Seven-Time Cancer Survivor Lainie Jones Turns Adversity Into Advocacy With Genetic Testing
April 4 2025, Published 3:00 a.m. ET
Anyone who has overcome cancer or witnessed a loved one suffer through the heavy weight of biopsies, testing, and cancer treatment knows the powerlessness associated with the disease. The feeling of being out of control with one’s body and the fear of not knowing what might be around the corner are two of the worst aspects of dealing with cancer. But as seven-time cancer survivor Lainie Jones has proven time and time again, it’s that there is a way to take one’s power back and show up with bravery, resilience, and dignity in the face of illness.
Li-Fraumeni Syndrome (LFS) is a genetic condition that significantly increases the risk of multiple cancer diagnoses throughout one’s lifetime. While it may be a relatively rare condition in the United States, for the 25 to 30 thousand Americans living with it, Li-Fraumeni Syndrome can have a devastating impact on the quality of life. It’s because of this ailment that Lainie Jones has faced one of the harshest medical journeys of anyone alive, yet even so, she’s handled every step with dignity and grace.
“I want to share my story and encourage others to take charge of their health,” says Lainie Jones, Leadership Annual Giving Manager at American Cancer Society and an advocate for hereditary cancer testing through jscreen, a national nonprofit health initiative. “I’ve been diagnosed with seven different cancers—adrenal, breast, thyroid, brain, melanoma, sarcoma and most recently, lung cancer. Knowing I had LFS has been the key to staying ahead of this disease through regular screenings and early detection.”
Throughout her journey, Jones has become a passionate advocate for genetic screening, which is one of the best tools available to those with a predisposition to cancer. By identifying hereditary cancer risks and detecting cancer in its early stages, individuals can take charge of their health and lead fuller, happier lives. Had Jones not known she was suffering from Li-Fraumeni Syndrome, she wouldn’t have the necessary tools to be proactive with her healthcare decisions and catch cancer before it spreads.
Despite going through not one, but seven cancer diagnoses, Jones has managed to use humor to laugh in the face of her ailments.Under the social media handle @theearlydetective, Jones has posted countless photos and videos dancing, laughing, and poking fun at her history with cancer.Her profile is full of humor and levity, including a photo where she sports a cheeky grin and the words “A lot of cancer going on at the moment” on her t-shirt. By greeting every test, diagnosis, and treatment with optimism and a smile, Jones has proven that a positive attitude and knowledge of one’s condition can do wonders to make the journey easier.
“People may see me dancing, laughing, and making light of my follow-up appointments, but behind the scenes, I’m doing everything I can to be proactive with my health,” says Jones.“Hereditary cancer testing through jscreen gives people like me an accessible, at-home option to understand their hereditary cancer risks, empowering them to make proactive and often life-saving decisions.”
jscreen.org is a national non-profit public health initiative aimed at preventing genetic diseases. By providing affordable access to genetic testing, jscreen is giving people the knowledge they need to take charge of their health journey.Through the use of at-home saliva-based testing and state-of-the-art sequencing technology, individuals can learn more about their predisposition to cancer and genetic disease to help them be more proactive in their healthcare decisions.Once the results have come in, they can connect with one of jscreen’s genetic counselors to better understand their results and discuss next steps.Whether through the phone or via secure video conferencing, individuals can receive one-on-one guidance about how to best take care of their health with their current knowledge.
By sharing her journey with the world through social media and her passionate advocacy work, Jones has done wonders to raise awareness of genetic screening and the power it has to protect one’s health.All one has to do is hear her story to understand the life-saving difference that genetic testing and early detection can make in fighting cancer.Whether one has a condition like Li-Fraumeni Syndrome or some other disease that makes them more likely to develop cancer, knowledge of one’s genetic predispositions can make the difference between life and death.
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