What is Lynch Syndrome?
Lynch syndrome is a genetic disease that dramatically increases the risk of colon and uterine cancer. It may also increase the risk of ovarian, stomach, brain, intestine, kidney, biliary tract and skin cancers.
This disease is usually inherited from one of our parents and can be passed down to our children.
We inherit one gene from each of our biological parents. Certain traits, like blue eyes, are called recessive, since they need 2 genes to occur. Other traits like brown eyes, are called dominant since they will be displayed with only 1 gene. Lynch syndrome is a dominant gene. If a person has Lynch Syndrome, they have a 50% chance of passing it to their children.
Knowing about Lynch syndrome is important for the patient and family to prevent future cancers. Our efforts are focused on diagnosing these cancers at the earliest stage. This prevents death and disability from the cancers or its treatment.
These recommendations are based on a review of current published medical literature. You should discuss individual screening with your personal physician. A more detailed review of the screening process is available in the physician section on this website.
| Colon | ||
| Non-Lynch | Lynch | |
| Initial Colonoscopy | Age 50 Or 10 years before a first degree relative with colon cancer or colon polyps |
Age 25 Sooner based on family history |
| Follow-up Colonoscopy | Every 5-10 years based on history. Every 1-5 years based on biopsy results |
Every 1-2 years until age 39. Every year at age 40 |
| Uterine – Endometrial | ||
| Non-Lynch | Lynch | |
| Pelvic Examination(medical exam of uterus and ovaries) | Every 1-2 years | Every year |
| Endometrial Biopsy(small tissue sample taken from the lining of the uterus) | Based on symptoms or examination | Every Year starting age 30-35 |
| Ultrasound (scan of the uterus and ovaries) | Based on symptoms or examination | Every year starting age 30-35 |
| Hysterectomy (removal of uterus) | Based on symptoms | Consider to prevent in high risk groups |
| Ovarian | ||
| Non-Lynch | Lynch | |
| Pelvic Examination | Every 1-2 years | Every year age 30 |
| Pelvic Ultrasound | Per symptoms / exam | Yearly age 30 Sooner per exam / symptoms |
| Oopherectomy (removal of ovaries) | Per symptoms / abnormal examination Optional if having a hysterectomy |
Consider for prevention in high risk groups Recommended if having a hysterectomy |
| Stomach | ||
| Non-Lynch | Lynch | |
| EGD (Scope of the esophagus and stomach) | Based on symptoms | Consider every 1-5 years when a colonoscopy is performed |
| CAT Scan | Based on Symptoms | Based on symptoms, but low threshold to order scan |
| Pancreatic | ||
| Non-Lynch | Lynch | |
| CAT Scan | Based on Symptoms | Based on Symptoms, but low threshold to order scan |
| Kidney | ||
| Non-Lynch | Lynch | |
| UA (Urinalysis or a test of the urine) | Based on symptoms or with a routine physical | Every year from age 25 |
| CAT Scan | Based on Symptoms or labs | Based on symptoms or labs with a low threshold to order scan |
What about insurance?
There are several types of insurance that a person with Lynch Syndrome must be concerned about.
- Health Insurance
The Genetic Information Nondiscrimination Act of 2007 (GINA) prohibits insurers from using genetic diseases in determining the insurability for patients with Lynch syndrome. However, if a person develops a Lynch syndrome related cancer, the GINA Act no longer applies since the condition is no longer pre-existing. It is possible that their insurance rates can go up or that they may not qualify for insurance based on the cancer diagnosis itself; it is unlikely the diagnosis of Lynch syndrome would affect insurance coverage. However, as of September 23, 2010, the new Health Care Reform act prevents insurers from excluding children with preexisting conditions from being covered by their family policy. Insurers have until January 1, 2014 to rescind preexisting-condition exclusions on adults. For this reason, it is very important to have a good health care policy, and to maintain this policy. For, if there is a lapse of coverage the next time you get insured there would be pre-existing conditions that would not be covered.
- Disability Insurance
The GINA act does not prevent insurance companies from using Lynch Syndrome in their underwriting for disability insurance. This may prevent a person from obtaining reasonably priced disability insurance once the diagnosis is made. For this reason, you may want to buy a disability policy before any genetic testing for Lynch Syndrome is undertaken. You could also buy an insurance rider that would allow you to increase the amount of insurance in the future based on current income without having to go through underwriting again. Lastly, you may also want to purchase a COLA rider. This will automatically increase the amount of disability based on the Cost of Living.
- Life Insurance
The GINA act does not prevent insurance companies from using Lynch Syndrome in their underwriting for life insurance. This may prevent a person from obtaining reasonably priced life insurance once the diagnosis is made. For this reason, you may want to buy a life insurance policy before any genetic testing for Lynch Syndrome is undertaken.
- Long Term Care
The GINA act does not prevent insurance companies from using Lynch Syndrome in their underwriting for long term care insurance. This may prevent a person from obtaining reasonably priced long term care insurance once the diagnosis is made. For this reason, you may want to buy a long term care insurance policy before any genetic testing for Lynch Syndrome is undertaken.
