Greg Nelson

Martial arts expert battles rare and difficult cancer with the help of a team of Mayo experts.

By anyone's standards, Greg Nelson is tough.

The founder, owner and head coach at the Minnesota Martial Arts Academy in Minneapolis, Greg is one of the top martial artists in the world. He's also a former gymnast and collegiate wrestler. He expects a great deal from his body, and is familiar with the aches and pains that come with intense training and competition.

But in the spring of 2002, Greg began experiencing pain unlike any he'd known before. It started in his back and eventually moved down his body.

"I was taking pain medication, but it didn't do anything to relieve my symptoms," he says. "And I was incredibly rundown."

Greg's physician ran him through a battery of tests. On Memorial Day 2002, a CAT scan revealed that Greg had stage IV non-Hodgkin's lymphoma. The cancer had spread to his liver and spleen. The news was a shock, but there was a measure of relief in finally having an opponent to fight.

"Once we knew what was wrong, we were prepared to deal with it," says Greg's wife, Vee. "Not knowing was the hard part."

Greg immediately started a six-month course of chemotherapy, and was overjoyed when his back pain disappeared. After his fifth month of chemotherapy, tests revealed that his cancer had gone into remission.

Greg thought he'd wrestled another opponent into submission. But he would soon learn his battle with cancer was only beginning. A new pain emerged. And finding the cause this time was even more difficult. Coming up with a diagnosis would take a great deal of detective work by a team of Mayo Clinic specialists.

Unraveling a mystery

When the new pain emerged, it moved down Greg's body, and his muscles began to weaken. The 38-year-old, who just a year earlier had been winning gold medals in international jujitsu competitions, came to rely on a cane to help him walk. At home, he would drop to the floor and crawl from room to room rather than walk on legs that throbbed with pain.

When Greg's pain began to spread and intensify, his physician referred him to Mayo Clinic for more specialized testing. Greg and his family traveled to Rochester and stayed with relatives, but his pain became so debilitating, he had to be admitted to the hospital.

"Greg had such severe pain that we sent him to the intensive-care unit to be sedated and monitored. His was probably the worst pain syndrome I've ever seen," says Joseph Colgan, M.D., a Mayo Clinic hematologist, who has been in practice for 30 years.

Greg's wife and their children, Nina and Gunnar, and Greg's mother, Pat, were a constant presence at his bedside. Since Greg was often so heavily medicated that he was unable to speak for himself, Vee became his voice.

"I felt it was my job to advocate for Greg and to make sure the doctors knew who they were dealing with," says Vee. "I put together a photo album with pictures of our family, and pictures of Greg training and competing. I wanted the doctors to know that this had been a very healthy man, and a man who could tolerate pain."

While his family waited and worried, a team of Mayo Clinic physicians worked feverishly to determine what exactly was causing Greg's pain.

"Because of Mr. Nelson's symptoms, we knew there was neurological involvement," says Brian O'Neill, M.D., a Mayo Clinic neurologist who joined Greg's medical team. "Right away we began running tests and examining him to determine whether this was related to his cancer or was caused by something else, such as an infection."

Initial testing showed no evidence of active lymphoma.

"When our standard testing failed to provide us with a cause for Mr. Nelson's pain, we were stuck," says Dr. O'Neill. "It's at that point Mr. Nelson benefited from being at Mayo. Our approach to care meant we were able to spend enough time with him to carefully analyze the problem. We had access to state-of-the-art technology to help in our diagnosis. And we were able to bring together a team of specialists to work together on finding a solution to the problem. Without that, I don't believe Mr. Nelson would have survived."

Greg's medical team included neurologists, oncologists, hematologists, a neuroradiologist and pain-management specialists. Each examined Greg and reviewed his test results.

During one medical team meeting, someone suggested doing a biopsy on Greg's sural nerve (a nerve in the leg typically sampled because it has no motor fibers). After the biopsy came back negative, another team member suggested using a new, high-powered MRI machine to scan Greg's sciatic nerve for the presence of cancer, even though previous tests gave no indication that lymphoma had returned.

The new MRI scan revealed a faint abnormality in Greg's upper sciatic nerve. Robert Spinner, M.D., a Mayo Clinic neurosurgeon specially trained in peripheral-nerve surgery, was called in to help determine if the abnormality might be cancer.

Based on his physical examination of Greg and his review of the MRI images, Dr. Spinner recommended doing a biopsy on Greg's sciatic nerve. Although the surgery had some inherent risk, the team agreed it was necessary.

"While taking a biopsy of a major nerve is not typical, we've been developing the technique and doing it more often over the past few years to help establish a diagnosis," says Dr. Spinner. "We're careful to test the nerve while we're in the operating room to ensure that we're not damaging any function."

Dr. Spinner describes the sciatic nerve as a cable made up of 20 spaghetti-thin nerve strands. During the biopsy, one small strand of Greg's sciatic nerve was removed.

The results of the biopsy came back positive for cancer. On Christmas Eve 2002, physicians were finally able to tell Greg what was causing his pain: a rare disease called neurolymphomatosis.

"I have only seen one other person with this disease in my entire career," says Dr. O'Neill, who has been at Mayo for 25 years. "There are only 33 examples of this in medical literature. There's no question in my mind that none of us would have been able to make this diagnosis alone. This was a unique case that showcased the benefits of the Mayo model of care."

And lessons learned through this difficult diagnosis are benefiting other patients, too.

"We see many cancer patients with unexplained nerve problems that have been attributed to chemotherapy, radiation or inflammation," says Dr. Spinner. "Now we're starting to evaluate these patients for nerve involvement directly from cancer. It's exciting to see this diagnostic evolution applied to improve patient care."

Taking on a hidden opponent

Since neurolymphomatosis is so rare, Greg's physicians had little related experience to draw from when determining treatment.

"It was a hard position to be in as a physician," says Irene Ghobrial, M.D., a Mayo Clinic hematologist. "Greg is young, has a young family, and was ready to fight. We wanted to do whatever we could to help him, but we weren't sure exactly what treatment he would respond to."

Since Dr. Colgan had never treated a patient with neurolymphomatosis, he drew from his experience in treating other types of cancer to determine a treatment plan for Greg, which pointed him to a stem-cell transplant.

But before a stem-cell transplant, patients must respond to chemotherapy. Greg failed to improve after starting his first chemotherapy regimen. So his physicians tried a different approach, and a second set of chemotherapy medications proved effective.

After completing chemotherapy, he then underwent the stem-cell transplant. Greg — and his physicians — were unsure how much to hope for. "I was the first person with this type of cancer that they had brought to treatment at Mayo," says Greg. "No one knew what to expect."

Greg's stem-cell transplant took place on Memorial Day, 2003, exactly one year after his initial diagnosis. The procedure was completed successfully and had an almost immediate effect.

"After the stem-cell transplant, Greg's wife called to tell me that he was walking," says Dr. Ghobrial. "It's been amazing to watch his recovery."

While physicians and other health care providers have played a critical role in that recovery, Greg and his family also have been important members of the health care team.

"Greg is a remarkable person with incredible determination and enthusiasm for everything he does," says Dr. Spinner. "And Greg's family is one of the most supportive teams I've ever seen. They stood by him every step of the way and were very involved in his care."

Vee says Greg's return to health was the result of many people pulling together for one goal.

"So many people have helped us throughout Greg's illness," she says. "The doctors and nurses have been wonderful. We received phone calls and emails from people around the world. It has been a blessing to have so much support."

Greg spent the summer building up strength in his legs, first with the help of physical therapists and later on his own. For months he used a walker to support him, and he still depends on a cane if he expects to be on his feet for a long time. "My next goal is to walk without the cane," he says. "Every week I'm able to do a little more."

Follow-up tests have revealed that Greg is cancer-free. And that's something he doesn't take for granted.

"When you get things taken away from you, you really appreciate them if you get them back," says Greg. "I lost my ability to walk. Now I feel blessed to be able to do something as simple as mow my own lawn."

While Greg is back to spending time at his martial arts academy, and has even begun coaching again, he no longer works 12-hour days. Instead, he takes his daughter to the bus stop each morning and picks her up at the end of her school day. He plays with his son, something he was unable to do for much of Gunnar's young life.

"When I was in the hospital, I would pray to God to let me live to see my children grow up," says Greg. "I prayed for enough physical ability to play with my kids. If I get back my ability to train, that will be icing on the cake."

And that just might happen.

"We really don't know what Greg's recovery will be like," says Dr. Colgan. "But nothing would surprise me with Greg. He's a very determined man. And he never gave up hope. People with aggressive lymphomas need to know that there is reason to be hopeful. These cancers can be cured."