% stop at a specific age, reflecting the personalized nature of these decisions.

The Path Forward

Recent NCCN guideline updates now recommend that all appropriately aged BRCA2 and ATM carriers should be considered for pancreatic cancer surveillance irrespective of family history. This represents a significant shift that may increase uniformity in practice, though questions remain about other genes such as BRCA1, PALB2, and Lynch syndrome.

Future research through the PRECEDE Consortium will be essential to compare outcomes between PGV carriers with and without family history of pancreatic cancer, and to determine optimal imaging strategies.

Emerging Considerations

As evidence emerges for increased upper gastrointestinal cancer risk in BRCA1, BRCA2, ATM, PALB2, and Lynch syndrome carriers, surveillance strategies may need to evolve to include concurrent upper endoscopy during EUS procedures.

Conclusion

This comprehensive survey reveals that while experienced pancreatic cancer surveillance centers share some common practices, significant variability persists—particularly regarding who qualifies for surveillance. For healthcare providers, this underscores several key points:

1. Stay current with evolving guidelines, particularly NCCN and specialty society recommendations.

2. Engage in multidisciplinary discussions when managing borderline cases.

3. Recognize the limitations of family history-based criteria.

4. Advocate for your patients regarding insurance coverage and access.

5. Participate in or refer to research studies like PRECEDE to advance the evidence base.

As our understanding of hereditary pancreatic cancer risk continues to evolve, healthcare providers play a crucial role in translating emerging evidence into improved patient outcomes. The dramatic difference between early and late-stage survival rates makes this work not just important—it's potentially life-saving.

Additional Resources

For institutions interested in establishing or improving pancreatic cancer surveillance programs, consider joining research consortia like PRECEDE or consulting published standardized protocols for EUS and MRI reporting in high-risk individuals.

Learn more about the PRECEDE Consortium: https://precedestudy.org/

___________________________________________________________________________

Interested in research consortiums? Be sure to listen to our CGA-IGC Research Collaboration Podcast Series.

Episode 1: The LINEAGE Consortium

Episode 2: GASTRIC Consortium

Episode 3: International Replication Repair Deficiency Consortium

Our CGA-IGC Podcast Series (Seasons 3, 4, 5, 6 & 7) presented by the CGA-IGC Education Committee. Or, explore our Expert Approach to Hereditary Gastrointestinal Cancers podcast series (Seasons 1 and 2). We're also on Spotify!

Also, looking for other educational resources? Toolkits? Webinars?

Our webinars are a valuable member benefit, and we encourage you to sign up as a member so you can join the live webinars and access our earlier webinar series on demand!

__________________________________________________________________________________