Donald got a second chance at life…twice.
In early 1999, Donald’s grown children noticed that when he watched sports on television, the sound was turned up very loud. Because he had a family history of deafness, Donald made an appointment that February at Stanford University’s California Ear Institute. Doctors there did a routine hearing exam, which also included an MRI of Donald’s brain, and scheduled him for a follow-up appointment three weeks later.
But the doctors called back in 24 hours. They discovered that Donald had a brain tumor called an acoustic neuroma. “When you’re diagnosed with a brain tumor, you don’t hear much more after they say the words ‘brain tumor,’” said Donald, a 71-year old from Mountain View, Calif. “I was shocked. I had no reason to believe there was anything that seriously wrong with me.” Other than the hearing loss in his one ear, Donald had experienced none of the other symptoms that can signal an acoustic neuroma, such as loss of balance, ringing in his ears or facial paralysis.
Three days later he was back at the Ear Institute with his wife, Zee, by his side. There they met with his audiologist and a neurosurgeon. They showed him his MRI results: a tumor almost 2 centimeters touching his optic, balance and facial nerves. The neurosurgeon recommended a craniotomy to remove the tumor. The craniotomy would take 10 hours and require a team of nine specialists. They proposed to remove a square shaped section from the side of his skull around his temple, shrink the brain, and remove the balance nerve with the tumor on the effected side. In the end the surgery could have affected Donald with facial paralysis, hearing problems, vision problems and balance issuers.
“The doctors told me that I would be in rehab for 12 to 18 months,” said Donald, an avid racquetball player who also religiously works out at the gym and enjoys outdoor activities. “But they couldn’t guarantee that I would have a full recovery because one of the nerves could be affected by the surgery. In the end I could still have facial paralysis, hearing problems and balance issues.”
Not aware of any other options, Donald scheduled the surgery for late April.
Soon after the appointment, Donald’s daughter Lori in Florida and one of his neighbors began researching acoustic neuromas on the Internet, and both discovered a new non-invasive procedure using a device called the Accuray CyberKnife® Robotic Radiosurgery System, that was showing promise as a treatment. As coincidence would have it, Lori’s former roommate was a nurse who worked in Northern California with Dr. John Adler, one of the original pioneers of the CyberKnife System.
“We were on a short timeline because my surgical date was already set,” Donald noted. “But Dr. Adler saw us right away, in early April, and said he thought the tumor could be treated with the CyberKnife.”
After meeting with Dr. Adler, Donald got opinions from four other neurosurgeons. All recommended a craniotomy because they didn’t have enough information on the non-invasive option, Donald said. His son Bruce, who is an internist in the Atlanta area, told him that he should do what he believed was the best for him. “My wife and I knew we had to give the CyberKnife a try,” he added. “And if that procedure wasn’t successful, I could have surgery.”
In May 1999, Donald, became one of the earliest patients to undergo CyberKnife treatment for an acoustic neuroma. “I had three treatments, every other day, and the only accessory I had was a mask to keep my head from moving,” he said. “I didn’t have to take any medications before, during or after treatment and I didn’t have any side effects from the procedure.”
After his treatment, Donald resumed his racquetball games, took long walks with his wife and his best friend, an Old English sheepdog. He even went back to the gym, “probably with more gusto than ever before,” he added.
The worst part of the treatment, Donald said, was the six-month wait to find out if the CyberKnife treatment had worked. After his first follow-up MRI in November 1999, doctors noticed that the tumor was dying. Subsequent tests showed the tumor was shrinking, and by March 2001 it was half its size and completely dead.
But, just two-and-a-half years later, Donald faced another potentially deadly health crisis. During a routine physical in November 2003, his doctor noticed that his Prostate-Specific Antigen (PSA) level was almost 6. A month later, a biopsy revealed that he had prostate cancer.
“My doctors suggested several alternative treatments,” he said, everything from implantation of radioactive seeds to surgery. “But I didn’t want to experience the potential severe consequences that can result from those courses of action.”
Donald had been keeping tabs on the use of the CyberKnife® System for treatment of various tumors. He knew that since his treatment for acoustic neuroma, the CyberKnife System was being used to treat tumors in other parts of the body. “I felt I had another potential option that could be used to treat my prostate cancer,” he said.
Donald consulted Dr. Christopher King, a radiation oncologist, who again thought he would be an ideal candidate for CyberKnife treatment. In March 2004, Donald became one of the first prostate cancer patients to be treated with the CyberKnife System.
In this case, Donald underwent treatment on five successive days. As with the acoustic neuroma treatment, he felt no immediate ill effects, nor did he experience the common lasting side effects of prostate cancer treatment: incontinence, impotence or bowel problems.
And, again, the CyberKnife treatment was a success. At his follow-up appointments, his PSA level continued to drop, and by November 2006 it was down to 0.17 and no traces of cancer were detected.
“I’ve had experience with the CyberKnife on two extremities, and neither time did I have pain. I didn’t require a hospital stay, and I had no lingering effects,” Donald said. “And the best part is that I have been cured twice. I’m beginning to think I’m immortal.”
After his successful treatment for the acoustic neuroma, Donald wanted to find a way to help others who were going through similar health crises. After some discussion, his wife suggested that he form a patient support group, which would offer first-hand information about CyberKnife System as an alternative to conventional treatments for tumors.
Working with physicians from Stanford, Donald reached out to CyberKnife patients and developed an online community where anyone could get information about the procedure and talk with others about their treatments. The web site – www.cyberknifesupport.org – now gets on average 300,000 hits a month.
“The belief I had then, and still have, is that information is the most powerful tool for people who have been diagnosed with brain tumors or cancer. Not everyone is a candidate for CyberKnife treatments, but I believe they need to explore every option,” said Donald, a CyberKnife Ambassador who speaks publicly about his experience with the treatments. “We want them to talk to us, and to let them know that we’ve been there, done that, survived and continued living our lives as normally as we did before we were diagnosed.”