Risk Management for Lynch Syndrome for Individuals without a Related Cancer

These recommendations are for people who have not had a cancer that is related to Lynch Syndrome but have a gene fault that causes increased risks of the cancers related.

The cancers related to Lynch Syndrome are:

• Colorectal (bowel)
• Endometrial (also called uterine – the lining of the womb)
• Ovarian
• Gastric (stomach)
• Urothelial (urinary tract – the passages that transport urine to be excreted)

However, not everyone will necessarily need surveillance or risk reducing surgery for all these systems as it depends on the specific gene involved and your family history.

Surveillance

Colorectal Cancer Risk (large bowel)
Colonoscopy is the surveillance recommended and is effective at detecting changes in the bowel that might lead to a cancer growing. These changes can usually be removed during the colonoscopy with no further treatment needed. If any changes are found it may affect the frequency of your surveillance.

Colonoscopy can be recommended on an annual basis. This is usually recommended to start at either age 25 or 30 depending on the gene. (MLH1/MSH2 gene faults generally can have a slightly younger age where risk starts whereas MSH6/PMS2 has a slightly older risk onset.)

BUT it is dependent on the age of the youngest person in your family was diagnosed. This will affect when you are recommended to start surveillance.

Gynaecological Cancer Risk
Surveillance is not recommended for the risks of endometrial and ovarian cancer. Substantial research into its use has not found any benefit of having vaginal ultra sound scans, biopsies of the endometrium or CA125 blood measurements.

This means that risk reducing removal of the endometrium, ovaries and fallopian tubes is recommended – a total hysterectomy, both fallopian tubes and ovaries. Obviously this can only be done when you are certain that you have completed your family, so around the age of 40 has been recommended as the age to consider this, unless there is a history of younger onset in your family.

Also, HRT must be considered after having your ovaries and fallopian tubes removed. HRT is needed to provide the necessary hormones you need for your bone and cardiovascular health. This can be taken until the age of normal menopause (average is 53 years).

Gastric Cancer (stomach)
Surveillance for your stomach may be recommended 2 yearly if there is a history of this type of cancer in your family.

Similarly, it may be recommended if you are from an ethnic background known to have a higher population risk than others. These include those with Chinese, Japanese, Korean ethnicities and some with certain South American ethnicity.

However, it is important to know that gastroscopy has not been shown by research to be useful for high risk families.

Urothelial (lining of urinary system)
This is only relevant for you if there is a history of this type of cancer. However, there is not research to show if it is effective to do regular specific urine tests (urine cytology).

Therefore, it is important to discuss any symptoms with your doctor promptly and for these to be investigated. However, this is important for all and any symptoms.