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This topic contains 6 replies, has 4 voices, and was last updated by  SKH 5 years ago.

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  • #506

    HannahRD
    Participant

    My sister told me a couple days ago that she’s been diagnosed with LFS, through genetic tests–TP53 mutation, not the CHEK2 one). She had breast cancer when she was 21 (she’s 35 now and has two kids). Our dad had prostate cancer at 59. His mother died from pancreatic cancer before she was 50, and her brother died from the same about 20 years later.

    I was due to see my breast care team doctor in January, and upon phoning them to let them know about her diagnosis, they’ve bumped my appointment up to the end of this month.

    I’m 36, I have two kids. My partner and I were about to start trying for a baby together this month.

    Now we’re feeling that we’ve got more to think about.

    Do you think I will be offered genetic testing for it? I see that it can take a few months to get results. If I have the mutation, will my kids be offered testing, or will they be treated as though they have it and not be offered testing until they are much older (they are 6 and 9)?

    Thanks

    #507

    Pan
    Keymaster

    Hi Hannah. Sorry to hear about your family history with LFS.

    You should be tested as a matter of course now that your sister has it, as will any other siblings, and any children that your sister has. In terms of getting your children tested, if you don’t have the TP53 mutation then there’ll be no need to have your children tested. So everything hinges on your test result. Are you in the UK?

    Pan

    #508

    HannahRD
    Participant

    Thanks for the reply.

    I’ve seen that it’s an autosomal dominant mutation, so understand that if I don’t have it, neither will my offspring. It’s not been clear if my kids will be offered testing if I have it or if we’d have to push for it if we want it. It looks like it might fall into the case if testing prenatally would have been fine, but the way the legal ethics line up, they may need to wait until they can say they want it done?

    We’re in Devon.

    My sister is in California.

    It seems there are differences in how things are done there vs here with this syndrome.

    Thanks again.

    #509

    Pan
    Keymaster

    Normally you’d see a genetics counsellor who will discuss with you the options on testing and the pros and cons of what to tell your children. Personally, I have yet to meet a parent who is positive for LFS not wanting to get their children tested immediately.

    #510

    HannahRD
    Participant

    So they will be offered it if I’ve got it. That’s good to know. It’s unclear from looking around online.

    Thanks 🙂

    #511

    PaulW
    Participant

    Welcome to the forum Hannah.

    It’s not a place anyone wants to be but, thanks to the efforts of Pan, it does provide a much needed resource to those of us with questions on LFS – something that wasn’t available before.

    Very best regards,
    Paul.

    #512

    SKH
    Participant

    Hi Hannah
    Sorry to hear about this. It may not be as straightforward as you think in Devon – they are blocking us getting tested at the moment – they see it as opening a can of worms – and that’s just at the adult level. I’ve been trying to resolve this for two years. I hope you have more success but you will need to push them hard.

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