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The emotional rollercoaster that is a cancer diagnosis doesn’t come to a roaring stop once treatment is complete. In fact, this can be one of the toughest times for people with cancer, says psychologist Kathleen Ashton, Ph.D., because then comes the worry about whether the cancer is coming back, and the after-effects of treatment. Learn coping mechanisms and how to be the best possible support system for someone who’s beat breast cancer.

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Life After Breast Cancer with Dr. Kathleen Ashton

Podcast Transcript

Nada Youssef:   Hi. Thank you for joining us. I'm your host, Nada Youssef. Today we're talking about breast cancer survivors and the struggles that may be visible or invisible to the eye, but they are very, very real. Cancer survivors face a variety of challenges after completing initial treatments. These include physical changes, functional changes, and psychosocial concerns. For today's topic, we have with us psychologist Dr. Kathleen Ashton. Thank you so much for being here today.

Kathleen Ashton:   Thanks for having me.

Nada Youssef:   And if you would just take a few moments to introduce yourself.

Kathleen Ashton:   Sure. My name is Kathleen Ashton. I'm a psychologist here at the Cleveland Clinic. I've been here for 15 years. I'm a health psychologist, so I help patients with health issues, and for the last two years I've been with the Cleveland Clinic Breast Center, where I'm privileged to work with breast cancer patients during their treatment and breast cancer survivors, as well as people who just have risk for breast cancer.

Nada Youssef:   All right, awesome. Thank you. And before we begin, please remember, this is for informational purposes only, and it's not intended to replace your own physician's advice. So for cancer survivors, there's a sense of relief that they probably feel as their treatment is over, but it's not really over because there's always a confusion of what's next. But some of our viewers or listeners may be thinking and wondering why a cancer survivor would have some mental issues after they've defeated cancer. Can you explain that a little bit?

Kathleen Ashton:    Sure. It's really one of the points I wanted to share the most today, is that many patients, when they finish their treatment is the time that's one of the hardest times for them because at that point it's when they start to worry about the cancer coming back. They can often also have a lot of other symptoms, even when their treatment is finished, so they may still have fatigue, pain, sleep problems, emotional issues that come up afterwards, but it's hard for their family and friends to understand why they're not happy, why they're not just relieved the cancer is gone. So it really is a difficult time for patients finishing up treatment.

Nada Youssef:   So you mentioned some of the symptoms and you said fatigue, sleep issues. Can we go a little bit about these symptoms as well?

Kathleen Ashton:    Sure. So there's a lot of physical symptoms patients may still have after they finish their treatment. Those could include fatigue, pain. They can have cognitive changes, difficulties concentrating and with their memory. They can have a lot of insomnia, very common to develop during cancer treatment. And then there can be emotional symptoms as well, so anxiety, depressed mood, irritability, difficulty with functioning at work and home. All of these things can happen.

Nada Youssef:   Now are these, just to clarify, these symptoms are happening during treatment or is this all after treatments as well?

Kathleen Ashton:    They may start during treatment and then continue-

Nada Youssef:   Okay. They continue, okay.

Kathleen Ashton:  ... after their treatment finishes.

Nada Youssef:   So what would you recommend for symptom management tips for these patients?

Kathleen Ashton:   So a few things to think about. So for fatigue, for example if you've developed fatigue or pain issues during your cancer treatment, oftentimes you start to withdraw from activity. So you may feel really tired, low energy, and you may not feel like you can do any activity, and then you may be down for a day or two, and then you feel guilty, and when you're feeling better what tends to happen is patients really overdo it, so then they try to pack all their activity into one day, which is-

Nada Youssef:   Which gets you tired again. Right.

Kathleen Ashton:  ... exhausting. So it becomes a cycle. So one of the skills we teach patients is how to pace themselves, how to plan a reasonable amount of activity for them at the point they're at now in their recovery, and then also to plan pleasurable things to help get their mood up, and then also plan for rest, which is normal.

Nada Youssef:   Sure. And I'm sure this is an emotional ride for the patient, going from being diagnosed, from cancer, to getting treatments and being a survivor. How does a patient cope with these concerns and challenges?

Kathleen Ashton:   It can be really difficult to cope. So probably the first thing that happens to patients when they finish their treatment is they start to fear the cancer coming back. So we call this fear of recurrence, and it's very, very common among breast cancer patients. So up to 70% of patients may have this really strong fear that the cancer is going to return. They can really remind themselves of all the things they've done, so all the treatments they've completed, whether it's surgery, chemotherapy, radiation, the medications they might still be taking to help prevent the cancer from coming back, but even knowing that there's that small percentage can keep that fear there.

Kathleen Ashton:   So it's really important to share that with other people, to talk about it, to not avoid that fear. So talking to your family about it can help. Talking to someone like me can help, and really thinking about how that they would cope with it if it did come back, even if there's a small chance. Many times that fear is something that needs to be faced.

Nada Youssef:   Absolutely. Now, that was one of my questions, so I'm going to ask it now. How do you recommend patients communicate this invisible anxiety that they may have with friends and family? Is this something that you would think like to do in counseling, to do in just like a big group, one-on-one? Depends on the patient?

Kathleen Ashton:   It really depends, but certainly it's something you can do with the people that you're close with, as well just sit down and let them know how you're feeling. You know, we talk about using words to name your emotions, really asking your family to listen and not try to fix it, because that's the tendency, is to want to make you feel better, but sometimes people just really need to be heard. So if they can name those emotions, share what their fears are, and their family can listen to those and just be there for them sometime, that's really effective in helping.

Nada Youssef:   Yeah, that's very helpful. Now, is there something like meditation or any kind of mindfulness that you recommend to these patients?

Kathleen Ashton:   Yeah, so I train a lot of patients in different relaxation techniques. So we train them in things like deep breathing, progressive muscle relaxation, guided imagery. Actually, those can be accessed on our website by any patient. It's just clevelandclinic.org\breastcancerrelaxation.

Nada Youssef:   Oh, breast cancer relaxation. Perfect. All right. Eating habits, exercise, all that is in there as well?

Kathleen Ashton:   There's a little bit about that as well, but certainly for survivors, we know that exercise and keeping your weight normal can really help reduce your risk of recurrence, so that's something in our control that we can add to our daily lifestyle. The recommendations are really high, so about ... Yeah, they're 150 minutes of exercise a week and two units of weight training. So for many survivors, that sounds pretty overwhelming, so we really encourage them to make SMART goals. Those are goals that are specific, measurable, achievable, realistic, and time-oriented. So if you're not exercising at all now you might say, "Okay, I want to exercise for 10 minutes, three times next week," and just start achieving those goals so you can build your confidence to work up to that 150 minutes.

Nada Youssef:   Right. And one of the symptoms that you've mentioned, fatigue, I can imagine diet can help somewhat with that.

Kathleen Ashton:   Sure. I mean, you need energy to be able to do activity, so definitely eating regular meals is recommended. There's different dietary recommendations in terms of eating whole grains, eating fruits and vegetables, limiting red meat, those types of things, but it's basically eating a well-balanced diet and eating regularly through the day.

Nada Youssef:   Great. And then, now I want to ask you, with patients that have a history of anxiety or depression, not everybody wants to share it, not everybody wants to talk about it, especially if it's depression, and you know, a little bit of self-denial that you don't want to talk about it again or whatever it is. How can you tell if someone is being withdrawal, or how could you tell that someone is acting different after a treatment? I'm sure people change after a cancer diagnosis. How do you tell when it's normal? It's just normal, she just went through a hard time, versus like, we should reach out for help.

Kathleen Ashton:   Yeah. So often with anxiety disorders, there's withdrawal and avoidance of whatever the feared thing is. So with breast cancer, as a survivor, you might see your loved one withdrawing from talking about it. They don't want to talk about it. They avoid it. They don't want to maybe be seen without their clothes because of their reconstruction or their breast cancer surgery. So avoidance is one of those signs that you'd be looking for. I think in terms of when you know as a family member that there's an issue, it's really looking at, are they changed in a way where they're not functioning well, where they're not going to work, where they're not able to go to family functions and enjoy themselves? Those would be some signs to look for.

Kathleen Ashton:   I think it's important to point out that cancer patients and cancer survivors are at a higher risk for suicide, so looking for those kinds of warning signs as well can be important. But one of the most important things is to recognize that breast cancer can be traumatic for patients, so some patients with breast cancer develop actually post traumatic stress disorder. So just like someone going through another type of trauma, they may develop this intense fear of the breast cancer returning or intense fears about the treatments that they've been through. So in those situations, they're often really irritable. They may withdraw socially. Again, like we talked about, they may have a lot of sleep problems, nightmares, flashbacks. And again, they may show a lot of avoidance behavior or a lot of anxiety when triggers come out.

Kathleen Ashton:   So as much as it's wonderful, breast cancer awareness month and raising awareness for women to get mammograms and to talk about breast cancer, it's actually a really difficult month for a lot of survivors because there are so many stories about breast cancer that they're seeing that it triggers some of this PTSD reaction.

Nada Youssef:   Wow. That's very good to know. I want to kind of go back to one of the question that we actually just had, but we were having some difficulty with audio, so I'm going to ask you the question again. Sorry to repeat myself, but I wanted to ask when to reach for help. Just to make sure all of our audience heard that, when is it time to reach for help?

Kathleen Ashton:   Okay. So some of the signs you might want to look for: if you are not enjoying things that you normally enjoy, you're withdrawing from activities, you're having sleep problems, changes in appetite, crying frequently. Certainly, any thoughts about hurting yourself or ... Sometimes this comes out in breast cancer survivors, there's just preoccupation with death, just thinking it might be easier if I wasn't here. Those are warning signs that you would really want to talk to a mental health professional.

Nada Youssef:   Sure. Now, I know you mentioned physical changes. That's something that I'm sure is a bit ... I mean, whether it's hair or chest, whatever it is, would you say it's the same kind of help? Psychologically, you need to see counselors, to see someone, anything else to do?

Kathleen Ashton:   Body image and sexual health are two of the biggest issues for survivors. So it's not unusual for people to really struggle with their changes after surgery, changes after treatment. So that could be breast reconstruction or not having reconstruction, having that loss of the breast. It could be hair loss, it could be weight gain. These are all really common body image issues for people after surgery. And then your sexual health can really change as well. So some of the medications that patients might take after their breast cancer treatment to help reduce their risk of recurrence can cause some sexual side effects. So oftentimes, there's some work to do there in terms of building the relationship back up and finding some ways to deal with those side effects.

Nada Youssef:   And how do you recommend, after going through breast cancer treatments and surviving, how to go back to romance, whether you already had someone that you were intimate with or new to the dating scene? What do you recommend for people, like little baby steps, what to do?

Kathleen Ashton:   Yeah. Well, I always want to remind people that, especially for women, the most important sexual organ is the brain.

Nada Youssef:   Yes.

Kathleen Ashton:   So a lot of it is about communication and talking about it, and also having romantic time together. So it doesn't have to all be about intercourse. It can be just physical contact, enjoying each other, spending time together, and when you're just finished breast cancer treatment, a lot of that time has all been around medical issues, right? There might not be a lot of time for that kind of intimacy, so it's just kind of getting used to having time that isn't medically-oriented is a big first step.

Nada Youssef:   Okay. I have some questions that came in. I have Donna. What are the things I can do as a friend to help someone through their breast cancer journey?

Kathleen Ashton:   That's a great question. So one of the best things you can do, Donna, is really to not just ask people what you can do but just show up and do it. So when patients come to me and they're newly diagnosed, they really love when someone just shows up with a meal or says, "I'm going to pick your son up from soccer practice every day for the next month for you, so that's not something you have to worry about anymore." So when you tell people what can I do, they're so overwhelmed with their own treatment that they can't really think of what they need right in that moment, and it becomes almost a burden to them. So just thinking about, what are those different things that they need? Could you go clean their house one Saturday? That could be a huge blessing for them. So those are just a few ideas.

Nada Youssef:   And then I have Jeanine. I just finished chemo, and ... Is it RAD? RAD?

Kathleen Ashton:   Radiation.

Nada Youssef:   ... and radiation, and how do I know if it's gone? Should I get another mammogram? I know you're a psychologist, but if this doesn't apply, we can move on. But what do you say to that?

Kathleen Ashton:   So one of the things as you finish up treatment that's really important is to have a survivorship visit. So this is probably going to be with your medical oncologist, the one who is managing the chemotherapy, and at that survivorship visit, they're going to go through and list all the treatments that you've done. They're going to list all the scans that you're going to need and the timetable for that. They're going to list all your follow-up visits that you're going to need in the next year, and kind of a plan for the next five years for you. And then they're going to also talk to you about some of those lifestyle changes and concerns that we talked about before in terms of diet, exercise, sleep, managing your stress, so all the things you need to know, and they're going to give it to you in a nice written plan. That is so helpful for patients because they are kind of left with this, I finished everything, what do I do now? I've been going to the doctor every day for months. What's my next step? So this plan will give you your next step.

Nada Youssef:   Cool. And it's called survivorship visit?

Kathleen Ashton:   A survivorship visit and plan.

Nada Youssef:   And plan. Ah, that's excellent. Now, I know we were talking about survivorship, but just in case someone's still going through treatments or anything like that, are there any tips or anything that you would like to say to the patient or their loved one or their family that maybe are watching regarding their treatments that they're going through, or someone that's like what we've been talking, that's already had their treatment and is a survivor?

Kathleen Ashton:   Yeah. Probably one of the best pieces of advice I give to patients is just to take everything one step at a time. When you're going through breast cancer treatment, a lot of times you're thinking about, okay, first day of surgery, and then I have chemotherapy, and then I have radiation, and then I have to take this medication. It becomes really overwhelming. So if you can kind of back it up and think about, what's the step that I need to do today? What do I need to do today?

Kathleen Ashton:   So even with surgery, a lot of times I tell patients, "You've just had surgery. What's your job? Is it to worry about your biopsy results? Is it ... Nope, it's to heal. That's all you have to do today." So just one step at a time is usually really helpful.

Nada Youssef:   Great. All right, well we're running out of time. Is there anything else that you would like to touch on if we have not? I know we've talked about quite a bit.

Kathleen Ashton:   I just want to thank you for having me today. I enjoy the work that I do so much. My patients really inspire me. So if you're a breast cancer patient or a survivor, and you're out there and you're feeling like I'm the only one who worries about this or has these feelings, I just want to let you know that you're not alone, and I hope you reach out for some help.

Nada Youssef:   Thank you. Thank you so much for your time. Appreciate it. And for more information, please visit clevelandclinic.org/breastcancer. Thank you so much for watching, and we'll see you again next time.

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