[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.
Breast cancer affects everyone differently, but it’s common for people diagnosed with breast cancer to experience depression, anxiety, and mental or emotional distress. The support of family, friends, and others can help you go through diagnosis, treatment, and recovery. Here today to help us navigate the toll that a breast cancer diagnosis can have on your mental and sexual health are two experts from City of Hope Chicago, behavioral health therapist, Alexandria Callahan, and sexual health and intimacy nurse, Cindy Ingram.
Ladies, welcome to the show.
[00:00:51] Alexandria Callahan: Thank you.
[00:00:51] Cindy Ingram: Thank you.
[00:00:53] Adam Walker: I really appreciate you being here. I really appreciate us just talking about this aspect of breast cancer. It seems like it’s hard for people to talk about breast cancer in general, but this in particular. And I love that we’re able to talk about it on the show.
So Alexandria, let’s start with you. Can you help our listeners understand the ways that breast cancer might impact someone’s mental health, both, both during diagnosis and treatment, but then also after treatment ends?
[00:01:20] Alexandria Callahan: Absolutely. Hearing the word cancer can flip your entire world upside down. Many patients experience an increase in anxiety, feelings of depression, and trouble relaxing.
What sets breast cancer apart from other diagnoses is that it’s one of the cancers that often has visible changes that accompany the treatment, outside of the hair loss that we typically think of. Although it is typically thought of as a female diagnosis, men too can get breast cancer. Though most of our responses today will be geared toward the female population, I wanted to acknowledge men, especially I’ve worked with, quite a few that struggle with the diagnosis and often have, been embarrassed because it’s thought to be a woman’s illness.
Hair loss, as I mentioned, happens with many of our cancer patients just due to chemotherapy or sometimes radiation. However, with the breast cancer, women are also faced with treatment options being the removal of one or both of their breasts. Many women speak about losing a part of their femininity or what defines them as a woman.
This is also their attachment to their children if they breastfed. They question if their partner will still find them attractive as they cannot even bear to look at themselves in the mirror. I’ve had quite a few patients that have talked to me about blocking out all the mirrors in their house so that they can’t see their reflection because they don’t want to look at those changes.
A lot of body image changes and shame emerge which contribute to the need to grieve these changes. After treatment, there’s oftentimes a scar that reminds the woman of the loss after treatment. Afterwards, battling fatigue, role expectations that are put on themselves to be able to run their household again or get back to their regular activities and routines.
On the flip side, I’ve had a lot of patients too that have talked about family putting expectations on them, telling them, “you look fine, I don’t understand why you’re not doing all of these things.” So there’s a lot of self judgment that comes out of that as well and this idea of getting back to their pre cancer routine despite the fact that the body’s still healing.
[00:03:29] Adam Walker: Wow. so that sounds like a lot. And I’m sure that only even scratches the surface of all of the complexities of this. So, I realized that some people might not even realize that their mental health needs help. What are some of the signs or symptoms that people should look for?
[00:03:47] Alexandria Callahan: So for a lot of our patients, they try to keep things business as usual, oftentimes pushing their bodies beyond their limitations.
For loved ones, it’s important to check in and offer support to the patients. It can be very difficult for our patients to ask for help. They want to keep their and maintain their independence. So it is taking the initiative to see if there is anything you can assist them in doing to make the situation easier.
If you notice changes in their mood, remember it can be due to the treatment side effects themselves, lack of sleep, uncontrolled pain, and being tired of having cancer. I’ve had a lot of patients that say, I’m sick and tired of being sick and tired. And as a cancer patient, you never get a break from the cancer; your body is always with you and the majority of our treatment fatigue is the common side effect and it’s a chronic fatigue, not I worked in the yard all day and I’m tired and I can rest and recuperate. Many of our patients experience mixed emotion, feelings of isolation due to withdrawing from activities as a way to protect their immune system, or as a result of that cancer related fatigue I mentioned.
Worry and anxiety tend to increase as a result of the unknowns that accompany cancer, especially around scan time. Anxiety will increase for the fear of what the scans might show. “Do I have to go through this all over again?” And, it’s every time they go for the scans, it’s a hard balance to get.
There’ll be noticeable changes in their sleep and eating habits. Many treatments impact the way food tastes or can cause that fatigue. It’s a common theme, but it also takes away their appetite. There’s often a lack of motivation to engage in activities, which can bring about feelings of helplessness or defeat, just because the body’s not functioning the way it did prior to cancer treatment.
Perspectives change as well. Some things that were important may not hold as much weight as they used to. Stress also impacts the body systemically, which can interrupt our sleep, make us more emotionally raw and irritable. This is where we sometimes see those maladaptive coping skills come in, that extra glass of wine, picking up the cigarette, the emotional eating emerges, searching for things that comfort rather than regulating the body with some of those healthier coping skills, like meditation, going for a walk, those things that nourish the body and help you reconnect again.
[00:06:21] Adam Walker: Yeah, so that’s a really good list of things. I like that you ended with the positive coping skills, meditation, going for a walk. That’s what I forget sometimes, just in day to day living and how stressful it can be that sometimes those are the things that can make some of the most impact for us.
And they’re easy to forget, so, let’s talk about the importance of a support network and where listeners can go if they need someone to talk to. Can you walk me through that?
[00:06:51] Alexandria Callahan: Support is extremely important and it doesn’t have to be a huge network either. I have some patients that only have a few people and that’s enough for them, where others have their family, their friends, their church community, their neighbors, everyone they can possibly think of.
And it’s really up to the patient and the comfort level and how many people know. I’ve had quite a few patients say, “I don’t want cancer to be the focus of our conversations, so I don’t want to tell a lot of people because I don’t want them to look at me differently. I don’t want them to call up and say, Well, how are you doing with the cancer?”
Because then they feel like the cancer is defining them, rather than saying, “Yeah, I’m doing great. little Timmy’s having soccer game this afternoon. We’re going to the kids play later.” Whatever it might be, having that business as usual, a conversation, support is important for the family as well, you have a lot of caregivers that come that they just, they feel helpless in this journey and they say, I don’t know what to do.
My default is to fix. And I don’t know how to do that. Through City of Hope, we actually have Cancer Fighters. It’s an online support network and people can utilize that. You don’t have to be one of our patients to join or watch any of the videos online. So that’s something that is a resource for anybody.
Komen Helpline is also great. American Cancer Society, local churches and hospitals often offer support groups for patients and families too.
[00:08:20] Adam Walker: Yeah. And I think I would just remind listeners that there are support networks out there for you, right? And there are people even in your life that you might not even realize that will support you if you ask. And so I think sometimes it’s hard to reach out, it’s hard to ask, but there are people that care and that are willing to step up and care.
[00:08:43] Alexandria Callahan: Yeah, I’ve had quite a few patients that actually were surprised and said, “well, the people I thought were going to be there aren’t and other people just emerged out of the woodwork and are my biggest champions and cheerleaders.”
[00:08:55] Adam Walker: That’s right. That’s right. Yeah. And those are the people that you can cling to. And that can be your community and your support. So when someone is not feeling well, when they’re feeling down, do you have any advice or any steps that they can try to take to lift their mood in the short term for our caregivers?
[00:09:14] Alexandria Callahan: It’s really being present with someone can make all the difference. Now, as I mentioned, when we see someone we love suffering, our first response is to fix it. With cancer, there’s so much that is out of our control, our patients and their caregivers need to take a step back and look at what can be done in the current situation.
Yeah. It can be something as simple as making a cup of tea, rubbing their feet, or just holding them for a few minutes. It is important to remember that being encouraging is not the same as trying to force someone to get up and walk or to eat a big meal. Meeting the patient where they’re at, recognizing the struggle for strength or energy.
The changes in personal identity and roles are all a factor in their mood and coping. For our patients, it’s finding what helps you to recuperate. A warm shower, soaking your feet in warm water, to relax the body. I actually recommend that to a lot of my patients because it’s hard to get in and out of a bathtub, but I say, “do you have, like a little Rubbermaid tote or something that your feet could fit in?”
While you’re watching your favorite movie or reading a book, you can just soak your feet in that warm water to relax everything. Certainly different breathing techniques can help as well, something that we carry with us every day. I think that’s one of the easiest things. For a lot of my patients, especially when they have more anxiety, I tell them to put one hand on their heart and one on their belly and just breathe into their hands.
And the amazing thing with that too, is you can put as much pressure as you want with your hands. I’ve had some people say this feels like a great big hug around me right now and when you’re focusing on that breathing, you’re actually helping to calm your entire nervous system. You get your heart rate and you’re breathing in sync and everything just balances out, your blood pressure lowers, your calmer, your brain is saying, “Oh, I don’t have to be in that fight or flight mode right now. I can just relax and be present.” Even dental movements or exercises on the couch, going outside for a walk or simply for some fresh air. I know it can feel like a chore to go from the couch to the bathroom some days, or even just that idea. Okay, well, if I get to the mailbox, I’m not sure if I’m going to get back to the front door.
It’s knowing those limitations, too, and going back to that fatigue piece, too. That is such a common side effect, and it’s really challenging to decipher between the need to rest versus pushing the body to get over that hurdle for more activity.
[00:11:44] Adam Walker: Yeah, in all the things that you mentioned, what always surprises me in moments of stress is that if you focus on your breathing, it takes your focus off of the stress.
And it’s just one of the most simple ways to calm down. And with my kids, I’ve got some kids that, sometimes they are a little anxious and focusing on breathing can really help with that.
[00:12:08] Alexandria Callahan: Absolutely. I tell my patients all the time. That’s most powerful tool you have and yeah, it carries with you every day.
[00:12:14] Adam Walker: And you’re doing it anyway.
Focus on it for a minute. That’s right. That’s right. So Cindy, let’s talk about your field of expertise for a minute of breast cancer diagnosis. It brings with it a lot of complicated emotions tied to intimacy, which is not something we talk about a lot, but I know it’s incredibly important.
So first let’s talk about body image. I think this is something that a lot of women struggle with in general, but I’m sure it’s even more of a struggle during a breast cancer diagnosis. Is that the case? And what could you tell us about that?
[00:12:47] Cindy Ingram: That is true, people have shame about the way they look.
They have sensation changes to the breast, which can impact intimacy. Many women say that their breasts really impact their sensuality and their intimacy, so there’s that concern. With some cultures, there’s concerns that wigs don’t match their hair textures that they’re used to. There can be skin pigment changes with treatment.
Prosthetics do not match skin tones. Overall physical changes. So they’re grieving their old body trying to accept their new body hoping and accepting your new body
[00:13:30] Adam Walker: Wow, that sounds really tough and then I would imagine that talking about these feelings and what they mean in terms of intimacy with their partner can be incredibly difficult. Do you have any advice for how our listeners might best communicate with their partners about some of these issues?
[00:13:46] Cindy Ingram: Many people have a difficult time discussing intimacy as well as any sexual health concerns. We have a culture that hasn’t provided important education, so people often learn on their own through friends, through the internet. Positive sex role modeling is not a mainstay in our homes in America, and sex is often a taboo topic for many.
I often suggest to sit with your feelings. And then write down everything. Then make a date with your partner, and both of you share the concerns and feelings that you’ve written. And this helps open up a dialogue. Partners don’t know what you think, only what you share.
[00:14:28] Adam Walker: I love that you suggest writing down your feelings.
I find that when you’re forced to write something, it makes you think through it at a depth that you otherwise would not. And then you can refine your thinking further. Is that kind of the impetus behind the writing it down part?
[00:14:45] Cindy Ingram: Well, I think it’s that’s part of the impetus, but just being able to actually get it out and if you can actually get it out, then you can actually share it with somebody, right?
[00:14:56] Adam Walker: So I guess if you can write it down, if you can communicate well written, then you can communicate well verbally at that point as well. Okay. Got it. That makes a lot of sense. I love that.
[00:15:05] Cindy Ingram: And it’s sometimes easier just to read what you’ve written than to think about it with your heart and feel those feelings.
[00:15:12] Adam Walker: Or maybe even to hand it to your partner and say, this is what I’m feeling. Read this and then let’s talk about it. Okay. So, what advice do you have for our listeners about staying connected with their partner during and through a breast cancer diagnosis and through treatment?
[00:15:30] Cindy Ingram: Well, desire can wax and wean because of treatment. And also people are trying to address, accept, and move through their treatment journey. Many times people are fatigued and exhausted and sex isn’t even on their to do list. So I suggest scheduling time to connect, maybe just to kiss. Hug, cuddle, engage when you’re not exhausted, when it’s not, what’s the best time of the day for you to engage with your partner?
When you actually have energy, don’t wait until the end of the day when you’re depleted. Desire and libido issues can be addressed so you can move through this period. As your body changes with treatment, it’s good to get to know your body again. Explore what feels good now. It’s also good to share this exploration with your partner.
And there’s a practice that we use called Sensate Focus that I often introduce. And that could be for single people or partner couples.
[00:16:31] Adam Walker: I’m curious about one of the things you mentioned. You mentioned cuddling. And I wonder, does that have, and I’m asking bcauese I watched an interview with a marriage expert s,pecialists, doctor or somebody, and they talked about the power of cuddling and how that related to connectivity with their partner and in sex in particular, would you say that cuddling is an important component of that?
[00:16:55] Cindy Ingram: Oh, it’s a huge component. Just hugging somebody, you feel better. You’re feeling more supported, you’re feeling cared for. So that really helps strengthen your foundation.
[00:17:06] Adam Walker: Yeah. And in the interview, they said, I think they said hugging for 20 seconds is enough to release, was it oxytocin in the blood?
I think that’s what it was. And I was like, “oh, I need to hug my kids a little longer, give them a slightly a hug my wife a little longer.” That connection I think is so important. But I think we’re in such a busy society that sometimes we’ll do a quick hug, like a little side hug and maybe a full hug would be more helpful in those moments.
[00:17:33] Alexandria Callahan: Well, even for our cancer patients, so many of them say that people are afraid to touch them. I had some say, “I’m not a leper, but no one will touch me.” And especially with our breast patients, I’ve had a lot say that their spouses are afraid to hurt them. So they pulled away too, which, Cindy works wonders with our patients too, to help bring that connection back.
[00:17:56] Adam Walker: I love that, all right. So what about our listeners that need to navigate the dating scene? Do you have any recommendations on how to best approach that?
[00:18:09] Cindy Ingram: Some suggestions would be to participate in like minded groups of people. You will meet people, with your same interests. You can have fun. You can get to know them.
What are your interests? Maybe it’s, yoga, maybe it’s a book club, maybe it’s pickleball, eye acting, whatever you enjoy. And if you are dating someone new, there are two thoughts on that. Some people want to tell the person right away that they’re going through a cancer journey and they prefer not to spend five or six days getting to know someone before they tell them.
And then there’s the other camp where they really want to get to know someone first to decide if they really want to share that information or not. And there’s no right or wrong answer. It just depends on how you feel. You know about that for yourself.
[00:18:59] Adam Walker: Yeah, in the same way that there’s no right or wrong way to care for someone that’s going through a breast cancer journey.
There’s a million different ways, and I think they have, you have to know yourself to be able to make that decision. That’s really great advice. So ladies, this has been a really great conversation. I really appreciate focus on mental health, the focus on, intimacy and connection.
I wonder, do you have any final advice for our listeners who have made, who may have been recently diagnosed or are struggling?
[00:19:29] Alexandria Callahan: Remember that right now your main job is to focus on healing. It can be difficult to let go of some of your responsibilities or the to do list. However, your body only has so much energy.
So if you’re expelling a hundred percent of that energy externally, your body will not have enough internally to do its healing and repair work. So it is okay to ask for help, remembering that this is temporary. Utilize the strengths of those around you too, they want to help, so they’re looking for those avenues and things that they can do.
And get you back to your routine once you’re complete with treatment. If you have little kids, I always recommend putting them in charge of doing the self care activities in the household. Every day, divide it up. If you have two, one gets even days, one gets the odd days. And it can be as simple as, “okay, we’re all taking a deep breath before dinner.”
Or, “we’re going to go outside for a scavenger hunt. Oh, I found this great cat video on YouTube. Or, a meditation or something.” Even family game nights is great ways to just decompress that stress and have everyone connect and learn those self care tools that you can take post cancer and into the rest of your life.
[00:20:39] Adam Walker: I love that. Cindy, any final thoughts from you?
[00:20:42] Cindy Ingram: Sure. I would say have someone you can talk to and share your feelings with. Very important. And try to remember to eat well, sleep well, get a little movement every day, even if it’s just 10 or 15 minutes, it’ll make you feel better. Self care, doing something that you love that really makes you feel good.
And I think it’s really important to wear clothing that makes you feel good Instead of just being in your sweats and then you don’t feel good and then it’s like a vicious cycle. You know, put a little time and effort into finding an outfit that makes you feel good and when you’re not feeling good put that out for that.
[00:21:21] Adam Walker: I love that. That’s such good advice, such great advice. Yeah, I love that. I love that. Well ladies, thank you for the work that you do for the impact that you have on so many lives. And thank you for the impact you’re having through this interview and joining us on the show today.
[00:21:36] Alexandria Callahan: Thank you, Adam.
[00:21:37] Cindy Ingram: Thank you.
[00:21:43] 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 @AJWalker or on my blog, adamjwalker.com.