“Nothing can prepare you for when you can’t make things better,” shares Marlo Gottfurcht Longstreet, a mother who lost her 11-year-old son, Tanner, to cancer. Tanner was diagnosed with a glioblastoma, an aggressive cancer in the brain, and died only eight days and eight months later. They found that Tanner carried a hereditary cancer gene, mutant P53. This rare gene mutation was not only carried by Tanner but also by Marlo’s daughter, Casey.
Casey and Marlo join The Doctors to discuss their fight to keep Casey healthy and alive as well as their advocacy for genetic testing. Casey shares that after testing Tanner, their entire family got tested. There was only one other case of family cancer, Casey’s paternal grandmother, who had died from premenopausal breast cancer.
Oncologist Dr. Lawrence Piro explains since there wasn’t a greater family history of cancer, the findings were surprising. However, Tanner’s brain cancer and the premenopausal cancer in a relative was a red flag that this syndrome may exist. After testing the family, they learned that Casey’s father also has the mutated P53 gene, and she too had it and has an over 90% chance of getting cancer.
Dr. Piro explains with a genetic mutation, a group of genes that are meant to control and suppress cells so that they don’t divide aimlessly, are not working properly. Either they don’t produce the protein correctly or at all, so the regulatory mechanism that keeps cells growing and dividing properly goes awry.
Dr. Piro explains while there is no preventative medication to stop the progression of this syndrome, surveillance is extremely important. Any persistent symptoms need to be addressed with regular screenings. Casey notes that this does make it difficult to go to doctors because any little thing, like a birthmark on her skin, needs to be looked at seriously because she is high risk. For example, that birthmark will get biopsied. This does take an emotional toll on Casey.
Marlo shares that she is so proud of her daughter. She says with genetic testing you are able to closely monitor and catch a disease prior to it becoming cancer. To hear more of Marlo’s story you can read her memoir “Rainbow Around the Son.”