The p53 Song by Roland Houben

 Who knew there was a song about p53? Many thanks to Roland Houben for this catchy tune about our favorite tumor suppressor. Post by Living LFS.

MOSAICISM in Li-Fraumeni Syndrome

We have this question pop up frequently in our support group. What is mosaicism? On a very basic level, genetic mosaicism means a person has mixture of cells with different genetic make up. LFS Mosaics have some cells that have Tp53 mutations and some cells that do not, where as someone who inherits LFS from […]

Four Stories of LFS and Pediatric Adrenocortical Carcinoma, Rare Hope

-Adrenocortical tumors are very rare, seen in about 0.2 percent of all childhood cancers.-More girls are affected by adrenocortical carcinoma than boys.-It is usually seen in children between  the ages 1 and 4 years old-The tendency to develop adrenocortical tumors may be inherited, like with LFS. These are the stories of 4 young ladies who […]

MRI Contrast Safety Check

Mutants are sensitive to radiation. We avoid radiation when possible because ionizing radiation causes breaks in DNA that our mutant p53 is not good about repairing.  Due to this, there are several studies that are looking into whole body MRI as a screening tool for LFS cancers. A huge benefit to MRI is that is […]

PROMPT Study could Use LFS Participants!

One of the big complaints with rare syndromes is that there aren’t enough clinical studies to address our needs. PROMPT is a study that combines data from not just families with LFS, but from many different mutations that are linked to cancer. This is significant to our community because by finding likenesses and differences between […]

Sluggin' it Out With Sarcoma: Brandi's Story

Brandi was a young woman about to embark on the crazy journey into parenthood when she was sideswiped with a rare cancer diagnosis. Sarcoma. Only about 1% of all cancers are sarcomas. Sarcomas can be found in any connective tissue, bone, blood vessels, fat, muscles or nerves. Many sarcomas(like Brandi’s) present as a painless lump […]

Tumor Humor- Screwed Again

Living with LFS can leave you feeling like you’ve lost your mind. Keeping up with doctor’s appointments, screenings, checking out weird lumps or bumps and finally keeping sane through it all. Sometimes the ridiculous happens, or the ridiculously weird and you just have to share it. Introducing Tumor Humor- a new segment of our blog where […]

Dr. Frederick Pei Li (May 7, 1940 – June 12, 2015)

In 1967, Dr. Li, Dr. Fraumeni and Dr. Miller were chatting socially at the NIH. In the course of conversation, a particular family popped up.  This family had three small children who had soft tissue sarcomas, a very rare type of tumor. When Dr. Li talked to the family more, they found other cancers in […]

Primed for Cancer with Pan Pantziarka

Cancer is a multi-step process.  For every person that says “such and such” causes cancer, there is another person who says – I have eaten/smoked/used/been exposed to “such and such” and I don’t have cancer. People with LFS know they are at higher risk of developing cancer because they have a mutation in the TP53 […]

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