Managing the Risk

Surveillance is Key

Once you have been diagnosed with Lynch syndrome it is important to develop a surveillance plan. This outlines the routine tests you should have, identifying what these tests are and how often they should be performed.

Sometimes your geneticist or genetic counsellor who helped you through the testing process will explain the required tests to you or it may be your GP or clinician that helps you develop this plan. The key thing is that you have a medical professional help you understand how best to protect yourself and make an appropriate plan for organising referrals and appointments.

Know your family’s cancer history when preparing a surveillance plan

What Should Be in the Plan?

This is a difficult question to answer as it largely depends on your family’s experience with cancer and the types of cancers that have been present. Your clinician, geneticist and/or surgeon are people best equipped to help answer this question. In Australia, the EviQ guidelines recommend two specific things:

The surveillance plan for most families will follow the standard National guidelines. In Australia, the current guidelines recommend two specific things:

Annual colonoscopy is recommended from age 25 (MLH1 or MSH2 gene mutation) or age 30 (MSH6 or PMS2 gene mutation), or 5 years younger than youngest colorectal cancer affected relative.

Here is a guide to the kind of care you should receive when undergoing your regular surveillance colonoscopy – Colonoscopy Clinical Care Standard Consumer Fact Sheet.

Prophylactic total abdominal hysterectomy with bilateral salpingo-oophorectomy (TAH-BSO) to be considered after childbearing is complete or by 40 years of age

In developing your surveillance plan, your clinician will consider your specific gene mutation and your family’s history of cancer and may include additional tests or preventative measures that are important to address your personal risk profile.

To help your GP and any other relevant specialists plan your personal surveillance plan, we have provided a link to some useful information and a valuable tool created by two leading groups of international researchers (The European Mallorca Group of researchers specialising in hereditary tumours and the International Society for Gastrointestinal Hereditary Tumours (InSiGHT).

InSiGHT - Lynch syndrome

Cancer Risks Gene Tool