Brain Tumor Survivor
The Eternal Optimist
Scott Hamilton is many things — a husband and father, figure skating champion and Olympic gold medalist, broadcaster, author, motivational speaker, and testicular cancer and brain tumor survivor. His unwavering optimism in all aspects of his life has enabled him to help others who are enduring the challenges of cancer.
In 1977, Scott Hamilton lost his mother to breast cancer. At the time, not many treatment resources were available at their local hospital, and he discovered much more research was needed to fight cancer. Twenty years later, he found himself facing the need for himself.
“I was on tour and hadn’t been feeling well,” Scott explained. “I was having abdominal pain, and it was hard for me to stand up straight. I assumed it was an ulcer, so I had it checked out. The doctor told me it was a mass. I thought that was kind of funny. At just more than five feet tall, no one had ever used ‘mass’ to describe anything about me.”
Hearing that it was either benign, malignant or something else was unbelievable. Scott thought of his mom and her struggle, and he immediately became shrouded in fear. That fear, however, was short-lived. Something clicked, and his mood changed. He realized he had to be fully focused and ready for battle. He took his tour bus to Cleveland, where he had a biopsy. The next morning, several physicians told him he had a germ cell tumor that was testicular in origin.
“That seems kind of personal,” I told them. ‘Can I have something else? After all, my audience is 70 percent female, and I really don’t want to be talking about testicular cancer for the rest of my life.’”
They told Scott that he needed to take it seriously, and that’s when he told them no, he needed to deal with it however he could.
“I decided to use humor and levity because I wanted to be able to look back one day and think ‘There was a lot of laughter in my hospital room,’ instead of thinking about all of the physical descriptions of my cancer. I also thought of how my mom handled her treatment. She always kept it positive, saying things like, ‘Chemotherapy is amazing. I always hated my hair.’ I knew that was how she would want me to go through this experience. Once I adopted that positive attitude, my nurse, friends and people around me bought into it.”
He tried to learn more about testicular cancer. “The internet was just taking off, so I couldn’t find much online other than medical journals. There wasn’t any user-friendly information out there for people like me.”
Scott also explored fertility issues.
“At the time, I didn't have any children, and I didn't know what the future held for me. Many of us with testicular cancer are infertile after treatment, so I wanted to do everything right on the front end of treatment. I wanted to be sure that someday in the future, I'd be frustrated with raising normal teenagers! I would tell anyone to be sure to bank before treatment — just in case. It's very important. You never know what the future holds."
He soon began treatment, which consisted of four rounds of neoadjuvant chemotherapy followed by surgery.
“In the third round of chemotherapy, reality kicked in and I became depressed and angry. My whole life had changed. I was tired and bloated. I had no hair on my body, and I felt all alone. I had wonderful friends from all over the world call and visit me, but it was so different than the life I’d been living for the past 20 years. I was ready to quit, but a good friend convinced me that I could do it. And I did.”
After finishing the fourth and final round of chemotherapy, Scott had surgery to remove the tumor. The surgery was successful. With a tough recovery ahead, Scott was determined to “own” his cancer. He would be the one in charge.
“I realized this was my opportunity to inspire everyone sitting in an infusion chair getting chemotherapy. I could show them there is a quality of life out there, and I didn’t just witness it — I went through it. So, I set a goal for my recovery. I was skating in a national show at The Forum four months later. After my performance, my first words at the microphone were “I win!”
Life went on for Scott. He was feeling good until he noticed eyesight changes in 2004.
“At first, my doctor told me vision issues happen when you’re in your forties, but I persisted. I told him my peripheral vision was super blurry. When he heard that, he sent me for a CT, which showed I had a brain tumor. When I told my wife, Tracie, the first thing she did was take my hand, and we prayed. It was both powerful and empowering. I felt peace and knew we’d be okay.”
To learn more, doctors performed a biopsy by cutting a hole in the top of Scott’s head and inserting a needle.
“The doctors told me that with this type of biopsy, a lot of bad things could happen, but I was fortunate. When I woke up after it, I looked at the clock, decided I knew who I was and where I was, and said ‘test’ out loud to make sure I could speak.”
The brain tumor was diagnosed as a craniopharyngioma, a benign tumor that is typically detected early in a child’s life.
“I had growth issues as a very young child and was in and out of the hospital to find the reason. My parents were never given a definitive answer, but now I know that this type of brain tumor can stunt growth,” Scott explained. “I’d probably had it all of my life, but it never did its mischief while I was skating, so I didn’t know it was there.”
Scott’s treatment consisted of gamma knife radiation. His pituitary gland was damaged, which meant he had resulting hormonal issues that were treated with steroids.
Once again, life went on. Six years later, he began feeling symptomatic while he was traveling. He remembered after having the tumor removed, his doctors told him, “By the way, these things like to come back.” He called Tracie to let her know he was stopping off in Cleveland to get checked out.
It had, indeed, come back. Scott had transphenoidal surgery to remove the tumor, but this time there was a complication.
“When I woke up from surgery, my leg, of all things, was in a brace,” he laughed. “My ophthalmic artery was nicked during surgery, and an aneurysm formed. I had angiogram after angiogram with a catheter in my leg, which explained the brace. A specialist who focused only on aneurysms was brought in, and he coiled the aneurysm from the inside. That was a tough one!”
Once more, normal life resumed, with Scott continuing to get follow-up scans. During a routine cerebroangiogram in 2016, his doctor noticed a black spot and was concerned about a stroke. A scan showed the very tip of the brain tumor coming back.
“We caught it early enough that my doctor allowed me to try something. I wanted to go home, get fit and get stronger before having more surgery. I also wanted to research my options. I’d heard about a new targeted therapy, and I wanted to learn more about proton therapy.”
That was August. When Scott returned for more scans in February 2017, they discovered the tumor had shrunk.
“These tumors just don’t shrink,” he explained, “but mine did. My doctors couldn’t explain it medically. Whatever I was doing – getting fit, praying, keeping a positive attitude – it all worked. It was an absolute miracle.”
That infectious attitude especially comes through when Scott describes how he handles his cancer challenges with his four children.
“Your kids depend on you for guidance and information, and they follow your lead. I set the tone with a little bit of humor. When my youngest son asked me if my brain tumor was back and if I was scared, I said, ‘It is! Do I look scared?’ He said I didn’t, so I told him he shouldn’t be either. I don’t let cancer take every second of every day. I won’t let it diminish me like that.”
As a patient, Scott identified many things that would have improved his own experience, and he felt compelled to take action.
“I knew I’d been given a long-term public platform, and I charged myself with how to get more information directly in front of people. We needed to make oncology more patient-centric, raise more money for research and give oncology a public face and voice. I wanted to raise the bar and lift up the future of oncology.”
“One particular statistic really shocked me,” he said. “According to one survey, people would almost rather die than go through cancer treatment. There was obviously a lot of fear out there, and I wanted to rip off the ugly mask of chemotherapy by explaining what it is, how it works and the side effects to expect. That was information I would have found helpful.
“I remember asking my doctor how sick I’d be with chemotherapy, and he told me ‘moderate to severe.’ What does that mean? And I know now that the depression and anger I felt during chemotherapy were emotional side effects, but I didn’t realize it at the time. I wanted to provide information to patients so they weren’t flying blind.”
With the goal of improving patient survivorship by creating world-class cancer research and the highest quality patient treatment and care, Scott created the Scott Hamilton CARES Foundation (Cancer Alliance for Research, Education and Survivorship). From that came several other resources, including Chemocare.com, Radcare.org and the 4th Angel Mentoring Program.
“4th Angel came from the idea that when you have cancer, the first angel is your oncologist. The second is your oncology nurse. The third is your friends and family, and the fourth is someone you can talk to who has ‘been there, done that.’”
All of these resources, accessible through www.scottcares.org, are designed to help educate people and make them aware of the options they may have.
