living with li fraumeni

[kjames]

hi can anybody inform me, what is the oldest known age for somebody living with li fraumeni but not yet to have cancer?
I am 30 yr old male and have the gene mistake, I lost my sister aged 13, my brother aged 18 and my mother aged 42. I have 2 children but have chosen not to have them checked for li fraumeni for the simple reason of, if they were to have the mistake, we have been told that its just come and see us if you see anything unusual.

[PanP]

Hi. I don’t think there is an oldest age really. There are some people with a TP53 mutation who go their whole lives without ever getting a cancer, and others, as you know from your own family, who are struck very early. We just can’t tell…

Are you in the UK?

Pan

[kjames]

hi, thanks for your reply. yes we live in wales.
What screening is available? only that i get offered to go to hospital every year for a physical examination and just sent on my way feeling like it was a waste of time

[PanP]

Screening really is a post code lottery in the UK. There is no generally adopted standard. Some clinics seem to do no screening at all, and in other places there’s an active screening program for LFS patients.

You might want to find out about the SIGNIFY trial and see if you can persuade your clinic to sign you up for it: http://www.anticancer.org.uk/2012/08/signify-new-uk-lfs-study.html

Some of the people on this forum have already been signed up for it.

[kjames]

Hi again just followed your link. I think this is something that i would be very interested in and will be in touch with my contact at genetics.

kind regards
Kevin James

[PanP]

Good luck – and keep us posted!

Pan

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