My name is Marina, I am 43 years old and I discovered I have the syndrome in 2019 after my mother's passing at the age of 65 from pancreatic cancer. After her third cancer diagnosis, she underwent genetic profiling and found out she had the syndrome. Due to her diagnosis, I underwent testing, which confirmed
I discovered the syndrome in January 2021, after my uncle underwent genetic testing in an attempt to find a better treatment for the cancer he was dealing with. Thus, shortly after receiving the result that I also had the syndrome, at the age of 24, I decided to undergo preventive mastectomy. It was a difficult
I discovered Li-Fraumeni syndrome in 2017, after breast cancer at the age of 20. The oncologist requested genetic testing, and I was fortunate to receive the diagnosis from a very humane specialist, who has been accompanying me ever since, always providing clear and accurate information about the syndrome. Today, 7 years later, I'm doing
I lost my mother to cancer in 2018. She had two types: lung carcinoma and brain astrocytoma. They mentioned it could be genetic at the time, but we didn't give it much importance. I had lung adenocarcinoma at 38 years old in 2021, during the COVID period, so it seemed quick. I didn't need chemo
I discovered LFS in 2022 after treatment for advanced breast cancer! I needed to take the test because I lost many paternal relatives to cancer, none of them had the same cancer as mine. I am in remission, taking daily medications at home, and receiving quarterly injections to control hormones. I’ve learned To take
I discovered the syndrome through genetic testing after battling breast cancer and undergoing bilateral mastectomy. Today, I find myself navigating new paths, undergoing screening exams. It has taught me a valuable lesson: never to give up, to summon strength, believe, and always have faith in God.
I discovered Li-Fraumeni syndrome one week before quadrant surgery for breast cancer. I found out about the cancer in April 2023, underwent chemotherapy, and reduced it to the point where only the quadrant would be removed. However, after genetic testing, everything changed. Today, I'm undergoing immunotherapy, and I believe it will continue until October. I
I discovered that I have Li-Fraumeni syndrome in 2021. At the time, my mastologist asked me for a genetic test due to the extensive history of cancer in my family (mother, uncle, grandmother, among others). I have never had any type of cancer. In 2022 I chose to perform a preventive bilateral mastectomy.I follow
Larry Ingrassia’s, A Fatal Inheritance, is the most comprehensive biography of Li-Fraumeni syndrome for the lay reader to date. Though this book reads like a riveting medical mystery, it is also an informative resource for medical students and providers, genetic counselors, and families riddled with early onset, rare, and/or multiple cancers, and even the
Culture Matters: Individuals affected by LFS reported a wide range of experiences with this rare and poorly understood condition. Limited availability of information often contributed to delays and denial in diagnosis. Their accounts highlight critical yet underexplored issues—such as guilt and helplessness—that warrant urgent attention. Future policies should be informed by these perceived needs
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