Scott Hamilton: An Update

Scott Hamilton 2Figure skating legend Scott Hamilton, a longtime friend of the PNA, has successfully battled testicular cancer and a craniopharyngioma, which has now recurred. He currently works for NBC, covering skating. He does a podcast for a web-based television network for figure skating. He does a lot of public speaking at corporate events. He owns a skating academy in Antioch, Tennessee and works with the Nashville Predators, an ice hockey team. He and his wife Tracie have four children, two birth children and two adopted from Haiti. PNA Editor Suzanne Potter recently spoke with Scott by telephone. This is a slightly condensed transcription of the interview, so you can hear Scott tell his own story.

On the road to diagnosis with pituitary disease:

I was diagnosed with a craniopharyngioma in 2004. “Cranios” are something you’re born with. So I had all these health problems when I was young but it remained undiagnosed. And then when I started skating all those issues went away. I skated all those years and remained pretty healthy until 1997 when I was diagnosed with testicular cancer when I was about to turn 39. I did the full round of chemo, and did the big surgery and seven years later being pretty healthy, eight months after I retired from skating, I started feeling really weak and depressed and awful. I thought it was because I had stopped skating and my life and fitness level was different. But then I realized I need to practice what I preach. I tell men especially that they need to be vigilant about their health. I made an appointment at the Cleveland Clinic. They gave me a head scan and that’s how they found my craniopharyngioma in November 2004. They did the brain biopsy in mid-November, which is kind of a scary thing. We discussed the treatment options and gamma knife surgery made sense for me at the time so we did that in early December. We did scans every six months and then every year and everything was fine until 2010. And then it was back. This time it presented itself very well for surgery. So I had the surgery. Unfortunately, as can happen in that kind of surgery, they nicked an artery, which became an aneurysm, and then that was obliterated in Cleveland.

So that was nine cerebroangiograms that summer. They go up through the groin with a scope and then they check out your brain. I’ve had a total of ten of those.

And then in 2016 they found it again. I was in for a physical and they noticed that on a routine MRI they saw something was different on my scan. They thought that I was having a leak because it was black and normally craniopharyngiomas show up as white. So they put me in for an emergency cerebroangiogram. They said everything was great. Then they said we’ll do another MRI, for a finer cut. They did that and they found the beginnings of another craniopharyngioma coming back again. So I’m in the process of that right now, trying to figure out treatment options. There’s proton therapy which is a new treatment option but because I’ve had gamma knife radiation my optic chiasm can’t take any more radiation so I’m probably not a good candidate for that. There’s a medical option which shrinks the tumor to manage it but with my hormonal challenges it seems that doesn’t quite make sense unless pre-surgical I needed to shrink it back. I don’t want to go on another kind-of targeted chemo therapy drug for the rest of my life. So for me, it seems like the best course of action is to keep an eye on it, and when it presents itself as a troublemaker, then I’ll get it surgically removed again. But the surgery is a little bit more difficult this time because they have to undo everything they did before and go around the scar tissue. So it’s a little challenging

How did you get involved in the PNA?

Soon after my brain tumor diagnosis my friend Ken Baker from E Entertainment News, who had a brain tumor too, brought me to Bob Knutzen, because Ken was on the board of the PNA. Bob was a wealth of information and support and I understood better what I was up against and how better to handle everything.

I was being managed in an ordinary way, what all kind of institutional endocrinologists do, they say ok, here’s your height, your weight, your age, here you go. And I was like, no, not so much - it doesn’t really work for me. It was bare minimum. I was better off than most because of my relationship with PNA and better understanding my challenges.

My wife and I wanted to have another child and because of pituitary and fertility issues, Bob introduced me to a fertility specialist, Christina Wang. Dr. Wang put me on a regimen of three intramuscular shots and three subcutaneous shots and I did that for two years. Soon after I stopped doing the injections, within weeks, our son Max was on the way. We call him miracle Max.
I was doing a lot of things with the PNA. We did the virtual hospital, helped them with their website. At one of their meetings I met Dr. Lewis Blevins, an endocrinologist who practices in San Francisco.

I had had it up to my earlobes with the suffering that I dealt with. Having pituitary disease is unique and it’s a custom blend of hormonal support. He told me about an endocrinologist who had your brain tumor resected, the same surgery by the same surgeon at age 14 and decided to become an endocrinologist. I said where is she practicing, and he said “Nashville,” which was very convenient, because I live in Nashville. Within blood work and one visit, she adjusted every single one of my medications and within four days I felt like a different human being. Her name is Dr. Jessica Devin.

How has the public reacted to you, as you’ve been on your pituitary journey?

I meet so many people that have no idea what’s going on, they just know that their lives are difficult. I met a girl once who came up to me and said “Thank you for being so public about your brain tumor. My life is horrible. How are you able to live a normal life?” These are the typical questions I get. I asked her, “How are you being managed?” She said, “Managed? They just removed my brain tumor but I’m on my own.” So, so many people out there are underserved. And the fact that the Pituitary Network Association exists, and the fact that they’re constantly updating their material. They offer constant information access for people with pituitary disease. In many respects if someone has a limited health care plan, or no plan at all, they’re not going to get the information to live as normal a life as possible.

The fact that people can find the PNA’s information, no matter what the pituitary disease is, they say, “At least now I know what’s wrong. And now I at least have a plan moving forward on how to live a more normal life.”

Being there for the opening of the Pituitary Center of Excellence at Baylor University a few years ago was great. The PNA’s site is just a resource that allows people to know that what they’re feeling is predictable for their condition. And here’s ways of getting back to living your life as normally as possible. Understanding that you’re not just going crazy, that it’s a physical thing it’s not necessarily completely a mental thing that you’re going through. Pituitary health is so important for your quality of life and a lot of people just don’t know what they’re going through. And so to have an association to have a resource that can really guide people through their challenges is so beneficial.”

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