Advocacy and Athleticism with the Pittsburgh Steeler’s Cam Heyward

Episode Transcript

Dr. Correa:
From the American Academy of Neurology. I'm Dr. Danio Correa,

Dr. Peters:
And I am Dr. Katy Peters, and this is the Brain & Life podcast.

Dr. Correa:
Welcome back to the Brain & Life podcast. We've had a lot of sports this summer with the Olympics and Paralympics. It's been a lot of fun to have some of that discussion here on the Brain & Life podcast with you, our guests and our medical experts. And we're going to continue some of that sports season now with the NFL. So Katy, do you watch much football?

Dr. Peters:
H-O-L-D, hold that line. Absolutely. I was a cheerleader in college, even though I just cheered for basketball, I think. But yeah, I watch the NFL. It's a lot of fun. I hope they're safe out there because there is the risk of concussion, but always a big fan of watching the football games and watching them get touchdowns and then also watching the spectacle, particularly the Super Bowl.

Dr. Correa:
Yeah, I mean, I figured you're in the South right there in football country, so I imagine it's a big discussion.

Dr. Peters:
Oh yeah.

Dr. Correa:
I grew up, I played a little bit of football. I was much more of a football, soccer player, but it's an amazingly interesting sport. It's particularly an area that's often of a discussion for us in neurology because of concussion. And our guest today has been playing with the Pittsburgh Steelers. He played at Ohio State and then went to the Pittsburgh Steelers. Cam Heyward is an American football defensive tackle with the National Football League, and he joins us because of his own family and personal experiences because his father died of brain cancer at age 39. His father was also a longtime professional player, also with Steelers. And Cam started a nonprofit for public services and for advocacy to bring more attention to various different situations and conditions. And himself, both he and his father experience concussions, as many football players do. I hope all of you enjoy this interview with Cam Heyward.
And then actually we're going to be coming back to a discussion with Katy and I, because Katy as a neuro-oncologist, we're going to actually speak with her as our medical expert about Cam Heyward's father's condition and continue our discussion. Welcome back to the Brain & Life podcast, and I'm glad you guys are all getting a chance to peel yourself away from some of the sports going on. We have the Olympics this summer. We have football on TV, we have soccer. There's a lot of things going on, and this week's guest, we are featuring an award-winning football player, Cam Philip Heyward, who plays right now with the Pittsburgh Steelers and the NFL. Thank you so much, Cam, for joining us today.

Cam Heyward:
Yeah, thank you for having me Dr. Correa, it's an honor to be on and I'm excited to talk to you.

Dr. Correa:
So I know because I got to hear you speak about your own personal story and your family's story, but I think not everybody out there in the community knows that your family was significantly impacted by brain cancer.

Cam Heyward:
Mm-hmm. Yeah, my dad had a brain tumor discovered in '99, which forced him to quit playing in the NFL. He had played for 11 years, and when they found the first tumor, or the original tumor, he had to quit playing. He was then left blind in his right eye, but was able to function any other way. Then years later, he had a stroke and then we found out the tumor had came back. This time, with the stroke, it left him paralyzed on his right side and unable to fully talk. But yeah, brain cancer is very prevalent and we are trying to find answers and trying to find ways to better, not just our family, but others.

Dr. Correa:
That's important. I'm glad that you and your organization has been working with others to help move that forward. I think we all want to learn more and hear more both about your father, who he is, his impact on your life. But I wanted to start with you. So if you could go step outside, defining yourself necessarily as an NFL football player, who is Cam Heyward?

Cam Heyward:
Who is Cam Heyward? I'd like to think I am a big kid at heart. I love the game I play as a football player, but I even love more being a father and a husband and I like to support my community. It's been really cool to be in one city for my entire career because I've been able to establish roots. My dad went to college here, my mom is from here, so coming back here was a match made in heaven, and I love to have a good time and I love to give back.

Dr. Correa:
And I think we could all imagine with a father playing in the NFL how he may have inspired you and impacted your reason for playing football and your path to the NFL and playing professionally. But I don't know, I'm wondering from your perspective, what are other ways that you really felt like your father impacted who you are and why you do what you do and the way you work and help support organizations through your work in the NFL?

Cam Heyward:
Yeah, I think, one, my dad had this larger than life personality and being back in Pittsburgh, I get to hear all the stories good and bad of how he went about living in Pittsburgh. But also with the good, he would constantly give back and it would go unnoticed to just the common eye, but he would go out of his way to help out a lot of people. And that's kind of what instilled me to want to give back in Pittsburgh, both my mom and my dad were always keen on giving back, whether it was in Pittsburgh or Atlanta, we found different ways to give back.
And so through my foundation, the Heyward house, we started in 2015, we've worked with both the Southeastern Brain Tumor Association in creating not only awareness research and trying to create scholarships for kids that might need more help along the way. And then we've also, we've done a really cool thing where it's called Craig's Closet where we collect suits for young men for job interviews, college interviews, prom, and these kids, they light up. We get to spend some time with the kids and we get to just get to know them on a personal level and instill that confidence they need as they go through their lives and enter adulthood or go off to college. We're all about just serving our community and serving our youth.

Dr. Correa:
And you were telling us earlier that your father was diagnosed while he was still playing in the NFL. And at that time, do you know, or do you recall, was he having any symptoms that drew his attention to needing to see doctors? Was there something that led to that initial diagnosis or was it randomly found?

Cam Heyward:
As I recall, he was having blurred vision. We were in Indianapolis at the time and then going through scans and then eventually finding it. It was pretty abrupt that he had to retire right away. But I was pretty fortunate that I got years after to spend a long time with him. So I know that doesn't always work out the same way, but I was very privileged to have that time with him.

Dr. Correa:
And then after he had the blurred vision, he got his diagnosis, he made the decision to take a step back from play, get more time with you guys. What was his journey with that initial cancer diagnosis? Did he require surgery? Did he end up needing chemotherapy? And what was your experience seeing him go through that?

Cam Heyward:
So I know he required surgery and I think they did some different forms so they were able to remove it, most of it. And they just said, he wouldn't be able to see of his right eye. But I think the thing I loved was that didn't stop him from being a big part in our lives. I like to think he was one of the best one-eyed drivers I've ever seen. He lived his life and he was still present. And even though his circumstances had changed a little bit, he was still working through it.

Dr. Correa:
Yeah, I think that's something that not a lot of people know that if you lose vision to one eye or lose that eye, you can be trained by the therapist to use with one eye and do one eye driving. It just requires a little bit more head turning.

Cam Heyward:
Yes.

Dr. Correa:
Yes. And then over the years, other than the surgery required to take it out and prevent further damage from its growth, you guys ended up finding out that it came back and that came initially with a stroke. What happened at that time that all of a sudden made you realize that something else was going on?

Cam Heyward:
Well, he was supposed to be taking me to school, we had to drive an hour to school every day, but he didn't show up. And my mom went over to his house at the time, they were divorced at the time, but she found him. He had suffered a stroke, rushed him to the hospital, where they found out the tumor had came back this time a lot more aggressive in paralyzing the right side of his body and also altering his speech. So with those two things, he was now in a wheelchair and required a lot more care this time. We were able to communicate, we all rallied around him. He was going through physical therapists to walk again. Unfortunately, he didn't get to live out that dream because he ended up having pneumonia where they had to stick in a trach and it took a turn for the worst and he ended up passing away.

Dr. Correa:
I'm sorry. I mean, but it really does seem like at every step, he just kept pushing forward and would adapt in every way he could to be there and with your family.

Cam Heyward:
Yeah, I think, not only my family, but a lot of athletes or people in high pressure situations, they learn how to adapt and deal with the cards they're given. And I can definitely say my dad didn't just feel sorry for himself and stop believing and continue to keep working.

Dr. Correa:
Do you think for your dad that he felt any stigma or a challenge with having limited vision or with the diagnosis that he had had of brain tumor and the brain cancer? Or did he try to be open and advocate for other people and people understanding about it?

Cam Heyward:
I think he was definitely open and an advocate. He wasn't a person that had to worry about opening up. He was a very loud mouth and he was the life of the party before and after the surgery. And so he still attended every one of our games. And when I say he was present, I just think I look around and I say, "Man, my dad made an impact on everybody he met and he didn't let a tumor or being in a wheelchair eventually stop him from doing that."

Dr. Correa:
And there's something about your father's impact on your life or his own journey with his medical condition that influences how you think about your own health?

Cam Heyward:
Yeah, I definitely think I play a sport where there are a lot of concussions and I always take my concussions very seriously. But I also look at all the technology that's changed since then, whether it's the helmets or whether it's the thinking behind how concussions are treated. I also look at just overall brain health. You don't have to be an athlete to have a brain tumor. So it's more of how I can support myself, but how I can also help others and help us all overcome it. I think we're all continuing to learn about the brain. I don't think anyone has a complete sense of what all the brain does, but I think as science continues to keep revolutionizing and changing, they need all the tools they can get, and I want to continue to keep supporting that.

Dr. Correa:
Let's build on that on some of the things that you do for your own health. You mentioned you play football, it's a sport where you're at risk for head injuries and maybe they're mild traumatic brain injuries and concussions, and you hope to avoid of course any of the more significant ones. What are some of the things that you think you and your colleagues and fellow players do nowadays that's different from how it was for your father when they would have concussions?

Cam Heyward:
Well, it's funny. You look at these helmets, they are completely different from where they once were. I know back in the day you would have one helmet and if you were with one team, you have maybe two helmets in your career. Nowadays, it's almost every other year you're getting a new helmet just because of the wear and tear of the helmet. There's a mold of your head inside the helmet to help protect you. And then if you look from how the NFL approaches it, there's an independent neurologist that you have to be cleared with to even go back in the game following know blood trauma. I think a lot of guys are a lot more upfront about concussions, whether they're mild or very serious. And then I think the process in the way we deal with concussions have changed as well.
Pittsburgh is very cutting edge in the way they approach concussions now. Before it used to be in a dark room and keep all the lights away from you, keep the sounds to a minimum. That's completely changed. And just this year I had a concussion and the things we went through are you look at the eyes and do different things to put yourself through an exertion test and then they measure the eyes again. But also whether it's ramping up your body more into getting back into activity a lot quicker these days. And it's really cool to see. My son, he had a concussion from sports and I was like, "It's a little bit different than how we grew up." When we grew up, nobody knew anything about concussions, nobody knew how to really test anything. And now there's a lot more safety and precautions and a lot more literature to support doing a lot of different things.

Dr. Correa:
Yeah, yeah, I mean when I was growing up I had a concussion in wrestling and it was just, yeah, go sleep for day or two and then get right back to it and push through any symptoms that came up. And now the efforts are much more towards what you were describing as this graduated return to activities and testing and finding the threshold for when symptoms start to come out and then finding the things, you do need the rest and other things that you should continue doing those exercises and as much as you can, working with the therapists, which you guys have within the NFL, it's an amazing resource, all the different therapy support that you have.

Cam Heyward:
Yeah, even learning about a vestibular concussion or understanding how you need to look at the eyes and understanding all the different things that go along with, it's very intriguing when you get to see the process happen, but I definitely think Pittsburgh's got a lot of great therapists that are helping a lot of great people.

Dr. Correa:
And as more of the science is coming out about the different ways we can all think about our own brain health, rest and recovery, what are some of the things that you're trying to do for yourself and think about with your family and your two kids about really making sure to promote everyone's brains that are developing and as healthy as possible?

Cam Heyward:
Well, obviously rest is key to anything. If we could all just hibernate and sleep, it would probably be the best thing, but we do have to get up and work and working to pump oxygen into the body and into the brain can also improve. Something as simple as just fish oil has gone a long way. Those fatty acids can help out a lot. But I think just for me, it's been just about learning and understanding that I don't have to do it alone. There are a lot of resources out there that can not only benefit me but benefit others.

Dr. Correa:
And I'm wondering now as you move forward and think about for yourself in terms of getting the care and medical evaluations to make sure you don't encounter chronic medical problems or don't miss something like that had occurred for your father even, a risk of things over time, what do you do regularly? I mean, a lot of times younger people don't end up going to the doctors too often. What's your medical attention process?

Cam Heyward:
Well, every year we have our physicals, and I definitely think we are at an advantage in that where you're measuring everything basic to your heart, your brain, just measuring stress levels. They're taking your blood every year to understand allergy testing. I think you can't be shy or timid about checking that stuff. If you have the resources and you can take advantage of it, I would highly encourage you to do that because one, we're all trying to... It should be healthcare and not sick care. Don't wait till you get sick to go see somebody, find ways to not only improve your life now, but improve your life in 20 years. And whether it's eating the right foods, I think all of it plays a hand in having a good healthy lifestyle.

Dr. Correa:
Another part of healthcare that sometimes get left out, whether it's related to concussions or significant changes in your life, like the passing of your father is the mental health side.

Cam Heyward:
Yes.

Dr. Correa:
How do you think about taking care of and supporting your own mental health?

Cam Heyward:
Well, I like to think I have a pretty good support system, whether it's my wife, my mom, who travels between Atlanta and Pittsburgh, coaches, teammates, friends. It is an environment that I've created that I have a lot of people I can rely on. This world's too big to do it alone. And I think the more you can rely on somebody, as they rely on you too, I think it goes a long way. I think speaking to someone can be helpful. I'm not going to say every therapist is great, but if you find one that works great for you, keep it going and take advantage of that. But I've definitely used those services before and I see the benefits in that. And I see talking through problems and having open forms of communication not only with your loved ones, but people who have an outside view and your friends that are able to challenge you when you need it.

Dr. Correa:
And one of the other things that's most important about all of our brain health is getting good, healthy, and adequate nutrition. One thing I saw and I wanted to highlight in the Cam Heyward Foundation is your effort to work and address childhood hunger. Can you tell us a little bit more about what the foundation has been doing and why that's important to you?

Cam Heyward:
Yeah. There are a lot of kids that, especially in Pittsburgh, that even in the summer don't have meals provided for them. And we find creative ways to either provide meals in the summer, because one in six kids is looking for a meal in the summer or we look to help kids on the weekend. These are when most kids are most vulnerable and deal with the food insecurities.
I think I've seen the different ways people give back, whether it's creating a food shelter inside a school so a kid doesn't have to worry about food insecurity or someone just providing meals on a weekend. Those go hand in hand because so many times parents have to work and they're worried about the entire week, then just the weekend or parents have to work in the summer and nope, you can't afford the proper childcare. And so it becomes of, what do we have at the house? And if there's not a lot of options, then that child could go days without eating. And luckily I was very fortunate to never be in that situation, but I understand I'm blessed and I need to make sure I help out others who can't.

Dr. Correa:
It's exciting to hear about all the different ways you're looking at making an impact off the field. And I want to hear though, as you have this... This coming season Cam, what are you looking forward to on the field with the Steelers?

Cam Heyward:
I think we got a really good team. I think we have a team that contends for a Super Bowl. I think when you look at the moves we've done this offseason bringing a guy like Russ Wilson, also another guy in Justin Fields. And then you look at the other pieces we've added, you add guys like Patrick Queen, a linebacker from the Baltimore Ravens, now he's playing for the good guys. I'm happy about that. I think we have a good mesh of players already. But then you add guys with not only great people, but great pedigree that can really elevate this team and hopefully bring home a seventh Super Bowl for the Pittsburgh Steelers.

Dr. Correa:
Well, I look forward to seeing more of your work both on and off the field. I know some of my friends and family in Baltimore may not be so happy about the idea of Pittsburgh in the offseason, but I enjoyed so much that you joined us here sharing more about your foundation's work, both also to bring more research attention and awareness to brain cancer and sharing your own perspective about brain health.

Cam Heyward:
Well, thank you for having me on. It's a pleasure to be on this podcast and I like to learn and hopefully give back, and what better way than with Brain Life?

Dr. Correa:
Can't get enough of the Brain & Life Podcast, keep the conversation going on social media when you follow @NeuroDrCorrea and @BrainandLifeMag or Visit Brainandlife.org.

Dr. Peters:
So Daniel, that was a wonderful interview with Cam Heyward from the NFL, and it was so great to learn about his advocacy work, to learn about what happened with his father in regards to the brain tumor, but then also to discuss concussion that can occur during an NFL player's life. What were some of your favorite points that you learned from him about his life and advocacy?

Dr. Correa:
I mean, I think I'd like to start with the fact is stepping outside of all the things, how much in his advocacy work and in his nonprofit he has dedicated to how much he cares about the Pittsburgh community and efforts to reducing food insecurity, addressing issues in the Pittsburgh community of other financial and social needs in the community. And he brought back several things about how he reflects and relates to the community and his own role as a father and his children, all very independent of his role as a football player or his father's condition or his history of concussion, really, first of all that he relates to his community and others as a person and a human being. I thought that was a great thing to see in someone who has many privileges as he does, but that he really is grounded in that way.

Dr. Peters:
I completely agree with you. When you have a friend or a sibling or a parent or a spouse or a child being able to now put on your advocacy hat for your loved ones and to honor their legacy, it's just so vital. I mean, we need to have that part of the chapter happen for us, for our humanity. And we have heard now from several people impacted by brain tumors, which is my line of work, the patients that I see in clinic that have developed advocacy groups or organizations. And we heard from Laura Grannemann from the Gilbert Family Foundation. Those are for patients with neurofibromatosis. We also heard from David Arons, he was the CEO of the National Brain Tumor Society. And then Janet Fanaki is a caregiver, but also an amazing podcaster of the podcast Resilient People, and she was the caregiver to her husband that passed from glioblastoma.
So this type of advocacy doesn't just exist for brain tumors. I mean, what's so important and what we highlight on the show is that there are so many different neurologic illnesses and conditions, and if you are affected by it, there is likely an advocacy group that we've highlighted on this podcast. What do you think?

Dr. Correa:
Yeah, I mean, I think it's important. And maybe we haven't had a chance to highlight them, but to look out for those organizations, not only also to be there a support and advocacy for you, but other ways that you can think about getting involved in the community and advocating for others. Also, Cam Heyward was recognized recently by the American Brain Foundation, that's the nonprofit related to the American Academy of Neurology for a Public Leadership in Neurology Award. Because of his work with the Cam Heyward Foundation, he was also named the Walter Payton 2023 Man of the Year in the NFL Honors in 2024 for that advocacy and that community work. And one of those things being the Heyward House Foundation that we were referring to before, where that foundation has helped support families suffering from the effects of brain tumors and help the education of children and those families.
In the podcast, we've highlighted efforts by the Epilepsy Foundation by an advocacy organization called I AM ALS to push for policy changes about research and access to medications in ALS and access to Medicare/Medicaid. We've interviewed and spoke to representatives from CurePSP that are helping advocate both for research and increasing awareness about the condition, progressive superior nuclear palsy and several others. But I think as we mentioned, there are many advocacy organizations out there in support of the community living with different neurologic conditions and these are just some of the examples.

Dr. Peters:
And the important point about the disease that Cam's father had, his name was Craig Heyward, he was diagnosed again at a young age of a very rare brain tumor. The tumor is called a chordoma, and it represents only less than 1% of all central nervous system tumors. And only one in one million people are affected per year, so this is extremely rare. Now where this tumor comes from... That's one of the questions that people always ask, "Where do these tumors arise?" And a chordoma rises from a vestigial structure in our brain called the notochord. It's what essentially our brain sort of develops from when we're a fetus. And it can either arise at the very low part of your spine near the sacrum or in a deep part of the brain called the clivus. And that's where his tumor developed was near the clivus. And the clivus sits right next, very, very deep in the brain, so it's really hard to get to surgically because it sits right next to pituitary gland, right next to the optic nerves that control your vision.
And so common symptoms that you can see are vision loss because it can affect that optic nerve, but then you can also have issues where you can have endocrine challenges associated with this. The tumor tends to be pretty slow growing, but it is very invasive. It's in a bad real estate area, so you really need to have a very careful surgery to get this out. So the most common treatment is to try to do the best safe surgery you can with a good neurosurgeon that can do that. Next we'd move to a directed type of radiation therapy. It's called proton beam radiation therapy. And it's critical to really follow these patients really closely because these tumors are very insidious and can come back. So Daniel, do you have any questions about Chordoma? Because I'm happy to put on my neuro-oncology expert hat while I'm podcasting with you.

Dr. Correa:
Well, I definitely want to get to some, but first I'm going to go back to a few things. Because I know that in our teaching with residents and medical students, we end up going through some explanation about some of the things that you mentioned. So you mentioned a vestigial structure, or notochord. For our listeners, can you help them understand what we mean by those terms?

Dr. Peters:
So a vestigial is sort of a structure that no longer has any function, it's what started out at the beginning stages of your life. That would be sort of the best way I would describe it. Does that sound pretty good?

Dr. Correa:
Yeah, it's kind of a leftover from previous functions.

Dr. Peters:
Absolutely. And so sometimes people think... People even talk about do they have a vestigial tail, in some patients, which can occur in some instances, but it's very, very, very rare. So yeah, that's what a vestigial structure is.

Dr. Correa:
Okay. And so you mentioned that it can happen in the deep area of the brain, the clivus, and you described that and where it is as being near the pituitary gland that controls our hormones. But you also mentioned that the chordoma can come in the lower part of the spinal cord. So as you were describing as it grows ways that it can affect our vision and other things, how does it affect someone when it's growing in that lower part of the spinal cord? What types of situations or manifestations can come from that?

Dr. Peters:
So it can, really easy, low back pain, and it's usually pretty insidious. By the time, you may have that pain, but once it really gets to developing into neurologic symptoms, you're really concerned that it's become more invasive. And so these tumors of the tailbone, you can get numbness in the groin area. You can start to develop maybe bowel or bladder problems. You can get numbness and tingling and weakness in your legs, maybe some clumsiness also. So this is really important... And again, because these are slow growing tumors and very insidious, it can happen over really, it isn't an acute manifestation, it'll happen slowly over time.

Dr. Correa:
And with tumors sometimes there's always the question or we talk about the possibility of metastasis or spread. And you described that this type of tumor grows in somewhat of an insidious way or it just sort of starts affecting or breaking things around it, but does it also spread to other areas of the brain and spinal cord?

Dr. Peters:
It would happen very, very, very rarely, but it can happen. What the more concerning situation with this is because these are so two high real estate areas that even though you think you get it all out and you sort of treat this area with this special radiation, it just can keep on coming back insidiously in those areas, and those can have a lot of challenges for patients.

Dr. Correa:
And if Cam was sharing that, like you were describing, his father had surgery and had procedures for initial treatment, then was followed for a long time later and then had a stroke. And when they were evaluating what was going on with why he had that stroke, they found out that the tumor had spread. How often in this type of tumor and some of the other brain tumors is there the possibility that these tumor ends up resulting in a stroke or a damage of blood vessels?

Dr. Peters:
So stroke is actually, unfortunately a common complication of brain tumors. First is when you have any kind of cancer, particularly of the brain, you are just more predisposed to be hypercoagulable, that means your blood is thicker, so you're more predisposed to develop a stroke. Next is, is when we do radiation and the type of radiation we give for a chordoma, which is proton beam radiation, it's actually designed to really just hit its target and try to miss all of the important structures of the brain that have normal function. But you can't get everything out of the way because where that chordoma is located is right next to some really precious blood vessels. So when you're radiating it, you're also radiating the blood vessels. And that can lead to a phenomenon called radiation-induced vasculopathy, and that can lead to strokes. So because you are on those agents and because you have the tumor itself, you essentially are put into a higher bracket of developing stroke to begin with.

Dr. Correa:
Okay. And we've talked about in the past in a few other episodes about stroke, the importance of going to the hospital very soon after a stroke that there are some procedures and some medicines that could be delivered to someone to help them in increasing blood flow back to that area. How many of those are options in someone who has had a brain tumor or a brain tumor surgery? Is it automatic that we don't use these procedures or how is it navigated for each person?

Dr. Peters:
That is really challenging, and this is when you really need great experts. And I'm working on some projects with my colleagues right now in regards to these questions because if they have an active brain tumor, not like a chordoma because it tends to be more evolving of the bony structure, but if it's in the brain itself, what you worry about is that if you use those things to bust up clots is that the brain tumor could bleed. So a lot of the situations for our brain tumor patients or even for other cancer patients, they may not be able to undergo some of those procedures. If they just have an underlying cancer and have a stroke, not necessarily in the brain, there's going to be more opportunity to use those kinds of agents with the clot busting or to take out a clot. So even if you have a brain tumor or if you have cancer, if you have new neurologic symptoms consistent with a stroke, you should go to the emergency room as soon as possible.

Dr. Correa:
And one of the other things you mentioned to me reminds me of Star Wars. So you said that one of the treatments is proton beam radiation therapy. So when you're bringing that up with one of your patients, how do you explain what that is?

Dr. Peters:
So we have two general different types of radiation that we use for patients with cancers, including patients with brain tumors. The standard one is called photon beam radiation, and it's delivered in bands, like a wave in the ocean that would cover a larger part of the brain because we know that most brain tumors have little tentacles or fingers that sort of come out from them, so you need to have sort of a wider area that you're covering with the radiation. With proton beam, it is definitely space age, it is hitting its target and the way the radiation oncologists explain it to me, and these are those specialized doctors that deliver radiation to patients with cancer, is that it hits its target and then stops going anywhere else. So they're almost able to paint the radiation on the lesion. So again, it just hits its target and stops. This is now being used for more pediatric brain tumors, which we're pretty excited about, and this is a very open area of research.

Dr. Correa:
And there are so many other ways that treatment for different brain tumors is changing. There are lots of specialists around the country for all these different types of brain tumors. I think, you know of course, better than even I do, how every single one of these brain tumors and each person has very unique situations, are there resources for people to go to find where some of the brain tumor specialty centers are and where they can go for a second opinion if they've already been evaluated?

Dr. Peters:
So I would definitely go to the National Brain Tumor Society's website. I think they're great. They're a great resource. They can actually help you get set up to specialized areas in where you live and close by, but also ones that may have treatments for your specific type of tumor. In the world of oncology now, we're using a lot of targeted therapies, and this means that the therapy is not dictated necessarily by the type of tumor you have, but more what is the underlying driver mutation that made the tumor grow to begin with. And so we do a specialized testing called next generation sequencing to know about the genetic makeup of each tumor so that we can hopefully in some cases, find what that tumor driver is, and if we can find that driver, we can even tailor and target therapy to that driver. Now, that's just a rare portion of the cases, but this is where all of oncology is going, this is where brain tumor research is going so that we can better tailor therapy for our patients.

Dr. Correa:
It's creating so much excitement and hope for so many individuals. I think that for conditions that when we were trained or in the books that we read were many times described as untreatable, very progressive and aggressive conditions and now we are seeing many people have many years of quality life with their families. It's great to see. Now, Katy, beyond the biology and the nature of these brain tumors, it's also important the advocacy for rare conditions like Chordoma. We've had several episodes about other rare conditions, and it's similar, these advocacy situations to what we see for rare neurologic conditions like Friedreich's ataxia. We've done an episode with community members and parents of children with SYNGAP and epilepsy and neurodevelopmental disorder. We've done episodes talking with people from ALS, and there is a very aggressive condition called spinal muscular atrophy, and now there are many advocacy organizations and new treatments for those.
So often, as we've mentioned before, take a look for the advocacy organizations related to what you and your family lives with. Now, rare diseases often lack a lot of that visibility, and they affect a small number of people, which really challenges both some of the research and the need for these advocacy organizations to bring that condition into greater awareness in the public and greater awareness even among healthcare professionals. Sometimes our patients and their family members may often be even more of an expert in their situation and the condition than some of the healthcare professionals who don't get to see the rare condition very often and especially above public policy makers and the general public. But that heightened awareness can help lead to better and earlier diagnosis for many people, it can help lead in advocacy for better treatment options and more research funding and so there's many of these organizations along with the American Academy of Neurology that work towards advocacy for many of these situations.

Dr. Peters:
And I think what's really important for, I guess the rare disease population is most of the research dollars are going to go towards common illnesses because they're common and they affect more people. So this is where an advocate can play really a vital role in pushing research for those rare diseases and going to pharmaceutical companies and government agencies essentially saying, "Hey, look at me. This is something that we need to study." And it could be that some of those rare diseases that we look into that can help even larger types of diseases. So a lot of times with rare diseases, it's based on a genetic mutation, and that could be part of a pathway that involves just sort of a larger disease process and understanding. So I hope that one thing that we can have for our advocates is that even though it's a rare and limited patient population that you're contributing not just to that disease, but maybe even a bigger picture.

Dr. Correa:
Yeah, there are many examples where learning from research and work and advocacy for a rare condition has impacted thousands and hundreds of thousands of other people with other conditions. It's occurred with infectious diseases. It's occurred in neuro-oncology and other immune targets for cancers. A lot of those were developed in specific situations and they're now revolutionary treatments in many other areas. But advocacy helps empower patients and their families, it helps educate people also about their rights, about available resources and ways to get involved. And this empowerment is essential, I think for all of our community.

Dr. Peters:
We did a small research study and it was just sort of asking patients how they're coping with their illness. We asked a group that has a rare type of brain tumor, and one of the number one things they do is they build a community, which I think is just wonderful because when you're faced with something, if you can find like-minded individuals, it doesn't feel as lonely anymore. And we've talked about loneliness before on this podcast and the importance to being part of a group. And people can feel misunderstood, their disease may not be well understood to the existing healthcare system overall. So what if a certain type of disease makes it that there are gaps in the care for those particular patients? And so even though you think about treating the disease, you also want to treat what is the problem with getting the best next care for those patients?

Dr. Correa:
Yeah, I mean the community, our community living with different neurologic conditions, they're really the subject matter experts for living with that condition and each of you are subject matter experts for your own perspective on what it is to be in your life and your situation and with your condition. Beyond that, it's important also to remember other aspects about people's lives. And Cam talked about many other aspects about being him with his family, his children, how he thinks of the future for his kids. One of the other things I wanted to get back to in terms of other topics was in our episode today, Cam also talked about his and his father's experience with traumatic brain injury and concussion and the process of return to play in football. But Katy, we know we've brought up two different situations. Cam's father experienced head injuries in his football career, and then later he was diagnosed with this brain tumor, chordoma, more broadly with brain tumors. What do we know right now about any connection between head trauma and brain tumors?

Dr. Peters:
So this is an area that continues to be explored because to date we only know one real true risk factor for the development of brain tumors that's environmental, and that is exposure to ionizing radiation. So think about people that were in the Chernobyl accidents or people that were exposed to large doses of radiation.
That being said, there's been recent research and observations in published papers where they evaluated veterans from the Iraq and Afghanistan wars and were able to show that people that had medium to severe head trauma, including penetrating head trauma, not necessarily the word concussion being used, but more just head trauma, that they were more likely to develop brain tumors. Now, one of the concerns about this study is even though they made this observation, there could be some confounders to it, the population tended to be quite homogenous. It was male patients or individuals. They tended to be white and not represent Hispanic or Black Americans as much, or other ethnicities, and they also tended to be in combat and they could have been exposed to a myriad of things including burn pits. So this is still an area of discussion, and we also discussed this with our expert when we talked about the Brain Donor Project with Tish Hevel on our podcast. So I would refer people back to that podcast for more discussion on this topic.

Dr. Correa:
That's good, yeah. And one of the areas that the NFL Players Association and the NFL's work to fund and support greater research into traumatic brain injury may help us distinguish some of the differences between combat-related head injuries and other types of head injuries. Many people are exposed or have history of concussions or moderate and severe head injuries from different occupational causes or falls, and we're not really clear yet, to some extent, how much a combat-related or a blast injury or a penetrating injury occurring in that setting is different from the other types of head injuries that we get exposed to in a more non-combat or civilian life setting. I hope you all enjoyed this episode. And Katy, thanks for lending your neuro-oncology perspective also to our discussion.

Dr. Peters:
Well, thank you for having me as your co-host and expert.

Dr. Correa:
Thank you again for joining us today on the Brain & Life Podcast. Follow and subscribe to this podcast so you don't miss our weekly episodes. You can also sign up to receive the Brain & Life Magazine for free at brainandlife.org. Don't forget about Brain & Life en Espanol.

Dr. Peters:
Also, for each episode, you can find out how to connect with our team and our guests along with great resources in our show notes. We love it when we hear your ideas or questions. You can send these in an email to blpodcast@brainandlife.org and leave us a message at 612-928-6206.

Dr. Correa:
You can also find that information in our show notes, and you can follow Katy and me and the Brain & Life Magazine on many of your preferred social media channels. We're your host, Dr. Daniel Correa, I'm connecting with you from New York City and online @NeuroDrCorrea.

Dr. Peters:
And Dr. Katy Peters, joining you from Durham North Carolina and online @KatyPetersMDPhD.

Dr. Correa:
Most importantly, thank you and all of our community members that trust us with their health and everyone living with neurologic conditions.

Dr. Peters:
We hope together we can take steps to better brain health and each thrive with our own abilities every day.

Dr. Correa:
Before you start the next episode, we would appreciate if you could give us five stars and leave a review. This helps others find the Brain & Life podcast. See you next week.

Advocacy and Athleticism with the Pittsburgh Steeler’s Cam Heyward

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