Many of us recognize Scott Hamilton as the Olympic figure skater who took home the gold medal at Sarajevo in 1984. But fewer know that when he was about two, he contracted a serious illness that made him stop growing for several years. Later, that condition was corrected, but he went on to face testicular cancer. More recently, he managed to contend successfully with a brain tumor, and his courage has inspired his fans all the more. Our own medical managing editor, Thomas Chappell, MD, asked the champion to talk about his diagnosis and treatment for a brain tumor. Here’s Scott’s story:
It had been seven and a half years since I completed treatment for testicular cancer, and I had stepped away from skating and made some life changes, including getting married, starting a family and moving into a new house. Though I had an infant son at home, I was feeling passionless, without energy. I just didn’t feel like myself. With all of these new life stressors, I couldn’t put my finger on what was troubling me, whether it was physical, emotional, mental or all of the above.
I decided that I wanted to rule out the physical, so I called my doctor in Cleveland. He said, “Go get some blood tests done.” A few days later I get a call. They found only minuscule amounts of testosterone (male hormone) in my blood. Because of that, they felt that with my history of testicular cancer, my remaining “soldier” (testicle) had probably kicked the bucket due to my chemo treatment. My doctor recommended a topical gel (rubbed on the skin) to replace the testosterone, but something about that didn’t really make sense to me. There was still something that wasn’t quite right.
So I set up an appointment with my urologist, who had done the surgery for my previous testicular cancer. I said, “Look, I want to sit down and talk to you, and just rule out everything.” I’d always been very vigilant about caring for my health, and have preached that in every speech I’ve given over the last seven and a half years.
I told my urologist that my vision had changed.
He goes, “How old are you?”
“Well, that’s it. You’re getting older, and you’re eyes are going to change.
I said, “Well, then, why is it purely peripheral?”
He said, “What?”
“If I hold my hand over my eyes this way,” I told him, “everything’s blurry on the outside, and everything’s focused on the inside.”
He goes, “Okay, that’s something different. Let’s get you in for a head scan.”
So I went in for an MRI, and my doctor was waiting for me after the test. He said, “You have a brain tumor.” I just couldn’t believe it. I thought that because I had had testicular cancer, major surgery, and three months of chemotherapy, that I’d paid my dues. (laughs) I thought that I was going to be bulletproof for a bit.
I had this young family, including a son who was just a year and two months old, and I’m thinking, “How am I going to do this?” I knew that how I handled it would be an example for my family.
Anyway, we all knew that I had had hormone problems, and the scan showed a tumor right behind my nose at the base of my brain. It was clinging to the optic nerve and causing the vision problems. And it was around the pituitary gland (the “master” gland in our bodies). In order to give me the right treatment, they had to find out exactly what kind of tumor it was, which required getting a piece of the tumor to study under a microscope.
What I didn’t realize at first was the considerable risk of this brain biopsy. And of course they have to tell you the worst-case scenarios. All the while, I’m trying to look for the goofy, bright side of this thing. “We seem to have found a safe corridor?” OK, I know I don’t use most of my brain, but “safe corridor,” what does that mean?
They told me that “it means we could touch something, hit something. There could complications, like loss of strength on one side of your body, speech disturbances, changes in the way you think and feel, damage to your vision and so on.”
Later that day, my family arrived at a hotel near where I was doing a benefit. I went up to the room and Aidan, my son, was playing on the floor, and my wife, Tracie, says, “Okay, what’s going on?” I said, “Well, I just came from Dr. Klein’s office and I have a brain tumor.” It was the hardest thing I’ve ever had to say to anybody in my life. She just paused for a second, grabbed both my hands, put her head down and started praying. That was an extraordinarily powerful moment. It gave me incredible strength, focus and resolve. I knew that ultimately we were going to be just fine.
The only thing I could do was go ahead and get the biopsy. Neither Tracie nor I slept much the night before, because I was so scared about the procedure. I thought, maybe this would be the last time that I would be able to communicate with her. Or if things went wrong, I might lose some strength and become a burden to her. So we prayed through the night.
I went in for the biopsy at 6:30 a.m. I remember waking up in the Recovery Room. I looked up at the clock and it said 10:20. I knew what time it was. I knew where I was. I knew who I was. And I knew why I was there, which made me feel so relieved. It was one of the most powerful moments of my life, knowing that what could go wrong, didn’t go wrong.
The diagnosis came back: craniopharyngioma, which is better known as a pituitary tumor.
So, I said, “Okay, how do we treat this thing?” The tumor’s nature and location made it inoperable. They couldn’t just go in and pluck it out, because it was clinging to the optic nerve, right up against where it goes into the brain, and it was also clinging to the pituitary shaft.
It just so happened that they were having a symposium on brain tumors at the Cleveland clinic at that particular time. Dr. Barnette, my neurosurgeon, was surrounded by his peers, whom he really respected. He anonymously floated my case across a broad range of neurosurgeons just to see how they would handle it. He said it became a animated discussion with no clear consensus.
Dr. Barnette finally suggested that I consult with Dr. Ed Laws, one of the world’s foremost experts on tumors of the pituitary gland. He said, “I’ve looked over your history and your scans, and I can tell you that if you were my son or my brother, I would tell you that the way to treat this is with Gamma Knife radiation.” That’s a nice way of giving somebody advice; it means that they feel strongly about it, they believe in it.
Getting that information, I came back to the dinner we were having and I just wanted to hug and kiss my wife and tell her, “We’re gonna be just fine. I’ve got the best minds in the world on this, we’re moving forward.”
I had to take this powerful anti-inflammatory steroid called Decadron. One of the side-effects is that I could not stop eating. I’m so grateful that my wife is really skilled and knowledgeable about food supplements and homeopathy. She gives me just the right nutrients, so I wasn’t eating junk and gaining 500 pounds throughout this process. I still put on a great deal of weight, which really bothered me, because I wasn’t used to that. I was used to being lean and mean.
A lot of it, too, was just getting sources of inspiration wherever I could. One was the Red Sox coming back to pummel the Yankees and win the World Series. I figured if they could come back from the hole they were in, after the devastation of game six, I would be just fine. I thought, “As low as I am right now, I’m going to come out of this a much better person.” And it’s become kind of my mantra. “I’m going to evolve.” And that was a huge source of inspiration.
I’m trying to make getting ready for the Gamma Knife treatment as humorous as possible. First, they screwed a metal frame to my head. (laughs) They screwed it into my skull. As a surgeon, you know all about this, I’m just trying to figure out a way to describe it to your readers. And so they had to give me numbing medication with a needle in my scalp, and that hurt too, but after that all I felt was pressure.
Next, I had to go in for an MRI scan with the metal frame on my head. The frame serves as a point of reference. Your head then locks into the Gamma Knife machine with this helmet over your head that helps “channel” the radiation precisely to the target, i.e., the tumor. The computer knows the exact shape, size and location of the tumor, so it can best strategize the radiation. There are 201 points of radiation coming in to one spot. So it’s low dose everywhere else, culminating in that one spot (the tumor), which just gets absolutely nuked. It’s all wonderfully figured out, all calculated perfectly.
So they sit at the computer and strategize to make sure they are delivering the treatment the best way. The whole time they’re doing that, I’m allowed to eat and do a lot of things. But I’m wearing this frame on my head, and I can’t easily get food around the frame. It was like problem-solving. OK, I’m trying to eat some fruit. How do I get it over this or under that? There’s this big bar going right across where my mouth is, and to get the food in there without messing everything up. We had a good laugh about it all. It was clumsy and silly.
After several hours of waiting, they said, “We’re gonna do this 26 times. Each time we’re gonna slide you in, lock it down, zap you, pull you out, adjust, put you back in, lock you in, zap! Pull you out, adjust, put you back in, lock you in, zap! A total of 26 times. So I said, “How long is this going to take?”
“Less than half an hour.”
Inside the machine, it’s kind of a ker-chunk, pushing all the points on your skull where the frame is screwed in. But it wasn’t so bad. But after the 16th time, I was swinging at phantom people. I just wanted to punch somebody; I was so frustrated. It’s just like somebody tapping with the end of their finger in the middle of your forehead incessantly, and after a while it starts to be uncomfortable. But by 16th time, I also started to think, Okay, I’m more than halfway there. Let’s get through it. And soon they said, “OK, you’re done, let’s get this frame off!”
Once they released the screws, the pressure was released, but then there was a new type of discomfort. It almost felt like as they released the pressure, they were actually applying more pressure. I’m like, “Guys, guys, guys! Lefty loosy, rightie tightie, okay? Are you gettin’ me on this?”
The amazing thing is, I was all done. Done! I was treated for this thing and now I was done!”
They had treated me the best they could, and now I had to go on to what my new life was going to be. I knew it was going to be different, because when you go through something like that, your pituitary gland is pretty much gone. Sayonara! There’s nothing much left of it, because it took the hit along with the tumor. So you kind of realize, “OK, now I’ve become this new person who has new hormonal issues to deal with everyday.” For example, testosterone. What about fertility? We wanted another child. I had testicular concerns and now I had a pituitary brain tumor. Was I going to be able to produce another child?
So that was in my mind, as well as the treatments: Instead of it being the testosterone gel for fertility issues, now it was going to be this new injection that stimulates testosterone production in my body.
I also have to take all of the hormones that my pituitary gland can no longer produce because of the radiation. There is one to stimulate my thyroid gland, and a very important one to stimulate my adrenal glands.
One of the most amazing things is that I got my vision back. And earlier this year, we welcomed my second son, Maxx Hamilton, into the world.
The best way to tell whether a tumor is benign or malignant requires getting a piece of the tumor, slicing it thinly, treating it with special stains, and looking at it under a microscope. This can often be done by placing a needle through the skin and into the tumor. Discomfort is usually minimal and the greatest risk is usually the possibility of causing bleeding in the area. Since insertion of a needle is a “blind” procedure, some sort of medical imaging like a CAT scan, MRI, fluoroscopic X-ray or ultrasound is needed.
Using precise computer techniques, the tumor receives “killer” doses of irradiation, while immediately surrounding normal tissues receive relatively little radiation—a distinct advantage.
Given the many particularly sensitive areas of the brain, precise guidance of the needle is vital. This is accomplished with a technique called “stereotaxy.” This works much like the global positioning system in your car. The concept is that if you can define at least 3 points in space, you can relate all other points in the world to those 3 points, defining every point in the world. In the case of GPS, satellites orbiting the earth serve as points to which all other points can be referenced. Digital maps in a small computer in your car allow your position to be continually referenced to every other point on earth so precisely that it can be depicted on the map.
The pituitary gland is actually part of the brain. It sits at the center of the base of the brain, directly behind the top of the nose. The pituitary gland is often called the master gland because it “supervises” the activity of body’s other glands. Tumors can occur in and around the gland. Most are benign. Some arise from the actual cells of the pituitary gland, while others arise from tissues in the area, or in the case of craniopharyngeomas, from remnants of tissues trapped there during embryonic development. Due to their proximity to the optic nerves, these tumors most commonly cause loss of peripheral vision.
The interesting thing about Scott Hamilton’s case is his history of growth arrest as a child. Craniopharyngeomas can cause this, but could not be easily diagnosed when he was young. More perplexing is that several brain scans taken during his bout with testicular cancer did not show the lesion. The question remains whether the craniopharyngeoma was present at birth and whether it had anything to do with his testicular carcinoma.
Gamma Knife Radiation Treatment
For those Trekkies out there who feel they simply must be treated with a laser, this is as close as you will get. Lasers actually have limited use in medical treatment, but most of us facing health issues today are enamored with being cured by a zap from a laser, which probably means we’ve been watching way too much television!!
Gamma Knife radiation is not so different from the radiation treatment that has been used for years to treat various tumors. The key difference is that stereotactic techniques are applied so that dangerously intense doses of radiation can be applied with little risk to normal tissues. Using precise computer techniques, the tumor receives “killer” doses of irradiation, while immediately surrounding normal tissues receive relatively little radiation—a distinct advantage in the brain where tumors often approximate delicate normal structures. The technique is referred to as “radiosurgery” due to the scalpellike precision. Like any surgery though, it does have its risks.