Bob Underwood, MD (Host): It's hard to grasp the magnitude of the obstacles cancer survivors can face every day, from physical challenges to emotional roller coasters. Surviving cancer changes lives in ways that can be difficult to fully comprehend.

Welcome to UK HealthCast, a podcast presented by UK HealthCare. I'm your host, Dr. Bob Underwood. And today, we are talking to the Psych Oncology Program Director at Markey Cancer Center, Master of Social Work and Licensed Clinical Social Worker, Joan Scales, about some of the common social, emotional, and mental health impacts survivors endure, turning obstacles into opportunities for growth. Join us as we uncover the robust network of cancer survivorship services within our community that empower survivors to reclaim their lives with dignity and strength. So Joan, thank you for joining us today.

Joan Scales, MSSW, LCSW: Thank you for having me. I'm really excited to be here today.

Host: Yeah, absolutely. So, can you tell us a little bit about what you do as the Psych Oncology Program Director?

Joan Scales, MSSW, LCSW: As you mentioned, I am a Licensed Clinical Social Worker. My role is varied and diverse. My primary objective is just to lead my team. We are social workers, we're patient navigators, and we are dietitians. And we are all kind of trying to get in there and support the patients as they go through this experience of having cancer. If they have nutritional needs, then my dietitians are going to go out there and help identify what they can do to support them. Our navigators and social workers are identifying those barriers to care, providing that support. And as a licensed clinical social worker myself and a couple of other licensed clinical social workers on my team, we're providing that therapeutic support for patients as they grapple with just the ramifications of having cancer, how it impacts their life from a day to day basis to what do I do when I have kids and how do I navigate all of this? So, we just really kind of get out there and do a lot of different things.

Host: That's a phenomenal support structure. I mean, I think it's really great. So, what are some of the more common social impacts that cancer survivors might have to experience?

Joan Scales, MSSW, LCSW: Well, let's say for example, you are in your 40s or 50s and you are also taking care of maybe some elderly parents and you have a diagnosis and maybe you don't have a lot of other family nearby to help you navigate how to continue to care for yourself as well as caring for your parents. So, we have a lot of circumstances in that respect. Also if you have a diagnosis and maybe you have to stop working, so you're having this loss of income, how do we continue to navigate? How do we maintain our health insurance? How do we manage expensive co-pays for medications? And these are all things that my team will kind of do to help continue to support patients as they navigate through this.

From a nutritional standpoint, "I have now a feeding tube and I don't know if my insurance is going to cover, or maybe it doesn't cover all of the supplies and nutrition support that I'm going to need from this feeding tube. What do I need to do?" So, we just really kind of get out there. We talk to our patients and listen to what they've got going on. And we try to find the supports and address those issues so that they can be successful and complete treatment.

Host: So when you talk about all of those things, those kinds of things must also have an emotional or mental health impact. So, how do you help with that?

Joan Scales, MSSW, LCSW: So for me, myself, I am working with patients. I try to schedule some individual time when they've expressed an interest and just how do I deal with all of this? This is so much change. I don't know what I'm doing. I feel like I'm going crazy. I hear that one a lot, because their life is just so upended. So, we bring them into our office. We try to teach some cognitive behavioral therapy skills, right? We're going to be looking at maybe some relaxation activities. We're going to be doing maybe some mindfulness and meditation. We talk a lot about sleep and nutrition and just physical activity and trying to help them support from that emotional perspective.

But also, we're having conversations about end-of-life care or treatment decisions. "How do I navigate six more months of treatment when I've hit that wall and I feel like crud? I don't know what else I can be doing." Or "I have young children and I need to talk to them about my diagnosis and I want them to try to understand that mom or dad are sick and this is what we're trying to manage." How do we have those delicate, serious conversations? So, it can be a number of any of the things that I just mentioned and probably a whole bunch more that I haven't.

Host: Wow. It's phenomenal work, honestly. So, access to care and health equity, very much a part of our awareness in healthcare these days. Are there specific factors that have access or equity of care implications that you work with?

Joan Scales, MSSW, LCSW: I think, especially when we're looking at equity and care, we have to be able to address the barriers that are impacting them so that they can have the ability to get the equitable care. We know our providers are going to be offering the same types of treatments and medications that our patients need, but if you are underinsured or you don't have great insurance and you have expensive co-pays for your medications. And what are the things that we can do to help you kind of manage that so that you can continue to maintain and finish that treatment to have the best outcomes for yourself. So, we try to really get in there to make sure that we're addressing those barriers so that treatment is equitable across regardless of whether you're coming from Eastern Kentucky or right here in Lexington or Western Kentucky, wherever.

Host: Yeah. As a physician, we look at it from the clinical standpoint, the treatment pieces of it and all of these other things are happening around these patients and you're addressing those. So, I think that that's absolutely huge and a need that honestly, we, as doctors don't always recognize fully. So, what services are available in the community that can help support a survivor?

Joan Scales, MSSW, LCSW: Well, we have a lot of organizations that we partner with that are locally based and we work closely with, of course, the American Cancer Society and our Hope Lodge. They provide lodging for patients who are undergoing treatment, at no expense to the patient. So, that's an amazing resource that we utilize frequently.

Our friends from Kentucky Cancer Link provide all kinds of practical and financial support. A lot of our patients experience hair loss or maybe they have some lymphedema, and they're able to get them garments to help with the lymphedema or head coverings to just help you feel a little bit more normal in the day to day of having cancer. So, we've worked a lot with those organizations and really couldn't do a lot of this without them.

Host: What kind of advice would you offer for loved ones who are supporting someone in cancer survivorship?

Joan Scales, MSSW, LCSW: My first bit of advice, of course, I'm a licensed clinical social worker. I'm going to say talk about it. We want to be able to share these experiences and even as a caregiver, what can I do to support you? But also with that, as a caregiver, especially a caregiver who maybe doesn't have a lot of other family or friends to support you through this process, they're kind of like forgotten about. The cancer patient rightfully so is getting all the attention and treatment and things that they need. So, sometimes they get to feeling a little isolated perhaps, and kind of like, "I don't know what my role is right now. Right now, I'm kind of just taking care of my loved one here. And I've had to put everything else on hold that I identify with." And so, we just try to talk to them and support them. So, I think communication is going to be the biggest thing.

But also, asking for help. That's another big piece of what people need to do. And I say that all the time. And it's so hard because many of us are so independent and it's just never fun or easy to ask for help. Personally, I feel like I'm going back to my parents when I was 12 years old, asking for money. And so, we need to ask for help, practical things. You know, if somebody calls you and says, "Hey, what can I do for you?" "Gosh, I'm short of milk and I need a couple of things at the grocery. Can you pick those up for me? I'll send you a list." And then, that person would be willing to follow through with it. We're getting into the springtime weather and grass has to be mowed sometimes twice a week, right? And if you have a big yard and your blood counts are down and the patient themselves is like, "I used to do this all the time and I can't. So now, you're going to have to learn how to do this for me, or is there somebody that can do it for you as well?" So, not being afraid to ask for those difficult things, because I think a lot of times we hear, "Oh, let me know if you need anything, or what can I do for you to help you through this time, asking for those kinds of specific requests."

And then looking for people like myself at any cancer center, whether it's a master's level social worker, a licensed clinical social worker, whatever kind of discipline, navigators, nurses, letting them know that you're experiencing some of these thoughts and feelings. So that way, we can really wrap ourselves around the patient, their loved ones, and just continue to support them.

Host: Really just great useful information. You know, that you often don't think about it because like you said, sometimes the support person is the forgotten one, and they need support too. So, support the supporter, so to speak.

Joan Scales, MSSW, LCSW: There's actually a lot of support programs out there for peer supports. You know, whether you're the patient, who is maybe wanting to speak to somebody of a similar diagnosis and treatment, but there's also some out there for caregivers. So if you're a caregiver and you're taking care of, let's say for example, a blood cancer patient with acute leukemia, and you want to meet somebody else who's been doing that. And you can really kind of form those connections together. So, there's a lot of those kind of support programs for patients, but also for caregivers. So, asking people like myself that question as well when you go to your treatments.

Host: Phenomenal stuff. So, you've got a great event coming up called the Expressions of Courage Event for Markey Cancer Center survivors. So, what can you tell us about that?

Joan Scales, MSSW, LCSW: I'm very excited about this event. This is going to be actually our 10th year of having this event. So, we're really excited. This is an event that is just focusing on cancer survivors and the ability for them to have an outlet to express what happened to them as they went through treatment, basically.

So, what do we see? We see art in all kinds of mediums. It could be paintings, drawings, pottery, whatever it might be. We've had people who've done readings. We've had some dancers, anything that you can do to just come and express what it is that helped get you through your cancer treatment. It's a beautiful event. We've had people write stories and do readings, and we offer also all kinds of information. You can come to the survivor event, and you can find out about our cardio-oncology program or our physical therapy program. Things that will help complement you as a survivor and just kind of help you continue to live that lifestyle to reduce the chances of recurrence and things like that. So, we really just try to armor everybody with information. We are partnering with our integrative medicine team. So, we have like yoga demonstrations, tai chi demonstrations, pet therapy, music therapy. It's just really a grand event and we also have a wonderful speaker coming in this year. Her name is Emily McDowell. She's coming to us from Portland, Oregon. And we're very excited. Emily is a survivor herself and also had a good friend who succumbed to cancer. And she created a series of cards that are just kind of cheeky fun humor about having had cancer. And so, we're really looking forward to having her here with us for this event, and sharing her experiences and hopefully just uplifting our survivors.

Host: Yeah, absolutely. So, the Courage Event is at the Longship Club at the Kroger Field on the University of Kentucky campus, Friday, May 31st, 2024 from 10:30 in the morning until 2:00 p.m. And it sounds like it's going to be a great event. And, you know, the pet therapy dogs are always a favorite.

Joan Scales, MSSW, LCSW: Absolutely. You can't ever resist a warm snuggle.

Host: Yeah, absolutely. All right. Anything else you'd like to share as we kind of close today?

Joan Scales, MSSW, LCSW: I'm just really looking forward to this event. If you're interested in registering, I'd encourage you to go to our UK HealthCare website and search Expressions of Courage, and you'll be able to find it a link at the bottom where you can register. We have about another month of getting registrations together before we have to close the event, because we do have to kind of limit the amount of people that are coming. So if you think you might be interested, please go to our website.

Host: That's awesome. You know, I really think our listeners learned something about the impacts of cancer survivorship. Whether it's for themselves, supporting a loved one, I know I learned a lot. So thanks so much for being here.

Joan Scales, MSSW, LCSW: Well, thank you so much for having me. I can talk about this all day.

Host: And for our listeners, thanks for listening to UK HealthCast, a podcast from UK HealthCare. If you found this podcast helpful, please share it on your social media channels. And for more information, visit ukhealthcare.uky.edu. I'm your host, Dr. Bob Underwood.