Jewish Living Delaware Exclusive Interview with Lainie Jones, Leadership Annual Giving Manager at American Cancer Society and Seven-Time Cancer Survivor

Emma Driban, Editor

As Jews, we have all likely heard of genetic disorders such as Tay-Sachs Disease, Gaucher Disease, and Cystic Fibrosis. These serious diseases are significantly more common in Jews, particularly those of Ashkenazi descent, than in other groups. But what can we do about it?

If you ask Lainie Jones, a seven-time cancer survivor at just 41 years old, she’ll tell you that “knowing your risk can make all the difference.”

Jones has recently partnered with jscreen, acting as an advocate for the initiative’s work to educate and empower individuals to take charge of their health through genetic testing. Under her moniker @theearlydetective, Jones shares about her multiple cancer diagnoses and the over-arching condition that impacts her health journey—Li-Fraumeni Syndrome (LFS).

LFS is a rare genetic condition that drastically increases the risk of multiple cancer diagnoses throughout a person’s life. Despite the toll the condition takes, Jones remains humorous and upbeat.

“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,” she explains. “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 lifesaving decisions.”

Jones joined us for a conversation about what her health journey has been like and how you can be proactive in your own health practices.

• For those who don’t know your story, you received your first cancer diagnosis very early in life—adrenal cortical carcinoma at just 18-months old. The next came at age 24. Since then, it seems many of your SEVEN cancer diagnoses have come back-to-back. What was your tipping point? When did you decide to participate in genetic testing?

When I was first diagnosed with breast cancer, being Ashkenazi Jewish with an extensive family history of breast cancer, I decided to go through genetic testing specifically for the BRCA gene—a tumor suppressor gene which indicates breast cancer susceptibility—but the results were negative. After my breast cancer diagnosis at 24, I had a mole removed that turned out to be melanoma, followed by thyroid cancer. At that point, I had faced four different cancers, and we knew something wasn’t right. That led to further discussions with a genetic counselor, who recommended additional testing after my fourth cancer diagnosis.

• How did you come to terms with your Li-Fraumeni syndrome? How has it changed the way you monitor your health?

Genetic testing has truly saved my life. Learning that I have Li-Fraumeni syndrome changed everything—how my doctors approach my care, how we monitor my health, and how I’ve been able to catch cancer early. Because my body is highly susceptible to developing new cancers from radiation exposure, my medical team carefully selects scans that minimize risk while ensuring we stay ahead of any potential diagnoses. This proactive approach has been life-changing, allowing us to detect all seven of my cancers in their earliest stages. My journey is proof that genetic testing is the key to early detection, prevention, and, ultimately, survival. Knowing your risk can make all the difference.

• How has early detection made a difference in your cancer treatments?

Early detection is the reason I’m here today. It’s the difference between fear and empowerment, between uncertainty and action. Cancer doesn’t deserve a stage to stand on, and when we catch it early, we take back control. Physically, early detection has made my treatments more manageable and improved my outcomes. Mentally, it has given me the strength to keep fighting, knowing that I’m always one step ahead.

Yes, having seven cancers isn’t easy, and treatment is never fun—but I choose to focus on what early detection has given me: time, options, and hope. Genetic testing and an aggressive, proactive approach have allowed me to stay ahead of this disease, proving that knowledge is power. If something doesn’t feel right, speak up—your life is worth it.

• As Leadership Annual Giving Manager, at the American Cancer Society you come face-to-face with your diagnoses every day. How do you keep such a positive outlook when you’ve gone through so much at such a young age?

Life is all about purpose—especially when faced with a cancer diagnosis. Being able to wake up every day knowing that my work at the American Cancer Society is making a real difference is incredibly fulfilling. Connecting with survivors, caregivers, and those impacted by cancer fuels me, both mentally and physically.

I’m also very open about my journey because I believe in the power of awareness. Through my Instagram, @theearlydetective (follow me!), I share the importance of early detection, genetic testing, and what it means to truly live—even with a cancer diagnosis—in a way that is both fun and authentic. Helping others navigate their own journeys not only gives me purpose but also strengthens me as I continue my own fight.

• How did you first learn about JScreen? What stood out to you about their services?

I first learned about JScreen through @theboobiedocs—you should definitely give her a follow! What stood out the most to me was the convenience and accessibility of their genetic testing, along with the personalized support they provide. JScreen doesn’t just hand you results; they guide you through the process, ensuring you fully understand what the information means for you and your family. It’s an empowering experience that puts knowledge in your hands—because knowing your risk can truly be life-saving.

• Genetic testing can benefit everyone, but what are some signs one might notice that would encourage them to take that leap?

Genetic testing is life-saving, and there are key signs that might indicate it’s time to consider it. A strong family history of cancer—especially diagnoses at a young age—is a major red flag. If you have Ashkenazi Jewish heritage, you may also be at higher risk for certain genetic mutations. The most important step is to assess your risk—resources like cancer.org can help guide you.

But beyond testing, we need to normalize conversations about family health. Talk about it at the dinner table—it’s a far more valuable discussion than politics. Understanding your family’s medical history could save your life. And most importantly, listen to your body. If something feels off, don’t ignore it. Speak up, advocate for yourself, and push for answers. You are your own best advocate when it comes to your health.

• What is the most significant way Li-Fraumeni has impacted your life? What has been the most difficult part of your journey?

Li-Fraumeni Syndrome has had a profound impact on my life, but not in the way you might expect. While the knowledge that a new cancer could develop at any time is a constant reality, understanding that I have Li-Fraumeni Syndrome has ultimately given me peace of mind. It’s not so much a burden as it is a safeguard. My care team is well-informed, and I’m empowered to take action whenever something doesn’t feel right. The most difficult part of my journey has been confronting the possibility of new cancers, but in truth, having Li-Fraumeni has saved my life. Genetic testing has been a game-changer for me. Without it, I wouldn’t be here, a seven-time cancer survivor at 41 years old. I am incredibly grateful for the knowledge that has allowed me to take charge of my health and ensure that I’m not just surviving but thriving.

• Any parting words for our readers?

Genetic testing saves lives—I am living proof. While learning you have a genetic predisposition can be daunting, knowledge is a gift. It gives us the power to take control, make informed choices, and shape a future where awareness leads to prevention, and prevention leads to life.

But beyond genetics, the most powerful tool we have is our own voice. You know your body better than anyone—if something feels off, don’t wait. Speak up. Advocate for yourself. Early detection is the strongest weapon we have against cancer, and the more we know, the better we can fight.

Cancer doesn’t get to win. Not with standing up, speaking out, and taking action. So, let’s keep pushing forward, educating, advocating, and proving that resilience, knowledge, and hope can change the future of cancer. Because together, we are unstoppable.

Follow Lainie at @theearlydetective on social media.

To learn more about jscreen, visit jscreen.org.