I have risky genes, what now?

 

If you are reading this page you may have already been told you have a genetic mutation that greatly increases your risk of cancer. But how much and for what cancer?

Risky genes are complicated

It is no longer just about BRCA1 and BRCA2, but to date mutations in those genes are the most commonly found and the ones we know the most about.

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Within each risky gene there can be hundreds of mutations that have different levels of cancer risk .  Unfortunately, because the science is so new we only have long-term data on the first two genes that were discovered, BRCA1 and BRCA2, and we cannot yet pinpoint a person’s individual risk based on a their specific mutation.  Because of this, cancer risk is reported in ranges, but there is no widespread agreement on what those ranges are.  To make it even more complicated, risk ranges may be reported differently depending on the region you live in.

It is important to remember when looking at cancer risk averages, a risky gene carrier may fall above or below the ranges reported.

Below are some examples of risk range tables and their differences:

Table_Cancer Risk Antonis

Table_Cancer Risk Meta analysis

Table_Cancer Risk Study

Prevention

Once you have received your personalized cancer risk assessment estimate from a medical professional, you will need to decide what course of action to take.  Thankfully, there today there are prevention options that our parents and grandparents didn’t have.  However, they are drastic and life-changing.

Risk Reduction graphic

There are so many tough decisions to make.  Will you start increased surveillance? Will you consider preventative chemotherapy or surgery? Now? When? Who will you tell? Do other family members need to know they may also carry a risky gene?

Learn more

Learning you are a risky gene carrier can be very overwhelming. If you haven’t already, you may want to get connected to others like yourself so you don’t feel so alone and can get some help with these very difficult questions. If you want to chat about where to go next or how you can get involved, please contact us.

 

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