December 8, 2013 at 1:08 am #361
Hi I’ve just met with genetics and found out my family has LFS (long suspected). I don’t yet know if I have the gene myself – my question is, if I don’t have it does that mean my daughter definitely won’t have it? (She’s 10) or can it skip to her? Thank you for any advice as pretty anxious at the moment.December 8, 2013 at 5:17 pm #364
To the best of my knowledge if you are not carrying the defect gene then your daughter will be fine. Your genetics clinic will be able to answer any questions you may have.
KarenDecember 8, 2013 at 6:24 pm #365
Thank you Karen. The genetics dept have already ‘discharged’ me so am feeling a bit high and dry with nowhere to go. I will try and ring them Monday to double check.
SallyDecember 9, 2013 at 2:39 pm #366
Hi Sally. If the family history of cancer and the TP53 gene defect is on your side of the family and not on your partner’s, then your daughter should be fine.
In my case I don’t have the defect, it came from my first wife, so my son from my second marriage didn’t need to be tested.
PanDecember 9, 2013 at 11:38 pm #367
Thanks Pan. Yes it’s all my side of the family. 12 members with cancer – two survivors – ages spread from 13 – 55. I may have to wait for a year for waiting times for my brother to be tested and then me, to know. It will be a long year.
SallyDecember 10, 2013 at 1:00 am #368
Why that long? What part of the country are you in?December 10, 2013 at 2:21 am #369
South west. Took a year for me to just get my first appointment last week. My brother lives in another area and has to start from the beginning so could be another year apparently.December 10, 2013 at 3:41 pm #371
I would be really pushy and get my GP to demand a test immediately. Waiting a year is ridiculous. And has anyone talked to your family about the SIGNIFY trial? This is about regular screening for LFS patients.December 11, 2013 at 8:53 pm #373
I agree. I’m trying but my brother has to take the next step – and that’s hard for him – and it’s a bit out of my hands. No one has mentioned signify trial but I read about it. If we could just get that definite test sorted then we could start. Feels like I’m in limbo.December 12, 2013 at 11:16 am #377
I’m struggling to get my head round why it should take so long. A test costs something like £200 to the NHS, which really isn’t that high. I wonder if it’s possible to get the tests done privately?December 13, 2013 at 1:53 am #380
I have asked the same question. The consultant said it wouldn’t make any difference. Have you moved any further with the charity set up Pan?December 14, 2013 at 11:43 pm #383
Well, we’re now formally registered and able to accept gift-aided donations. We’ve got agreement with some major research groups to build an official TP53 Registry. But it still feels like there’s so much to do.
You mentioned in one of your posts that you’ve got experience of charities, and I’d be really interested to hear any ideas or suggestions you might have. We’re a small group and really we’ve got so much to learn…December 28, 2013 at 2:55 am #385
We can talk about it. I think I emailed my email address to you.
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