Lynch Syndrome International




Colonoscopy: Annually, beginning at age 20-25, or ten years younger than the earliest age of diagnosis in the family, whichever comes first. NCCN guidelines (NCCN Version 2.2013) state two to five years prior to the earliest age of diagnosis in the family,  and to repeat every 1-2 years.

NCCN Guidelines reflects:  There are data to suggest that aspirin may decrease the risk of colon cancer in LS, however, at this time, the data are not sufficiently robust to make a recommendation for its standard use.

For those with MSH-6, NCNN guidelines (NCCN Version 2.2013) state every two to three years beginning at age 30 - 35 and every two years until age 40 and then every one to two years.  NCCN does not provide management guidelines for the extracolonic cancers of those with MSH-6.  They advise prophylactic hysterectomy and oopherectomy following childbearing years.

For those with PMS-2, NCCN guidelines (NCCN Version 2.2013) state colonoscopy to begin at age 35-40 and continue every two to three years until age fifty.  At that time, colonoscopy screening should be followed every one to three years.  For those with PMS-2, NCCN guidelines do not provide management guidelines for the extracolonic cancers of those with PMS-2, including recommendation for endometrial cancer.

Endometrial Sampling: Annually, beginning between ages 30-35

NCCN Guidelines reflect despite no current scientific evidence, annual endometrial samplings may be useful in select patients. (NCCN Version 2/2011)

Transvaginal Ultrasound: For Endometrial and Ovarian Cancer: Annually beginning ages 30-35 NCCN guidelines determine this is at the clinician's discretion.


CA-125: For Ovarian Cancer. While there may be times screening can be helpful, NCCN has determined data does not support routine ovarian screening for LS. (NCCN Version 2/2011)

Ultrasonography With Cytology: Annually, beginning at age 25-35 (NCCN Guidelines, Version 2.2011 refer to an "annual urinalysis.")

Gastroscopy: NCCN guidelines have now been revised.  "There is no clear evidence to support screening for gastric, duodenal, and small bowel cancer for LS.  Selected individuals or families or those of Asian descent may consider EGD with extended duodenoscopy (to distal duodenum or small jejunum.)"

Colon Resection: For individuals with active colon cancer that cannot be removed by colonoscopy. Subtotal colectomy favored with preferences of patient actively elicited. The National Comprehensive Cancer Center Guidelines recommend a total abdominal colectomy with ileorectal anastomosis in the event of adenomas not amenable to endoscopic rescection. (NCCN Guidelines Version 2.2013)

Hysterectomy and/or Oopherectomy: Discuss as an option after childbearing years to deter the high risk of gynecological cancers.  NCCN's revised guidelines have listed this as a guideline for all but those with PMS-2 mutation.


Dermatological Examination: For Muir-Torre (lesions of the skin including sebaceous adenomas, sebaceous epitheliomas, basal cell epithelioma with sebaceous differentiation, sebaceous carcinoma and squamous cell cancer (keratoacanthoma type.)  NCCN has not addressed Muir Torre.


Other tests may be ordered at the discretion of the Clinician to include screenings for pancreatic cancer, CNS cancer, prostate cancer, liver cancer, gallbladder cancer and renal-pelvic cancer.  NCCN has added a statement about pancreatic cancer: "Despite data reading an increased risk for pancreatic cancer, no effective screening techniques have been identified, therefore, no screening."


NCCN has added the following regarding breast cancer:  "There have been suggestions that there has been an increased risk for breast cancer in LS, however due to limited data, no effective screening techniques have been identified, therefore, no recommendation is possible at this time."




Updated: 6/22/2013