P53

Cpratt98

I'm a three year survivor of Triple Positive Stage 1 breast cancer after having received a double mastectomy and chemotherapy. I have just had a genetics panel done indicating that I have a genetic variation, likely pathogenic, in the P53 gene. This predisposes me, and potentially my kids to a variety of cancers. I'm very concerned with the long-term effect these results will have on my children and their ability to make life decisions without being guided by a fear of cancer, Does anyone have experience with P53 and LFS syndrome? Thanks

Moderators

Hi Cpratt98, and welcome to BC.org! We hate that you had to join us for this reason, but we're glad you found this wonderful community full of information and support!

Hopefully soon you'll get real answers but, until then, you may find some members who can help in the Topic: P53 Genetic testing.

Hope this helps!

The Mods

elabee

Hi Cpratt98,

I (along with my identical twin sister) have Li-Fraumeni syndrome. I was diagnosed with Stage 2b breast cancer in 2013. One month after starting chemo, I was diagnosed with LFS.

It is a very scary diagnosis especially since there isn't a lot of information. The information that does exist can be discouraging. However, LFS is not a death sentence. In knowing about it, it means you can be extra vigilant. It also means that your doctors will watch you and your children carefully.

Some additional good online resources are:

https://www.facebook.com/groups/90503981891/?ref=b... (this is a private facebook group and the moderators have been busy the last few weeks so it may take a little time to get approved)

http://lfs.cancer.gov/

http://lfs.cancer.gov/

http://livinglfs.blogspot.com/

For those of us with LFS, we follow the Toronto Protocol or the MD Anderson Lead Protocol. It's a highly personal and difficult decision to test your children. However, even though a lot of folks have mixed feelings about having their children tested, for those who do, it seems that it gives them some piece of mind and some control over LFS.

I wish you the best of luck. It's not an easy road to travel, but you're not alone.