Melissa Hough considers herself to be patient No. 154. That’s how unusual her condition is.

In June, she was diagnosed with cystic mesothelioma. It’s a noncancerous version of the lung disease commonly linked to asbestos exposure. In Hough’s case, hundreds of cysts had developed throughout her abdomen.

“When I first heard ‘mesothelioma,’ I freaked out,” says Hough, 52. “But then I did research online and talked to my doctor. That was the first time I actually had some relief.

“I had spent six months with an unnerving feeling wondering what’s going on in my body. It was a relief to know what it was.”

While the cysts were not cancer, they are known to come back after surgery about half the time. And if left untreated, the cysts would grow and accumulate inside the belly, causing intestinal blockage or breathing issues. They could eventually become cancer.

Meanwhile, the cysts were causing Hough significant pain.

She knew surgery was necessary. She also knew it would be extensive, stretching from her rib cage to her pelvic bone. She was prepared.

What her surgeon suggested next was less expected.

Treating a ‘mystical’ diagnosis

Clifford Cho, M.D., chief of hepatopancreatobiliary and advanced gastrointestinal surgery at Michigan Medicine, recommended a new procedure called hyperthermic intraperitoneal chemotherapy, or HIPEC.

It would involve the expected open surgery, in which Cho would remove as many cysts as he could.

But then, the surgical team would bathe Hough’s abdomen in a warm vat of chemotherapy to kill any remaining diseased cells.

“Melissa’s diagnosis is so rare, it’s almost mystical,” Cho says. “There are very few papers written about it and no clear consensus on what the best treatment is.”

HIPEC was a good option because surgery alone would not be enough. “Because the cysts are so diffuse, the likelihood of getting all microscopic cells is preposterous,” Cho says.

Adding the chemotherapy maximizes the chance of getting all those cells as the drug comes in direct contact with all the nooks and crannies throughout the abdominal cavity.

Hough was initially shocked at the severity of the treatment but says Cho’s explanations quickly put her at ease.

“My eyes got really big, thinking ‘what are you doing? This is science fiction!’ But then I knew I had a plan — I know what it is and I know what’s going to happen,” says Hough, a project manager at a technology company.

Finding certainty

It took her a long time to get to that point.

Her mother had died of intestinal cancer but it was thought to have originated as ovarian cancer. Hough had a history of painful ovarian cysts, which resulted in a full hysterectomy and removal of her ovaries, in 2014.

So when it felt like another ovarian cyst was developing, she worried about ovarian conditions, especially ovarian remnant syndrome, a rare condition in which ovarian tissue is left behind after oophorectomy.

For six months, Hough sought answers.

She went to an oncologist who told her she had gas. She met with a surgeon who ran multiple tests but couldn’t determine her diagnosis. Finally, he removed her gall bladder, and it was during that operation when he saw hundreds of cysts throughout her abdomen.

Hough came to Michigan Medicine, where Cho was familiar with her diagnosis, the controversies about it and the potential treatment options.

“The only thing worse than the fear these rare diagnoses cause is the uncertainty,” Cho says. “Patients have literally thousands of questions about their diagnosis, and that’s compounded in people who have really rare diagnoses.”

A strong recovery

Hough’s motivation, mixed with her young age, helped her get through the HIPEC procedure with minimal side effects.

Because the chemotherapy doesn’t enter the bloodstream, it did not cause any of the traditional chemotherapy side effects, such as nausea and hair loss.

It’s a long recovery, though. The first five days she says were especially difficult.

She came out of the lengthy operation with a nasal gastric tube, which was there to suction the bile from her stomach while her organs healed from the procedure. Once the tube came out, she quickly felt better and was back home in Holt, Michigan, one week after the procedure.

Hough continues to recover and recently returned to work. Her biggest challenge was fatigue: A long phone call or visit would leave her tired, and while her job is not physical, she knew the mental work of managing technology installation processes would be too much.

One comfort is Clover, her 6-year-old greyhound-Irish wolfhound whom she adopted as a puppy. Hough has adopted three retired racing greyhounds before Clover, dating back to 1999. She also volunteers with Greyhound Expressions, a greyhound adoption group.

“They’re awesome dogs,” she says about the breed.

Positive path forward

As she continues to recover, Hough will see Cho regularly for scans to check for signs of cysts returning. But Cho thinks the aggressive treatment now gives her the best chance for the future.

“She’s young and healthy,” Cho says. “Our big motivation was to consider if there’s something we can do now to minimize the chances of this disease impacting her when she’s older.”

Hough knew the approach was extreme, but she also felt it was the right choice.

“If this is what works for an aggressive form of cancer, it should work for the benign cells,” she says. “I was motivated and went in with a good attitude. I think that made a difference.”

Originally Posted on Woman’s Rare Diagnosis Prompts Sweeping Treatment to Target Cysts