Smarter Than Cancer

David: So Hajar, have you ever had surgery, like a major surgery?

Hajar: I have. I had one that I would say was pretty major. I thought… Going in for some reason, I thought it was going to be an hour, but it ended up being seven hours. So I would say that was pretty major.

David: Oh my goodness. Yeah, I… you know, it's funny, I'm, I'm glad we're talking about this, then, because I've never ... I've had minor things, but I've never been under a general anesthetic. So I'm not speaking from personal experience like you are, but when I hear people talking about surgery sometimes I feel like there's, there's kind of a disconnect. Like, I will hear surgeons saying things like, "Oh, it's very well tolerated. There's two weeks of recovery in the hospital and then 12 weeks at home," And I feel like they kind of “yada, yada, yada” through what could be a very grueling process of getting over this.

Hajar: Yes. Okay, so for my surgery, my recovery period was about a month to six weeks, and I wasn't allowed to carry anything. Like, even a carton of milk was too heavy for me to carry for six weeks. And it was told to me like, you know, in that manner, and it felt like this was going to completely change my life for the next six weeks.

David: Wow. You know, and I think because of that disconnect of communication, sometimes people, when they come out

of surgery, or after a heavy round of chemo or radiation therapy, I think they can sometimes feel really frustrated, or even feel guilty that they don't feel better sooner. Like, "We did it. It went well. How come I'm not better immediately?"

This is "Smarter Than Cancer," by the way, and I'm David Hoffman.

Hajar: And I'm Hajar Eldaas.

David: And today, I wanna share a conversation I had with Dr. Natalie Kaleta. She's the supervisor of Roswell Park's Rehabilitation Department, which is the group that tries to get people through that post-surgical, post-procedure period as easily as they can.

And we talked about how they're getting involved much sooner, not just rehabbing people from heavy treatments, but also "prehabbing" them, preparing them physically and mentally before the procedure so they know what to expect, and they're in better shape to come through it easier and with better results.

Hajar: “Prehab”? I like that word.

David: Well, let's listen

Hajar: Let's do it.

[Opening Theme]

Kaleta: My name is Natalie Kaleta. I'm the rehab supervisor. I'm also a physical therapist.

Kaleta: I always remind patients, when they can kind of feel a little bit defeated on their progress, like, "You went through a major surgery, and what does that entail?” And a lot of times I tell my patients… like, this is just something that they can kind of comprehend a little bit better:

If you fall and break your bone, a lot of times you're in a cast for about eight weeks. That's two months just healing there. Then you take the cast off, and then we have to get the muscles strong, and that's another couple of months. So it really is this long progression of things. There are so many things that happen with a surgery, and patients are really hard on themselves because they don't bounce back as quickly as they expect to.

David: I mean, you wouldn't feel guilty if you were stabbed with a knife and then took a while to recover.

Kaleta: Yeah. Yes. Yes! I need to start telling my patients that.

David: This is being stabbed with a knife, right? I mean in a controlled setting.

Kaleta: Yeah, you can definitely think of it like that.

Kaleta: Patients are coming out of surgeries or radiation having these conditions that are pretty debilitating, and we're trying to rehabilitate them at that point, and it can be really challenging so we've started to create more prehab programs.

We have them come in and see us, we have them do home programs; whatever it takes to start getting patients stronger going into surgeries, getting stronger prior to going into the hospital. That way they have a better outcome. They're able to get back to their lifestyle a little bit easier.

These patients have been through a lot. They have gone through multiple treatments, many of them, maybe multiple surgeries, and then they're still battling the side effects on top of that, and they are really trying to just improve their quality of life to a point where they're happy again.

So within the rehab department we have traditional physical therapy, traditional occupational therapy, and then we have two specialties of pelvic floor and lymphedema treatment. We have prehab programs for all of them.

David: This is a really comprehensive program that tries to look at every aspect of what will help a cancer patient going into surgery do better when they come out of it. Some of this is what you might call traditional physical therapy: exercising so that your body is in better physical shape and more ready to handle the rigors of a major surgery.

Kaleta: So if they have never exercised and they're at an advanced age, that's definitely gonna be difficult for them, to go into a surgery without any kind of mobility program. If we can even get them walking more throughout their house, it's just kind of creating these habits of improving mobility so that after surgery, they can kind of get a taste of what it feels like, of

moving around more and maintaining and regaining their independence.

The prehab program can be anything from just teaching them techniques for balance to implementing using a walker or a cane, to doing specific exercises both in our clinic and at home.
We give them a ton of education on what to expect right after surgery while they're in the hospital and what to expect six weeks and a year out.

A lot of patients will come back, and they'll say, "I'm really happy you told me that. I'm not so hard on myself," or, "I'm really happy you told me the correct body mechanics to get out of bed. I rolled to my side before I sat up, so I didn't sit straight up and put any pressure on my incision. It really helped reduce the pain."

David: I mean, I wonder how many people, what percentage of people who are using a cane or a walker have never actually been shown how to use it properly. Like…

Kaleta: I wish I had the real statistics on that because…

David: Most of them?

Kaleta: Yeah

David: 90%, I don't know.

Kaleta: They're all the wrong height when they come in, so we're adjusting the height. You know, if they're too tall, I mean,

they're not useful. You can't lean onto that for stability. But yeah, that's a good question.

I saw a pretty funny meme the other day that said… it was a video of a patient carrying his walker, and it said something along the lines of, "This is about 90% of the patients I educate on walker use to use all the time." And yes, he's using it all the time, but he's also just carrying it.So…

Kaleta: It is, it is true. Um…

David: Well, you don't wanna wear it out. It was expensive.

Kaleta: Yeah, maybe.

So we have a lot of different specialties within our department. For example… so we have a program for prostate patients.

If you're going to have your prostate removed, you come see our pelvic floor team, um, about a month prior to your surgery. We educate you on everything, and we teach you pelvic floor strengthening exercises. Because when you have your prostate removed, the pelvic floor really has to kinda pick up the slack for not having that prostate there. It also has to learn how to re-coordinate itself.

So there are a lot of things we can teach the patient to do leading up to surgery, after surgery, when they have a lot of things going through their mind, they don't have to focus so hard on “what should I be doing?” They have already been practicing this and building the strength leading up to the surgery that after surgery it becomes a little bit more second nature to them.

David: What's a pelvic floor?

Kaleta: So it's basically like a bowl of muscles at the base of the pelvis.It holds everything up.

So it takes a lot of pressure from all your organs, your bladder, but what it does is it reduces leaking after surgery so that you don't have incontinence. So if we can strengthen and coordinate those pelvic floor muscles, then we can really improve your quality of life and reduce any incontinence you may be having

David: Does that…does that mean peeing your pants or pooping them, or both? Either?

Kaleta: Both, yeah.

David: Yeah. Um, I mean, that's something people don't tell you is going to be a consequence of prostate surgery.

Kaleta: No. Prior to a few years back, we didn't have a lot of these prehab programs, so patients were unaware that these things could happen. It's not normal to poop and pee your pants, but initially it is after surgery, and that's okay if you think about,you know, how in-depth the surgery was.

David: Another particular problem this prehab team specializes in is something called lymphedema. This is a condition of the lymph nodes.

For those of you who may not be familiar, and I wasn't, the lymphatic system kind of does garbage disposal for your internal organs.

Whenever there's extra stuff in your body, damaged cells, leftover building materials, or invaders like bacteria and viruses— it all gets shunted into these kind of garbage chutes called lymph vessels, where a special fluid transports them to sort of internal waste-water treatment plants called lymph nodes.
You have hundreds of these nodes all around your body. In them, the lymph fluid gets processed by special white blood cells, and all of the trash goes out of your body and into the toilet.

You know when you get sick and you have swollen glands in your neck? Those are lymph nodes swelling up because they're processing those germs and getting rid of them.

Anyway, not surprisingly, because cancer is a disease of malfunctioning cells and lymph nodes are where malfunctioning cells get carried off to, lymph nodes are almost always the first place that cancer metastasizes to. This means that damaged, malfunctioning lymph nodes are a really common side effect of many cancers and also of many cancer treatments.

This can cause a condition called lymphedema. This is when the garbage chutes, those lymph vessels, back up and start leaking fluid, making it flood out into places it doesn't belong.

Kaleta: Lymphedema can happen after you've had lymph nodes dissected, after you've had radiation, any kind of damage that you might have had to the lymphatic system. So it's fluid that's leaked from the vessels themselves into this interstitial space, so that lymph fluid can just back up into whatever quadrant you have the damage in. It might feel like heaviness. Maybe it feels like bruising.

We have a really cool device called the SOZO machine, and what that does is it sends an electrical signal between both of your limbs, and it can determine how much fluid based on how fast that signal travels.

So, we can provide compression exercises. We can recommend compression pumps, or teach patients how to do lymphatic massages.Our goal is to guide that fluid out of the quadrant of our body that it's backing up into and push it to healthy lymph vessels, lymph nodes that can help recirculate it around our body.

David: Wow, and you can do that just externally just by doing exercises and…

Kaleta: Yeah, exactly.

David: That's amazing.

Kaleta: Yes.

David: How common a condition is that?

Kaleta: Well, the research is kind of all over the map.
It really depends on what more comorbidities you have going into the surgery. It can be based on your BMI. It can be based on your activity level prior to the surgery. But I guess on average, I would say, and it's… this is a broad number, but, like, 20 to 60% of patients who are having lymph node dissections, axillary lymph nodes dissections particularly is what I'm talking about, combined with surgery and radiation have the potential to develop lymphedema. And the cool thing about…

David: That’s a significant number of patients.

Kaleta: It is. It is. And that's the cool thing about our prehab program and our ability to use this SOZO device, is that we can detect lymphedema at a subclinical level. So prior to having this prehab program using this device, we would see patients in our clinic who already had very visible lymphedema, visible swelling, and then we were trying to backtrack and treat the swelling, and it took a lot more visits. It reduced range of motion. It affected just people's overall quality of life. Now we're catching it so much earlier, and we've seen this huge transition in the patient population that we see. We're seeing patients, you know, not very frequently. We'll see them once prior to surgery, about a month or so after surgery or radiation, and then maybe every three months for the remainder of the year.

Prior to this prehab program, we were seeing patients five times a week for three straight weeks, and then we were seeing them monthly after that.

David: Wow.

Kaleta: And if you don't treat it or catch it early, you can develop infections, and there are things that can come of it, whereas now, like, we're just not seeing that a lot because of this prehab program we've developed.

David: You said you can get this at preclinical levels, so you can notice a leak maybe before it's creating symptoms?

Kaleta: Exactly. And a lot of these patients prior to, you know, having cancer actually already have a lymphatic deficit that has never been treated. You may see people who have swollen legs, and
they just let it go forever, and they say, "I'm fine." Then they come to us, and we're like, "You have a preexisting condition. Now you're going to have surgery, and it's only gonna get worse if we don't do something.

David: Wow, I know that's really… You're blowing my mind here. Education is happening. I know that's really common in older people, like, swollen legs, swollen feet.

Kaleta: Yes.

David: This is a main… a primary cause of that.

Kaleta: Yes. Yes. It's because, you know, when we have swelling, we think, "Oh, it's just gonna go away on its own." But when it becomes a long-term thing, it doesn't go away on its own, and that's where we step in.

David: Right. It's not just a swollen muscle, it's a… it's actual fluid buildup that you're having to…

Kaleta: Yes.

David: Right. Why would it go away? It's not going to vanish. It's just collecting there, right?

Kaleta: Correct. These prehab programs that we have created with the clinicians have just really changed, not only my way of

thinking and how I treat patients, but just I've seen, like, a huge quality-of-life improvement in patients.

I recently presented at the physical therapy conference on patients we had seen in the lymphedema clinic who have had head and neck cancer. And when we developed this prehab program for them and just educating them on what to expect and what to do pre- and post-radiation, their quality-of-life questionnaires improved.They were just happy to know what to expect and what they can do to help themselves.

I was always there grinding, trying to get these patients back to where they were pre-surgery, pre-injury, pre-radiation, pre-chemo, whatever it may be. And when I couldn't get to that point, sometimes I was hard on myself because I felt like I failed the patient. I'm just amazed at how far we've come and how much I as a therapist have learned.

So there's been a lot of advancements, sometimes, um, patients, I completely understand, can get appointment burden and have just way too many things to go to, but even if we can see them one time in the rehab department and give them a really good home exercise program to work on, that's all it might be, and that's all it might take.

Now, I don't like people to necessarily think, "Oh, if I do all these things, I'm not going to get these things," but it just gives us the mentality that if I do these things, I can really help myself. I can adapt better. I might reduce my risk of getting it so severely. I can reduce other things that may come with it. and really just get themselves back to where they want to be.

[Closing Credits]
​
Thanks for listening to Smarter Than Cancer, a production of Roswell Park Comprehensive Cancer Center.
The show is written and produced by your hosts, Hajar Eldaas and David Hoffman.
Production Oversight by Peter Soscia.
Additional logistics and support from Michelle Eisenstein.
Our production partner for the series is CitizenRacecar.
Post-production by Gregory Schweitzer for DCP Entertainment.
Publication and Promotion supervised by Candice Chantalou.
If you or your loved one has been diagnosed with cancer and would like to schedule an appointment with Roswell Park, please call 1-800-ROSWELL. That's 1-800-R-O-S-W-E-L-L, or visit us at roswellpark.org.
If you're enjoying this series, we would love to hear from you. Please reach out and tell us about your cancer story and let us know what topics you'd like us to cover in future episodes by filling out the form at roswellpark.org/smarterthancancer.
And if you know someone else who might find value in what we're doing, please tell them about it. You can listen and subscribe wherever you get your podcasts.

David: This is Smarter Than Cancer, and I'm David Hoffman.
Hajar: And I'm Hajar Eldaas
David: Today, I wanna share a conversation that I had that I
thought was really important and really moving, honestly.
Hajar: Okay, tell me about it.
David: I spoke to Dr. Meghan Pahler. She's a clinical psychologist who's the head of the Department of Psychology here
at Roswell Park.

Hajar: Interesting. Does a psychologist at a cancer center do different things than a psychologist anywhere else?

David: Well, it is interesting. Like anywhere, she really just talks to people and gets them to talk to her. But the way that she does it and the way that she spoke with me is not exactly about trying to make people feel happier, at least not in the short term. It's more about giving people permission to feel how they feel, and then using that as a jumping-off point for centering themselves and, you know, acknowledging the challenges they're going through, but also finding balance and acceptance and happiness.

Hajar: Wow. Yeah, that sounds amazing.

David: It really was. Let's listen.

(Theme Music)

Pailer: The bulk of my work here at Roswell is providing psychotherapy to cancer patients and also to their families. And so for the most part, that involves helping somebody with cancer cope with the really significant emotional toll that the disease takes, and also the tremendous disruption to somebody's life. That can be disruption to their work, to the roles that they
play in their family, to their appearance, um, to their ability to feel like they are a productive member of the workforce of society, and that can take a really significant emotional toll.

David: Yeah. I mean, I imagine people are coming into you inevery possible state of distress and, like, you must see an incredible range of emotional expression over the course of a day or a week or a month.

Pailer: Oh, absolutely. Absolutely. There's a huge range. There are people who, uh, just experience overwhelming sadness and struggle then to get out of bed, to function in their lives, to
try to have hope and there are people who are so scared that it's hard to, again, it's hard to function. It's hard to, uh, think around the beast that is fear. And there are also many, many people who are able over time to figure out how to sort of cohabitate with cancer. That's, uh, a lot of times people come to me and say, "I wanna not be scared," or, um, "I wanna be happy again." And my response to that is, that fear is not something you're gonna be able to kick out of the vehicle, you know?

David: Right.

Pailer: But the goal is to not have it sit on your lap as you're trying to drive about in your life. So maybe we'll have it sit next to you. Maybe we'll have it in the backseat, or, uh, if we're really successful, it can sit in the trunk for a while. Um, but fear and overwhelm are, um, they're sort of like the roommates that you never wanted, but they're there. So it's not necessarily about getting rid of them, but about trying to live with them and live well.

David: I saw a meme, I don't know, a couple months ago that said, uh, "Sometimes I wrestle with my demons, and sometimes we just cuddle."

Pailer: Exactly. And sometimes they can, uh, they can sit quietly. And actually, we like to use the word “distress” specifically because it doesn't pathologize it, specifically.

David: Right.

Pailer: Because feelings of sadness and anxiety are sort of part of the territory. Whatever the distress is that they're experiencing, what it looks like, you know, is it anxiety? Is it depression? Is it normative adjustment? And people are usually very relieved to hear that they're not the only one who experiences these types of emotions.

David: I'm interested in that phrase normative adjustment. What's the difference? What, where's the line between depression and norm- normative adjustment? I mean, how sad is too sad?

Pailer: It's, uh, it's such a spectrum, right? So the cardinal symptoms of depression are pervasive sadness, where you feel sad most of the day, nearly every day, um, and also anhedonia, which is a loss of the ability to experience pleasure at an event that would normally bring you pleasure. So, you know, if I used to really enjoy when everybody came over to visit, and now I just, I can't wait for them to leave. That's an example of an anhedonic symptom.

David: Could be anywhere, like I used to like listening to music and now I just don’t care about it.

Pailer: Exactly. So those are the kinds of things that I look for. The lines between, you know, sort of normative adjustment versus, a clinical depressive episode are really based on how pervasive those mood symptoms are and how much they interfere with somebody's ability to live their lives.

David: Where can you get someone to through this process? You know what I mean? How is this just not gonna suck? Like, how do you... What can, what can you do?

Pailer: That's a very, very good point, because the goal is not to not be sad, right? Right? To not feel upset about a cancer diagnosis. Uh, we actually had a joke among the psychologists
for a while because we saw somebody put in a consult that said, "Sad." And the thing that was so ridiculous about that is that there was, that, that there would be something wrong with
feeling sad.

David: I’ve analyzed Lake Erie and determined that it's wet

Pailer: Correct.

Pailer: And, it's interesting because there are s-there's so much overlap between side effects of chemotherapy and depressive symptoms.

David: Oh, that's interesting.

Pailer: So, if you look at the, um, DSM diagnostic criteria for depressive symptoms, there's sadness, there's anhedonia, there's fatigue, there's sleep disturbance, there's appetite disruption, a sense of worthlessness, worry. And if you look at a lot of those chemotherapy side effects, you have fatigue, you have appetite disturbance, you have, uh, medications that impact
sleep, either, you know, insomnia or hypersomnia. There's a lot of overlap. And I used to work a lot on the bone marrow transplant service, and I used to say to people all the time that if I wanted to create a depressive episode in a lab, I would give people bone marrow transplants.

David: Right.

Pailer: Because you take them out of all things that bring them joy, you make them feel very, very sick and disrupt sleep, appetite, and you tell them that they have to be away from their loved ones, and it's gonna last four months. So, you know, there are, uh, there are a lot of factors at play here that can impact people's moods. So, you know, uh, a lot of what we do really is normalizing the whole gamut of emotional reactions to a cancer diagnosis because people are allowed to feel sad, they're allowed to feel angry, they're allowed to be scared, and that doesn't mean you're not doing it right.

Pailer: We have such a message for cancer patients of positivity, and I think positivity is a wonderful thing, but the expectation that a cancer patient should feel positive all of the time, and that there's something wrong if they show a negative emotion or don't feel positive, there's a wonderful psychiatrist who is considered the founding mother of this field
of psychosocial oncology, and she used the term, the tyranny of the positive thinking.

David: Yeah. Wow.

Pailer: Because cancer patients are expected to adjust, um, to go through all of these very difficult treatments, and they're supposed to do it with a positive attitude. And the challenge of
that is that, then people put all sorts of expectations on themselves.

David: And to give back and to inspire others and to all of this.

Pailer: And your positive attitude is gonna make your cancer more easy to treat.

David: And so if you're not positive enough, you're, you know, if, if you get sick, or it's because you weren't positive enough

Pailer: That's right. That's right. If attitude is everything and then your cancer doesn't get better, then you're not doing it right, or that's the, that's the fear, which then puts a whole lot of pressure on people to try to cope a certain way. and then if they're not or if they're feeling these negative feelings, it can be difficult to talk about it

David: How do you feel... We've, we've talked about this, the, the little team that makes this show about the, the terminology of “fighting” cancer. How do you feel about that? You winced
when I said it.

Pailer: Yes. I think that, um, that the fighting cancer terminology is tricky because in fights, there's often a winner and then a loser. And so to fight and then to have your cancer progress, there's an implication there of failure.

David: You're a loser. You've lost.

Pailer: That's right. You've lost your battle. Um, and then similarly, if people are deciding, I don't want to do active treatment anymore, or my disease has progressed to a certain point, there's an implicit message there of giving up, you know, surrendering, which is part of that battle, imagery, and I think it can be damaging to people.

David: Is part of it sounds like what we're talking about is learning to live with cancer and that continuing to live while you're going through whatever journey cancer's gonna take you
on. Is part of that learning to be okay with the idea of mortality generally?

Pailer: Being okay with mortality is a very, very challenging task.

David: For sure.

Pailer: And some people can interact with their mortality in such a way that they can talk about it, think about it, have perspective. Um, and for other people, that's just too overwhelming, and I don't think that there's a real right or wrong with that. I think the conceptualization of meaning is really important if, if we're thinking about, how do you live with cancer. It starts with a question of what's meaningful to you, because then you're not trying to fix some negative emotion or, or a thing like that. And there's a lovely type of psychotherapy called meaning-centered psychotherapy that was developed with advanced cancer patients. And meaning-centered psychotherapy focuses on these sources of meaning that people have. So you have, meaning as far as how you see yourself, uh, where you come from, what are your stories if I asked you to tell me some stories about your childhood that make you you. You know, people have stories like that. They have family stories. Meaning can also be things like appreciating beauty or humor or nature. It can be what sort of legacy you're gonna leave, and where you derive love and connection. Yeah.

David: Yeah.

Pailer: if you think about all those different sources of meaning and how disruptive cancer can be there-

David: Yeah.

Pailer: It throws a wrench in all of that. But also, how do you then reconnect with some of those sources of meaning and make sure that a life, your life that you're leading, continues to,
that you continue to have access to those things? One of the things that I do with people is explore their worlds, their identity, their sense of self, and try to figure out ways of increasing the proportion of time that they spend in their life identity relative to their cancer patient identity.

David: That's interesting. That's an interesting distinction.

Pailer: I usually have, I draw a pie chart, and then make terrible jokes about my artistic ability. Um, but I draw the pie chart, and then have people estimate for me the proportion of their sort of life roles that are presently occupied by being a cancer patient. So then from there, we look at, say, for example, seventy-five percent of their world is being taken up by their cancer-related stuff. I look at what's in the twenty-five percent, and one of the goals is to try to scooch the twenty-five percent, a little bit more to have it encompass maybe thirty percent or, or thirty-five.

David: and maybe even just to be more aware that that 25% exists and to-

Pailer: That's right

David: take more deli- as much delight in it as you can or something?

Pailer: And to work on the fact that it doesn't have to be all or nothing. So if you're not feeling up for socializing with your friends like you used to, but you could go for half an hour, it's probably worth it because you'd be able to feel a little bit more like yourself than you do now. And if you're feeling badly about all the changes that are happening in your appearance, maybe you spend a little bit of time, um, getting dressed in something other than sweatpants when you go out and putting on a, a cool hat or a pair of earrings, uh, because it
makes you feel like you're attending to your, your, uh, physical self a little bit. Ways of inhabiting your identity to the extent that you can. I keep coming back to that. so that's a-- that's an important thing. Also, I do a lot of work with people on coping with anxiety, and that can, that can look a number of different ways. It can be, um, connecting them with some, um, mindfulness resources, uh, meditation, things like that, diaphragmatic breathing, relaxation skills training. I do a lot of that. And then also this idea of how do you conceptualize anxiety in such a way that you can see around the edges of it a little bit? The fancy term for that is cognitive defusion. So rather than being stuck up against your anxiety you
pull back from it a little bit.

David: Mm-hmm.

Pailer: so that you can recognize it's there. In a way, you make room for it so that you're not constantly fighting with it or struggling.

David: Yeah.

Pailer: So those are some ways of managing anxiety that don't involve, looking for the off switch of the anxiety, which I still haven't found. And when it comes to people who are very,
very much struggling with depression, again, it comes back to are there things that you do that bring you joy? And how can you find those things? One of my favorite exercises is to have people keep a notebook where they're looking for, um, any event that happened over the course of their day where they were able to be in that moment and they experienced some joy with it. I took a mindfulness class at one point when my kids were little, and I was doing this assignment where I was looking for those moments of joy. And there was one day I got home from work and the kids were running through the sprinkler, but the sprinkler was hitting the neighbor's house. So I went to try to move the sprinkler, and I'm dressed for work, and the sprinkler hit me all in the face. So I just decided to go for it, and I ran through that sprinkler over and over again in my work clothes with my kids. And because I was doing that exercise, I wrote about it in the journal. And so this is ten years later, and I remember it vividly. So the recording of the joy episodes in the journal, it does a couple of things. One, it causes you to be on the lookout
for them. And the other is that you can reflect on them, and then you have a lovely anthology of, of fun, interesting, little, tiny moments of joy. And that can be a way of, um, beginning the process of trying to have some level of mindful presence and also a little bit of joy.

David: You know, of all the places you could practice psychology, of all the tracks you could've gone down, why here? Why did you choose to work here?

Pailer: I came here out of total serendipity because I was, um, moving to this area and, and there were... this position was available, and then there was another position available which
much more closely met my thoughts about what I wanted to do with my life.

David: What were those thoughts? What were you doing before? What were you doing previously?

Pailer: I was doing research at a children's hospital.

David: Hmm.

Pailer: Uh, we were designing interventions for kids seeking care in the emergency department.
David: Oh.

Pailer: Oh, wow. so I thought that I wanted to work primarily with children, and I was, to be absolutely honest with you, scared of illness.

David: Wow.

Pailer: So I didn't know how I was going to be able to work at a cancer hospital. But working here with the struggles that people go through is such a very, very specific and intense experence, and the opportunities for, um, for just seeing people who end up doing so well, and emerging from this very difficult time. That's really, really where it's at. I work with a young man who was so, so sick for years really, and, and it didn't look like things were gonna end well.and I saw him last week, and he's enrolling in college, and I asked him if he had anything else
that he wanted to share at the end of the session, and he was gonna ask somebody out to the movies.

David: Fantastic.

Pailer: And I thought, "This is why I do this.”

David: That's an act of hope.

Pailer: She said “yes.”

David: I'm so glad.

Pailer: But it's this idea of being able to really bear witness to these extremely difficult things and to help people have, uh, have some level of hope. It's such powerful work.

David: Are you still afraid of illness?

Pailer: I have been, um, engaging in a 20-year exposure therapy exercise with myself.

David: How's it going?

Pailer: I'm in a different place now than I was, for sure. For sure

David: Do you think that that helps you in what you do maybe? 'Cause you're, it will put you in a place of relating to someone else

Pailer: Oh, absolutely. Absolutely. And I think that's important, right? It's being able to really understand where people are coming from and how difficult this whole process is, and then being able to draw from all the stories I've heard and the strategies that people have used to get through it.

David: An overarching theme I feel like to almost every conversation we've had for this show has been this idea of treating the whole person, and it's, it's heartening to see
people at every discipline sort of thinking this way now or talking about it. That, you know, I feel like maybe in the, the dark ages of the 1960s or something, you know, the idea was, you know, cut the tumor out, blast them with chemo, kick them to the curb, good luck kind of thing, you know? Like... And this is-- You're doing something very different here. Um, I wonder if you could speak to that, you know, this idea of treating a whole body and, you know, the mind and the spirit being part of that.

Pailer: Oh, absolutely. And that is by no means unique to the work that we do in the psychotherapy room. I think that's one thing that, that I see over and over again, is, um, medical teams who have awareness of the fact that people are whole people, and doing things like learning a little bit about their lives and knowing what's important to them, and making sure that if you have a trip planned to Paris, you're gonna coordinate your, uh, chemotherapy regimen to accommodate that whenever possible. Um, I think that there has been a tremendous amount of advances in that whole person approach to treating cancer. and that also extends to the family members of cancer patients. That's one thing that we're actually working on now, is making sure that we offer supportive resources to the loved ones that are providing the care for the cancer patients as well because the person exists within a family context, and that support, social support is one of the most important variables as far as somebody's psychological adjustment to cancer. So making sure that people's support networks are given some attention and TLC as well. it's part of the whole kind of comprehensive aspect of it.

David: I mean, is a big part of this of, of what your, your work and your, your goals just helping people figure out what they want now that they've reached this new... That they're, they're
in this new phase of their life, like what they want to accomplish, where they wanna go, how they wanna get there?

Pailer: Oh, absolutely. A lot of times people emerge out the other side of a cancer diagnosis with a different sort of sense of what's important.

David: Sure.

Pailer: And how to build a life moving forward that is more congruent with the life they want to be living. There's maybe a mindset that, uh, being a psychologist in a cancer center is a depressing thing to do or, you know, that we're with sadness all the time. And I spend so much time with people laughing, finding joy in the ridiculous, um, and, talking to people about hope. and I think that's a really important part of what I do, and it's not necessarily what people would think of, but, uh, but it's a really, really rewarding and valuable piece of it for me.

(Closing Credits)

Hajar: Do you remember when we first started working on this podcast? I was a little nervous to be working on a show all
about cancer.

David: Well, totally. I was too. I mean, it's quite a thing tocommit yourself to spend so much time with something so heavy.

Hajar: Yeah. It's interesting, because after almost a year of doing this, I feel like I understand cancer so much better now. And because of that, I think I'm actually a lot less afraid of it.

David: Well, that's great.

Hajar: Yeah. I mean, it's still a really serious disease, but I used to think that if you had cancer, it was kind of over. Like, survival was so, so rare, almost impossible, really.

David: Well, I think a lot of people probably think that, but you're right. The more we've talked to people, the more you realize that that's not the whole story. There's a lot of people who get a diagnosis, get treated, recover, and live a long life after that.

Hajar: And there's a whole system built around that. It's called survivorship, and there's actually an entire program at Roswell Park dedicated to it. But the area I'm most interested in for today is what happens when you survive cancer, when you become
cancer-free.

David: Are you ever really cancer-free?

Hajar: Ugh. That's a good question. We're gonna answer that today. By the way, this is Smarter Than Cancer. I'm Hajar Eldaas.

David: And I'm David Hoffman.

Hajar: So, in this episode, I spoke with Dr. Mary Reid. She's the Chief of Cancer Screening, Survivorship, and Mentorship at Roswell Park, and she walked me through what patients' lives look like after treatment ends—physically, emotionally, mentally—and why that after-cancer phase can be really complicated and confusing.

David: Great. Let's go.

[Theme Music]

Hajar: What does it actually mean to be, quote, "in survivorship"?

Reid: Technically, when you're diagnosed, you're a survivor. But people who are diagnosed and active don't really see themselves that way. They're not sure they're gonna survive. When you've stopped treatment and you've essentially been cured, or you stop treatment where you're on a maintenance therapy, even if you have some residual cancer, you're starting to recover from the experience. Your body is starting to recover. And I think for us, that's when we really think people are survivors. They start to recover from this experience.

Hajar: We were speaking to one of your colleagues. She mentioned that often it's immediately after someone becomes cancer-free that their anxiety spikes. You would think it would be celebratory and everything's great, but that's actually when they're feeling the most anxious.

Reid: When you're in treatment, oftentimes you're followed very, very closely. As you're getting farther away from cancer treatment finishing, you see your oncologist a little bit less, and you don't have the same connection with these people who saved your life. And also, now what happens? It's a period of anxiety because you had a goal and you treated that cancer, and now what happens? You're sort of on your own, and that's why having a survivorship program, as opposed to just sending someone back to their primary care doctor and back into the community, is really important as the transition. It is a hard transition period. And psychologically, it could be five years before someone actually thinks that they beat it, and that's a five-year period of not feeling so great.

Reid: In that stage, the residual effects of being treated are, for some people, profound, and for other patients, they have residual side effects that don't really affect their daily life, but may go on for 50 years, depending on when they were diagnosed.
If you were treated as a kid for leukemia or lymphoma, or you had a transplant, and those treatments are much more successful than they were, pediatric cancer survivorship is really at its best. You may live for 50 years. It may affect your fertility. It could affect your likelihood of getting a second cancer or developing another hematologic cancer. Or if you had GI surgery where they kind of rearrange your
colon, you may have chronic diarrhea or chronic constipation, or you may have nutritional deficiencies. If you've had part of your breast taken out and you've had reconstructive surgery, you have a mammogram every year or every six months. And so every six months you think, "Is it gonna come back?" We call it scanxiety. It's very common, but it's elevating that because your worst nightmare would be that you get your cancer again. And those are the things that people who survive, fantastic, but
that it changes their life. I mean, there's gonna be 24 million survivors in the US in the next few years, so it's a large group, and we really need to pay attention to what is gonna happen to them and what is happening to them and what they're at risk for.

Hajar: Can you paint me a picture of what... So you go to the doctor, you get your scan, and you now have zero cancer cells in your—you're cancer-free. What does life look like? What is the timeline after that? Are you coming in weekly or monthly? Like, just a general picture of what someone's life would look like after that.

Reid: Well, it really depends on the cancer you had. Initially, you have more scans. You may have one every three months, or you may have one every six months for a year or two years, and then you progress to once a year. There are guidelines that we follow. Some of our clinicians are more conservative and require more scans. We also know that with certain cancers, there's sort of a peak period where they may have a recurrence, and we scan more during that. And once they're past—for instance, with GYN cancers, in the first three years after you've been successfully treated is when we know your risk of recurrence is higher. And once you're past that three years, then your scans decrease, and you're less likely, based on the epidemiology of recurrence, to have that. Now, we're gonna scan you probably forever once a year just to make sure it didn't come back or that you don't have another cancer that has formed. That schedule is set by guidelines, and it means that every year you're reminded again that you're at risk.

Hajar: Yeah, that part, as someone who has a lot of anxiety with doctors, the mental toll feels so unimaginable. Like, are you facing any resistance getting people to come in for those scans? What kind of conversations are you having around that?

Reid: So I don't think—there is some resistance that I'll tell you about, but I don't think the resistance comes from coming back in because you don't want to have this cancer come back. And if it does come back, you want to get it treated. And so there's almost an addiction to those scans because once you've had it and it's normal, you're like, "Oh, thank goodness, I don't have anything." The next day you start that year again. It's anxiety-producing, but once you've had a normal scan, then you know that everything is okay, has been okay for that year. And it's really important to get people to stick to their schedule. Now, at 10 years out, I have an example where they said, "Don't come back for any more CTs." That was difficult for that patient because now they're out on their own with no one monitoring if their cancer's coming back. But the likelihood that it would
recur 10 years out is very low—not impossible. The part that is hard is that if you have someone who's survived a GYN cancer, which is fantastic, and then you say, "Okay, well
now you're through treatment. Now you have to have a mammogram. You have to have a Pap smear. You have to have a colonoscopy. You have to have lung cancer screening," that is hard because that implies—and it's true—that now we're gonna screen you for
other cancers that you may have. And once you've gotten over one, you do not want another one. We would fail if we did not really pressure patients to get into regular screening because I don't want to see someone survive a complicated cancer only to succumb to something that we could have picked up early through screening.
So getting people back on that screening regimen is difficult
because cancer stinks.

Hajar: Yeah.

Reid: And no one wants to go through it again. What we do know is that 20% of all new cancer diagnoses are in people who already had a cancer. So the second cancer rate is the result of genetics, and it's a result of having cytotoxic drugs systemically that cause damage, and also from radiation treatment. And, you know, those are the things that save their lives, but they also induce a risk, a potential risk of a second cancer that's not related to the first.

Hajar: The whole experience of going through cancer is s- so all-consuming. You know, you get this news that you have cancer, and then your entire life gets wrapped into it. And I imagine you're learning everything you can about the type of cancer you have and the treatments available to you, and then your life probably feels on hold while you're going through the treatment. And then once you're done with that, and hopefully the results are positive, and you feel like you can get your head above water for a bit, you now have to think about how you're susceptible to another cancer now. That must be so difficult for people to take in.

Reid: And, and for those folks, they get cured of one cancer, but they already showed that they can grow a cancer. Then they get treated with very intense systemic therapy, which, you know, affects all the normal cells as well as the cancer cells. And it's, uh... If you've had radiation, radiation damages normal cells in addition to damaging tumors. And while we're trying to decrease the exposure to normal cells, we can't do it completely. And the, you know, you know, the, the long-term toxicity from treatments, for instance, with immunotherapy, we're just starting to look at five years after finishing, are
people at an increased risk of any of those things like heart problems or thyroid problems? We're really starting to look at that because it's a highly effective treatment, but it may carry some residual long-term symptoms related to that treatment, especially for systemic therapy. If you have done any damage to multiple organ systems, kidney, liver, heart, thyroid, you know, endocrine, as you watch people and as they age, 'cause as we age, all of our systems are a lot less efficient, people may develop some heart problems down the line. There's some drugs that we already know you can be treated for
with, um, you know, in breast cancer, anthracyclines and whatnot, that we know we have to do heart monitoring long-term because they may develop something 10 years out that's not really, uh, related to their normal risk factors, but may be enhanced or their risk may be increased for a heart problem 10 years later. And so it's understanding that, that that's really important. That's the, the, the role of survivorship in really monitoring those long-term toxicities or toxicities that emerge as people live, um, is really, you know, part of our job.

Hajar: What other things other than a s- developing a secondary disease are you monitoring for or tracking with someone in survivorship?

Reid: Aside from, um, helping them to manage any symptoms. Like peripheral neuropathy is pretty common. It's related to a lot of the drugs that we commonly use. And certain people will have peripheral neuropathy for 10 and 20 years. Some people don't have any. But if they're complaining of peripheral neuropathy, are there drugs? Is there physical therapy? Is there acupuncture? You know, what are the things we know that can help
to resolve that? 'Cause you don't wanna walk around not being able to feel your toes or the bottom of your foot for the rest of your life. And so we really focus in on, um, working on those particular symptoms. Stress and emotional, uh, disruption, family disruption is very common among cancer survivors, especially in those first few years. And so we do an assessment of quality of life. We have now built into our program access to
a social worker who can do online counseling. In our clinic, we can refer to psychology to get people started.

We also know your family gets disrupted. Your kids, uh, don't fully understand what happened. And so a lot of times we engage the family and caregivers in some emotional or social support. Uh, we have support groups, for example. We also know that if
you have your colon rearranged, how you eat is different, that you may have deficiencies. You may have-- be on drugs after breast cancer treatment that cause weight gain, and you wanna get back to your more normal weight, uh, because you can be on those drugs for 10 years. And so how do we do that? Well, we provide really targeted exercise therapy, targeted nutrition therapy, as well as continue to do a full physical assessment.
Um, the one thing I'll say is that we wanna do it. We wanna work with people's primary care doctors who support blood pressure maintenance and do the things, the problems that they've always addressed. But, but very specific to cancer treatment, we are
now specialists in doing that long term.

Hajar: Is this a new way of thinking about survivorship? Like, was this always the standard of care?

Reid: No. It's, it's still relatively new. I think bec- one, because we see more survivors who've had complicated treatment regimens. We understand that primary care doctors are hesitant to take over the surveillance of survivors because they haven't read the literature. They need information. Um, and we also know that a lot of the problems that emerge during survivorship are medical. They're not oncology. It's not about a tumor. It's
really about these other systems, this whole person, and it's not w- oncologists are really good at what they do, but addressing this complicated mix of the whole person, including
the family dynamic, really needs to be done by a specialized program to get the patient...You know, everyone is different, and we need to personalize and individualize that follow-up, but it, it's a result of success, right? Because people are living,
and they wanna get back to pickleball or whatever it was they were doing before, and we want them to get there, and we want them to change their, to, to help to recapture their sense of wellness, whatever that means, and it's a process. And so we've built our program and k- and programs around the country to really start to address this separately from oncology, but not disconnected from oncology.

Hajar: Do you think people go back to normal? Like, does d- do you think there's a certain amount of time that passes where someone can stop thinking about having cancer?

Reid: That I'm not sure about because, one, you know, getting back to normal, it's a different normal. Mm-hmm. You know, you can You can shake having had a heart attack, but you will always be a cancer survivor, partly in your mind and partly 'cause of your medical history. In that way, it's, it's hard to shake it. Some people have kind of a, a PTSD from that time because they felt so bad, but we're all resilient. You know, we recover from things that happen in our lives that are really painful, and I, I think what we've see in our survivors is an incredible resilience and optimism about the life forward. Now, we want them to change certain things that help to bring on that cancer, quitting smoking, changing their diet, getting more exercise. We want them to do all these really positive things, and when they're really ready to embrace the fact that the treatment's
over, sometimes it takes a while, then they can start to really be proactive, so they can reduce their risk of other cancers, and they can start to feel better. But they're, they're not gonna go back to exactly the way they were, and I think that's a hard thing to accept. But it, it offers so many opportunities because you face something as serious as cancer, and you get through it, and then you have your life ahead of you. I think one of the most important things that you see in cancer survivors is that they have a great appreciation for being alive. And so you see differences in family dynamics and, and how they're managing and how they approach work, things like that. You know, the value of
life is really apparent in people who are survivors.

[Credits Music]
Thanks for listening to Smarter Than Cancer, a production of
Roswell Park Comprehensive Cancer Center.

The show is written and produced by your hosts, Hajar Eldaas and
David Hoffman.
Production Oversight by Peter Soscia.
Additional logistics and support from Michelle Eisenstein.
Our production partner for the series is CitizenRacecar.
Post-production by Gregory Schweitzer for DCP Entertainment.
Publication and Promotion supervised by Candice Chantalou.
If you or your loved one has been diagnosed with cancer and
would like to schedule an appointment with Roswell Park, please
call 1-800-ROSWELL. That's 1-800-R-O-S-W-E-L-L, or visit us at
roswellpark.org.
If you're enjoying this series, we would love to hear from you.
Please reach out and tell us about your cancer story and let us
know what topics you'd like us to cover in future episodes by
filling out the form at roswellpark.org/smarterthancancer.
And if you know someone else who might find value in what we're
doing, please tell them about it. You can listen and subscribe
wherever you get your podcasts.

Hajar: So, David....

David: Yes...

Hajar: Think about firefighters.

David: Okay.

Hajar: When you think about the risk they face, what comes to mind first?

David: I mean, fire, getting burned.

Hajar: Right. Okay. That's the obvious one, but go on.

David: I would think smoke inhalation, and danger from collapsing buildings, and stress. How am I doing?

Hajar: Exactly. Those are the immediate dangers, but there's also a long-term risk, and I don't think most of us outside the fire department ever really think about it. By the way, this is Smarter Than Cancer, and I'm Hajar Eldaas.

David: And I'm David Hoffman.

Hajar: So that risk is cancer risk, and today we're gonna talk about it because it's now the leading cause of death in retired firefighters.

David: Which I, I mean, I guess makes sense when you think about how much smoke and particulates they're breathing in over the course of a, of a career. A lot of that has to be carcinogenic, right?
Hajar: Yeah. And in doing this episode, I learned that it's not just what they're breathing in, it's also what gets absorbed through their skin and the contaminated materials that they're surrounded by during and after fires. You know, things most of us really never think about. And so in this episode, I tried to understand more about what that exposure actually looks like over the course of a career in the fire department, why it's so
closely linked to cancer risk, and what's being done about it.

David: All right. I wanna hear about it.
[Theme Music]

Mark: So in June 2008, in the city of Buffalo at Niagara and Ferry, there was a pool supply place that caught fire. It burned for a couple of days. It was a hazardous materials incident with a fire. There were 250 people from Buffalo Fire that filled out exposure forms. Sadly, there were a number of members that became sick and were disabled from that fire and no longer could work as firefighters. There were another set of members that actually, tragically, passed away. Four in particular had
glioblastomas. To have one person have that sort of condition is pretty rare, from what I'm being told, but four really just kind of drives home the point that, unfortunately, that was an incident that really made our members sick. My name is Mark Mindola, and I've been retired now three years from Buffalo Fire Department. I served there for 27 years, but
today I'm the Western New York ambassador for the National Firefighter Registry for Cancer.

Hajar: Was there anything that made it apparent right away that
this fire was going to be different than other big fires?
Mark: The company that I was with was Ladder Six. We had just gotten a brand-new ladder truck maybe six months or a year before. That truck went to that fire and operated there over the period of two days, and when it came back, all the brass fittings on the truck were green. So there was physical damage to the actual engines and ladders that went there, so that right away had told us that something was wrong. Luckily, the commissioner at the time, Mike Lombardo, did fill out a, I think it's called, like, a global exposure report, where the members, every single member that operated there, was written up for a general exposure of all the chemicals that were in the facility.

Hajar: Is that what got you to care more about this—

Mark: I was at that fire. So I ended up there at midnight on that first day, and I worked there till 8:00 the next morning. Fast-forward to the first bunch of CT scans, and unfortunately, they find two nodules in my one lung and one nodule in another lung. Thankfully, I'm getting scanned. Nothing has changed, but that even further drove home the point for me to try and get involved, especially now that I'm retired, after seeing when a classmate of mine was on the first-in engine. He was a pump operator. He ended up having a lung issue and a disability. And so from that, that's why I've kind of, like, been trying to spearhead the Western New York part of this National Firefighter Registry for Cancer.

Hajar: Yeah, so let's talk about that. What is the National Firefighter Registry?

Mark: So in 2018, there was a Cancer Act through Congress, and in April of 2023, they opened up the National Firefighter Registry for Cancer. It's a free program. It's open to any active or retired career or volunteer firefighter. You do not have to have cancer to register for it. In fact, it's probably beneficial that you register very early in your career, so
unfortunately, if you do develop it... The main goals are, like, cancer awareness, prevention, and they're really looking to study data over time to see any of these trends that go on. It just looks for a yearly average
response to structure fires, car fires, rubbish, wildland, hazardous materials, any airport or things like that. From that, they're just gonna take the data and try and utilize it or find out why firefighters are getting sick, certain kinds of cancers that they're getting, the timeframes in their career, the level of exposures. According to the National Firefighter Registry for Cancer's website, the most common self-reported cancers are skin melanoma, prostate, thyroid, kidney, testicular, colorectal, non-Hodgkin's lymphoma, bladder, and breast.

Dr. Reid: We want our hands on all the responders from those fires because we know risk of cancer is really elevated in that group.

Hajar (Narration): Mary Reid is the chief of cancer screening and survivorship at Roswell Park.

Dr. Reid: The scientific evidence that being a firefighter is related to cancer, it is not a question. It is an occupation where people who are professional firefighters especially, who have more exposures, have increased risk of cancer, solid tumors, some lymphoma, myeloma, over the general population. And we don't need to prove that. It's proven. And just the awareness of cancer susceptibility in the Buffalo Fire Department has really encouraged them to get better care earlier for melanoma, which is from the skin contamination. We offer screenings with lung cancer screening. It's really to get them mobilized so that they don't put off, you know... The hardest statistic among firefighters for me is that the main cause of death among retired firefighters is cancer. It's not heart attacks. It used to be, but now it's cancer. So you do your career, you do all this public service, you get exposed, and then you retire and you get cancer. And so screening among that group is super important. One of the issues is getting the guidelines that we follow to be
adapted to people with occupational exposures, like firefighting.

Hajar (Narration): Even now, there still aren't super clear or standardized national or international guidelines for cancer screening in firefighters. The research into their unique cancer risks is relatively new, and many screening recommendations aren't that different from those for the general public, despite the fact that firefighters have repeated exposure to carcinogens on the job.

Ashley: Yeah. Generally, right now where we stand, there's not a lot of regulations outside of what NCI and NCCN, the National Comprehensive Cancer Network guidelines, are for firefighters, which is a huge reason we try to do some of this research. Because what we'd like to say is that firefighters really should be screened at a younger age, maybe a different frequency. But it's hard to change a national guideline around that without some scientific evidence.
Hajar (Narration): Ashley Snowden is the executive director of physician and external partner engagement at Roswell Park. A big part of her work focuses on helping first responders better understand the research being done about their cancer risk and implementing some of the best practices being recommended.

Ashley: I know for women, there was a study out of San Francisco. Female firefighters are about 44% higher risk of getting breast cancer than the general population. So should they be getting mammograms earlier? Definitely. But, you know, we need to put that science to work so that we can start changing the guidelines. This research is really only about 10 years old, which in the world of cancer research is very young, not a lot of time. So we're learning still as we go, kind of what the contributing factors are.

Hajar (Narration): The link between firefighting and cancer was always there, but it wasn't really until 9/11 that research funding and resources were directed toward understanding the risks more clearly and figuring out what could be done about them.

Ashley: You know, 9/11 was this giant, really big, caustic event. It really is similar to that of the exposures of a 20-year career firefighter, because you're looking at a really concentrated group of people that responded and a concentrated group of people with these specific cancer diagnoses. So I think that research and that event really kind of pushed...
I know it pushed national firefighter cancer research ahead. But I think that created the awareness because that happened in kind of a vacuum, you know, where there's so many cases among these specific people that it was really hard not to correlate that. Like, people around the pile were getting thyroid cancer, but people that were on the pile were getting this type of cancer, and they were really able to kind of pinpoint those types of diagnoses to what their exposures were. And I think that really
helped move all of first responder research in the right direction.

Mark: The sad thing is, of 50 states, there's 50 different sets of what they call presumptive laws. So there's limitations involved to that. So when you have good studies like they're doing here at Roswell, things through the National Firefighter Registry for Cancer, trying to prove that this is a noble calling, but it can make you sick.

Hajar: What do you miss the most about it?

Mark: The kitchen table. So every firehouse has a kitchen table. Everyone has equal playing... it's a level playing field, is a good way of putting it, meaning that there is a certain amount of busting chops in there. But the camaraderie between the men and women and the dedication that they have, there's nothing more intimate than sitting down and sharing a meal together, going over things, solving the world's problems, leaning on each other.

Ashley: I can confidently say, as an outsider, sort of a quasi-insider now, it's a family. I mean, the fire service is truly a family. I've worked in healthcare for 20 years now in a corporate setting, academic hospital setting, and until I really worked within the fire service, I didn't understand kind of the culture. It really truly is a family, and it's very unique to other patients.
Mark: Any kind of a call that you train and prepare for and you go to that has a successful outcome, whether it's a medical run or a fire or a car accident, or anytime you can truly save somebody's life, you're making a difference. You're showing up on the worst day and, you know, nobody's looking for a pat on the back or any of this other stuff, but just to know that you had such a positive impact on somebody's life, it's very
rewarding.

Hajar: So does the research show that cancer in this population is rising, or is it just that the awareness is higher so we're catching it more? And if it is rising, why? Has that been studied?

Ashley: It has, in small pockets. I can't really quote what those numbers are, but 9% higher risk for all firefighters for cancer. Different cancers are higher. 9% overall is the number for all firefighters. But if you think about what houses are made of now versus what houses were made of, you know, in the '70s, it was more straight wood. There was a lot of lead, though, back then, and heavy metals. The composition has changed, and I think that's definitely led to different types of cancer diagnoses.

Mark: And also the things that are inside people's homes. So they talk about legacy materials. So couches or chairs were made out of real wood and probably cotton or natural fabrics. Now you've flipped a switch. There's a lot more electronics. Those are all plastics and polycarbs, leather, you know, the way that couches and chairs are made of non-natural materials. So again, those things catch fire, and they're off-gassing multiple carcinogens.
Hajar: It's interesting to think that, you know, a lot of people
were getting sick back then, but no one really thought, "Okay, it seems cancer is higher in this population, so let's try to make some changes."

Mark: So I think it was just an accepted practice. Like now, with a lot of the research and our partnership, maybe they didn't think it was related to the job, or it was just accepted risk of the job. You know, you're a firefighter, you're gonna breathe in smoke and you're gonna get sick and you're gonna, you know, develop cancer. I mean, the sad thing is there's people that I served with that their fathers were on the job. There was one house in particular on the Upper West Side. It used to go to a lot of garbage dump fires. I think there was, like, a garbage incinerator at Unity Island, and they were exposed to any myriad number of unknown chemicals and things, and there was a handful of firefighters from there that then ended up getting sick. Sadly, they kind of connect the dots
later on.

Hajar (Narration): Because of the nature of the job, firefighting has always carried a risk of cancer, and it likely always will. But with the increase in research after 9/11, Roswell Park and other programs around the country are now focused on educating both first responders and policymakers in two key areas. The first is making sure every firefighter is screened for, at the very least, melanoma and lung cancer.

Ashley: That's kind of how we started working on this program. We really wanted to get members of the fire department to start thinking about preventative health and screening more so than just being reactive after a symptom presents or a diagnosis. So back then, it was just me and one of the union members going around to all the firehouses and waking them up from naps at lunchtime. It was a really tough sell in the beginning, but once we started to get some traction with the Buffalo Fire
Department, they were our very first and, you know, our strongest partner. It really started to kind of grow, and we were able to screen the entire department.

Hajar: So you said that it was a tough sell at first. I'm wondering, why do you think it was a tough sell? What is the resistance?

Ashley: Have you ever met a firefighter?

Hajar: Yes.

Ashley: I think it was really, and Mark can speak to this as well, I think it's a very difficult population. I mean, you're thinking about these men and women who are risking their lives every day and running into burning buildings and saving people, and really, to think about going to the doctor wasn't on the top of the priority list. So it was a really tough sell, meaning to try to get them to think about themselves and their own health when their mindset is really community-focused.

Mark: I think the fire service in general, or any first responder, does a good job at taking care of other people, especially civilians. And then to have the focus on yourself, unfortunately, we don't take good care of ourselves as much as we should.
Hajar: Is there also, like, a culture of... I used to work at a construction company, and they would do the rigs of HVAC machines and get them in really tough spots, and a lot of our riggers refused to wear the harness, and we would get fined for it, and it became an issue. But it was like,
"Ah, everything's gonna be fine." And it's like, it's not gonna be fine if you're not wearing your harness. So is there, like, a culture of a little bit of machoness around—

Mark: Sure. I think—

Ashley: Salty.

Mark: Yeah. Yes. And so another change that's occurred, when I got hired in the mid-'90s, the old badge of honor was what they called salty or dirty gear. So the dirtier your helmet was, the dirtier your gear was, that made you a better—it was perceived that you were a better, aggressive firefighter. So now the culture has changed, thankfully. You can still be just as aggressive, just as professional, just as much of a hard charger with clean gear. So all that gear that people were wearing all those years, unfortunately, it's off-gassing carcinogens and byproducts of combustion. And, you know, we're driving down the street, and the wind is blowing, and there's all this stuff coming off of the gear inside the rig as you're going to a call. You're breathing all that stuff in. Your skin is absorbing all these carcinogens. So thankfully, the tide is changing. A lot of that misguided view of things back then is now changing.
Hajar (Narration): And that's the other major area this research
is pushing to change: firefighter gear. What does firefighter gear look like? Can you, like, break it down?

Mark: Sure. The gear itself weighs anywhere from 60 to 80 pounds, including the air tank that you're given. You're gonna have steel-toed rubber boots. You're gonna have a set of turnout pants that have two liners with suspenders, a coat that also has two liners. You're gonna have a Nomex hood that gets put on. That's to protect around your face that's left exposed from your air mask, your ears, your neck. You'll wear an air mask. So the self-contained breathing apparatus weighs 35 to 40 pounds. We bring the air in to fight the fire. In addition, you're gonna wear a helmet and gloves. So between that 60 to 80 pounds, then we'll bring another 10 to 20 pounds of equipment that we carry and use.

Hajar (Narration): So the gear is doing a lot. It has to be relatively lightweight, and "relatively" is doing a lot of work here. But it has to also be protective and durable and sturdy enough to withstand extreme conditions over and over. And any major overhaul of the gear or the standards around it would be expensive and would require strong evidence to justify that kind of large-scale change.

Mark: Better data drives better legislation, which drives better funding, which comes into real changes, like you mentioned about gear. So one of the main goals of the National Firefighter Registry for Cancer is to improve firefighter gear. In 2028, I think there's legislation that it's gonna be law that firefighters' gear has to be PFAS-free. I know that's another known carcinogen. That's another step in the right direction.

Ashley: That's the irony of the gear, is it's full of forever chemicals that are carcinogens, but it's built to protect them from fire. But at the same time, there are a few studies and groups in Australia that are piloting gear with no PFAS in it, but it hasn't made it this far yet. But hopefully by 2028 we'll have some new technology.

Mark: And I was at a health and wellness conference a few weeks ago from New York State. There was a gentleman that presented that talked about PFAS-free gear, and the downside to it is it doesn't last as long. So this is another cost, unfortunately, that municipalities or departments are gonna have to incur or plan for or budget for. But the good side of that is hopefully it's not gonna make their members sick.

Hajar (Narration): So making changes to the gear is a part of it. Another part of it is making changes to how the gear is taken care of during and after fires, decontamination.

Mark: So decontamination could involve a number of processes. Most would be to brush off the gear, use soap and water if it's—as long as it's not water reactive. They have wipes now for your neck and face area, uh, areas that are susceptible when your pores are open and you're sweating. So they have wipes to decontaminate that way. There's a shower within the hour. So you go back to the fire station, you take a shower. The gear gets decontaminated. It should be washed whenever necessary. At a minimum, I believe it's six weeks, don't quote me. But there is a time period involved, or if you went to some type of an incident that required decontamination.

Hajar: This might be so ignorant, but, like, do they take it home and just throw it in the washing machine? Or, like, what's the—

Mark: No, so there's, um... it's a special process. There's special machines, there's special soaps that are used, there's special ways to dry it. So that's another good culture change that's occurred in the last, you know, 20 or 30 years. They're trying, even larger municipalities with more money, they're talking about, like, a clean/dirty concept or, you know, a hot, warm, and cold zones in firehouses. So where you park the
apparatus or the firetrucks, engines or ladders, that's like the dirty area, and your gear would stay out there. But then you go ahead and make sure that it's decontaminated on the scene before you even bring it back to the firehouse, or reduce the amount of contaminants. And then from that, there's a way to doff it, take it off, and go ahead and change out your uniform and things of that nature, get a shower. When you take your gear, and if you're assigned at one station, you might have to go work at
another station, there's gear bags that you can actually put it in so that, again, you're not putting your family or yourself at undue risk.

Hajar: Is there a time spent fighting fires, like after a certain amount of years, do the studies show that there's a spike anywhere in the timeline?

Dr. Reid: So there's a few things in terms of their exposure on the work. The number of years that they're in service, the number of fires that they respond to, the number of household fires versus industrial fires that they respond to, and then there's certain fires that are designated to have had more contamination. You know, so the longer they're responding to
fires, the more their exposure. And that kind—the cancers that arise from these types of exposure are really about the dose of exposure and the duration of exposure. 'Cause, you know, firefighters are getting older, too, and their ability to repair the cells that are damaged from those exposures and things like that change over time. And usually, you know, if you've worked 23 years, and you did hazmat, and you did all these big, bad fires, uh, it obviously increases your risk.

Mark: Yeah, and I think the sad thing is that you could have a 20- or 30-year career and maybe not have a great amount of exposures, and you could be new on the job in your first fire—mm-hmm—and go to something that's just very harmful or, or have, you know, some kind of an acute exposure, and you could get sick or, you know, you could pass away.

Hajar: Do firefighters amongst each other, or even in their own mind, think about cancer risk often? Like, what are people saying? How are they talking about it? Are they thinking about it, or is it just a thing that happens in the—

Mark: Last—it's definitely in the forefront. Yeah. And, and unfortunately, when you have a cancer death, that kind of brings it to the forefront. They should be thinking about it. I mean, again, it's a culture change. I think it's, there's a lot better practices now than there ever was. Mm. So it's definitely trending in the right direction. But I think that because it is
such a calling and a passion for people of taking care of others, so the flip side to that is, uh, with the registry, that's a way for us to start taking care of ourselves. It might be longer term, but again, the only way that we're gonna affect necessary change is through data, which drives legislation, which drives funding, which is like actual boots-on-the-ground money for troops and people that are out there.

[Credits Music]

Thanks for listening to Smarter Than Cancer, a production of
Roswell Park Comprehensive Cancer Center.
The show is written and produced by your hosts, Hajar Eldaas and
David Hoffman.
Production Oversight by Peter Soscia.
Additional logistics and support from Michelle Eisenstein.
Our production partner for the series is CitizenRacecar.
Post-production by Gregory Schweitzer for DCP Entertainment.
Publication and Promotion supervised by Candice Chantalou.
If you or your loved one has been diagnosed with cancer and
would like to schedule an appointment with Roswell Park, please
call 1-800-ROSWELL. That's 1-800-R-O-S-W-E-L-L, or visit us at
roswellpark.org.
If you're enjoying this series, we would love to hear from you.
Please reach out and tell us about your cancer story and let us
know what topics you'd like us to cover in future episodes by
filling out the form at roswellpark.org/smarterthancancer.
And if you know someone else who might find value in what we're
doing, please tell them about it. You can listen and subscribe
wherever you get your podcasts.

David: OK, Hajar, for today's episode. I really want to introduce you to a new friend of mine.
Hajar: Ooh, sounds fun.
David: His name is EDDY, and he's really cool.
Hajar: Okay, tell me about him.
David: Well, he's… big. He's like, really big.
Hajar: Oh my God, David. Now, is that a nice thing to say?
David: Well, yeah, I mean, no, he… he's big, but he… he gets around really well. And he's really good at his job.
This is Smarter Than Cancer, by the way. And I'm David Hoffman. Hajar: And I'm Hajar Eldaas. So you interviewed Eddie?
David: No, he can't talk.
Hajar: Eddie can't Talk.
David: You see, EDDY is a truck.
Hajar: Okay, a truck.
David: He's a really nice truck though, and he does a lot of good in his community.
Hajar: I see.
David: So you want to meet him?
Hajar: Sure – let's meet your friend, the truck. (Opening Music)
(In the field)
David: So I was… I was picturing like, oh, I don't know, like a bookmobile. And this is like a semi truck. This is a huge… it's a huge operation.
Medina: It's massive. You need a semi truck to tow it outta here.
So, we're not too chilly, but…
(Door opens and closes)
David: So we just stepped into this giant blue, like, I don't even know what the right word is… like, truck container?
Medina: Trailer…
David: Trailer, yeah.
Medina: …if you wanna call it that
David: Yeah, like back end of a semi truck. It's huge. And I'm standing in here and there's… that's a full-on CT machine?
Medina: Yes, it is. State of the art, installed in ‘22 and manufactured in 2022. So it's very high-end.
David: That's Luke Medina. He's a patient navigator in the Community Outreach Department here at Roswell Park, and he's part of the team that travels in this giant mobile radiology lab, which everyone calls EDDY — E.D.D.Y — short for Early Detection Driven to You. He was kind enough to give me a tour.
David: You walk in the door, you walk up the side, and then you walk into sort of an office with a bunch of computer stations.
Medina: Right?
David: And I guess this is where you and your colleagues work and get people welcomed in and…
Medina: Yes. So this is like the control center. This is where the tech operates the machine and gets the images ready. And these other workstations are for our PAs and our nurses.
David: And to the left is that room with the CT scanner, and… amazing, really. It just looks like something out of the most high-tech hospital you've ever been in. And then these walls, these amazing, um… It's, sort of, murals. It looks like a…
Medina: Brightens up the vibe a little bit.
David: … looks like the coast of, oh, I don't know, California or something. Doesn't look like Buffalo.
Medina: Not at all.
David: This is nice!
Medina: (Laughs)
McNulty: It's a 53 foot trailer. It's very large.
David: That's Alyssa McNulty, Director of Community Outreach and Engagement.
McNulty: We've been to 52 different unique locations with that mobile trailer, which is wonderful because there's a lot of places in New York, especially Western New York, where folks have to travel at least an hour to get to their nearest CT scanner. So we're able to bring low-dose CT scans to people outside of their front doors.
David: So why is this so important?
McNulty: It's important because a lot of people in our area just don't have access to these screening tests. They don't have
transportation. Maybe they're scared. And you know, Roswell always says, “spend one day with us”, and with these mobile units, we're able to go spend a day with you, in your community. So we're bringing it to places that people are comfortable, where we feel more approachable. You don't have to walk into a hospital. So there's just so many benefits to taking it out of the main hospital.
The goal of screening is to find cancer early, when it's more treatable. And when we're able to do that, the treatment is much more successful
David: This EDDY, the EDDY I met, uses his low-dose CT scanner specifically to screen for lung cancer. This is a relatively new idea. It became recommended by the CDC less than 15 years ago, and many people still don't know it's an option. There are a lot of people who are eligible for this screening, and who might have their lives saved by catching lung cancer early, but who just don't know to get it done.
McNulty: Lung cancer screening is very different from breast cancer screening, colorectal cancer screening. You hear about breast cancer for the whole month of October, we turn the month pink. Colorectal cancer, you see commercials for Cologuard. But lung cancer screening’s different
David: It's also different because there's a certain stigma attached to lung cancer that doesn't come with other cancers. Because it's so closely tied in the popular consciousness to smoking, some people tend to be less sympathetic to hearing about this diagnosis. There's this terrible idea that when people get it, it's kind of their own fault; they should have made better choices.
McNulty: People blame themselves. And so I want to do a lot of work to take the stigma out of it and remind people that even if you're still smoking, you don't have to quit, but you could still come get screened. We're happy to help you quit if you want to quit, but you should still come get screened, and not worry about blaming yourself if you do have a finding.
Lung cancer is the number one cancer killer in our area. So just because you think less people are smoking, people are still dying from lung cancer, and EDDY and other lung cancer screening programs can do a lot of work to make that difference and take that mortality rate down by finding cancers early when they're more treatable.
David: And that speaks to the fact that it's not just a disease of smokers, yeah?
McNulty: Yeah, absolutely. Lung cancer is still a problem regardless of smoking. And again, like I said, nobody who smokes should blame themselves for the cancer. No one deserves to have lung cancer. This program is available to you. Screening is available to you. Everyone deserves to get screened and find something early so that it's more treatable.
David: And you said You travel kind of far with these? All over Western New York and…
McNulty: Yeah, we've all over Western New York. We've actually been as far as Binghamton, New York, which is about a three hour drive from Buffalo.
David: Wow!
McNulty: We've parked in primary care offices; we've found a few physicians in our western New York area who are really champions for lung cancer screening.
And we've been invited by Senators and different Congresspeople to park at their offices and screen people from their districts. We've also parked at churches; we do a lot of faith-based outreach. We've also parked at just grassroots community-based organizations.
I participate in a lot of health coalitions across the area, for health equity and things like that. And so people from those groups will call me and say, “hey, I have this…”, you know, “…turkey giveaway…”, for example, “…happening in my community.
Do you wanna park the unit while people are coming through to get their turkeys? They could also talk to you about lung cancer screening.” So there's a lot of different ways that we engage with the community.
Roswell Park has an existing partnership with our first responders in the area. A lot of it stemmed from cancer diagnoses and findings after the 9-11 attacks in New York City, You know, a lot of first responders from Western New York were called down to New York City, and then were having follow up care and having cancer findings. So Roswell Park did a lot of work to develop a kind of a first responder screening program. So when we launched EDDY Lung, we saw an opportunity to work with our firefighters in the Buffalo Fire Department.
The standard in fire departments is an annual chest x-ray to look for anything that might be going on, but a low-dose CT scan is much better in terms of what we can see and treat from. And so we were able to work with our Mayor, so our local government, and the Buffalo Fire Department to make plans for baseline scans for all of the Fire Department, which is really a new thing, countrywide, nationwide. So we scanned about 750 firefighters
Overall, we've scanned almost 3000 people from 120 different zip codes.
David: Wow.
McNulty: Yes. Thousands of people.
David: That's amazing.
Medina: It’s great. It's really good that doctors are getting to people with that history of smoking and, you know, letting them know that it's an important thing to do, to get scanned for lung cancer.
Back in the day, it wasn't really like that. Now it's kind of… it's taught that it's something you do. You know, like, as you get older with age, you have your, you know, regular screenings,
like colonoscopy, prostate exam, mammogram, and this is kind of being included as something that has to kind of be a box that's checked.
David: If I were coming in now for a screening, what would happen? What would be the steps? What would I do?
Medina: Well, you don't have to do too much. It's pretty straightforward. If we had already identified you and gotten your, you know, history and age and everything like that, you just walk up through the door, you come talk to our physician's assistant — takes about, like, three minutes — and then they fire up the scanner and get it ready to go. You know, you lay down, and it takes about a minute for you to go through over here. You don't have to go through too much at all, so…
David: Wow. Oh, that's so funny. 'cause I know a lot of people do get, like, CAT scans and MRIs confused, where it like takes 20 minutes and you have to listen to it, you know, in a tube. This is a very quick.
Medina: Yes.
David: Easy thing to do.
Medina: Very quick.
David: Yeah.
Medina: Very quick. Don't have to plan your day around it or anything like that. So…
David: And then as a navigator, are you the person who's following up with someone when you get the results, and maybe helping them work through what next steps might be?
Medina: Yeah, well, we kind of help them understand what their care plan may be. We kind of like try to make things more clearer, cut down jargon, put it into, like, simple terms what's going on, and, um. Okay, if they may need, like, some additional
support, the main role is to make that line of communication more clear between the patient and the doctor and also make sure that their access to care is as streamlined as possible.
David: Here's Nikia Clark Robinson, who also serves as director of Community Outreach and Engagement here at Roswell Park.
Clark-Robinson: You know, I think everybody, at a baseline level, they know certain things that they need to do to be healthier. They know of cancer. But sometimes, just to get a person in to get screened or, kind of, move them to action, either being a healthier behavioral lifestyle to lower cancer risk, or to get screened, they need some help. They need some resources. Navigating the medical system is challenging; it is not easy. Sometimes we know that… things that we should do for ourselves, we put to last. You know, it's hard to think about changing some health behavior habits, you know, even getting screened.
People still have fear, you know? “What if that screening comes back positive for cancer? What do I do then? What's next? I really can't take that on with where my life is at right now. So I'd…”
David: Like if it wouldn't be there if you didn't know about it,
Clark-Robinson: Right? Like if I don't talk about it, if I don't… I don't have to deal with it. It's not really there.So it's working through all of that and always making healthcare accessible and easy.
We find that people really get stuck with knowing what the next step is. And you just need a gentle… A push, sometimes a reminder, or somebody just to hold your hand through the whole process. And that's what we provide.
You know, people, for no fault of their own, may not seek it out for themselves. It's scary and it's hard. So we're there to help.
David: And now, as of just before the recording of this episode, the EDDY I met is just one of two EDDYs that are going to be crisscrossing the area. The second one's screening for different kinds of cancer.
Clark-Robinson: The second Eddie, which we had a ribbon-cutting for, is for breast cancer screening and prostate cancer screening. It serves both. It's a dual kind of cancer screening mobile unit.
McNulty: So the way that we built the breast and prostate unit was in the vision of, like, a husband and wife being able to show up to get screened together. So when you walk on that unit, to the right is our prostate suite, and to the left is our breast cancer screening suite. The prostate test is just a quick blood test for PSA, and then the mammogram is what we use for breast cancer screening.
Outreach with those two groups is just this extra layer of support that I think is gonna make the program even more successful. And I think — I hope — that the higher acceptance of breast cancer screening… as I said before, you know, it's a… I don't wanna say it's easy, but it's a more accepted type of cancer screening than lung cancer screening. I hope that now with EDDY 2, people will see us out for breast and prostate screening, but also say, “oh, there's that other one for lung.” And so I hope that kind of synergy between the two is going to just help both programs grow.
Clark-Robinson: I want to see that everybody that is eligible to be screened, screened. So when we look at the Western New York, you're… and even like starting in Erie County, those screening rates, and look at the data of the people that have been screened, it just, you know, blows our socks off. We see, you know, something that we wouldn't even have expected.
I want EDDY to be a household name, you know? And when people think about EDDY, they think about easy access, not challenging, the process was actually enjoyable.
McNulty: I do this work because I think everyone deserves healthcare that is as convenient as possible for them. There's so much of our healthcare system that's really, really difficult to navigate. And since I've been at Roswell Park, I have done patient navigation to try to break down barriers in the healthcare system. And when you combine that with cancer screening — which is something relatively simple that can save a person's life, just by talking to them about it, maybe they don't know about it — I just think it's something so impactful that I can do with my time as a professional.
(Closing Credits)

Hajar: You know, David, when we first started working on this series, I knew pretty quickly that I wanted to devote at least one episode to young adult cancer.
David: Totally. It’s something we both really wanted to get into.
Hajar: Yeah, and honestly, for me, it was kind of for selfish reasons. I fall into that young adult age range when we’re talking about cancer, which, by the way, is 15 to 39, a huge range. But I just kept hearing about more and more people being diagnosed with things like breast cancer or colon cancer at ages that felt really young to me.
David: Yeah, and doctors don’t totally know why that’s happening yet, right?
Hajar: Yeah. There’s a lot of research going on, and we do know some things. We’re actually going to dig more into the science behind young adult cancer in another episode.

By the way, this is Smarter Than Cancer, and I’m Hajar Eldaas.
David: And I’m David Hoffman.
Hajar: But David, for this episode, we’re really interested in what it actually feels like to be diagnosed at this point in your life. What makes going through cancer in your teens or your twenties or thirties even different from being diagnosed later on?
And so to find out more, I spoke with Cameron Colon, who’s a nurse here at Roswell Park and who was also diagnosed as a young adult herself. And David, you talked with Dr. Denise Rokitka, who directs the Young Adult and Oncofertility program here.
David: Yeah and talking to her, I really got a sense that it’s not just the illness, it’s the timing and how everything in your life seems to be all colliding at once.
Hajar: Right? And between the two of them, I think we started to understand how a diagnosis at this stage can really shift your plans in a way that’s different than a diagnosis in older age. At this early stage in life, you have your career ahead of you, fertility planning, relationships, you know, all these big life things that are still kind of all in motion.
Um…so why don’t we just get into this episode then?
David: Let’s do it.
[Theme Music]
Hajar (Narrator): Here’s Cameron, a registered nurse here at Roswell Park.
Cameron: I’m 27. I was diagnosed when I was 26. I went to my annual GYN appointment, and they did a breast exam. And she said, you have a pretty large mass on your left breast. Have you noticed that? And I was like, no. So two days later, I got an ultrasound. Two days after that, I got a biopsy, and then the following Monday, I was diagnosed with breast cancer.
Hajar: Wow. And you weren’t feeling any, like, symptoms or anything like that?
Cameron: Thinking back at it…so I was diagnosed at the end of April, and in January, when I went to my primary doctor, I was like, you know, I’ve been really tired. My acne has been really bad. I said, as silly as it sounds, I saw a TikTok that said, if you have high cortisol, these can be your symptoms. And I was like, I’m checking off a lot of the boxes, could I get my hormone levels checked? And she said, pretty hard to check hormone levels in women because of our menstrual cycles. So she checked my thyroid panel. That all checked out, and then a few months later, they felt the mass.
I probably should have pushed more when I met with my doctor in January. She tried, but they were such general symptoms that I didn’t push for more because I was like, it’s winter. Maybe I’m just fatigued from that. But looking back, like, I was sleeping 12-plus hours a day. I’d wake up, feed the dogs, go back to sleep, wake up, eat lunch, go back to sleep. Like, I couldn’t function. That should have been more of a red flag for me.
Hajar: You’re so young that that’s probably not a diagnosis you were expecting.
Cameron: I was devastated at first. I got the phone call. I cried in my sister’s arms. I went and told my fiancé, my now fiancé, cried in his arms, went to a couple appointments. And after getting my PET scan results, the doctor told me that it was stage four because it had metastasized to my sternum, and I cried more. And she said, but I think you are, you’re young, you’re healthy. I think you’re gonna respond really well to treatment, so we’re gonna treat you like you’re stage two and we’re gonna aim for curative intent.
And after that, it kind of all mellowed out, and I’ve been using humor a lot to cope and sharing my story. I’ve been very open about everything. There’s hard days, of course. There are days when it’s hard. My fiancé and I have been together for, um, seven years now, and we got engaged in November. Being diagnosed with cancer put a hold on getting engaged cause he wanted to propose, and then I got diagnosed. And he said, do you want, do you care if you, like, have your hair when we get engaged? Like, it just put a hold on everything. I said, let’s wait until I’m through treatment.
Rokitka: Colon cancer in particular is increasing. Breast cancer is increasing. Some of it is detection, right? So our techniques to detect breast cancer, mammograms, are better. So some of it’s that. Some of it is probably our diet, probably environmental factors that we don’t totally know. I don’t think we entirely know.
Hajar (Narrator): By the time a patient gets to Dr. Denise Rokitka, they’ve already been diagnosed and have already set their treatment plan. So when they see her, it’s really more about how they’re doing emotionally and psychologically, and figuring out what kind of support they need to manage.
David: I mean, a cancer diagnosis is always a sensitive thing. How do you approach someone, you know, who’s 30 in a different way than you would someone who’s 75?
Rokitka: Yeah. I do have a quality-of-life grant for a young adult psychologist who helps patients.
David: Oh, amazing!
Rokitka: Um, so we talk about emotions, but we also talk about career planning. You know, do you need help with any FMLA paperwork? Do you need help with talking to a school? Our psychologist will sometimes do that, talk to the college, make them understand. Cause some colleges are great and some are not.

So we talk a lot about that sort of stuff. Um, physical, you know, are you having any pain? Are there any physical symptoms we can help with? We have an acupuncturist here and an integrative medicine service.
Hajar (Narrator): The National Cancer Institute defines young adult cancer as a cancer diagnosed between the ages of 15 and 39, which is a huge age range. People in those years are at vastly different stages of their life. But as a whole, it’s a time marked by instability and major life transitions.
Rokitka: So we find that the young adults struggle somewhat in things like financial toxicity, family planning, you know, some patients are transitioning from college to careers and trying to manage working, paying their bills, life. But also sometimes the cancer diagnosis really puts a pause on all of those things and can make it really difficult.
And then emotionally, young adults really struggle with many of the things that probably everyone struggles with, but maybe in a different way, right? So things like, “Why me? Why now?” It’s rare, right? So only 90,000 patients in the young adult years are diagnosed each year. That number is increasing over the last decade. So it’s not a huge number, we know that there are millions diagnosed with cancer over 40. And so that’s tricky in terms of community and support.
David: It feels like the unseen group, right? Cause we think of grandpa getting cancer.
Rokitka: Yeah.
David: And we don’t think of someone who’s 25, 30, 35 getting it. So it must be a shock. People aren’t expecting this, right?
Rokitka: Right. No, young adults don’t expect that diagnosis. They often have delayed diagnosis for various reasons. Sometimes it’s access to care, insurance issues. But also it’s, “I’m young and I’m healthy and this can’t be that. It can’t be something serious. It can’t be cancer.”
In terms of delayed diagnosis, we know it’s important to keep pushing. If your primary doctor is brushing your symptoms off and you don’t feel right, keep pushing because maybe something really is wrong.
David: Talk about that a little more, about the difficulty of getting a diagnosis.
Rokitka: Yeah. Particularly in the twenties, probably less so in our thirties, but, um, patients often don’t have primary care doctors, so they tend to seek providers through urgent care or emergency rooms, so they don’t have consistency of one person seeing them for those symptoms.
But we also know that providers themselves, because cancer is rare in our twenties and thirties, they sometimes are like, okay, well, that’s probably just a cold, or that’s just stress, you know? Um, we don’t need to do blood work at this time. So things like that where there’s just a little bit of a pushback, I think, particularly in this age group.
David: In fairness, it probably is a cold, right? Like, in most, in the vast majority—
Rokitka: In most of the times, yeah. Nine times out of 10, it’s gonna be just a cold. Like, yeah, for sure.
David: Are there medical differences in terms of treating a younger person versus an older person?
Rokitka: I think there’s definite considerations in terms of planning for cancer treatment and therapy, right? So if you know that a person is young and still has goals to have children, is there ways to protect the ovaries, protect the uterus? Is there chemo that maybe works as well but doesn’t have some of the other long-term side effects that are important to also think about moving forward with a young adult that may be different from somebody in their fifties or sixties?
David: Well, that’s interesting. Yeah. If something might have an effect—
Rokitka: Different.
David: —20 years from now.
Rokitka: Right.
David: If you’re 80, that’s not such a concern.
Rokitka: Right.
David: But if you’re 30, that’s a big concern.
Hajar (Narrator): Family planning becomes a huge concern for young people going through cancer treatment because treatment can affect fertility. And often, it’s the first time a patient has to confront the question of whether they want children at all.
David: Describe that procedure. What does fertility preservation look like? Does it work?
Rokitka: Yeah. So for females, they usually need hormonal injections for a period of time, 10 to 14 days typically, to stimulate the ovaries to make as many eggs as possible. And then with an ultrasound, the infertility doctor will retrieve the eggs from both ovaries.So that takes about two weeks. And so that’s another tricky timing-wise. Some patients don’t have time, particularly our leukemia and lymphoma patients don’t always have time to go through that before needing to start treatment.
For men, it’s just sperm cryopreservation. So just a sperm sample that’s frozen. Yeah, but insurance doesn’t cover it. So I do have a quality-of-life grant to help offset that cost based on financial need. Financial need shouldn’t preclude you from having a family later in life.
David: Yeah, you know, you’ve just gotten this news. You’re worried, like, is my life over? Am I gonna be able to work again? Am I gonna be able to take care of myself? Do I need to…? And then, okay, let’s talk about children that you don’t yet have but might someday. That’s a funny—
Rokitka: Yeah. No, it’s definitely tricky, right? Um, some patients are gung-ho. I’m gonna be great. I’m gonna get through this, and I’m gonna have kids. And some are like, you know what? I just need to start treatment. I can’t think about that right now.
But we know from research that if you don’t at least have that conversation, patients can be very angry.
David: Oh, right!
Rokitka: —about not having the conversation, at least not understanding what their risks are upfront.
David: Yeah. Well, being sterilized is a big deal.
Rokitka: Right. And not knowing until you’re done with treatment and then you’re starting to try to have a family and not knowing until that point is not emotionally okay.
Cameron: My surgeon, Dr. Young, she discussed egg harvesting with me initially because of the effects of chemo on your ovaries and your uterus and everything. It’s a backup plan for now. We will see when the time comes to having children if I can have my own. But she said, you’re young, I think it’s all gonna go smoothly, and you will be able to have your own children. We should harvest eggs just in case.
So I, since my sister was born, she’s three years younger than me, I have known I wanted to be a mom. So that was the hardest part to cope with, that it’s gonna look a little different. I just got engaged in November, and after getting married I was like, oh, just whenever. Like, if we have a kid, we have a kid. And I was excited to be a mom. But now there’s gonna be a lot more planning because I’m on meds that suppress my hormones, so I have to plan when I want to get off of them so that I can have a baby. And then I have to go back on these meds after.
And I had a bilateral mastectomy, so I won’t be able to breastfeed. So the future’s gonna look a lot different than I had always imagined. It took me a long time to cope with all of this in the aspect of becoming a mother.
Hajar: I’m thinking about how lonely you maybe felt. You know, you’re going through this thing at this age where no one, none of your friends, are probably going through it.
Cameron: When I met with my care coordinator, they gave me a card for their young adults with breast cancer group, and she said, yeah, we have a lot of people, like, early thirties. And I was like, okay, but how about mid-twenties? And I went to one group, and I just didn’t feel like I fit in cause I’m, like, they all had kids already and everything, and I was like, I’m at a completely different stage in my life.
David: It just, it’s so much more serious than anything a kid or someone in their twenties usually—
Rokitka: Has to deal with.
David: —has to deal with. Like, I can see that creating social things, cause, like, your friend is like, oh, my boss was really mean to me today.
Rokitka: Mm-hmm.
David: And you’re like, yeah, okay. I might die. It’s a different—
Rokitka: It’s a whole different, yeah, whole different perspective.
David: Yeah.
Rokitka: And some of our survivors will say things like, if, particularly if they know that they’re infertile or their fertility may have been affected, it may take more to get pregnant in the future. How do you share that information? You don’t share it on a first date.
David: Totally. That’s a good question. Yeah.
Rokitka: You know, like, when do you share that information? How do you go about that conversation?
David: Let’s talk about that for a second. Whose business is this? You’re 30 years old. You got a cancer diagnosis. Do you need to tell your coworkers? Do you need to tell your boss? Do you need to tell everyone in your family? What do you think about that?
Rokitka: Some people choose not to, depending on the diagnosis, right? You lose your hair, you look unwell, you may have to say something. But some of these young adult cancer patients don’t… They have a surgery or they go on oral medicine that helps them, but they don’t look any different. But they may have side effects from those medications. They may not feel well every day. They may have fatigue. They may still have nausea.
Yeah, and I think it’s hard. I don’t know how you decide who to tell what, but relationships in particular I think are very tricky.
David: Is this a third-date conversation?
Rokitka: Right? Is it a, I really like you? Maybe we should have this conversation a couple months in. I don’t know. I don’t know. You know, I obviously don’t have a personal perspective on it. I just imagine how difficult that conversation could be.
David: We talk a lot about being cured or being cancer-free, being in remission. What do those things really mean? What does it really mean to be cured of cancer?
Rokitka: Yeah. I think that’s a tricky and sometimes triggering term for people. Um, you know, the NCI defines survivorship as the day you’re diagnosed. But I can tell you a lot of patients don’t feel that way. And, you know, we struggle obviously with those terms too as providers. I usually say remission at least until we’re 10 years from therapy. But that also doesn’t always mean that it’s never gonna come back, or there are other side effects or things that you still have to worry about. So it’s definitely, like, a tricky thing to think about and to define.
Hajar (Narrator): When you’re diagnosed with cancer as a young adult and become cancer-free, you also have a much longer runway in survivorship. And with that comes a longer period of anxiety and a longer list of things to monitor. It can mean spending much of your life tracking your health in ways most people your age never think about. And the truth is, cancer treatment can have long-lasting effects.
Rokitka: It’s therapy dependent. Some therapies have more toxicities long term than others, right? So we know that, like, anthracyclines, for instance, can cause cardiac toxicity later in life. So those patients need more frequent echos and EKGs to monitor their heart.
David: Is that a chemo drug?
Rokitka: Yeah.
David: Uh-huh.
Rokitka: Yeah. In survivorship, we really direct kind of their follow-up care based on what they received, if they had radiation, surgery to whatever part of the body, and really guide our screening recommendations to those specific factors.
We see thyroid cancer as a long-term side effect of breast cancer, so some of our patients start mammograms much earlier than anybody else. That sort of thing.
David: So a second cancer developing after you fought back the first one?
Rokitka: Yeah. So typically, if you look at morbidity and mortality charts, the first thing that’s gonna cause morbidity and mortality is recurrence of their original cancer. That sort of fades away at the 10-year mark, and then we see an increase in pulmonary and cardiac and secondary malignancies as patients age.
David: Do people who have had cancer ever get to the point where they really feel like they don’t have to think about it anymore?
Rokitka: Probably not. I mean, there’s an ease over time, right? We know that patients, when they first finish therapy, the anxiety actually spikes for that first six months to a year. Most cancers are gonna come back within the first couple of years. So there’s some pause and relief the further you get from it, but I don’t know that it ever goes away. I think it changes you.
Hajar: Can I ask, um, where you are on your journey now?
Cameron: I am done with treatment. I completed radiation in January. I rang the bell after the radiation. I get a PET scan in the beginning of July, so we’ll see from there.
Hajar: That’s amazing. Congratulations!
How would you say that the cancer journey changed you?
Cameron: I think maybe a little for me because it’s scary getting diagnosed with stage four cancer, and I kind of opened up more. Like, I was very reserved. I was, I have two dogs, so I’m like, oh, I can’t go out. I have to stay home with the dogs. But now I am much more apt to say yes to plans and making each day count.
When I was in 10th grade, my Uncle Jeff passed away from brain cancer, and his motto was make each day count. And I wanted to adapt that into my own life, but I never really did. I was young, so there wasn’t much to make count. But definitely, like, take every opportunity, make each day count, build good, strong relationships. It has made me put more work into relationships.
[Credits Music]
Thanks for listening to Smarter Than Cancer, a production of Roswell Park Comprehensive Cancer Center.
The show is written and produced by your hosts, Hajar Eldaas and David Hoffman.
Production Oversight by Peter Soscia.
Additional logistics and support from Michelle Eisenstein.
Our production partner for the series is CitizenRacecar.
Post-production by Gregory Schweitzer for DCP Entertainment.
Publication and Promotion supervised by Candice Chantalou.
If you or your loved one has been diagnosed with cancer and would like to schedule an appointment with Roswell Park, please call 1-800-ROSWELL. That's 1-800-R-O-S-W-E-L-L, or visit us at roswellpark.org.
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