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
Medulloblastoms are known to be associated with Li-Fraumeni syndrome. NIH National Library of Medicine: While leukemias are the most common type of malignancy affecting the pediatric population, brain tumors are the most common solid tumors in this population. Medulloblastoma is the most common malignant brain tumor in children, constituting nearly 20 percent of all pediatric
Adolescents and young adults (AYAs) reported family communication difficulties related to LFS that negatively affected their emotional well-being. Stress related to LFS and major life changes both contributed to and were worsened by these family challenges. Clinicians can support AYAs with LFS by asking about family communication, responding with empathy, offering resources to help with
From Amazon: The most comprehensive guide available on hereditary cancers, from understanding risk, prevention, and genetic counseling and testing to treatment, quality of life, and more. Up to 10 percent of cancers are caused by inherited mutations in specific genes. Finding out that you or your loved ones may be at increased risk of developing
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