Heidi Lima liked to play in the plantain fields on her grandfather's farm in Guatemala where she lived as a little girl. “It took an hour on a dirt rock road,” she recalled, “to get to the closest town.” The isolated location turned out to be an obstacle to her health.
She needed her first operation at age 6 to remove a polyp in her intestinal tract. Polyps are typically benign growths. This one had grown so large, it caused her stomach to bloat. While the surgery was a success, more polyps returned over time, puzzling and worrying Lima’s physicians. Lima later lived in Guatemala City, but doctors eventually urged the family to leave for another country with more medical specialists.
In 1991, when Lima was nine, the family made their big move to Rhode Island. Lima spoke no English and the New England winters were a shock. Still, her family was relieved to finally get a diagnosis. Lima had a rare condition called Peutz-Jeghers Syndrome (PJS). The disorder can cause “hundreds and hundreds of polyps” in the intestinal tract, Lima explained, increasing patients’ risk for cancer.
PJS is caused by a genetic mutation. It turned out Lima’s father Alfredo, a colon cancer survivor, also had PJS. People with PJS are also at a higher risk for other forms of cancer.
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The family eventually moved to Charlotte, where Lima, known for her friendly and upbeat spirit, built a thriving bilingual career in Bank of America’s training department. She loved her work and travel. But her health challenges returned in 2016 when she developed urinary incontinence, a perplexing symptom for a young woman. Initially mild, it grew worse.
Many years and tests later, she would meet Dr. Matt McDonald, gynecologic oncologist with Novant Cancer Institute-Gynecologic Oncology Associates and lead physician for the Novant Health Cancer Institute in Charlotte.
‘I know my body’
By 2019, Lima sought help from her gynecologist for both the periodic incontinence and now, abnormal bleeding. He removed fibroids – a common cause of bleeding – from her uterus and tried other measures. Nothing significantly helped. Six months later, Lima told the gynecologist, “I know my body. At this point, this is not something that should be happening to me.”
An ultrasound revealed her fibroids were back and bigger than ever. The gynecologist ultimately recommended a partial hysterectomy to remove Lima’s uterus. Lima agreed, understanding she would not be able to have children. She didn’t want to pass the PJS gene to a new generation anyway.
There was a tiny chance the doctor wouldn’t be able to complete the procedure if he uncovered a tumor during surgery. There had been no tumor on the ultrasound, so there was no obvious cause for worry. Lima fell fast asleep from the anesthesia. When she woke, she realized only half an hour had passed. There was no way the doctor could have finished her surgery in that time.
He didn’t get to start it. In a preliminary exam before surgery, he saw a lesion on her cervix and sent a section for biopsy. “I’m sorry,” a nurse told Lima. Lima knew in that moment she had cancer. She teared up, thinking how her mom and dad would react.
The family was fortunate to have many friends who gathered in support in the hospital waiting area. When the doctor came out and asked to speak with Lima’s parents, 20 people stood up.
“She should be dead by now”
The gynecologist diagnosed Lima with cervical cancer and referred her to McDonald. Through a PET scan (which shows organs and tissue) and other tests, McDonald confirmed that Lima had an adenoma malignum, a form of cervical cancer that’s rare and aggressive. They would need to start radiation and chemotherapy right away. Surgery wasn’t recommended. “If the cancer is large on the cervix, we know that hysterectomy does not offer any advantage to the patient,” McDonald said.
A multidisciplinary team of physicians who specialize in gynecologic oncology meets weekly to review tumor cases, part of Novant Health’s commitment to expert care. McDonald talked through Lima’s treatment plan with the group. Lima was experiencing serious anemia. She’s also a Jehovah’s Witness who could not receive blood transfusions. McDonald arranged for her to see a hematologist to receive iron supplements “and make sure her blood counts were as aggressively handled as we could.”
For two months, Lima endured chemo and radiation. It didn’t work. “Usually when you give radiation to the standard cervix cancer, the radiation kills it,” McDonald said. Not this time.
McDonald and Lima had a long conversation to talk through options. The cell type in this cancer was so rare, there was nothing in the medical literature to guide them on a successful treatment.
McDonald and Lima decided upon a radical abdominal hysterectomy. It included removing her ovaries, both of which were laced with cancer. Then came a breakthrough.
McDonald had Lima’s tumor tested for PDL1, a mutation in the tumor itself. The test came back positive, which meant Lima was a candidate for immunotherapy with Keytruda, a drug that targets that mutation. The goal with immunotherapy was to stimulate Lima’s immune system to fight the cancer.
Lima received the treatment for two years until August 2022. McDonald and Lima were overjoyed to see it brought the cancer into remission. “The two-year survival for adenoma malignum is poor,” McDonald said. “Especially with her advanced stage of disease, the medical literature would tell you she should be dead by now.” The immunotherapy had made the difference.
Navigating uncharted territory
The cancer returned in fall 2022 in her upper vagina and bladder. She would need more surgery and again, they discussed options. Before she said yes to anything, she sought second opinions from the Mayo Clinic in Rochester, Minnesota, the Dana-Farber Cancer Institute in Boston, and the Memorial Sloan Kettering (MSK) Cancer Center in New York. McDonald had encouraged her to consult with others. The more bright minds on this, the better, he said.
She got her answer when an MSK physician urged her: “Whatever you’re doing with your doctor in Charlotte, keep doing it. Because you’re alive two years later – you guys are doing something right.”
McDonald ultimately removed the upper vagina and a portion of her bladder through robotic-assisted surgery. A major new study showed that adding Keytruda to chemotherapy improved outcomes for metastatic cervix cancer. McDonald discussed the idea with the tumor board, and Lima started on a four-drug mix in December. A PET scan in April 2023 confirmed complete remission. Now she’s on maintenance medication to keep the cancer at bay.
McDonald and Lima have become so close that they can laugh about the fact that no one knows her prognosis. “If Keytruda didn’t exist, I would expect Heidi Lima not to be alive,” McDonald said. “She’s in uncharted territory.”
She’s making the most of it. She’s traveled to Greece and Portugal, and is planning other trips. She takes advantage of services from Novant Health’s integrative medicine team, including acupuncture and oncology massage. “I love Dr. McDonald. I consider everyone in the office friends,” Lima said. “At that clinic, I’m not a case number. I’m not a study. I feel like they do it because they want to keep me alive.”
She has a strong message for other women: Listen to your body. Respect your intuition. Book that medical appointment. “If something doesn’t feel normal,” she said, “it’s not normal.”
