A man suffering from a rare cancer called pseudomyxoma peritonei (PMP), which can surround organs in the abdomen, has survived thanks to a groundbreaking multi-organ transplant procedure.
Andy Voge, 33, thought he had six months to live before meeting a doctor from the UK who successfully removed and replaced all of his affected organs in a first of its kind in the US
It all started in January 2019, when Voge and his wife Rachel, then living in Minnesota, noticed a bulge on Voge’s abdomen. “I didn’t really like it. … She called it my funny-looking belly button,” Andy Voge told NBC News’ Kate Snow on a segment airing on TODAY Monday.
He went to his GP to get it checked just in case. “He said, it’s just an umbilical hernia, we don’t have to do anything about it,” Voge recalls. But routine blood tests revealed that his liver enzymes were not good.
“So we did an ultrasound the next day and they found masses in my liver,” Voge said. A CT scan the next day would reveal that he had cancer of his appendix. Just days after going to the doctor for his “funny-looking belly button,” he was diagnosed with a rare form of appendix cancer, pseudomyxoma peritonei, or PMP.
It was a complete shock to the couple. “We had a great meal a few days before I went for a run. Everything was normal,” Voge said.
PMP, also known as jelly belly, usually starts with a slow-growing tumor in the appendix that bursts and begins to squeeze out mucus, Dr. Anil Vaidya, a surgeon at Cleveland Clinic and the doctor of the Voges, told Snow.
This causes a build-up of mucus-secreting tumor cells, which slowly fill the abdominal cavity. “There is no control over the amount of mucus that is secreted. … It forms layers and causes compression of the organs in the abdomen,” Vaidya explained. The expansive jelly-like substance can eventually set like cement and wrap or strangle the rest of the organs. It can compress the intestines, bile ducts or blood vessels to a point where “patients are blocked so they can’t eat or drink,” explained Vaidya.
Because this type of cancer grows so slowly, it often goes undetected for a long time. Common symptoms include abdominal pain and swelling, but patients can be asymptomatic for years. PMP is often overlooked or misdiagnosed because it is so rare — two to four cases per million people, according to Vaidya.
Voge said that while it was overwhelming and upsetting to be diagnosed with PMP, he was very lucky to be diagnosed within four days. A week later, he went to the Mayo Clinic near his home for treatment and found that his cancer would not respond to typical chemotherapy.
PMP is usually treated through a combination of surgery to remove as much of the tumor and mucus as possible (a process called “debulking”) and heated chemotherapy, Vaidya explained. Debulking does not cure PMP, but removing the malignant jelly and hardened mucus can relieve pressure on other organs.
“On my first surgery, he immediately took out about three liters of mucin,” Voge said. The surgery also removed his gallbladder, spleen, appendix, and omentum, which hangs from the stomach. Although his doctors said there was still a tumor around his liver and stomach, Voge’s surgery went well and he was back to his normal routine within six weeks. “The path after this operation is monitoring. … They put you on a wait-and-wait routine,’ he said.
The summer after Voge’s first surgery, the outdoor couple bought a trailer and traveled through Minnesota state parks. At his six-month follow-up in August 2019, everything looked good. “There was no evidence of new tumor growth. … We felt very good leaving,” said Voge. By the fall, the couple decided they wanted to travel full-time, so they sold their home in Minnesota. “Then suddenly everything fell apart again.”
At a follow-up appointment in February 2020, Voge’s doctors told him that the tumor had started to grow again and that most of what they had removed had grown back. “We knew it would come back. We knew we would have to deal with it again. It just happened so much faster than we thought,” recalls Voge.
That appointment was a major turning point for the couple.
“We’re like, we have limited time. … Let’s use it,” Rachel Voge told Snow. They bought a new fifth wheel RV the following weekend and were on their way in March. They spent the following months exploring national and state parks across the United States, documenting the trip on social media. During this time, the COVID-19 pandemic had also started.
But Voge’s health began to decline rapidly. “I had to throw up every day. I couldn’t keep the water down. I was quite malnourished and dehydrated,” he said. The symptoms were probably due to intestinal blockages from the cancer, he later learned. They went back to Minnesota and went to the Mayo Clinic emergency room.
In the emergency room, Voge expected to have another surgery like his first to remove as much of the tumor and mucus as possible and relieve his symptoms. “We were under the impression that we were going to go in, we’d do another surgery, clean it up and have a bit more normal life,” he said.
Instead, Voge got “devastating” news, as he describes it. Another surgery to remove his cancer was impossible. Three days later, Voge was put on a feeding tube. The couple began exploring various treatment options and clinical trials. “That whole fall was just constant trips to the emergency room,” he said. In late January 2021, Andy was hospitalized due to a hole in his gut.
“They wanted to go in to operate, but they just couldn’t get to the gut,” he said. “Then my doctor told me I had about a 50-50 chance of getting through that night.”
Voge spent the next few hours calling friends and family to say goodbye. Due to the pandemic, he was only allowed to receive a limited number of visitors. That night his wife was allowed to sleep on a cot next to him. “I thought it was done,” she said.
Voge survived the night, but the road ahead looked bleak. “They probably thought I had about six months to go,” he said. Voge was sent home with antibiotics and nutrition given through an IV, and the couple started looking into hospices. “We tried to enjoy what we could,” he added.
A few weeks later, Voge got a phone call that changed everything. Vaidya had recently moved from the UK to the Cleveland Clinic and happened to be in touch with Voge’s doctor at the Mayo Clinic. Vaidya had helped a handful of British PMP patients by performing a multi-organ transplant. But it had never been done in the US.
“When I came to the Cleveland Clinic, I was trying to say…there is another option…if patients have failed conventional therapy. I have a solution,” Vaidya told TODAY.
In a multi-organ transplant, all diseased abdominal organs, such as the intestines, stomach, pancreas and liver, are removed and simultaneously replaced by healthy organs. This type of transplant has been done since the 1980s, but for the treatment of PMP it is new, Vaidya said.
“I must reiterate that this transplant is reserved for patients who fail (the debulking surgery and heated chemotherapy),” Vaidya said. “That conventional procedure is quite successful, (since) 85% of patients will do well after that and have no recurrences or small recurrences that can be removed,” said Vaidya. “That fails in a very small percentage of people.”
“It is a very radical procedure. … The whole concept is quite daunting,” recalls Voge. After taking a few days to think about it, the couple decided they wanted to keep fighting and that this was their last hope. “Pretty quickly we said we have nothing to lose,” said Voge.
As soon as he was told he was approved for the multi-organ transplant, the couple packed up and moved to Cleveland. Voge was added to the organ transplant list at the end of July 2020. Then we had to wait for a donor. “At this point, my biggest fear had shifted from the surgery itself to not being able to get organs fast enough,” Vogue said.
As his medical teams worked to identify an organ donor who was a match, Voge’s condition worsened.
“You could tell it was getting worse. I got jaundice, my liver gave out,” he said. While in the hospital to have his liver drained, Voge got the call that they had found a match. One person would donate all seven organs to save their life.
The operation lasted 17 hours. After removing Voge’s liver, stomach, pancreas, and intestines, Vaidya removed as much of the tumor as possible from Voge’s abdominal cavity and transplanted the healthy donor organs.
“It was a great team effort,” said Vaidya. It was the first time doctors performed a multi-organ transplant to treat this type of cancer in the United States.
Voge remained in the hospital for another six weeks. Other than a few routine procedures to flush out excess fluid in his abdomen and pneumonia, his recovery has gone well. He thanks his wife for helping him through everything. “Rachel has been my rock,” he said.
Voge’s first transplant evaluation was just over a year ago. Today, he can eat again and even recently went on a 30-mile bike ride.
“The unfortunate part of appendic cancer is that it has a really high recurrence rate, so the future is still pretty uncertain. But it’s definitely a lot better than it was,” Voge said, adding: “Dr. Vaidya is very hopeful about the long-term outcome.”
According to Vaidya, the chance that he will still have these organs in 10 years is about 70%.
A multi-organ transplant will not be the answer for all abdominal cancers. But for patients with slow-growing tumors like PMP that have failed to respond to conventional treatments, this surgery has a good track record.
“It’s quite early now. We need more patients and data,” says Vaidya.
In the meantime, Voge’s story may give patients and doctors hope about what’s possible. “There is always hope in different areas of our lives. And never give up that hope,” said Vaidya.
Voge wants other appendix cancer patients to know that this is now an option, and to remain hopeful about new treatments.
“Even in those darkest moments… there was always something to fight for,” Andy said.