A 'before-and-after' of what technology can achieve: Conway woman praises revolutionary surgery

April 05, 2023
a couple poses on a cruise ship deck in front of a sunset
Debbie Grenier with her husband, Paul, on a cruise a month before her surgery. Photos provided

A conversation with her cousin may have saved her life. It had been years since Debbie Grenier, of Conway, South Carolina, had spoken to her relative but when she did, she learned something that made a lightbulb go off.

“I found out that she has Birt-Hogg-Dubé (BHD) syndrome,” said Grenier. “It manifests itself in three ways – you can have a spontaneous lung collapse; you can get little skin bumps, or you can get tumors on your kidney. And it struck a chord for me because when I was 25, I had a spontaneous lung collapse, and they couldn’t figure out why.”

Now, more than 40 years later, Grenier thought she might finally have an answer. BHD is a rare disorder caused by mutations in the folliculin gene, which makes a protein that may help to control cell growth and other important cell functions. Mutated forms of this gene may increase the growth of abnormal cells. Only one in about every 200,000 people is affected. Grenier went to be tested by Gurpur Shashidhar Pai, M.D., director of the Division of Genetics at MUSC, and discovered she was that one.

“The test came back positive, and I thought, ‘Oh my goodness,’” recalls Grenier. “So, because of that they do preventative CT scans on my lungs once a year because what happens is you get little blebs or blisters on your lung, and they can just suddenly pop for no particular reason.”

a woman sits on a rocking chair on her porch and smiles up at the camera 
Debbie Grenier relaxing on her porch just a month after surgery. Photo provided

These blisters Grenier referred to are air-filled cysts that appear on the surface of the lung and can rupture, causing a spontaneous lung collapse. People with BHD also have an increased risk, about 25% to 35%, of renal cell carcinoma.

Three years ago, during one of her preventive screenings, doctors found a small nodule on her lung, only about a centimeter in size, and began keeping an eye on it. In November 2022, they noticed the nodule had doubled in size in just eight months’ time.

“Now, to me, that's still only 2 centimeters. That's tiny. Why are they worrying about this,” Grenier remembered thinking.

Doctors sent her for a PET scan to see if she had cancer and the scans came back unremarkable. To be sure, Grenier’s pulmonologist decided to do a lung biopsy.

“And the biopsy came back that I have adenocarcinoma in situ,” said Grenier referring to a condition in which abnormal cells are found in the glandular tissue, which lines internal organs and produces substances in the body like mucus and digestive fluids. Carcinoma in situ is the earliest form of cancer, or stage 0.

“Everything happened so quickly. November was the scan. December, they did the biopsy. And then I met Ian Bostock, M.D.,” said Grenier. Bostock, a cardiothoracic surgeon, treats patients at MUSC Hollings Cancer Center with lung or esophageal cancer, mesothelioma and chest wall tumors. “He recommended robotic surgery to remove the nodule and provided me with a surgery date in early January.”

The robotic surgery was what really wowed Grenier. When she had a spontaneous lung collapse and two unsuccessful chest tubes at 25 years old, she needed major surgery. Grenier recalled how they removed the top and bottom lobes of her right lung and then had to scrape the surface of the lung to adhere it to the chest wall. That surgery took her three months to recover from – while on Valium the whole time.

“That time was very much a blur,” Grenier recalled. “It also involved breaking two ribs and a scar that runs down my back and around under my armpit to my breast.”

"Such a massive difference from 45 years ago. I was told I would be in the hospital for three to four days after the surgery, when in fact, I was released just 28 hours after the surgery. Mind blown!”

Debbie Grenier

So, Grenier was thrilled to learn that Bostock intended to do her surgery robotically with just four small puncture holes.

“I have a computer background so that totally spoke to me. I was very excited about it.”

Grenier had her surgery at 2 p.m. on a Monday. Later that day, she was up and walking around. By Tuesday at 5 p.m., she was on her way home.

“Such a massive difference from 45 years ago,” she said. “I was told I would be in the hospital for three to four days after the surgery, when in fact, I was released just 28 hours after the surgery. Mind blown!”

A day after arriving home, Grenier stopped taking prescription pain medication and relied on just Tylenol, with no problem. A month later, she was back doing her favorite activity – swimming.

During her surgery, Bostock removed the tumor and 12 lymph nodes to ensure that it hadn’t spread. All of them came back clear. Grenier is now considered cancer free, and her only follow up will be CT scans every six months for two years and then once a year until the five year mark has passed.

“I’m like a ‘before and after’ of what 45 years of technology can achieve,” chuckled Grenier. “One lung – major scar and broken ribs, the other lung – four small holes and up walking around the same day! Still amazing to me that I was up and walking around just hours after the robotic surgery. Such a wonderful experience. I couldn’t have asked for more!”