LFS Association

I was diagnosed with Li-Fraumeni syndrome after a severe and very rare pancreatic cancer. I was referred to an oncogeneticist, and the test showed a mutation in the TP53 variant. I had a leiomyosarcoma in the mesentery, and the tumor lodged in the pancreas. Today, I am doing well and feel very calm about taking

My late son, Raphael Lee, was first diagnosed with rhabdomyosarcoma on his left forearm in 2008 when he was 8 months old. He underwent one round of chemotherapy before surgery to shrink the tumour. After surgery, he had to go for radiotherapy and another round of chemotherapy to eliminate any remaining tumour cells. In

In December 2022, my mother was diagnosed with retroperitoneal leiomyosarcoma after experiencing severe abdominal pain. This led to the discovery of a hereditary cancer syndrome in our family. My cousin had been diagnosed with the syndrome in 2018, thought to be inherited from her mother's side. However, it was a shock to find out

Long before we had ever heard of Li-Fraumeni syndrome, cancer was cutting a swath of destruction across the generations of my family. When my father died of a brain tumor at 37 years of age in 1966 everyone agreed it was tragic, but no one had any real answers as to how such a thing

Fátima Eliane, 38 years old, from São Paulo, Brazil. She had breast cancer at 31 years old and now she is treating a glioblastoma. The genetic test it was crucial in figuring out why I had aggressive cancer at an young age. I have what the doctors called “De Novo” and my kids didn't inherit

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

My name is Tara Agnew and I was 26 years old when my life turned upside down. I thought my life and my future got ripped out from under me – but I was wrong. My 4-year-old nephew and I were playing one day when he accidentally elbowed me in my left breast. It hurt,