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Genetic testing - because of my breast cancer & family history, I could have Li-fraumeni syndrome (LFS) which would make me high risk. Should I have the test?

Lizzy03
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I am in recovery from stage 3 breast cancer (HER 2 positive)..

 I have just had a genetic counselling appointment on Fri! and I think I'm in total shock. It's been two years since my treatment finished and I was sort of beginning to get back on track. I filled in a genetics form probably 18 months ago, then out of the blue I get an appointment. It turns out that because of  the type of Cancer I had and family history that I could have an extremely rare syndrome Li-fraumeni which would put me at high risk, if the test was positive of developing further cancers. This puts me in a difficult situation, should I have the test or not.. I  have three sons who this would also implicate,  if god forbid it came back positive. Does anyone have any insight into this, or advice? 

  • I'm sorry to hear that you could have the rare syndrome Li-Fraumeni which could put you at a higher risk of developing more cancers.

    Deciding whether to go ahead with the genetic testing must be very difficult, so if you'd like to talk things through with one of our cancer nurses they're available on 0808 800 4040, Monday - Friday between 9a.m - 5p.m. They're very insightful and will do all they can to support you whilst you figure out what to do.

    We do have some information about genetic testing for cancer risk on our website as well which you can ask our nurses about when you speak to them, but hopefully you will hear back from some of our members who have been in a similar position soon.

    We're thinking of you Lizzy03, and wishing you continued success with your recovery from your breast cancer.

    Kind regards,

    Steph, Cancer Chat Moderator

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