Forum Replies Created
Sue, print off the information about the US/Canadian monitoring protocol that was recently trialled. I wrote about it here:
It might help in persuading your doctors to take active surveillance more seriously.
And please do keep us posted on how things are going with your husband.
Thank you for sharing your story. There are so few of us that each time I hear of another LF family, I feel like my family has grown.
Verity, that’s so good to hear you say that. If that’s all we manage to acheive than it’s still positive – we know what it’s like to feel isolated and alone going through the system and so helping people break through that isolation is so important…
Thiery, I am so sorry to hear about your family history. It is so hard to hear how much you have all suffered. But it is good that you are still fighting.
And if you get stuck with English, remember: [i]Google translate est votre ami[/i]
In England things are not so good with LFS tracking. I have written an article on a new protocol from North America here: http://www.tp53.co.uk/index.php/lfs-surveillance-protocol
In this new protocol the periodicity of scans is much better than 1 or 2 a year. Maybe you should print this and take it to your genetics specialist in Nantes.
For your cancer are you having chemo now or other treatment?
Bonjour et bienvenue, Thierry.
I’m sorry for all the problems you had joining the forum.
Can you tell us about the situation with LFS in France? Do you have much support there?
Yes, definitely. Alternatives to radiotherapy are worth knowing about!
Thanks for the link, Karen. I must admit that this is still on my to do list…
Hi Verity. Thanks for posting your story.
Who was it that came up with the idea of having proton therapy for your son? George had radiotherapy for his rhabdomyosarcoma and that was almost certainly the cause of his basal cell carcinoma 11 years later. We also think it might have been a cause of the osteosarcoma that he had as well, but as you know you can never be sure of these things. It’s great that you managed to get it done on the NHS too.
And it sounds like you’ve got a very active surveillance program going on too – this is a big topic and I know that other people on this forum are concerned about getting more than just a ‘wait and see’ approach from their doctors. Did you genetics team suggest it?
Thanks for sharing that with us. Getting the LFS diagnosis is scary, but at least now you know what was behind all the cancers in your family. In terms of screening protocols, there are no standard ones in the UK as far as I know. The main thing for now is to make sure that you get priority when any odd symptoms crop up. This is what the Institute of Cancer Research recommend.
The good news though is that in Canada and the United States they’ve just trialled a new and more active protocol for LFS and it’s had some really positive results. I’m working on an article about it at the moment, which I hope to publish on this site soon. In the meantime I’ll email you a paper that you can take to your doctor.
And please do keep us updated.
Welcome to the forum. The hope is that we can use this site so that people affected by Li Fraumeni or other TP53 condition can get together to share info, support and to raise the profile of LFS. I know that you guys in the US are in the process of starting a Li Fraumeni Association, which is great news which we’ll be watching closely.
In the meantime, please feel free to use the forum to post messages about yourself and what you’re doing.