One patient in twenty with pancreatic cancer carries an inherited gene fault, and most have no family history. Guidelines now say test every patient, which finds relatives who carry it too, but the yearly scans that catch cancer at stage I in carriers are still offered only in research programmes. The proposal is to make surveillance follow the test result automatically.
Hu 2018 found a pathogenic variant in CDKN2A, TP53, MLH1, BRCA2, ATM or BRCA1 in 5.5 percent of 3,030 patients, 5.2 percent of those without a family history; NCCN and ASCO responded with germline testing for all. The CAPS programme showed what surveillance of carriers achieves: 9 of 10 surveillance-detected cancers resectable (Canto 2018), 7 of 9 at stage I in CAPS5, and across 1,731 people a median survival of 9.8 years for screen-detected cancer against 1.5 years outside surveillance (Dbouk 2022). The 2020 CAPS consensus nevertheless asked that surveillance stay in research settings until benefit was shown. The gap is cascade: the patient is tested, the drug decision (platinum, olaparib) is made, and the relatives who test positive have no routine route to annual endoscopic ultrasound or MRI. PRECEDE (20,000 estimated participants, primary completion December 2030) is the scale-up cohort. The proposal is a national registry that enrols every carrier found by cascade testing into protocolised annual imaging with outcomes reported, so that the evidence the consortium asked for is generated by the service rather than in spite of it. UK access and the EUROPAC programme are on the UK and NHS page.
The stage shift the pancreatic cancer page quotes (about three in four surveillance-detected cancers at stage I) and the strongest argument for offering surveillance to every germline carrier found by universal testing, which the NHS does not yet do outside research.
The rulebook behind the CAPS cohorts and the UK EUROPAC programme; it is also the reason surveillance for carriers is not yet a routine NHS service, because the consortium itself asked for it to stay within research until benefit was shown.
Family history misses most carriers, so the NCCN and ASCO guidelines moved to testing every patient; each carrier found is a family that can be offered surveillance and a patient who may be eligible for platinum and PARP inhibition.
The first long-term evidence that surveillance in high-risk people finds operable cancers, and the source of the imaging features that trigger surgery in the CAPS recommendations.
Shares Early detection roadmap: organ screening → blood tests for many cancers, High-risk pancreatic surveillance (CAPS / PRECEDE), MRI, The hardest cancers are found late and the tag pancreatic-evidence.
Shares Germline BRCA mutation (gBRCA), BRCA or PALB2-mutant pancreatic ductal adenocarcinoma, BRCA1 / BRCA2 (HRD), Pancreatic cancer roadmap: from Whipple's operation to gemcitabine, FOLFIRINOX, adjuvant chemotherapy, PARP inhibition, KRAS inhibition, vaccines and the surveillance question and the tag pancreatic-evidence.
Shares Fragmented care and guideline gaps, The hardest cancers are found late, Germline (hereditary) testing, Pancreatic cancer roadmap: from Whipple's operation to gemcitabine, FOLFIRINOX, adjuvant chemotherapy, PARP inhibition, KRAS inhibition, vaccines and the surveillance question and the tag pancreatic-evidence.
Shares Early detection roadmap: organ screening → blood tests for many cancers, The hardest cancers are found late, Pancreatic cancer roadmap: from Whipple's operation to gemcitabine, FOLFIRINOX, adjuvant chemotherapy, PARP inhibition, KRAS inhibition, vaccines and the surveillance question, Pancreatic ductal adenocarcinoma and the tag pancreatic-evidence.
Shares MRI, The hardest cancers are found late, Pancreatic cancer roadmap: from Whipple's operation to gemcitabine, FOLFIRINOX, adjuvant chemotherapy, PARP inhibition, KRAS inhibition, vaccines and the surveillance question, Pancreatic ductal adenocarcinoma and the tag pancreatic-evidence.
Shares Germline BRCA mutation (gBRCA), Germline vs somatic mutations, Pancreatic cancer roadmap: from Whipple's operation to gemcitabine, FOLFIRINOX, adjuvant chemotherapy, PARP inhibition, KRAS inhibition, vaccines and the surveillance question, Pancreatic ductal adenocarcinoma and the tag pancreatic-evidence.
Shares Fragmented care and guideline gaps, Pancreatic cancer roadmap: from Whipple's operation to gemcitabine, FOLFIRINOX, adjuvant chemotherapy, PARP inhibition, KRAS inhibition, vaccines and the surveillance question, Pancreatic ductal adenocarcinoma and the tag pancreatic-evidence.
Shares The hardest cancers are found late, Pancreatic cancer roadmap: from Whipple's operation to gemcitabine, FOLFIRINOX, adjuvant chemotherapy, PARP inhibition, KRAS inhibition, vaccines and the surveillance question, Pancreatic ductal adenocarcinoma and the tag pancreatic-evidence.