LFS Childhood Cancer Awareness: Choroid Plexus Carcinoma

Choroid Plexus Brain Tumors are highly associated with Li-Fraumeni Syndrome. The choroid plexus is within each ventricle in the brain; a series of vessels and tissue that are responsible for making cerebrospinal fluid that takes impurities and waste away. Tumors that grow here can block the flow of fluid and cause hydrocephalus (swelling in the brain). […]

MRIs and Kids

Since Li-Fraumeni Syndrome cancers can pop up just about anywhere in the body and at any age, screening can be a bit of a challenge. There are studies currently being done to see if whole body MRI is reasonable. Preliminary studies show that people with LFS do tend to grow lots of lumps and bumps […]

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 […]

Shannon Writes about Growing Up LFS

When my cousin Jen asked me to write a blog entry about living with Li-Fraumeni Syndrome, I had no idea what I would even write about. “Am I really qualified to write about this? I’ve never even had cancer.” Not thinking of LFS as much as possible outside of annual check-ups and scans is a […]

Pediatric Cancer: LFS style

It is difficult for most people to imagine what it is like when your child has cancer.  I have tried to explain what my son Brent’s journey was like on our caringbridge site, because I know that my friends could not understand nor relate to how brutal the chemotherapy beat down was for him, nor […]

Pediatric Adrenocortical Carcinoma in LFS

There is no official awareness ribbon color for adrenocortical carcinoma(ACC), definitely not one that would be recognizable since it is such a rare cancer. This is not a cancer that is seen very often in the general population, but it is one of the core LFS tumors. Adrenal tumors linked to LFS usually happen in […]