Li-Fraumeni Syndrome (LFS) impacted our family in an unexpected way. At the young age of 35, my husband’s sister was diagnosed with breast cancer. Due to a family history of cancer, her oncologist suggested testing for LFS, a hereditary syndrome that predisposes people to multiple cancers. In 2020, we found out she had LFS and that Aaron, my husband was eligible to be tested for the gene.
After a long wait, in December 2021, Aaron was also diagnosed with LFS. At that time we knew there was a 50/50 chance that one of our beautiful children– or possibly both– may have it. In March 2022 we got the results and unfortunately both girls also have Li-Fraumeni Syndrome.
This journey is a long one with many ups and downs. It’s not an easy diagnosis. Many say, “At least you know, and can get the testing.” This may be true but it’s also the unfortunate reality that every headache or lump could mean something more.
We are incredibly fortunate to be a part of cancer detection programs through BC Cancer and BC Children’s hospital. Aaron and the girls have regular screenings to catch any early warning signs, and thankfully at this time all are cancer free. We are so grateful for our family doctor and the pediatric oncology teams at BC Children’s and Victoria General Hospital, all of whom patiently address our (many) questions and concerns.
LFS is scary and unpredictable, but it doesn’t mean we need to stop living our lives. The girls have wonderful supportive teachers, love to explore the outdoors, write stories, swim, and play with friends. Despite the anxiety LFS has brought into our lives, we do our best to appreciate every cancer-free day we have together as a family.
