Devoted to a world without inherited cancer

Reference

A qualitative study to assess the psychological experiences and coping strategies of families affected with Li-Fraumeni syndrome in the Indian population

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

Family communication challenges of adolescents and young adults with Li-Fraumeni syndrome: Implications for psychosocial care

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

Psychological Impact of TP53-Variant-Carrier Newborns and Counselling on Mothers: A Pediatric Surveillance Cohort

This study examined anxiety and depression in mothers of newborns carrying the TP53 p.R337H variant in southern Brazil. Mothers of carriers showed higher anxiety shortly after genetic testing, but anxiety decreased within four months. Depression levels did not significantly change. Ongoing psychological support may be needed for mothers with existing mental health concerns. (2022)

Parent decision-making around the genetic testing of children for germline TP53 mutations

Despite limited empirical evidence on the benefits and risks of TP53 testing in childhood, most parents in this study readily chose testing and identified multiple benefits. The authors conclude that, within the context of a clinical Li-Fraumeni syndrome diagnosis, parents should continue to be offered TP53 testing for their children, receive clear counseling on potential

Li-Fraumeni syndrome: report of a clinical research workshop and creation of a research consortium (and the LFS Association)

On November 2, 2010, the National Cancer Institute convened a workshop at the National Institutes of Health in Bethesda, Maryland, bringing together clinicians and scientists, as well as individuals from families with LFS, to review the state of the science, address clinical management issues, stimulate collaborative research, and engage the LFS family community. This

By |2026-01-30T16:47:42-05:00October 20th, 2012|LFS News, Papers & Research Literature, Reference|0 Comments

Monograph on Li-Fraumeni Syndrome

Monograph on Li-Fraumeni syndrome written by Dr. David Malkin and edited by Arnold Levine:  In 1969, Li and Fraumeni described a notable cancer predisposition syndrome. Using a classic epidemiological approach, they conducted a retrospective review of 280 medical charts and 418 death certificates of children diagnosed with rhabdomyosarcoma in the U.S. between 1960 and 1964.

By |2025-03-12T16:11:46-04:00April 2nd, 2011|Papers & Research Literature, Reference|0 Comments

The history of p53

By Thierry Soussi The history of p53 and the different interpretations of its role in cells highlight how scientific paradigms can shape research fields. It also provides valuable lessons for young scientists looking for an engaging and impactful research topic.  (October 8, 2010)

By |2025-09-17T13:24:57-04:00October 8th, 2010|Papers & Research Literature, Reference|0 Comments
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