[00:00:00] Adam Walker: From Susan G. Komen, this is Real Pink, a podcast exploring real stories, struggles, and triumphs related to breast cancer. We’re taking the conversation from the doctor’s office to your living room.
[00:00:17] A breast cancer diagnosis can bring a wide range of emotions, including shock, fear, sadness, and anger. These feelings are normal. Some people find joining a support group or talking to a counselor or therapist helpful in coping with these feelings. Today’s guest is a Komen staff member and a licensed clinical social worker with experience helping patients through the transitions they face through their cancer diagnosis and treatment. Here today to talk to us about the impact of diagnosis on mental health and some helpful strategies to help cope is Amy Culver. Amy, welcome to the show!
[00:00:53] Amy Culver: Thank you so much Adam. I’m happy to be here with you today.
[00:00:56] Adam Walker: Man, this is going to be so good because it’s such an important topic and I really love what you do. So let’s start with you. Tell the listeners a little bit about yourself and your experience working with cancer patients.
[00:01:11] Amy Culver: Sure. So I’ve been an oncology social worker for over 10 years, and most of my career has been working in outpatient cancer centers providing psychosocial support to patients and their loved ones throughout their illness. So hopefully as close to the time of diagnosis as possible to wherever the road takes us. So, currently I work on the health information and publications team at Komen, where we work to ensure that all the information about breast health and breast cancer shared by our organization is safe, accurate, current, consistent, and supported by evidence. So I’ve been able to help with the ongoing acknowledgement of the psychosocial aspects of someone’s illness in addition to the physical aspects.
[00:01:59] Adam Walker: Oh, that’s fantastic. Okay. Sounds like you’ve got got a lot of experience in this space. That’s good. That makes you the person to talk to! So that’s why we’re here. That’s great. Okay.
[00:02:09] Amy Culver: Thank you.
[00:02:09] Adam Walker: So then, from a broad perspective tell us what is the impact of a cancer or breast cancer diagnosis on someone’s mental health typically?
[00:02:20] Amy Culver: Yeah, that is such a good question, and I think there’s so many different things that we can talk about. And before I answer that question and the others, you know, I just want to acknowledge that I’m going to be talking about things in more general terms or sharing reflections of common things that I saw in my own social work practice. And so, I just want to recognize that everyone’s experience is different, and the things that I’m saying aren’t going to be everyone’s experience. But hopefully some of the things that I say will resonate with our listeners. So, yeah. So we can definitely talk about the impact.
[00:02:55] There’s a couple things that stood out to me when I thought about this question and how a breast cancer diagnosis can impact mental health. And the first thing is the ongoing adjustment that people experience. You know, as early as the time of their diagnosis and far beyond that. And again, that adjustment looks different for everyone.
[00:03:19] You know, when I think about the different things people are adjusting to, it can be adjusting to the diagnosis itself, it could be their treatments, learning new information and terminology, going to medical appointments, navigating a healthcare system. There’s so many things that people are kind of swept up into this world into, and it’s really oftentimes full steam ahead.
[00:03:44] And when all of that’s happening, they’re trying to make sense of their diagnosis, they’re trying to cope with it, and they’re doing all of that while they’re trying to manage the other areas of their life, like work, or relationships, or caregiving responsibilities, you know, the things that they’re involved in in the day-to-day.
[00:04:04] And so with all of those different moving parts, there’s bound to be an ongoing adjustment in all of those different areas and sometimes that adjustment is happening, you know, in different areas, and at different time points, and it may even be consistently, and so I think with all of that happening, it’s common for someone’s mental health to be impacted when they have a lot of different things changing and they’re trying to manage so many different things in their life as well as in the life of their loved ones, even, sometimes.
[00:04:38] Adam Walker: So like, what are some of the most common worries or stressors that patients are going to face during a diagnosis?
[00:04:45] Amy Culver: I kind of thought about this in two different ways. I mean, when we think about during a diagnosis, I mean people are often undergoing different tests to find out information about their health and it can be stressful to have these different tests and to be living in a state where information isn’t known. And I think, you know, we live with a certain level of uncertainty in our lives in general, but during the time when we’re waiting on a diagnosis, you know, we’re definitely living with uncertainty in our lives.
[00:05:17] We’re waiting for test results, we’re waiting for that phone call from our doctor, and it’s a very difficult time, and it’s normal for feelings of worry or, you know, stress about what’s going to happen, what’s coming next, you know, for those types of worries to be heightened.
[00:05:35] I think after someone receives their diagnosis, there are a lot of different common worries and stressors that people have. You know, they could be worried about understanding their diagnosis. They could be worried about understanding their treatment plan and what’s coming next, you know, and oftentimes people have a lot of questions about their treatment plan.
[00:05:56] You know, they want to know what it is. They want to know what side effects they’re going to have. They want to know how long treatment’s going to last and how it’s going to impact their day-to-day life. And then within their day-to-day life, they, you know, might be worried about practical things, like if they’re going to be able to continue to work or their financial situation, or insurance, or how they’re going to get to all of their appointments, or how they’re going to continue to take care of the people that they take care of.
[00:06:24] And I think oftentimes people worry a lot about other people compared to when they worry about themselves. But, you know, people might also be thinking about themselves and how they’re going to cope and manage everything that they’re going through.
[00:06:38] Adam Walker: And so, you as a mental health professional, just while we’re having this conversation, I mean, how do you, how do mental health professionals help alleviate that stress and deal with those concerns and help patients process those emotions?
[00:06:52] Amy Culver: Yeah, so I think we can provide a safe place for people to express their thoughts and feelings and process them without judgment. So I think we’re often a consistent presence for people throughout their cancer diagnosis. I think it’s good for people to be able to talk about their experience with the people that they love. But sometimes it can be hard for the people close to us to be objective, and sometimes we also want to protect them so we may not tell them everything that we’re thinking or feeling.
[00:07:27] So I think working with a mental health professional, you know, someone who’s objective, who can be a sounding board to listen and reflect things back to you is helpful. Sometimes we’re simply being present with people, we’re listening, and validating, and normalizing their experience, which can be very powerful. And then we can also help them with coping strategies or problem solving, which I think helps people feel empowered as well.
[00:07:54] Adam Walker: I love that. So earlier you mentioned that often one of a patient’s like biggest concerns is other people, you know, their families, their loved ones. So let’s talk about that for a minute. How do you help loved ones? I mean, as a social worker, how do you provide support to family and friends and what’s important for them to know during this period?
[00:08:15] Amy Culver: Yeah, those are such good questions. So I think loved ones are an incredibly important part of a person’s diagnosis. I think they give a lot of different types of support from emotional support to helping with practical needs. They may be helping with personal care or helping get people to doctor’s appointments. I mean, they help with so many different things and they truly make such a difference in people’s lives. So social workers do provide support to family members and friends, you know, we do similar with what we would do working with someone who’s going through breast cancer or living with breast cancer.
[00:08:55] We would provide them a space to talk about things and process their thoughts and feelings. We can assist them with problem solving or needs that they may have. We maybe would even refer them to a resource like a caregiver support group or something within their community that could help them. And I think one of the most important things that they could know is that they’re also important when, you know, someone is going through a cancer diagnosis. And that it’s okay for them to talk about what their needs are and ask the support that they need when they’re supporting their loved with cancer.
[00:09:36] I think it can be hard to acknowledge our own needs when we’re witnessing someone that we love going through something so difficult, like a cancer diagnosis. And so sometimes we have to give ourselves permission to acknowledge that we have those needs, you know, and that we need the help, and that it’s okay to ask for it.
[00:10:02] You know, it’s very normal for the focus to be completely on the person with cancer. I’ve seen that so many times, and that’s totally appropriate and normal, but sometimes the loved ones, their needs fall away, and there’s not as much of a focus on them, and that can be difficult to work through. And so my encouragement to them would be, even though it can be difficult to let people know how they’re doing, to let people know where they feel like they need help, you know, and there’s different people they can talk to. They can talk with a trusted family member or friend, they can, you know, talk with a social worker or patient navigator if they don’t have people within their support system that they maybe would lean on. Talk with a social worker or navigator and see what supportive resources are out there for you.
[00:10:49] Adam Walker: I’m really glad that you shared that, because honestly, I’d never really thought about the profound needs of the families surrounding cancer patients and the fact that they must feel very hesitant to share their own needs and to deal with their own needs because they’re so busy dealing the patient’s needs. And so, I’d never even considered… in all the years of doing these interviews, I never really thought of it that way. So I really appreciate you sharing that. That was really very helpful. So, so what are are there any resources that you often point people to for help?
[00:11:22] Amy Culver: Yeah, so I think kind of depends on what people’s needs are. I think one of my go-tos is referring people back to their healthcare team. There’s a lot of people that work on their healthcare team that are great resources, and so I encourage people to share their concerns or questions with a doctor or nurse, and you know, if they’re not already connected to a social worker, you know, those members of the healthcare team can connect them to one, or again, a patient navigator.
[00:11:49] I also look for organizations, so in the breast cancer world, I would be looking to organizations like Susan G. Komen or other resources within someone’s community that can help them. If people are specifically interested in mental health support, again, they could ask to speak with a social worker, or they could ask for a referral to like a counselor or a therapist or a psychologist. Sometimes there’s mental health professionals available where they’re receiving their breast cancer care, or if there’s not, oftentimes someone on the medical team will know people in the community that work with people with cancer, so they could refer them there. Or they may refer someone to like a cancer support group or a peer mentoring program where they can, you know, connect and get support. And so there’s information about these resources on komen.org, or people can also contact our breast care helpline for information.
[00:12:46] Adam Walker: Yeah and I was going to mention… I know that Komen has the helpline. What are some ways that the helpline specialists can assist with immediate mental help?
[00:12:56] Amy Culver: Sure. So I’ll talk a little bit about the helpline first. So our care help is staffed by highly skilled. Monday through Friday from 9:00 AM to 10:00 PM Eastern time. They provide emotional support during phone calls to the helpline, and they also provide education. They can help people navigate through information and they can connect them to resources.
[00:13:19] With mental health support specifically, in addition to the emotional support they provide, they can help people understand the resources that they have available in order to get connected to a counselor or therapist. So sometimes that’s helping people with how to talk with their medical team about their mental health and their coping, or they maybe would refer them to a community resource, or sometimes they even help people understand their insurance benefits because some plans have a mental health benefit were they will cover ongoing therapy.
[00:13:55] So the helpline itself does not provide ongoing counseling or therapy, and they’re not a crisis line. So if someone does call the helpline and they’re experiencing a serious mental health concern, they’ll provide support in the moment, but they may also refer someone to a mental health crisis line like 988, or they may connect them to a local crisis center or mental health center for support.
[00:14:23] And the way to reach the helpline… there’s a couple different ways, actually. You can call them at 1-877-GOKOMEN, which is 1-877-465-6636. Or you can email them at helpline@Komen.org and the specialists speak both English and Spanish.
[00:14:47] Adam Walker: That’s fantastic. Thank and thank you for sharing the the helpline number. That’s always so important. So then last question, Amy, what advice do you have for our listeners that may be recently diagnosed and are struggling?
[00:15:00] Amy Culver: I think there’s so many different things I can say, but my hope would be that people know that it’s normal to experience distress and that it’s normal for their, you know, mental health to be impacted after they receive a breast cancer diagnosis, and that they’re not alone in that experience. I think sometimes there’s a stigma around mental health and my hope is that stigma’s lessening over time.
[00:15:28] I think having conversations like this are very helpful, but yeah, I mean the impact, you know, can happen in a lot of different areas of someone’s life and sometimes the impact can feel very strong, like things are very challenging or they’re getting worse and other times, the impact might be less. You know, there might be times where things are moving along smoothly and things are getting easier and so the journey is fluid and, you know, things change, and people adapt, or sometimes they need help adapting and that’s okay.
[00:16:00] Even though, you know, there’s possibly a stigma or even though it’s not as easy to often talk about mental health, you know, I just would encourage people to, you know, consider it and to be open to it and to get outside of their comfort zone and please tell people how you’re doing mentally and emotionally. You know, please tell people how you’re coping. Those things need to be attended to just as much, you know, as the physical aspects. And there’s people that want to be there for you. They want to listen and they want to help support you. I’ve seen it help people in the long run.
[00:16:35] You know, I’ve worked with people from all different walks of life and they have so much on their plates that, you know, they’re trying to manage. And you know, sometimes people get further along on their journey and then they realize that their mental health is, you know, really struggling and they’re not doing as well.
[00:16:54] And then there’s some people that think about mental health more proactively and you know, are addressing it earlier on. And there’s no right or wrong way to do it and there’s no shame in what people com feel comfortable with and what they want to do. But I think, you know, the more that we can talk about it earlier on, you know, the more that we can address it, the more support we can put around people.
[00:17:19] Adam Walker: Yeah, that’s right. That’s right. Struggling with mental health in these situations is totally normal. And you are not alone and there is help available to you. And so, that’s the takeaway. Well, Amy I love and appreciate so much the work that you’re doing to help so many people. Thank you for sharing your heart, your expertise with us today. Thank you for coming on the show.
[00:17:42] Amy Culver: Yeah. Thank you so much.
[00:17:45] Adam Walker: Thanks for listening to Real Pink, a weekly podcast by Susan G. Komen. For more episodes, visit RealPink.Komen.org. For more on breast cancer, visit Komen.org. Make sure to check out @SusanGKomen on social media. I’m your host, Adam. You can find me on Twitter @AJ Walker, or on my blog adamjwalker.com.