- Diagnosed with leiomyosarcoma at age 56 in 2001
- Treated with surgery, radiation, and later VATS for lung metastasis
- Required 40 hyperbaric chamber sessions
- Continues on as national racquetball champion
It's been 10 years since Warren Bailey was diagnosed with Stage IV leimysarcoma, a rare cancer that begins in smooth muscle, and he is as strong as ever. In fact, in 2011 he won the Gold Medal in the Huntsman World Senior Games, and a gold and silver at the National Doubles in Fullerton, California for racquetball.
Warren's been a winner for years though. Back in 2005, he won the Alaska State Racquetball Championship against men in all age brackets, despite numerous extensive surgeries to remove tissue from his upper right thigh.
Competitive players normally have to move fast and jump high to return the racquetball or avoid being pummeled by it, says Warren. “I can’t do all that,” he explains. “I have to be real smart about how I play the game.”
At 65, Warren has played racquetball for more than 21 years, and he is not about to give it up because he has cancer. In fact, he says, it’s part of what’s kept him alive.
Less is More with VATS
A few months after winning the state championship, Warren underwent an innovative procedure called video-assisted thoracic surgery (VATS) to remove metastases in his lungs. It’s a procedure his doctors agreed to postpone so Warren could compete in the national tournament in March and international tournament in July, where he placed in the top 15 and top 20 respectively in his age category.
VATS allows doctors to perform chest surgery through a series of small incisions. A camera inserted through one incision guides their work. The procedure is much less invasive than traditional open-chest surgery, which requires cutting through or spreading open the rib cage and cutting extensively through muscle. People who undergo VATS spend less time in the hospital, need less pain medication, and recover much faster.
VATS is available at only about 30 centers in the country, including University of Washington Medical Center, a parent organization of Seattle Cancer Care Alliance. That’s where Warren had his surgery, performed by Dr. Michael Mulligan.
“He has a really nice personality,” Warren says about the surgeon. “He’s real forthright. He tells you so you can understand it, and I don’t think he holds anything back.
“All the comments from everyone on the Internet and at the University of Washington [that I heard about Mulligan before we met] were positive,” says Warren. “And when I met him in person, it confirmed what they all said.”
Having done some research beforehand, Warren says he knew VATS was the best and least invasive, proven way to go.
“My type of cancer comes back many times, and the lighter procedure, if done right, actually gives a better chance of not seeding again for more tumor growth,” he explains. “Plus I can still play catch with my grandkids, hike, fish and, yes, God willing, [play] racquetball!”
His doctors, well aware that he prefers an active lifestyle, determined Warren was a good candidate for VATS. He spent only three days in the hospital after the procedure. Ten days after surgery, Warren and his wife, Kathy, were going on two-and-a-half miles walks.
After traditional open-chest surgery, patients typically spend a week in the hospital and then four to six weeks recovering at home.
Dr. Mulligan told Warren that he could play racquetball just 12 days after surgery and one day after removal of the staples that secured his incisions.
Sources of Strength
Just how important is racquetball to Warren? Here’s what he said in a speech to the National Masters Racquetball Association at the end of the 2005 national tournament in Canoga Park, Calif.: “Racquetball has been so important for my recovery, both mentally and physically, that I can say outside of God, racquetball has been the main reason I’m alive today.”
Actually, Warren lists his family ahead of racquetball. Kathy, his wife of over 40 years, has been a big support throughout treatment. So have his three children, who all live in Alaska, too.
“We’re very close,” says Warren. “I know a lot of people can say the same, but we’re close,” he adds emphatically. It has helped that his wife and sometimes one or more of his children have been able to make the trip to Seattle with him for treatments.
He finds support beyond his family, too. Since the fall of 2004, he has participated in the L-M-SARCOMA listserv, an online place for people to meet to talk about leimyosarcoma. “I joined the group to see if it could help me understand my disease a little better and to have conversations with people with my same disease,” Warren explains; he logs on daily. “Through them, I know the right questions to ask and what new treatments are out there.”
Group members encouraged him to find a doctor with specialized experienced treating sarcomas. Talking with others online has also helped him learn the terminology associated with his disease and treatment. The listserv is where he first heard about VATS.
The Beginning of the Journey
Warren first suspected health trouble when he noticed a lump in his leg in the fall of 1999. He visited his local doctor in Anchorage, who misdiagnosed the lump as a lipoma, a fatty noncancerous mass, that needn’t cause concern.
By the spring of 2001, the lump had grown noticeably and became discolored, so Warren returned to the doctor who reiterated that it didn’t need to be removed, but that he could remove it quickly at his office if Warren wanted. He did.
But the surgery was more intensive than planned, he says, taking several hours and getting only part of the lump. The tissue was sent to a lab for examination, and the pathology report came back with a diagnosis of leimyosarcoma. That’s when Warren’s quest for care brought him to Seattle.
The same spring, 2001, Warren, who served in the U.S. Army, headed to the Veterans Administration hospital in Seattle for evaluation. He had been told no doctors in Alaska were adequately qualified to treat his condition, and he was referred to Dr. Howard Chansky, a surgeon who specializes in orthopedic tumors at the University of Washington and the VA. In addition to confirming the leimyosarcoma in Warren’s leg, doctors discovered he had nodules in his lungs where the sarcoma had spread.
As a result of his evaluation at the VA, Warren had major surgery to remove cancerous tissue in his upper right thigh, the site where doctors believe his cancer began. Later doctors determined they had not gotten clear margins – that is, the edges of the removed tissue were not free of cancerous cells. So they knew some cancer remained in Warren’s leg. To get at it, he had another major surgery, followed by three months of radiation therapy. Chansky performed both surgeries. Then Warren headed home to Anchorage to heal.
Healing, however, was elusive. The wound from Warren's surgery refused to close and heal itself as expected. Radiation treatment may have been a factor. Radiation disrupts not only cancer cells but also normal cells in its path.
To promote healing in Warren’s leg, doctors prescribed treatments in a hyperbaric chamber. He attended 40 sessions – two-and-a-half hours per session, five days per week for eight weeks – at Alaska Regional Hospital in Anchorage. The treatment involves staying inside a small, pressurized room with high levels of oxygen.
The pressure was not only uncomfortable – “It was equal to being about 50 feet under the water,” says Warreny – but can also cause side effects. Warren suffered damage to his eyes. His vision deteriorated, and he needed two cataract surgeries. The hyperbaric treatment did help heal his leg, Warren says. But it was not completely successful, and in February 2003 he had another surgery, performed by orthopedic tumor specialist Dr. Ernest Conrad, to remove cancer as well as unhealed tissue.
Another Round of Treatment
By September 2003, Warren’s cancer was back in his leg. Also, one of the leimyosarcoma-related nodules in his lungs that hadn’t changed in years – a good sign – now appeared to be changing, according to imaging studies done by his doctors. More surgery would be needed.
To shrink the leg tumor before surgery, doctors put Warren on a chemotherapy regimen called AIM for short. It consists of the drugs adriamycin, ifosfamide, and mesna. “It’s the hardest one you can have,” says Warren.
Usually doctors limit use of AIM to younger patients because it’s so taxing on the body. But they decided to try it with Warren because of his level of fitness and strength, and because his vital signs were good. From October 2003 through January 2004, he went through six cycles of AIM, spending one week in the hospital at University of Washington Medical Center, then two weeks out of the hospital for each cycle.
Though it was debilitating at the time, the treatment worked, shrinking not only the growth in his leg but also the active nodule in his lung. So in January 2004, Dr. Conrad went to work to remove more leg tissue in yet another surgery.
Warren estimates that during his odyssey with cancer so far he has spent a total of one year in a wheel chair and one-and-a-half years on crutches. He’s also battled through three major infections, including two serious infections with Staphylococcus bacteria.
Back on the Court
About two weeks after his VATS procedure, Warren and his wife hit the road in their motor home – where they stay when they’re in Seattle for treatment – and headed back home to Alaska. Warren’s first order of business was to visit his children and grandchildren. Next was, of course, heading to the racquetball court to see how he could play.