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Optimizing shared decision-making for risk-reducing mastectomy in women with Li–Fraumeni syndrome using patient-reported outcome measures

Li-Fraumeni syndrome (LFS) researchers in Brazil studied factors in determining quality of life issues for women living with LFS who consider risk-reducing mastectomies – one of the few available options to reduce cancer risks in women beyond surveillance.  When reviewing this study, keep in mind that the majority of participants in the study carry the

Attention Young Adults between 18-29 living in the US of A!

Would you like to participate in a research study at the National Cancer Institute that is developing a mental health resource for young adults with Li-Fraumeni syndrome? Participants will receive a $150 electronic gift card for their participation. Check out this link to see if you are eligible: https://bit.ly/YA-MSC-Study. Scan the QR code or contact

By |2025-06-03T13:27:00-04:00June 3rd, 2025|LFS News, Study|0 Comments

LFSA Co-Founder Debbie Soprano Honored by Boston Children’s Hospital

The Li-Fraumeni Syndrome Association (LFSA) is proud to announce that Co-Founder and Board Member Debbie Soprano has been recognized with the 2025 Employee Community Volunteer Award from Boston Children’s Hospital. The award honors Debbie's outstanding commitment to volunteerism through her work with LFSA, where she currently serves as Marketing and Development Chair. Soprano, who

By |2025-06-02T16:59:31-04:00June 2nd, 2025|LFS News|0 Comments

Annual Whole-Body Imaging Contributes to Early Cancer Detection in Patients With Li-Fraumeni Syndrome

Researchers at the Dana-Farber Cancer Institute concluded that annual whole-body MRIs contribute substantially to detection of asymptomatic localized cancers among individuals with Li-Fraumeni syndrome (LFS).  Though interval cancers remain common, Dr. Asaf Maoz, the author of the study, stated that a whole-body MRI serves as a crucial test modality for individuals with LFS that should

By |2025-06-03T13:57:14-04:00June 2nd, 2025|LFS News|0 Comments

Seeking Participants for the INFORM Research Study

Dana-Farber is leading an IRB-approved study that will screen for many of the deadliest cancers with a first-of-its-kind blood test. This test will predict the most likely origin of the cancer signal to help guide the next steps for diagnosis. Note that this will not detect all cancers, and false negatives and false positives

By |2025-03-17T12:36:03-04:00March 17th, 2025|LFS News, Study|0 Comments

Update on Cancer Screening Recommendations for Individuals with Li-Fraumeni Syndrome

Just published by American Association for Cancer Research (AACR) is the updated version of the “Toronto Protocol,” the widely recognized screening recommendations for Li-Fraumeni syndrome patients, worldwide.  Lead by Dr. David Malkin (LFSA Medical & Scientific Board Member and Co-chair of LFSA – Canada), this new perspective provides an up-to-date clinical overview of LFS

Li-Fraumeni syndrome: predicting cancer risk more precisely

The two MHH researchers Lucas John Müntnich and Professor Christian Kratz refer to the cluster analysis of the study, according to which cancer-free survival depends on the classification of the underlying variant. Copyright: Karin Kaiser/MHH. (With permission.) A new form of cluster analysis enables the development of personalized cancer screening tests.  As presented

Radiotherapy results in decreased time to second cancer in children with Li Fraumeni syndrome

UK researchers conducted a retrospective case-series study of four children diagnosed with solid cancers at age 16 or younger, aiming to assess the time to and survival following a second cancer diagnosis. In those who received radiotherapy for the initial cancer, the median time to a second primary cancer diagnosis was 13.3 years, with a

Clustering of TP53 variants into functional classes correlates with cancer risk and identifies different phenotypes of Li-Fraumeni syndrome

High resolution clustering of TP53 variants into functional classes  correlates with cancer risk among germline variant  carriers and identifies different phenotypes of the Li-Fraumeni Syndrome. Emilie Montellier, PhD (1), Nathanaël Lemonnier, PhD (1), Judith Penkert, MD (2), Claire Freycon, MD (1,3,4), Sandrine Blanchet, MSc (1), Amina Amadou, PhD (1,5), Florent Chuffart, PhD (1), Nicholas Fischer,

Liquid Biopsy for Li-Fraumeni Syndrome Cancer Screening: Survey Study

We invite you to participate in a survey about your experiences receiving cancer screening for Li-Fraumeni Syndrome (LFS), and your thoughts about an upcoming clinical trial for people with LFS.Liquid biopsy is a promising new cancer screening technique that can detect signs of cancer in a blood sample, and researchers are planning a study adding

By |2025-01-13T11:07:07-05:00January 13th, 2025|LFS News|0 Comments
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