Rethinking Physical and Mental Health Throughout the Breast Cancer Journey

Kelly Thomas, a survivor of triple-negative breast cancer, and Emily Beard, patient advocate and oncology nurse, spoke with CURE® about ways care teams can communicate about exercise.

Navigating one’s breast cancer journey, from diagnosis, treatment, survivorship and everywhere in between, can be difficult for patients, but prioritizing physical and mental health may help patients focus on their quality of life.

During a panel discussion at the CURE® Educated Patient® Breast Cancer Summit, Kelly Thomas, a triple-negative breast cancer survivor and patient advocate, and Emily M. Beard, oncology nurse, patient navigator and medical advisory board member for Living Beyond Breast Cancer, discussed how small efforts to improve one’s physical and mental health can make a huge impact on a patient with breast cancer.

Kristie L. Kahl: OK, so I wanted to start it off with Kelly, if you could maybe just briefly tell us about your personal experience with maintaining physical health during your cancer treatment? And were there any specific strategies or exercises that were helpful for you?

Kelly Thomas: To be honest, it was difficult, exercising through breast cancer. I was 33 years old when I was diagnosed with stage 3 triple-negative breast cancer. And going through triple negative breast cancer treatment, exercise was very limiting. Getting up and doing daily tasks were challenging. And so I really had to rethink what exercise was during treatment. And sometimes exercise for me was just getting up off the couch, walking out my front door, getting the mail from the mailbox and coming in.

Kristie L. Kahl: And I think even that simple task — we talked about how exercise is limiting, and we also want to talk about mental wellbeing here. So Emily, how does the physical side that Kelly had just mentioned, and mental wellbeing affect a patient before, during and after a diagnosis? And can you give any specific concerns or challenges that we commonly see?

Emily M. Beard: Sure. Thank you for having us. This is a really important conversation. So I just appreciate the chance to be here. I think it really is everything, I think for the physical and emotional, we often forget about quality of life as we're going through treatment and talking to patients about how we're going to prolong their life, how we're going to affect long-term cure. And we sometimes kind of forget that whole conversation about quality of life. So I'm really happy to be able to talk a little bit about that.

I think from a mental perspective, it's very personal. Some people are immediately in warrior mode and want to just jump in and know everything and get going. And some people are just really overwhelmed. And that anxiety and that kind of shock and fear is the first thing. So I think sometimes just to take a minute and just think, “OK, where am I? What are my resources?” And then make sure that there's a communication that you're comfortable with, with your team so that if there are resources needed for mental health, that those are there because a lot of patients will tell me years into their treatment, they’ll say, I didn’t know I had access to a social worker, I didn’t know I had access to a psych-oncology specialist at my clinic. And those folks are almost always available, but sometimes we just don't think about it when you're first diagnosed. There's so much going on that we're prioritizing care. So I just think, just making sure that, that quality-of-life conversation is happening with your team.

Then from a physical standpoint, again, it's very personal. And I think we all cope differently. And we all exercise — or physical activity looks different for everybody. But I do encourage people to move. If you're already moving, keep moving. If you're already doing an aerobics class or taking walks, keep doing that. If you aren't somebody that is moving, the benefits are great. We have lots of evidence to show that exercise, in particular, is not only good for your mental wellbeing, but actually good to decrease your risk of recurrence. So somebody who is able to be physically active is also doing something proactively to help their long-term wellbeing. That doesn’t mean running a marathon. It means — like you said, Kelly — getting up, or getting out to the mailbox, or taking a walk. Maybe if you have a dog or a child, take a walk with your family. It doesn't have to be a 17-minute mile. It can be a 28-minute mile. No race.

Kelly Thomas: I think that's so important, just to speak on what you just said. When we think about exercise, and when I say exercise, I have a different definition in my head, which everyone in the room may have a different opinion of what exercise was. Before cancer, I was doing HIIT training, high interval. My nurse is telling me I need to be active and exercise while I'm going through treatment, and I'm thinking, “Well, there's no way I could go to the gym right now. There is no way I can run on the treadmill.” And I think maybe we need to change the word “exercise” to just “How are you moving your body today?”

Emily M. Beard: I agree.

Kelly Thomas: Because the goal is to get your heart off of a resting rate. What can you do today to move your body? And what can you do that is enjoyable? I think that's really the secret sauce to finding something that you enjoy with exercise, and it doesn't feel like a chore.

Kristie L. Kahl: This is for both of you. How can the medical community and patient advocates collaborate to ensure that we're bringing this together, and we're making sure we're emphasizing health and wellness, and offering resources so that we don't have a patient who's saying three years in, “I didn't even know I had this?”

Kelly Thomas: I think there just needs to be a flat-out conversation. When I was going through treatment, going to the hospital to get chemotherapy every week, every other week, there was a lot of conversation about how to deal with side effects and how I’m feeling today. But there really wasn't a big health and wellness conversation. I think the conversation needs to be had. And then when you are having the conversation, it needs to be done carefully. I remember going into my breast surgeon’s office, and the nurse there that I would always meet with before I would see my breast surgeon would say, “Are you exercising? You need to be exercising.” So it was like, I'm going through so much right now. I'm exhausted, I can't even empty the dishwasher, and having somebody yell at me because I wasn't exercising. So I think it's really important for medical professionals to go about that conversation very carefully because it's really going to make a mark on that patient, whether they see exercise as a positive or negative. Sit down with the patient, and like I just said before, tell me how you're moving your body lately. And I think between that and you need to be moving your body is not going to work. It’s not going to help anybody.

Emily M. Beard: Agreed. And I would say, too, I think that's such great feedback, and it hurts my heart as a nurse that, that’s the conversation. I never want that to be the case.

I think we really have to be collaborative and meet each other where we are. I speak from experience, I started dancing. I danced as a kid and I loved it. It brought me joy. And when I turned 40, one of my friends said, “What brings you joy?” And I was like, “I wish I had never stopped dancing.” So they were like, “Get back to dancing.” So I'm in a weekly adult hip-hop class, and it's so fun. And I tell patients about that because I want to give permission to people to just get back to whatever it is that you love to do. So I don't do it because I want to perform. I don’t do it because I’m particularly good at it. But it does bring me joy, and it definitely increases my serotonin levels. But I think for patients, especially, it can be a great opportunity for community as well.

There are programs in many communities, through the YMCA and community groups, that we can collaborate, to encourage survivorship. I tell people all the time that tell me, “I’m not a support group person. And I don’t want to go to a support group.” Going to a yoga class modified for survivors is a great way to have a support group experience without having to sit in a circle and go to more traditional groups. [I have] nothing against traditional groups, because I think they can be great, but not everybody feels comfortable in that setting. I have lots of patients who tell me, “I don't go to support groups,” but they're at that Tai Chi class or they’re at that mindfulness class through the cancer support community or the YMCA regularly. So I think that's another way to reframe the conversation and make sure that we're making lots of different opportunities available.

Kristie L. Kahl: Speaking of support groups, I know we've talked a lot about the exercise portion [of this summit]. But even with mental health, we all know — I'm sure — from experience in this room, a cancer diagnosis is overbearing, then you have to deal with treatment and things like that. So the entire process obviously takes a toll on somebody's mental health. What advice do you have for when you're experiencing those challenges, or it's just a bad day or a bad week through the cancer journey?

Kelly Thomas: When I'm having a rough day, I actually make a decision to get on my Peloton. There is just that rush of serotonin that you get after you do a workout. You do genuinely feel so much better. And, as cliche as it is to say, you're never going to regret a workout.

Emily M. Beard: I would say the same thing. For some people, the mental health piece is just taking a break, it's just a rest. Some of us are just go, go, go all the time. So taking that moment to just sit, center yourself and breathe, have a moment of mindfulness.

I also encourage patients to journal, even if they don't have a specific diary, just to sit down and maybe when they need to get their thoughts together, put them down on paper, typing them on the computer, it can be a blog, it can be something no one ever sees. It's not necessarily to share, although sometimes that can also be really helpful. But I think just to have lots of different tools to address those and just to normalize the conversation.

I mean, just having conversations like this today, to just say, in patient care, we need to do a better job of asking the questions, making space for these conversations, so that patients feel comfortable coming forward and saying, “I’m really having a hard time. I’m having a really hard time feeling upbeat or I’m really feeling hopeless.” It's very hard to articulate that. And a lot of times, in my nursing role, I like to be able to say to the patient sometimes and check in, “Hey, how's it going? I'm noticing you just don't see yourself today. What's going on?” Ask about a relationship, because so much of — again, going back to quality of life, it could be that, because of side effects from treatment, you might be having fatigue, you might be having sexual side effects that are affecting your relationship and your wellbeing. And so if you're able to have that conversation with your provider, I think that's a really important, normalizing conversation for us to have. We should always be asking about your quality of life and your symptoms and addressing those. So if that's not a conversation that you're having on a regular basis with your team, then you may want to think about why that is and who on that team you feel comfortable going to, to chat about those issues.

Kristie L. Kahl: I know you mentioned the social worker earlier, and obviously we want to treat the whole person throughout this experience. So how do you collaborate with other health care professionals? And which professionals should patients be asking to see so that way, if our audience wants to learn more about health and wellness at their institution, who should they be asking for?

Emily M. Beard: These days, most programs — every program is different. So I work at a large cancer center with multiple locations. So each location looks a little bit different. But in terms of the team, our patients have access to mental health through our social workers, through the psych-oncologists. We can also refer out, so if we have a patient who's dealing with something specific, somebody who might be having trauma, PTSD from earlier trauma or someone that’s dealing with a relationship issue and maybe does need more intensive sexual therapy with their partner or by themselves. We can make those referrals. Most cancer programs have a survivorship coordinator, someone that maybe has survivorship in their title, it might be a mid-level provider, APP, somebody that’s running the survivorship clinic or it could be the nurse, it could be the chemo nurse if you're still in active treatment. If you're out of treatment and coming back for follow-up, then it may be the oncologist that you're seeing. But I think asking for that is totally appropriate. You can say, “I’m having some difficulty with coping and just curious about what resources are available for survivorship here.”

And then beyond that, we heard from Tigerlily this morning, we heard from some of the patient advocacy groups that are great and might be local, but also might be national. I work closely with Living Beyond Breast Cancer. Certainly, Komen has resources. There are many community resources, depending on where you are. We have a Cancer Support Community location where I am, and so we refer a lot of our patients to them because they do a great job with all of those resources from the classes, educational classes, to also mindfulness and regular support groups, as well as things like workshops on Tai Chi, journaling, art therapy, things like that. They also have support for caregivers. I always want to take care of my caregivers too. I see a lot of you in the room. You are all the unsung heroes of this whole story. And I think that partnering with your patient, with your survivor is really important to provide that support, whether it's going for a walk together, encouraging support group attendance or modeling that in yourself to go out and take a walk and say, “Hey, I’m going out for a walk. Would you like to come with me?” Because I think it's really important to build that, make that normal and make that communication happen consistently.

Kelly Thomas: I love hearing about all these survivorship programs at different facilities. But quite honestly, not every facility does have something like that. So I think it's very important to have a conversation with your medical team and see if there are any opportunities that support mental health and physical activity. I say this all the time on social media, there's never a good time to have breast cancer. But I'm grateful that I had breast cancer during social media, where I could connect to others via my phone. Nowadays, you can’t even open up Instagram without finding some sort of breast cancer group. Six years ago, when I was going through breast cancer, I had to actively search hashtags to find people that had triple negative like me. So I think social media is a great avenue to go down to see different organizations like the Triple Negative Breast Cancer Foundation, Tigerlily and Living Beyond Breast Cancer. There is so much online. No matter where you may live, or where you reside, your hospital may not have a survivorship program or a gym or fitness, in those terms, but there are so many opportunities online. Nothing is more inspiring than seeing other survivors out on social media, moving their bodies. It influences me to get up and move my body. So I love being a part of the active community on social media in the breast cancer community.

This panel session was sponsored by Novartis.

This transcript has been edited for clarity and conciseness.

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