If ever there was a cancer survivor who has mastered the ability to take lifelong adversity and turn it into something positive, it would have to be Lainie Jones of Fort Lauderdale.
The soon-to-be-40-year-old fundraiser and event planner for the American Cancer Society (ACS) was born with a rare inherited condition called Li-Fraumeni syndrome, which puts her at genetic risk for multiple malignancies. Her first—adrenal cancer—came when she was just 18 months old and she’s been battling them ever since.
(Watch now: Her first cancer came at just 18 months and Lainie Jones has spent her entire life battling the disease. See how doctors at Lynn Cancer Institute are helping the five-time survivor help others with cancer. Video by Alcyene de Almeida Rodrigues.)
Jane Skelton, M.D.,a medical oncologist with Lynn Cancer Institute, part of Baptist Health
“Females born with the syndrome have a nearly 100 percent chance of developing breast cancer,” says Jane Skelton, M.D., a board-certified medical oncologist at Lynn Cancer Institute, part of Baptist Health. Subspecialized in breast oncology, Dr. Skelton treats patients with early stage to advanced metastatic breast cancer.
Understanding Li-Fraumeni syndrome
According to the ACS, Li-Fraumeni syndrome is most often caused by inherited mutations in the TP53 gene, which is a tumor suppressor gene. A normal TP53 gene makes a protein that helps stop abnormal cells from growing.
Jane Skelton, M.D.,a medical oncologist with Lynn Cancer Institute, part of Baptist Health
Li-Fraumeni syndrome can lead to an increased risk of a number of cancers, including sarcoma (such as osteosarcoma and soft-tissue sarcomas), leukemia, brain (central nervous system) cancers, cancer of the adrenal cortex, and breast cancer.
The ACS says these cancers often develop in relatively young adults or even children, and that people with Li-Fraumeni syndrome can develop more than one cancer in their lifetime and also seem to have a higher risk of getting cancer from radiation exposure.
Too young to worry about breast cancer
Mrs. Jones, who grew up in Coral Springs but spent eight years working in New York before eventually returning to South Florida, says her cancer journey began in 2008 when, at the age of 24, she was diagnosed with stage 2 ductal carcinoma in situ (DCIS) breast cancer.
“My doctor had given me a prescription for a mammogram but I never followed through because I always ate pretty healthy and I honestly thought I was too young to be worried about breast cancer,” she admits.
Mrs. Jones was successfully treated at MD Anderson cancer center in Houston. Because of her genetic predisposition to cancer, however, she has had recurrences in several of her lymph nodes since her initial treatment. She also says that over the years she has “had melanoma several times, thyroid cancer twice, pleomorphic spindle cell sarcoma and adrenal cancer caught early.”
As a result, Mrs. Jones must be on maintenance therapy for the rest of her life. In addition to regular follow-ups with her oncologists in Houston and Miami, that means a daily regimen of oral chemotherapy pills plus an infusion of the targeted therapy anticancer drug Herceptin every three weeks.
Mrs. Jones is quick to note that Herceptin, the lifelong chemotherapy maintenance drug she is taking, resulted from research funded by the ACS. “It literally is what’s keeping me alive.”
Searching for the region’s best cancer care
When Mrs. Jones’ breast cancer recurred the third time, she went through aggressive chemotherapy with radiation. “There’s no good time for cancer but it was six weeks before my wedding so it was not fun,” she had noted in a story published in the Sun Sentinel.
When she decided to move back to South Florida, Mrs. Jones, understandably, was intent on finding a local cancer center that not only could continue her life-saving therapy but also be willing to work hand-in-hand with her original cancer care team in Houston. Her search led her to Dr. Skelton at Lynn Cancer Institute.
“I was looking for a cancer center that was going to take the best care of me given my multiple cancer diagnoses, living with Li-Fraumeni syndrome. I am so grateful I found Lynn Cancer Institute,” Mrs. Jones says. “Dr. Skelton is the best. She’s caring, compassionate and personable, she always goes above and beyond to make sure I’m getting the best care and she always loops in my other doctors from afar.”
Dr. Skelton says that Mrs. Jones’ history of multiple malignancies and her predisposition to multiple cancers is unique, and for that reason she is being followed at Lynn Cancer Institute as well as by her care team in Houston. She says her patient has been on a stable regimen for a number of years and is doing “very well.” She continues to see her every six weeks.
A cancer survivor five times over
When Mrs. Jones recounts her various cancer journeys, it can be difficult to imagine how she finds the time and strength to fundraise for the ACS and help raise awareness of cancer.
“I have survived five primary cancers, I have done chemotherapy three times and have no evidence of disease, and I am in treatment forever,” Mrs. Jones says. But she doesn’t ever allow herself to wallow in self-pity.
Instead, she uses her own extensive personal experience with cancer and dedicated her life to helping others with the disease, particularly young children, says Mrs. Jones, who describes herself as “outgoing, fun, sociable, very positive and energetic, and someone with a big heart.” “It’s why I work for the ACS,” she adds. “It truly is my passion and my purpose.”
Dr. Skelton calls Mrs. Jones “remarkable in her ability to be optimistic and realistic all at once” and credits her for being “proactive and very involved in educating the public in addition to her job as a fundraiser for cancer care.” The oncologist says that her patient’s husband has also been “extremely supportive” and that they have faced her cancer journey “remarkably well.”
No evidence of new disease
Although Mrs. Jones is at risk for both new cancers as well as progression of her known metastatic breast cancer, Dr. Skelton says her prognosis is “currently favorable.” “There is no evidence of new disease and she is currently relatively asymptomatic from her cancer therapy.”
Unlike most patients, Dr. Skelton points out, Mrs. Jones must have frequent scans because of her genetic predisposition to cancer. “She has an MRI every three months, which is certainly not standard of care for most patients,” says Dr. Skelton.
Living from one scan to the next
Today, Mrs. Jones says she is recovering well and back to doing what she loves: helping children with cancer by working tirelessly to raise funds for pediatric cancer care—even while she continues to fight her own lifelong battle against the disease.
“I’m so grateful to be a patient at Lynn Cancer Institute. There are no egos here and it truly is a dynamic team,” says Mrs. Jones. “I always say I’m the new face of cancer. I live in three-month increments, from one scan to the next. I live with this. It’s how I stay positive.”
In the meantime, Mrs. Jones looks forward to celebrating her 40th in December. “It’s a big one,” she says. “It’s also the 15th anniversary of my first breast cancer diagnosis. I have been given the gift of life and I feel it’s important to share that gift.”
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