The major life-threatening complications to individuals with PJS are cancer and small bowel obstruction. Two small studies showed that the age of death is earlier in patients with PJS than their unaffected family members, and was attributable to obstruction or cancer.[47]Westerman AM, Entius MM, de Baar E, et al. Peutz-Jeghers syndrome: 78 year follow up of the original family. Lancet. 1999 Apr 10;353(9160):1211-5.
http://www.ncbi.nlm.nih.gov/pubmed/10217080?tool=bestpractice.com
[48]Spigelman AD, Murday V, Phillips RK. Cancer and the Peutz-Jeghers syndrome. Gut. 1989 Nov;30(11):1588-90.
https://gut.bmj.com/content/30/11/1588
http://www.ncbi.nlm.nih.gov/pubmed/2599445?tool=bestpractice.com
It is clear that small bowel obstruction is one of the leading causes of surgery and can be minimised by clearance of polyps within the small bowel.[35]Oncel M, Remzi FH, Church JM, et al. Benefits of "clean sweep" in Peutz-Jegher's patients. Colorectal Dis. 2004 Sep;6(5):332-5.
http://www.ncbi.nlm.nih.gov/pubmed/15335366?tool=bestpractice.com
[36]Edwards DP, Khosraviani K, Stafferton R, et al. Long-term results of polyp clearance by intraoperative enteroscopy in the Peutz-Jeghers syndrome. Dis Colon Rectum. 2003 Jan;46(1):48-50.
http://www.ncbi.nlm.nih.gov/pubmed/12544521?tool=bestpractice.com
[37]Zanoni EC, Averbach M, Borges JL, et al. Laparoscopic treatment of intestinal intussusception in the Peutz-Jeghers syndrome: case report and review of the literature. Surg Laparosc Endosc Percutan Tech. 2003 Aug;13(4):280-2.
http://www.ncbi.nlm.nih.gov/pubmed/12960794?tool=bestpractice.com
Patients with PJS are reported to have a significantly increased lifetime risk of developing intestinal and extra-intestinal malignancies compared with the general population; the cumulative lifetime risk has been reported at 93%.[1]van Lier MG, Wagner A, Mathus-Vliegen EM, et al. High cancer risk in Peutz-Jeghers syndrome: a systematic review and surveillance recommendations. Am J Gastroenterol. 2010 Jun;105(6):1258-64.
http://www.ncbi.nlm.nih.gov/pubmed/20051941?tool=bestpractice.com
The median age of onset of cancer is reported to be in the fourth and fifth decade of life. Lifetime risks for specific cancers include colorectal (39%), gastric (29%), small bowel (13%), breast (40% to 85%), pancreas (11% to 36%), ovary (21%), lung (7% to 17%), cervical (10% to 23%), and uterus (9%).[14]Boland CR, Idos GE, Durno C, et al. Diagnosis and management of cancer risk in the gastrointestinal hamartomatous polyposis syndromes: recommendations from the US Multi-Society Task Force on Colorectal Cancer. Gastroenterology. 2022 Jun;162(7):2063-85.
https://www.gastrojournal.org/article/S0016-5085(22)00151-2/fulltext
http://www.ncbi.nlm.nih.gov/pubmed/35487791?tool=bestpractice.com
Male children and adolescents, and, less commonly, younger adults are also at risk for testicular cancer.[16]Giardiello FM, Bresinger JD, Tersmette AC, et al. Very high risk of cancer in familial Peutz-Jeghers syndrome. Gastroenterology. 2000 Dec;119(6):1447-53.
http://www.ncbi.nlm.nih.gov/pubmed/11113065?tool=bestpractice.com
However, the evidence to support the data on cancer incidence, and, in particular, mortality, is extremely limited, being derived from a small number of observed individuals and families.[16]Giardiello FM, Bresinger JD, Tersmette AC, et al. Very high risk of cancer in familial Peutz-Jeghers syndrome. Gastroenterology. 2000 Dec;119(6):1447-53.
http://www.ncbi.nlm.nih.gov/pubmed/11113065?tool=bestpractice.com
It is unknown whether implementation of surveillance for the early detection or prevention of cancer is effective, although it is recommended.[14]Boland CR, Idos GE, Durno C, et al. Diagnosis and management of cancer risk in the gastrointestinal hamartomatous polyposis syndromes: recommendations from the US Multi-Society Task Force on Colorectal Cancer. Gastroenterology. 2022 Jun;162(7):2063-85.
https://www.gastrojournal.org/article/S0016-5085(22)00151-2/fulltext
http://www.ncbi.nlm.nih.gov/pubmed/35487791?tool=bestpractice.com
[19]Monahan KJ, Bradshaw N, Dolwani S, et al. Guidelines for the management of hereditary colorectal cancer from the British Society of Gastroenterology (BSG)/Association of Coloproctology of Great Britain and Ireland (ACPGBI)/United Kingdom Cancer Genetics Group (UKCGG). Gut. 2020 Mar;69(3):411-44.
https://gut.bmj.com/content/69/3/411.long
http://www.ncbi.nlm.nih.gov/pubmed/31780574?tool=bestpractice.com
[20]van Leerdam ME, Roos VH, van Hooft JE, et al. Endoscopic management of polyposis syndromes: European Society of Gastrointestinal Endoscopy (ESGE) guideline. Endoscopy. 2019 Sep;51(9):877-95.
https://www.thieme-connect.com/products/ejournals/html/10.1055/a-0965-0605
http://www.ncbi.nlm.nih.gov/pubmed/31342472?tool=bestpractice.com
[33]National Comprehensive Cancer Network. NCCN clinical practice guidelines in oncology: genetic/familial high-risk assessment: colorectal [internet publication].
https://www.nccn.org/guidelines/guidelines-detail?category=2&id=1436