Contact Linda: Linda@LivingLFS.org
My journey through this started in 1963 when I lost my older brother who was 8 years old to adrenal cortical carcinoma (adrenal cancer). It was determined that I also had it at the same time. After a bilateral adrenalectomy, which I survived, but we lost my older brother. My mother died in 1978 from a brain tumor after having bilateral breast cancers. My family knew something wasn’t right, but it wasn’t until 1990 that they had a name for it: Li-Fraumeni Syndrome (LFS). The doctors could test for it but there was no protocols or agenda to follow. My life was still always wondering when another cancer might hit. If you had a doctor who would listen, which I did, was the best you could in those early years.
It was in that same year (1990) I developed breast cancer and after waiting for the doctors to finally make a final decision, I had a bilateral mastectomy with reconstruction. It was a very hard year on my family to say the least. It was 5 years later that I lost my younger brother at the age of 29 to angiosarcoma.
We knew what my family had, but it didn’t help the helpless, lonely feeling that goes with having a rare disease and feeling like you are the only one. My husband and I were told about a symposium with other people with this disease. We couldn’t go to the first one, but when the second came around, we were there. That symposium was overwhelming to say the least. Living LFS was created by some great LFS survivors and we became a family-Living LFS. Sharing with these people who had become family was an enormous gift. It helped with the loneliness that came with the diagnosis. We found a group of people that are supportive, snarky, and always, always there for you.
If I can give back a fraction of what I have received from this family, I will be thrilled beyond words.