In November 2023, Lainie Jones received the life-altering news that she had been diagnosed with Stage 1 lung cancer and glioblastoma, an aggressive and life-threatening brain tumor. While receiving a dual cancer diagnosis can be overwhelming for many, Jones remains focused on the positive aspects of her situation.

“I consider myself fortunate because I’ve managed to discover all my cancer cases remarkably early,” shares Jones, a 41-year-old resident of Florida, in her conversation with TODAY.com. “This experience is precisely why I advocate for the significance of early detection.” With a rare genetic condition known as Li-Fraumeni syndrome, Jones has faced seven different cancers. This condition elevates the likelihood of developing various cancers; the Li-Fraumeni Foundation indicates that 50% of individuals with this syndrome will develop cancer by age 40, and 90% by the age of 60.

Through sharing her journey, Jones aims to raise awareness about Li-Fraumeni syndrome and highlight the critical importance of early cancer detection for everyone.

“While it’s unfortunate that I’ve faced seven cancer diagnoses, one positive is that I am still here,” she reflects. “Every day, my mission is to ensure that people not only hear my story but also approach me for advice on managing their own experiences.”

‘I already had cancer once. I could never get it again’

Lainie’s battle with cancer began at just 18 months old when she was diagnosed with adrenal cortical carcinoma, a form of cancer affecting the adrenal glands.

“It’s something I have no recollection of,” Jones comments. “My parents were incredibly attentive.”

In 1985, genetic cancer testing wasn’t yet mainstream, so her doctors were unaware that she had a genetic predisposition to cancer. (As noted by the National Library of Medicine, it was not until the mid-1990s that genetic tests for cancer became available.)

“I used to joke about having cancer as a baby in 1985, thinking, ‘Well, checked that box, I probably won’t get it again,’” she recalls. “I honestly believed that.”

However, in 2008 while pursuing her nursing studies, Jones discovered a lump during a self-examination. After consulting her doctor and being prescribed an ultrasound, she postponed the appointment.

“I thought, ‘I’m only 24. Breast cancer isn’t a possibility for me,’” she reminisces. “I delayed the ultrasound for six months until December.”

Eventually, she learned she had Stage 2 breast cancer, leading to a double mastectomy to prevent a recurrence. Following her breast cancer treatment, a friend of her mother pointed out a suspicious mole on her back.

“She gently said, ‘That mole on your back looks unusual,’” Jones recalls. “After removal, it was confirmed as melanoma.”

After three cancer diagnoses before the age of 30, Jones wondered if it was simply a coincidence. Yet in 2010, during follow-up scans for her breast cancer, doctors identified thyroid cancer that had migrated into her chest.

At that point, medical professionals suspected a genetic condition was influencing her cancer risks.

“They transferred me to MD Anderson Cancer Center for genetic testing,” she explains. “That’s when I learned about Li-Fraumeni syndrome.”

Jones recalled previously asking her breast cancer specialist about the possibility of inheriting a genetic condition, but he had brushed her off. Gaining knowledge of her Li-Fraumeni diagnosis altered her medical surveillance approach.

“I underwent frequent PET scans, which expose patients to high radiation levels,” Jones notes. “With Li-Fraumeni syndrome, it’s crucial to minimize radiation exposure.”

Instead, she now opts for MRIs that do not involve radiation. Most individuals with Li-Fraumeni syndrome receive annual whole-body MRIs, comprehensive bloodwork, and other tests to facilitate early detection, as highlighted by Dr. Robert Lufkin to TODAY.com in 2024.

Many individuals might find the realization of having a heightened cancer risk daunting. However, Jones perceives her Li-Fraumeni diagnosis as a positive development.

“Genetic testing has been life-saving for me since it has drastically changed my medical management,” she states. “I feel incredibly grateful.”

Despite undergoing a double mastectomy following her breast cancer diagnosis, Jones experienced a recurrence in her lymph nodes in 2012 and started treatment with Herceptin, which she credits for keeping her breast cancer under control.

Her adrenal cancer also resurfaced, and she’s faced a diagnosis of sarcoma, a connective tissue cancer. Regular breast ultrasounds proved instrumental in the early detection of her sarcoma.

“Ultrasounds have been pivotal for me; for my thyroid cancer, I undergo head and neck ultrasounds,” she explains. “It has recurred twice, but I’ve been able to catch and address most cancers early due to vigilant screening.”

Receiving her lung cancer and glioblastoma diagnoses consecutively in November 2023 was daunting. However, discovering her lung cancer during a routine screening, at an early stage, required just four sessions of radiation treatment.

“Early detection is crucial,” she asserts. “Even after your cancer treatment ends, it’s vital to stay proactive with screenings. I often express, ‘Once a cancer patient, always a cancer patient.’”

Since her lung cancer treatment, Jones’s focus has shifted primarily to managing her glioblastoma. In November 2023, just weeks before her 40th birthday, she underwent a craniotomy. Recently, she had a second craniotomy due to necrotic tissue containing cancer cells.

“I’m set to start a new oral chemotherapy treatment that will span six months,” she explains. “My regular MRIs will continue so that any returning cancer cells can be addressed promptly.”

“We detected my most recent recurrence in late December, so we caught it incredibly early, similar to my first glioblastoma diagnosis,” she adds. “I feel reassured knowing my medical team collaborates closely.”

Understanding Li-Fraumeni Syndrome

Li-Fraumeni syndrome is a rare genetic condition, affecting fewer than 50,000 individuals in the U.S., according to the Cleveland Clinic. Approximately 1,000 families globally live with the genetic mutation responsible for the syndrome.

This syndrome represents an inherited vulnerability to a wide array of rare cancers, often linked to a mutation or loss in the P53 gene. Dr. Robert Lufkin, co-founder of the Li-Fraumeni Syndrome Association and an oncologist at Compass Oncology in Portland, Oregon, explains, “The mutation can lead to multiple cancers occurring at a young age or earlier than usual, including rare types.”

Dr. Benjamin Smith, a breast radiology oncologist at MD Anderson Cancer Center in Houston and part of Jones’s medical team, describes the P53 gene as “the guardian of the genome.”

“It plays a vital role in protecting our DNA and maintaining gene integrity,” Smith notes. “Individuals with a P53 mutation lack adequate mechanisms to safeguard their DNA, making it easier for genetic mutations to accumulate and potentially lead to cancer.”

Moreover, those diagnosed with Li-Fraumeni syndrome tend to have shorter lifespans due to their heightened cancer risks, as stated by Smith.

While traditional treatment options are available for those with Li-Fraumeni, they face a higher likelihood of secondary cancers as a result of radiation therapy.

“Because they lack a healthy version of P53, their normal cells struggle to repair damage caused by therapeutic radiation,” explains Smith.

Crafting personalized treatment plans for those with Li-Fraumeni syndrome can be complex due to the necessity for individualized approaches. Despite the intricate nature of her health journey, Jones’s medical team is consistently inspired by her resilience.

“She’s an exceptional individual,” Smith observes. “She has chosen to embrace the struggles she’s faced and turn them into lessons of growth, rather than running away from them. That mindset is truly commendable, and it’s a lesson for everyone.”

‘My mission in life is to inspire others.’

Being diagnosed with Li-Fraumeni syndrome and battling multiple cancers has significantly altered Jones’s life in profound ways.

“My life’s mission is to support others through their journeys,” she asserts. “I want everyone to understand that early detection is key—it truly matters. I cannot emphasize this enough.”

Jones aims to encourage open discussions about family cancer histories.

“We need to engage in these critical conversations as they can lead to life-saving outcomes,” she insists. “Cancer is an issue we cannot afford to overlook.”

Despite the trials she has faced, Jones feels a deep sense of gratitude.

“Cancer is undeniably challenging, but I wouldn’t change my life for anything—not even for a moment. I feel incredibly fortunate,” Jones concludes. “Many people receive a cancer diagnosis and may only have a few weeks to live. Meanwhile, I am here, thriving and making each day count.”