A patient’s grim prognosis, and the Hoag physician who challenged it
As Darlene Maher sat in the waiting room of the Hoag Family Cancer Institute, she was terrified.
Just days earlier, the elementary school teacher had spent several hours in the emergency department at another hospital.
“I had left work doubled over in pain,” she recalled. “At the ER, a CT scan showed numerous tumors on my abdomen, my ovaries, and the largest tumor—almost seven centimeters—was near my kidney. I was told by the physicians there that I had stage 4 cancer, and they were sending me to Hoag.”
Darlene was referred to Dr. Alberto Mendivil, chief of gynecologic oncology at Hoag. After reviewing her scans and performing a biopsy, he realized Darlene’s case was unique.
“My initial impression was that the spread of these tumors was not typical of uterine or ovarian cancer,” Dr. Mendivil said. “Sure enough, the pathologist revealed that the tissue from the biopsy did not show signs of cancer, but rather a very rare form of metastasizing fibroids.”
Dr. Mendivil considered that the benign fibroids were spreading throughout the abdomen and pelvis—a rare condition in which chemotherapy wouldn’t be an appropriate form of treatment.
Given the complexities of her case, Darlene sought second and third opinions from multiple university health systems and cancer centers, experiences that would prove difficult to forget.
“One doctor diagnosed me with stage 4 uterine cancer and told me that my body was riddled with more disease than he was used to seeing. He said that the likelihood of successful treatment was very small, that I maybe had six months to a year-and-a-half left to live, and that I should spend my final days taking trips with my husband. That was one of the worst days of my life.”
Another physician at a different medical center told Darlene she would need at least a year of chemotherapy followed by Hyperthermic Intraperitoneal Chemotherapy (HIPEC) surgery, an extensive procedure involving the removal of abdominal tumors and cancer cells by bathing the abdominal cavity in heated chemotherapy.
“It became clear that these other doctors were not at all optimistic about my prognosis. The one physician that continued to offer me hope was Dr. Mendivil. He always gave me hope that I was going to be okay.”
She returned to Hoag, where she began hormone blocking therapy, a regimen Dr. Mendivil and the Hoag Tumor Board agreed was the best course of treatment for Darlene. Within a few months, scans showed that Darlene’s tumors had shrunk substantially.
“I put all my trust in Dr. Mendivil, and it was the best thing I ever did,” she said. “He had been right about my case the whole time. These were estrogen-fueled benign tumors, not cancer.”
Darlene’s official diagnosis was Disseminated Peritoneal Leiomyomatosis (DPL), a condition so rare there are fewer than 200 documented cases. DPL occurs when multiple benign tumors grow throughout the abdomen and on various organ structures like the uterus, ovaries, and intestines. In Darlene’s case, one developed near her kidney and had to be surgically removed.
Since her operation and continued hormone blocking therapy, follow-up scans have shown no signs of tumors.
“While my journey was incredibly complex, Dr. Mendivil and the team at Hoag possessed a level of expertise that allowed them to see things in ways others couldn’t—and provide the kind of care I needed,” she said. “He saved my life.”
