Man who lost 100 pounds diagnosed with liver disease, but really had rare cancer

Wally Sutt tries to remain upbeat after the stage 4 diagnosis — and he wants everyone to monitor their health symptoms.

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/ Source: TODAY
By Meghan Holohan

After Wally Sutt started golfing, he noticed his weight was holding him back. Bending over to pick up balls involved too much straining.

Over the years, Sutt used every excuse to skip exercise and healthy eating. He wasn’t surprised that his weight had ballooned. But in 2017 when he read his weight at 330 pounds, he decided to start eating better and working out. The weight began to come off slowly.

More than a year later and more than a hundred pounds lighter, the 5'10" inch tall Sutt said he felt good at 224 pounds.

Then, unexpectedly, he started gaining some of the weight back. He was still eating healthy foods and exercising, but the weight crept up. He thought maybe he'd overindulged during the holidays. But, something felt off. The way his stomach bulged seemed different than just extra weight.

For most of his adult life, Wally Sutt used every excuse not to exercise and eat healthy. After bending over to pick up a golf ball felt too tough, he changed his diet and added more exercise. In 1 year, he lost 100 pounds. Courtesy Wally Sutt

“My stomach was really, really tight and it just didn’t feel right,” Sutt, 45, a salesperson in Holland, Indiana, told TODAY. “There was no pain, nothing like that. This was strictly just going off how I felt and how my belly protruded.”

Sutt visited the doctor, who noticed that fluid had accumulated in his abdomen. After an ultrasound and blood tests, Sutt said, he was diagnosed with non-alcoholic cirrhosis of the liver.

Doctors believed the cirrhosis had caused the fluid buildup and bloating, which is called ascites, in Sutt's stomach. They removed 15 liters of fluid, which weighed about 34 pounds, and Sutt modified his diet even more, eliminating most sodium and alcohol.

“I took everything they said seriously,” he said.

Panicked, he went to extremes. He started lifting weights and eating an extremely strict diet that included a meal replacement shake for breakfast and lunch and plain fish without salt for dinner. His said his weight dropped to 174 pounds. Still, Sutt wanted to do more to reduce the impact of liver disease, so he called the Mayo Clinic for an appointment in June, hoping to join a clinical trial for experimental treatment.

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Doctors ran tests and found something unusual: Both Sutt’s kidney and liver functions were normal, but the fluid was still accumulating in his belly. They decided to test the fluid itself and drained 10 liters, weighing about 20 pounds, and sent it to the lab.

After losing about 100 pounds, Wally Sutt felt great. But then he started gaining weight again and something felt off. He visited the doctor who diagnosed him with non-alcoholic cirrhosis of the liver. Courtesy Wally Sutt

Three days later, Sutt was in the middle of a card game with friends when the phone rang. It was his doctor explaining the test results: Sutt had an extremely rare form of cancer called pseudomyxoma peritonei, more commonly referred to as appendix cancer.

“That was scary, of course,” Sutt said. “I wasn’t thinking clearly.”

PMP is a soft tissue cancer that affects organs in the abdomen and produces mucin, a gelatin-like liquid that can cause the kind of protrusion Scott experienced, what's called "jelly belly."

"People just think they're gaining weight," Dr. Travis Grotz, a surgical oncologist at Mayo Clinic who treated Sutt, told TODAY. "It's hard for people to figure out the symptoms."

Only about 2,000 cases of PMP are reported every year and doctors know little about the symptoms or causes, but think it's similar to colon cancer, Grotz added. Tumors often start in the appendix and can rupture, which then spreads cancerous cells that can attach to the lining of the organs, called the peritoneum, where they continue to produce the fluid. Sutt has stage 4 PMP (only stages 1 and 4 exist).

In August, Grotz performed surgery on Sutt to remove as many of his tumors as he could, but some were stuck to organs. He administered 90 minutes of chemotherapy to kill some of the remaining cancerous cells.

“We have truly done everything we can do," Sutt said. "Now we have to wait and see how fast it progresses."

The hardest part of recovery for him? He could only walk on a treadmill at first.

Now, seven weeks after surgery, Sutt started his weight-lifting and tougher workouts again. Exercising, riding his motorcycle and his faith help him cope with the uncertainty of his future.

“I am pretty positive, [but] some days get to me,” Sutt said. “Things do happen for a reason, we just don’t know what it is yet.”

Despite having an uncertain future, Wally Sutt stays positive, in part with help from his wife, Lynne. The hardest part about his surgery recovery was that he couldn't work out as much as he wanted. Courtesy Wally Sutt

If he hadn't lost the weight, doctors might not have discovered the cancer as soon as they did. Grotz said it's harder to feel and see abdominal tumors in overweight people.

Sutt said he's spent too long making excuses for being unhealthy and he hopes his experience encourages others to take initiative.

“If I would have never lost weight, I wouldn’t have recognized the fluid buildup," he said. "If I would have went another year or two because I had no other symptoms … there would be nothing (doctors) could do."

Focusing on his health and keeping a positive attitude are helping him recover, Sutt said. In the future, he also hopes to participate in a trial for new therapies.

"It is a big operation and people who are not healthy struggle more," Grotz said. "Staying positive and not getting depressed and getting beat down certainly it is hard ... He has done a remarkable job."

Sutt said sharing his story has helped him grapple with the diagnosis, but he also hopes it will help others.

“If I can help someone else in some way, or some fashion, I am doing something right,” he said.