Figure Skating Legend Scott Hamilton on Finding Inspiration in Hardship

Episode Transcript

Dr. Nath:
Welcome back to the Brain & Life podcast from the American Academy of Neurology. Hello, Daniel.

Dr. Correa:
Saludo, it's great to see you again.

Dr. Nath:
Okay. '90s kid question, did you grow up watching the Olympics like I did?

Dr. Correa:
Totally, winter and summer. Oh, I enjoyed it.

Dr. Nath:
Okay. So then you probably watched him figure skating. And do you remember Scott Hamilton?

Dr. Correa:
I definitely do. I remember watching him not only skate, but then later on in the years helping me understand all the details and all the funny terms about skating because he was a commentator.

Dr. Nath:
Yeah. So he had a tumor, a pituitary adenoma, is kind of the long term for our listeners. And it's not a cancer, but it is a growth in this pituitary gland. It's a part of your brain that makes all these hormones. So even though it's not cancer, it still has to be dealt with because it affects hormone function. And he talks all about how that came to be and all the treatments he had to undergo.

Dr. Correa:
It brings up just that challenging understanding of what's tumor? What's cancer? I mean, it's just, we struggle with that. Even sometimes understanding it ourselves as doctors, but also the community that we take care of really have to have a better understanding of these things when these terms come up.

Dr. Nath:
Absolutely. And so, to talk more about brain tumors, after talking to Scott, I get to catch up with a good friend of mine, Chirag Patel, who's a neuro-oncologist. And we go through all about brain tumors and what's cancer and what's a benign mass that still has to be dealt with in the brain.

Dr. Correa:
Well, I'm looking forward to the episode.

Dr. Nath:
You all, today, we are joined by figure skating legend, an icon of my childhood in the '80s and '90s, Scott Hamilton. Many of us grew up watching Scott Hamilton on TV, when he won the Olympic Gold Medal and World Championships and then, was a very likable skating commentator on CBS for many years. So, we could easily just spend the next hour talking about figure skating and I guess, how to do a back flip without crushing your head. But Scott, has an even more remarkable story to tell, which is how he's remained so resilient following surviving testicular cancer, and then a brain tumor, a pituitary adenoma, which needed to be treated with radiation to save his life. And then, living without the function of his pituitary gland. Despite all of this, he has gone on to have two children and be a major force in charities for brain tumors, including starting his own Scott Hamilton CARES Initiative, Cancer Alliance for Research, Education and Survivorship. Welcome to the podcast, Scott Hamilton.

Scott Hamilton:
Thanks. This is going to be fun. Hey, CARES is now a dedicated foundation.

Dr. Nath:
Ooh, tell us.

Scott Hamilton:
The first 15 years of CARES, we were an initiative at the Cleveland Clinic, where I just wanted to take everything I learned from my cancer experience and just fill those gaping holes. The internet was relatively just getting populated, so I looked up testicular cancer and I got medical journal papers with 12 syllable words, sometimes like 6 to a sentence. And it was like, "Okay, this isn't fair." I asked a lot of questions and I kind of, as I experienced something, whether I was either flying blind or I was going through something that I just didn't understand, I had to pay attention to that. So two of the first things we did as an initiative at the Cleveland Clinic was to fill in those gaps. So one of them was, I didn't know how to do chemotherapy, I didn't even know what it was. So for five years, I was the organ grinder's monkey with my little hat going around collecting money to build Chemocare.com.
So a lot of oncology nurses and oncologists use Chemocare to sort allow patients to better understand the chemotherapy experience, the drugs, how they work, how to manage the side effects in 8th grade English and Spanish, and with Google Translate any language in the world. So now, we've kind of leveled the playing field. Now you can take these medications and understand what they're designed to do, and then what the side effects are and how to get ahead of or manage those side effects. And so, you can take charge of your chemotherapy experience where you couldn't before. The other thing I did initially at the Cleveland Clinic, and all those things are still run there, is we started a program called the 4th Angel Mentoring Program, where the first angel is your oncologist and second angel is your oncology nurse. You can flip those if you want. Those are your first two angels, right? Your third angel is your friends and family. And what was missing was the 4th angel. And the 4th angel is somebody who's been there, done that.

Dr. Nath:
Oh wow.

Scott Hamilton:
Has experienced everything you're experiencing and they're on the other side. And so, they can work as of a mentor, sort of a life coach. It's not medical advice, it's sort of like a psychosocial support system. And it's a relationship where it's like, how did you manage this? And it's also sort of a role modeling because the mentor is on the other side now, where you want to be and they can really work as a source of great inspiration and hope that you are where I want to be. I want to be through this and I want to get my life back. And how is that done? So the cancer community as a community, it's connected. And as patient survivors, we really truly just want to find better, novel, cleaner, healthier ways of treating the cancer and sparing the patient harm.
The alliance part of it as a dedicated foundation became a real focus as we went into and we put our stake in the ground saying, "We are only funding immunotherapy research, targeted therapy research. We only want to treat the cancer. We don't want to do anything that will affect the patient's long term life."

Dr. Nath:
Oh, wow. So I kind of want to know for our listeners, many who might be dealing with brain tumors. I kind of want to get a sense of what happened in the beginning since pituitary adenomas can have some very bizarre ways of presenting. I'm curious, what was the first thing that happened when you noticed there was something happening?

Scott Hamilton:
Well, there's a lot of those red herrings. It sort of distracts you into thinking that something happened against normal, right? So I was in my 40s and my eyesight was changing, because in your 40s your eyesight changes. I figured, well, I suffered a lot of trauma with surgeries and chemo and everything, I guess, that's supposed to happen. And then because I had my first child, I decided after 20 years of touring that I'd had enough. And that I just really wanted, I'd earned the right to be there for his first steps, his first words, and to be as present as a father as his mother was going to be. And so, I decided to step away, and in that, my physicality changed, my fitness level changed. And so, all of these things were explainable, even though I had a brain tumor that was growing rapidly in my optic chiasm, right?
So all of a sudden now, I was really feeling low and I was feeling almost depressed. It was hard to get out of bed. So I went in and they did blood work and thy said, "You have no testosterone in your bloodstream, like none." And I go, "That's really bizarre." And they go, "Well, we could treat you topically. We'll would just give you some gel and you'll get your levels up and you'll be good to go in a matter of weeks," I was like, "Okay, I can do that." But I still wasn't satisfied.
So every year I do a big benefit at the Cleveland Clinic to raise money for cancer research and our program. And I got there and I made an appointment with my urologist just to kind of like, I need to figure out how I can get back to at least having a general sense of energy and I want to be me again, right? Because I really felt like I diminished over the last few months to nothing. And so, he's laying away a lot of my symptoms. And then when I told him my peripheral vision was gone, he said, "Oh, let's get you in for a head scan."

Dr. Nath:
There we go. Okay.

Scott Hamilton:
I went in for a head scan and on the way out, the attending doctor in the imaging center said, "There's something in there." And I'd say, "You'd be the first one to ever say that."

Dr. Nath:
Oh, boy.

Scott Hamilton:
So everything we do, I just try to handle it with humor. So I get back and Dr. Klein said, "You have a brain tumor. It's kind of complicated one, and we don't know what it is or how to treat it yet, but we're going to sit down and talk about this. But in the meantime, you just go back to the hotel, I think your family's arriving about now-

Dr. Nath:
Oh, goodness.

Scott Hamilton:
... and we'll just come up with some sort of strategy." So as I got back to the hotel, I was pulling up in a cab and my wife and son and her parents were coming out, unloading the car, and my 14 month old, brand new son. She goes, "What's going on?" I go, "I'll tell you upstairs." And so, we get upstairs and she goes, "What's happening?" And I go, "I have a brain tumor." And without one beat of hesitation, she just put her head down, took my hands, and she started to pray. And it was powerful. It was like, we're going to own this. We're going to just go to the one place where it surpasses all understanding to give us the strength to face this chapter in our lives. And so, she just prayed and it really just ignited something in me that was way different than anything I'd ever experienced before.
I call it the most powerful moment I ever lived through. And so, for the next week, they were trying to figure out what this was. And I had every test, every scan, everything you can imagine, every blood test, everything. And it finally got to the point where they said, "We have to do a biopsy." And so, they dug a little hole right there in my head. They went down into my optic chiasm. They went in and they did the surgery. And I woke up and it was 10:20 in the morning. I knew who I was, where I was, why I was there. And I just sort of leaned over and I went, test, "Oh, I can still speak. Oh, this is good, I guess, the surgery went well."
So the doctor came in smiling, my wife came in smiling, and they handed me a piece of paper, or they handed my wife a piece of paper, which is information on the kind of tumor it was. And she said, "Oh, listen to this," because I'll fill it in just a second. She said, "craniopharyngiomas are usually detected early in a child's life due to a lack of growth and development." I was in hospitals for four years, from age 4 to 8...

Dr. Nath:
That's right.

Scott Hamilton:
... trying to figure out why I wasn't growing, why I wasn't developing-

Dr. Nath:
I couldn't believe this. I thought you were...

Scott Hamilton:
... why I was starving.

Dr. Nath:
I thought you would've been a hotshot athlete in kindergarten. And that is not the story at all. I couldn't believe it.

Scott Hamilton:
No, I was sick. I was in hospitals most of those four years. I was off flour, dairy, sugar, off everything you can imagine, just to try to figure out what was wrong. So I knew I was different, but finding out all those years later that this source of my problem, I mean, 99% was because I was born with this brain tumor.

Dr. Nath:
For people listening who would like to get involved with your foundation, what's the best way to find you guys online or to find out information about the November 20th event if, they want to go?

Scott Hamilton:
Yeah, it's scottcares.org, join us there. It will be at Bridgestone Arena. So it's the Sunday before Thanksgiving every year. And we know that we're going to have phenomenal artists this year. We're just sort of putting out invites now to get our war chest, because it's really hard to get artists to commit really early because they've been out of work for the last two years because of COVID. And so, we just really want to put together a memorable evening that people know that they made a phenomenal impact in the world of cancer, especially to help solve unsolvable problems to up to now, unsolvable problems. We really feel strongly that we can make a gigantic impact in the cancer community. Just really funding the right research and working with other cancer foundations in order to all ships rise with the tide. And just to create a groundswell of support and just to make this thing happen better and get rid of chemo, once and for all, just get rid of chemo.

Dr. Nath:
Oh, boy, that'll be the day.

Scott Hamilton:
I just really want to do the right thing and honor my mom who lost her battle to cancer 45 years ago, and honor my survivorship of the last 25 years of everything I've learned and understood.

Dr. Nath:
Well, thank you so much for joining us on the podcast today. And hopefully, some of us will see you in Nashville on November 20th.

Scott Hamilton:
No, come, we keep the ticket prices down because we're very inclusive. The dinner that happens after the show, that's where our bread gets buttered, literally. That's where-

Dr. Nath:
Amazing.

Scott Hamilton:
... we really want to. And we usually average around 900 people at the dinner afterwards. So it's a big deal. One in two men, one in three women will be diagnosed with cancer in this country.

Dr. Nath:
Can't get enough of the Brain & Life podcast? Keep the conversation going on social media when you follow @BrainandLifeMag, or visit brainandlife.org. As your hosts, we would also like to hear from you on Twitter @NeuroDrCorrea and @AudreyNathMDPhD. To learn more about brain tumors, I had the pleasure of catching up with a good friend of mine, Chirag Patel, MD, PhD, who is a neuro-oncologist at MD Anderson Cancer Center here in Houston, Texas. He was recently recruited from Stanford. He is now an assistant professor and a McNair Scholar studying novel methods for treating cancers. Welcome to the podcast, Chirag Patel.

Dr. Patel:
Thank you so much, Audrey. It's great to be with you.

Dr. Nath:
Tell me, just in general, when we talk about brain tumors, when we think of the brain, the structure in our head, there's the neurons that transmit information and there's also supporting cells around the neurons that keep the neurons happy. We call those glial cells basically. So when somebody has a brain cancer, what is actually cancerous? Is it the neurons that are growing out of control or the glial cells?

Dr. Patel:
It's a really great question, Audrey, because when we talk about brain tumors or brain cancers, there are dozens scores of different types that are classified in the World Health Organization classification of brain tumors. And so, sometimes the word cancer is used, sometimes the word tumor is used. But suffice it to say it's essentially a growth that should not be there because we know that our neurons, for example, they don't really rapidly divide once they become mature. And so, you could have tumors that develop from, as you say, the supporting cells, which really outnumbered the number of neurons in the brain. And so, that's kind of the underrecognized population where we have astrocytes and oligodendrocytes, etc.

Dr. Nath:
That's kind of interesting.

Dr. Patel:
Yeah, absolutely.

Dr. Nath:
There's more supporting cells than neuron cells in the brain. That is interesting to think about.

Dr. Patel:
Absolutely. And so, a lot of primary brain tumors, they're called different types of tumors based on their origin. Some are called gliomas, which arise from these supporting cells. Some are called meningiomas, which arise from the covering of the brain, the meninges. You can also have some kinds of rarer types of tumors like lymphomas that can begin in the brain as well. But you can also have benign processes like pituitary adenomas for example, meningiomas are largely benign as well. Of course, with any kind of a tumor in the brain, it's characterized by its growth pattern and its growth rate. And so, that's why in many cases it's important to get a piece of a tissue for the pathologist to be able to look under the microscope to make a tissue diagnosis, to really understand what we're dealing with so we can come up with the appropriate therapies to treat it.

Dr. Nath:
So what you're saying is, we do imaging when we think there's a brain tumor and we can look at it on MRI with different types of MRI technology and what we call sequences to see what's in the tumor. But sometimes to really know what's going on, somebody has to go in and do a brain surgery and take a biopsy and give it to the pathologist to really figure out what's going on?

Dr. Patel:
Absolutely. And like you said, MRI is the best method to look at the brain. Obviously, a CT scan is a lot quicker, but it doesn't really give us the exquisite contrast between what we call the gray matter and the white matter and other structures in the brain. And we're not at the point yet, where an MRI scan can tell us everything we'd ever want to know, right, about a growth in the brain. So we really need that piece of tissue. A lot of people sometimes say in medicine, there's a saying called, 'the tissue is the issue' where we need a piece of that to make a diagnosis really. And that's what the basis of therapy is. And as you can imagine, you don't want to give chemotherapy or radiation therapy. You really want to know exactly what you're treating.
In very rare instances, if it's very difficult to access the tissue because it may be in a very deep region of the brain, then we'll have to rely on other types of tests and patient characteristics and history to maybe guide us. But for the most part, we actually try to obtain tissue whenever possible.

Dr. Nath:
And this is why that neurologists end up collaborating very closely with both neurosurgeons and pathologists in this process. And it's a really multidisciplinary process. I got to talk to Scott Hamilton, '90s hero, figure skating legend, and he talked to us about his pituitary adenoma and that it was tough to treat and that he needed radiation. So very briefly, in broad terms for our listeners, what is the pituitary gland? Where is it? What does it do? And why are we worried about adenomas of the pituitary gland?

Dr. Patel:
We'll, it's a great question. So if you think about the pituitary gland, where is it located? So if you look at the bridge of your nose and you go right back from the bridge of your nose-

Dr. Nath:
I'm tapping it.

Dr. Patel:
... to right in front of your ear, it's kind of like dead center at the base of your skull. And it kind of sits like... Some people describe as a cherry with its stock dangling down in this kind of area called the sella turcica. Some people describe it as a size of a grape or a kidney beam, but it's not that large, but it is a gland, as you mentioned. It's not necessarily that neural tissue or the supportive tissue, the supportive types of cells. It's actually a gland and it's considered the master gland in the body because it really contains, and it secretes master hormones that regulate other glands that maybe people are more commonly familiar with, like the thyroid gland or the adrenal glands, or even our sex organs like our testes or ovaries for example.
The pituitary gland secretes a lot of these master hormones that then regulate other important bodily functions. And so, the reason it's important is because it does regulate all of these important functions for life. And when we talk about an adenoma, that's a kind of growth of the pituitary. And the adenoma could be defined based on its size. So we can talk about a microadenoma or a macroadenoma. Usually a macroadenoma is when it gets larger than a centimeter in size. And oftentimes when the pituitary gets too large, if you get a macroadenoma, what happens is the pituitary is sitting right underneath our optic nerves, which are responsible for our ability to see. And if the pituitary gets too large, it can actually squeeze or push on the optic nerve pathway and cause a kind of loss of peripheral vision on our extreme left or extreme right hand side.
It could also potentially lead to headaches or dizziness or some other types of symptoms that may trigger the physician to do an MRI scan, let's say, to take a look at what's going on. But at the same time, there could also be adenomas that are not so large, but they actually have functional pathologies, which means that they start secreting abnormally high levels of these types of master hormones. So you could imagine in the case of adenoma that releases too much of a certain kind of hormone called ACTH, which controls our adrenal glands that sit on top of our kidneys, that stimulate the production of lots of cortisol, which is our kind of fight or flight stress hormone. And that can result in a lot of side effects in patients like, a really fast heart rate, sweating and a lot of other things.
We can also have in other cases, depending on again, which hormone is being affected, there's a condition called acromegaly, which is due to the excessive elusive growth hormone. And there are a lot of others that we can talk about as well. But the bottom line is that because this is the master gland of the body, it can have a lot of downstream effects, which sometimes are worked up by even another set of physicians that I didn't mention earlier on, which are endocrinologists. And they're critical in regards to doing the appropriate testing to understand whether the dysfunction is going on at the end organ in the thyroid gland or the adrenal gland, or is it due to the pituitary itself from the brain.

Dr. Nath:
Absolutely. And so, the endocrinologist colleagues actually some many times end up diagnosing this, but just to kind of summarize that, that is a lot of different symptoms that a pituitary adenoma can cause. So it can cause headaches, it can cause vision changes, as well as a whole bunch of hormone changes, including if it were to secrete prolactin, it could cause people to lactate, including men to lactate. And this is often very alarming, when brings people to the doctor. So-

Dr. Patel:
Absolutely.

Dr. Nath:
... from what I understand that this growth of this pituitary tissue, this adenoma, it's not necessarily cancer, and that it's not necessarily something that's going to spread to other parts of the body, but that it's dangerous because it's affecting function and can become locally bigger and bigger and squish other organs in the brain.

Dr. Patel:
Absolutely. And the other thing that's important to recognize is that the pituitary gland itself is surrounded by a lot of critical structures. So it kind of sits in this kind of bony kind of crevice called the sella turcica. And so you're right, I mean, as it grows larger, it has nowhere else to go but up or kind of out. And so, if it goes up and kind of compress the optic nerve pathway, if it grows outwards, if it potentially cause harm to the surrounding vessels around it, both the cavern of sinus or the vertebral artery, the basal artery below it, and then also we have the carotid arteries as well, which are very sensitive structures.
And so, you can imagine that we don't want this to grow unimpaired, because it can start then causing not only these hormonal changes and effects on the body, but also the potential for compression of certain blood vessels, etc. And you can imagine then when neurosurgeons do have surgery to try to take out these adenomas, they also then likewise, have to be very careful about these critical structures and avoiding them in order to get the tumor out safely.

Dr. Nath:
So you're saying it's in a really inconvenient place, that's what you're saying?

Dr. Patel:
That's right. It's inconvenient, but I will say that there's been a lot of modernization, as with everything in surgery. Now, they can do what they call an endonasal approach where they actually put the devices through the nostrils and they can kind of drill a hole towards the back of the nose and get a nice direct vision right onto the pituitary. So there's been a lot of advancements from earlier surgery, so it's kind of considered minimally invasive, if you will.

Dr. Nath:
So Scott Hamilton, when he was speaking with us, he also shared with us that before his pituitary adenoma, he had testicular cancer and he had gone through chemotherapy as part of his treatment for testicular cancer previously, then he had his pituitary and had radiation therapy. And that with his foundation, he is trying to raise money and awareness to promote research for new potential ways to treat cancer, now and in the future. And I kind of wanted to get your take on some of this. What is on the horizon for cancer treatment, including brain tumor treatment?

Dr. Patel:
Yeah, it's a really great question. I think we have this kind of foundation of the three core forms of therapy that we've talked about in the past. The earliest one, even thinking of historically, is surgery. And then, there was a development of radiation therapy and chemotherapy, which is a very broad term, which essentially means certain types of drugs that cause toxicity to rapidly dividing cells. But now, as you mentioned, there's a lot of advancements that are going on. One of the big types of therapies that was a breakthrough was immunotherapy. Where we tried to use the immune system to find and attack cancers in the body and shown a lot of great success in patients with melanoma, lung cancer, and lots of other types of cancers. When you talk about the brain, one of the challenges that we have is this thing called the blood brain barrier, where certain drugs, although if we take them through the IV or by an oral pill, they'll have great access to a lot of the organs in the body.
But, our brains have this protective blood brain barrier that essentially prevents certain toxins from getting in. And so, one of the challenges for patients that have brain tumors, particularly what we call gliomas, and within that group of tumors, high grade gliomas, is which chemotherapies can we use? Well, we'd like to use the ones that are very potent against these types of tumors, but they additionally need to be able to cross that blood brain barrier to get to the tumor. And so, we are limited in that capacity when it comes to some of these high grade gliomas. But there have been some other advancements in the brain tumor field that are now being tested, other organs outside of the brain. One of them is this form of electrical fields therapy that's quite novel. It's a form of alternating electric fields. Now...

Dr. Nath:
Wait, what is this?

Dr. Patel:
Yeah, so-

Dr. Nath:
Using electric fields?

Dr. Patel:
Right. So basically, patients would wear these adhesive electrodes over their scalp, which overrides the brain. And so, that's another form of local therapy. These electrodes would do say a local electric field, also referred to as an alternating electric field or tumor treating field, there's a lot of different names for it. But the whole idea is that these wave forms are generated through the brain and they're thought to interrupt the cancer cells proliferation process, that is rapid cell division. In combination with chemotherapy, these electric fields have been shown to prolong survival in patients with the advanced form of brain cancer called glioblastoma.

Dr. Nath:
So basically looking towards the future, it may be a combination then of therapies and modalities that already exist and new therapies that are being developed in a lab right now.

Dr. Patel:
Absolutely. And I think that's the exciting part of the research is that we find a lot of promising therapies and cell culture models and animal models, but the true test is in the patients that have these types of brain tumors, for example. And as you say, we need to somehow find the best combination to synergize, that is one plus one should not equal two, but one plus one should equal three. And get the right combination, the right timing of these strategies, to have the maximum impact to help patients with brain tumors and other types of cancers as well.

Dr. Nath:
So you see brain tumor patients in your clinic, and for any of our listeners out there who may be dealing with a new diagnosis of a brain tumor, is there something that you would like to tell patients and their families that are starting the process of brain tumor therapy? Is there something you'd want them to know?

Dr. Patel:
That's a great question. I think it's really important one as well, because anyone that's given a diagnosis of a tumor or cancer, it's a very stunning kind of time in their lives because sometimes, it's just so sudden and then you feel that you've lost control of your life. You may not know what's going on or understand all the treatments that are going to be starting. And a lot of times with everyone having access to the internet or their cell phones, they'll be searching online for their diagnosis and trying to see what that's about. One thing I do counsel patients on is to avoid certain types of websites to get information. And the ones I actually recommend that they use are the ones that end in .gov or .gov or .org, which are .org. These are going to be where they're going to get the more kind of, let's say, consistent knowledge base that we have. It's evidence based.
I'd just be concerned that if they go to websites that are like .com websites or social media, you're going to find the extremes where people will say, "This is a death sentence" or the opposite end that says this is, "We have a cure for this." And so, I think for patients during this very stressful and very scary time in their lives, it's important to look at resources that are going to give you the kind of credible information. And then obviously, to work closely with their clinicians, whether it's going to be their medical neuro-oncologist or their neurosurgeon or their radiation oncologist or all of them as a team to don't hesitate to ask questions to understand what's going on. Because at the end of the day, we want to ensure that all of our patients are well informed of what's going on, so that they can make the best decisions for themselves of how they'd like to proceed with therapy.

Dr. Nath:
Well, Chirag, thank you so much for joining us and taking time out for your busy schedule of managing a lab and seeing these patients, and I think fighting the good fight. Thank you.

Dr. Patel:
Well, thanks so much for the opportunity. It's great to catch up with you. I really appreciate it.

Dr. Correa:
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Figure Skating Legend Scott Hamilton on Finding Inspiration in Hardship

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