Managing Your Cancer Risk
Surveillance
Surveillance is defined as preventative measures including diagnostic procedures or imaging, history, and physical exams to reduce one’s risk of developing cancer or detecting cancer early and stopping it from progressing. Surveillance is essential for preventing already high-risk Lynch syndrome patients from developing colorectal, ovarian, endometrial, and other cancers. Studies have shown that patients with Lynch cancers actually have higher survival rates than those who are diagnosed with sporadic cancers1. This may be due to the fact that Lynch Syndrome patients undergo more frequent screening before the cancer advances. Hence, it is extremely important for all patients to follow protocol regarding surveillance testing.
The National Comprehensive Cancer Network (NCCN) provides specific guidelines regarding cancer surveillance for average-risk, increased-risk, and high-risk populations. Below are proposed guidelines by NCCN for Lynch Syndrome patients2. These guidelines serve as a gold standard for prevention and detection of various cancers in Lynch Syndrome patients and are used by many physicians.
Colorectal Cancer Surveillance
Lynch syndrome patients have an increased risk (ranging from 52%-82%) for developing colorectal cancer. After diagnosis of Lynch Syndrome, a colonoscopy is recommended 2-5 years prior to the youngest diagnosis in the family or between the ages of 20 to 25 (whichever comes first). Per NCCN guidelines, a repeat colonoscopy should occur every 1-2 years.
Continued Surveillance After Diagnosis and Treatment of Colorectal Cancer:
After diagnosis and treatment of cancer, patients are encouraged to undergo follow-up surveillance. Surveillance works to improve patient outcome by identifying any cancer recurrence early before the cancer has advanced.
Surveillance methods include CEA tests and diagnostic imaging tests. A CEA test is a blood test used to monitor the growth of cancer. Diagnostic imaging tests such as MRI and CT scans provide a three dimensional view to detect any abnormalities. The National Comprehensive Cancer Network provides guidelines for patients in remission from Stage II or III colorectal cancer3 . This includes blood testing (CEA) every 3-6 months for 2 years and every 6 months for 3 years after that. There are also recommendations to continue CT scans every 6 to 12 months for 5 years. A routine colonoscopy is usually conducted one year after surgery and later procedures will depend on previous results.
Endometrial Cancer Surveillance
- Women with Lynch Syndrome are at an increased risk of up to 60% to develop endometrial cancer. This cancer requires an endometrial biopsy as a diagnostic procedure and is suggested to start at the ages of 30-35 for patients with Lynch Syndrome. Trans-vaginal ultrasounds may also be used as a surveillance method per physician’s recommendations.
Ovarian Cancer Surveillance
- Women with Lynch Syndrome also have a heightened risk to develop ovarian cancer. The risk varies per genetic mutation and age. The NCCN has determined that data does not support annual ovarian screening for women with Lynch syndrome. Although, transvaginal ultrasounds and serum CA-125 testing are screening methods available for ovarian cancer among post-menopausal women.
- Hysterectomy and oophorectomy are also options to decrease the high chance of developing gynecological cancers among women with Lynch syndrome.
Surveillance for Other Cancers
- Lifetime risk for gastric cancer, small bowel, and duodenal cancer varies widely among Lynch syndrome patient populations and there is no clear data to support screening for these cancers. However, for individuals with a family history of Lynch related gastric cancer, screening should begin at age 35 and continue every 2-3 years. Routine screening includes an EGD or esophagogastroduodenoscopy with extended duodenoscopy and polypectomy. Baseline gastric biopsies may also evaluate for H. Pylori and help treat the infection early on.
- Risk for urinary tract, pancreatic, and brain cancer is elevated among patients with Lynch Syndrome. Annual urinalysis starting at age 25-35 may be used to screen for urinary tract cancer. There is a lack of screening methods for pancreatic cancer and brain cancer, but annual physical and neurological examinations beginning at 25 to 30 years old may be considered for brain cancer.
Works Cited
1de Jong, A. E., Hendriks, Y. M., & Kleibeuker, J. H. (2006). Decrease in Mortality in Lynch Syndrome Families Because of Surveillance. Gastroenterology, 130(3), 665-671.
2Provenzale, D., Gupta, S., Ahnen, D. J., & Blanco, A. M. (2018, July 12th). NCCN Guidelines:Genetic/Familial High-Risk Assessment: Colorectal, 1.2018. Retrieved from National Comprehensive Cancer Network: https://www.nccn.org/professionals/physician_gls/pdf/genetics_colon.pd
3Do Frequent Follow-Up Tests Benefit Colorectal Cancer Survivors? (2018, June 20th). Retrieved from National Cancer Institute: https://www.cancer.gov/news-events/cancer-currents-blog/2018/colorectal-cancer-follow-up-testing
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