Curing a Rare Cancer

Columbia team performs life-saving surgeries  

Danielle Menard MazurowskiDanielle Menard Mazurowski, 39, was teaching music in a Virginia elementary school and planning her next vacation with her husband, Jay, when she learned that she had a rare cancer called adrenocortical carcinoma (ACC) arising in the outer layer of the adrenal glands that rest on top of the kidneys.  

In the fall of 2015, Danielle had noticed signs of virilization: acne, male pattern balding, a deepening of her voice, then, a few months later, she stopped menstruating―all symptoms typical of an ACC functioning tumor.  In July of 2016, a CT scan confirmed this, showing a mass in her abdomen. The oncologist at Danielle’s local hospital had only seen one other patient with this type of cancer and that was sixteen years ago.  

Danielle’s tumor appeared attached to the inferior vena cava, a large vein that carries blood from the lower body to the heart.  It had pushed the organs on the right side of her body down to her uterus, and by the time it was discovered, this cancer had also spread to both her lungs.  

“The doctors told me they’d do everything they could to prolong my life, but didn’t think I had much time,” Danielle recalls. “When I got this news two days before my fourth wedding anniversary, I cried because I couldn’t guarantee a long life with Jay.” 

Danielle was given six rounds of combination chemotherapy to shrink her tumor at a medical center near Washington, DC. She lost over 35 pounds and proved allergic to one of the ingredients. “I wasn’t going to let that stop me,” she says, “because this was the only protocol used for my condition.”  She toughed it out with anti-allergy medication and in January 2017, a scan showed that Danielle’s primary tumor had shrunk by 70 to 75%. 

Tito A. Fojo, MD, PhDThis response was unusual.  Typically this regimen reduces metastatic disease but has little effect on the primary tumor.  Perplexed, Danielle’s oncologist told her to contact the nation’s leading expert on ACC, Dr. Tito Fojo, who had done groundbreaking research on this condition at the National Institutes of Health.  

“We found Dr. Fojo at Columbia,” Danielle says. “He was the first expert who didn’t look at me as a science experiment.  He hugged me tight and all my armor dropped away, and he reassured me that his team could remove my cancer surgically.”  Danielle got this news on her 40th birthday, February 14.  “Hope,” she says, “was the best gift I ever received.” 

Jennifer Hong Kuo, MDDr. Jennifer Kuo, Director of the Endocrine Surgery Research Program, excised Danielle’s primary tumor in early March.  “She had a wonderful, serene presence, but at same time, a real sense of authority,” Danielle says. “I knew I could trust her with my life.”  All Danielle’s margins were clear and Dr. Kuo was able to save her kidney, which had been threatened by the primary tumor.   

While her skill as a surgeon was unsurpassed, Dr. Kuo’s bedside manner also contributed to Danielle’s recovery.  “This doctor gives so much to her patients. I call her my super hero because she not only took this disease out of my body, she knew how to comfort me. Whenever I heard her come into the room, I felt soothed.  Her voice is like music; it’s a completely different kind of medicine, and it helped me heal.” 

Dr. Joshua SonettFour and a half weeks later, Dr. Joshua Sonett, Surgical Director of the Price Family Center for Comprehensive Chest Care at Columbia, came up with a plan to address the cancer that had spread to Danielle’s lungs.  There would be two operations―one to remove the lesions on the right lung, and another to remove the lesions on the left.  She would need 14 wedge resections in all. 

In April, Dr. Sonett did a traditional thoracotomy on Danielle’s right lung, performing 13 wedge resections, and even finding a mass that didn’t show up on the CT scan―one the size of a grain of sand.  

In June, he performed an upper left lobectomy and another wedge resection, using video assisted thorascopic surgery (VATS).  “No problem!” Dr. Sonett said, as he came out of the operating room. Smiling, he told Jay, “We got everything out and now Danielle is cancer free.” 

“I was so excited to wake up the next day,” Danielle says.  “I had a view of the Hudson River and watched the sunrise, feeling so happy and so grateful to be alive.” 

Because ACC affects only one in a million people, Danielle’s family refers to her as “the unicorn.”  During her illness, she started collecting photos, stickers and stuffed animals with this motif. “When Dr. Sonett went skiing, he sent me a photo of someone in a unicorn costume at the bottom of the slopes,” Danielle says. “That’s the kind of bond I had with my physicians.” 

It’s been three months since her surgery.  Danielle’s husband booked a surprise trip in August, a kind of second honeymoon. And now Danielle plans to give back, serving as an advocate for other patients with rare cancers.  

“I’d like give all of us battling this ultra-rare cancer a voice,” she says. “Dr. Fojo is teaching medical students and fellows how to deal with ACC.  But we need more research and new medications for orphan cancers. In the meantime, I want to tell the patients, ‘Come to NYP/Columbia.  From the support staff all the way up to the surgeons, everyone is so kind and caring and thoughtful. They’re just amazing and they don’t give up.’”