Exercise for People Diagnosed With Metastatic Breast Cancer

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Jamie DePolo: Hello, everyone, I’m Jamie DePolo, senior editor at Breastcancer.org. Our podcast guest today is Sami Mansfield, who started her career as a cancer exercise specialist in 2003. Since being inspired by coaching her first client who had been diagnosed with cancer 15 years ago, Sami’s career has been dedicated to helping people with cancer, of any type and at any stage, live as well as possible. Sami’s experience encompasses work at both community- and hospital-based cancer centers, nonprofit organizations, developing and consulting on clinical trials, and is a speaker presenting to both patients and healthcare professionals. She is a certified cancer exercise trainer and CrossFit level 1 coach with extensive exercise and nutrition experience. Today, we’re going to talk to Sami about exercise for people with metastatic breast cancer. 

Sami, welcome to the podcast! 

Sami Mansfield: Thanks for having me, Jamie. Excited to be here. 

Jamie DePolo: To start, is there a difference between exercise and physical activity, because many of the studies I read use the terms interchangeably? 

Sami Mansfield: Absolutely. Really, both are important. However, the big difference is that physical activity is anything you do to move your body. So it could be getting ready for your day or even taking a walk. But exercise has a plan, a purpose, a goal, or an intention.  

So, when we’re on the roadmap of cancer, I tell people if you’re living in the Midwest where I live, and you want to get out of this winter and, say, head down to Florida, you’re not going to zip around the United States going through Minnesota and New York City. You’re going to head straight down to Florida. So exercise really should have that same roadmap. And so it’s really important for individuals to define what’s important to them and understand that exercise is not one in the same, and different exercises do different things. 

So, studies tend to be interchangeable in the definitions they use, because sometimes it’s hard to measure if an individual is doing a certain exercise, but we know we can track all of the activity they do throughout the day. I do feel like more recent studies have tried to pinpoint different types of exercise — walking and aerobic exercise versus things like resistance or other modalities like yoga or tai chi — but again, the struggle is if we get too narrow in our studies then we give very narrow recommendations. So it’s important for individuals to understand both and also to understand how to leverage both. 

Jamie DePolo: If I’m hearing you correctly, it sounds very short, the condensed version, that exercise has a plan and goal, and physical activity is just the rest of the stuff you do. 

Sami Mansfield: Exactly. Absolutely. 

Jamie DePolo: I’m curious. Are there statistics on how many people with metastatic disease exercise or how much they exercise? 

Sami Mansfield: Great question. The first would be, how many people with metastatic disease exercise? I don’t think we truly know. We do know that all individuals with a breast cancer diagnosis, about 20% are meeting the exercise recommendations for any individual diagnosed with cancer. And those recommendations are 150 minutes per week of moderate exercise or 75 minutes per week of vigorous exercise, plus 2 times a week of strengthening and flexibility or stretching. So one thing we do know is it has been proven to be safe and effective for individuals with metastatic disease to meet those same exercise recommendations as someone that has an earlier stage type of cancer. 

And I think that it’s really important to know, that just because you have stage IV disease and your cancer has moved into another location of the body, you still should strive to meet those exercise recommendations. Where I think the barriers come in is what is the right kind of exercise to do, and how do I adapt my exercise based on my needs, which is of course, excitingly what we’re talking about today. 

Jamie DePolo: I think I know the answer to this question, because I think the benefits of exercise for people with metastatic disease are going to be similar to the benefits of exercise for anyone diagnosed or not of any stage, but are there any special things that exercise can do for people with metastatic disease? 

Sami Mansfield: I absolutely believe there are a handful of things that individuals that are going through stage IV cancer should know. I think number one, providing them something that they can control. Even though the exercise may need to be adapted for a side effect or other barrier, it’s still really important that there is a piece of information and a resource that an individual going through cancer treatment with stage IV disease can control to improve how they feel every day. And of course, as we discussed, exercise, I believe, is one of those pieces. 

As an example, we measure patients in the clinical world based on their performance score, or how much they can accomplish in their day to day. And having a higher performance score is really important when patients are being assessed for something like clinical trial. So I believe that not only will we improve lifestyle and the ability to maintain independence and other activities that’s important to that individual, and reduce other side effects, [but] that the higher we can keep their performance score, the more eligible they are for any potential treatments coming down the line. Because once that performance score changes, then they may not be eligible to get on a new treatment drug should it become available. And I think that’s really important for people. 

Also, exercise is so adaptable. There’s so many different types of exercise that do different things, and exercise can be modified, in my opinion I would say easily — granted I have a little bit of a different knowledge base. But typically we can find exercise for nearly anybody with any barrier. So it might be chair-based exercise or water-based exercise or bands or body weight. It doesn’t really matter. I think that’s very empowering for somebody when they’re really trying to come up with a plan of exercise that fits into their life. 

Jamie DePolo: I kind of want to get into specific exercises that might be best for people with metastatic disease. But I’m also wondering, does that depend on the type of treatment someone is having, does it depend on the location of the metastatic cancer lesions? So if you have lesions in your bones, are you limited to what you can do? Is bodyweight exercise, is that not good? If you could help us out and share your knowledge in that area. 

Sami Mansfield: Absolutely. It certainly does depend on the individual, where their function is at, where they are in their treatment, or perhaps surgeries or side effect and symptom management. So I really encourage people — and not only individuals I work with going through treatment but other fitness professionals — to take into account four things. 

What is the disease type, stage, and status? So, individuals that are going through stage IV that might have metastasis to the lungs and bone, that is part of the factor in developing an exercise prescription. 

And then we talk about where they are from a disease or treatment related [standpoint]. So an example, they might have lung mets, but those lung metastases are small and perhaps don’t have a huge impact on their cardiovascular function, or maybe they have tremendously compromised function. It really depends on the individual. 

And then from there, we talk about, more, preference. So what are the patient goals and preferences? I usually ask a patient to choose a top two to three. Is their goal to improve their strength and daily endurance? Is their goal to improve their body composition or adapt to a specific side effect such as neuropathy? What is it they really want to accomplish out of their exercise program?  

And then also the fourth thing is, what are the barriers? So again, are there side effects such as neuropathy that are causing balance challenges, and perhaps having them do a lot of standing exercise doesn’t seem feasible or holding a barbell over their head doesn’t seem feasible. Do they have access to a gym? Do they need to exercise at home? What are their barriers? 

So those four factors, for not only the individual but the person prescribing the exercise, are really important, and that’s how we really come up with a plan. So it is a little bit more in depth, but I think that’s the important piece when we’re talking about metastatic cancers, we need to take these things into account, and they will likely change as time moves forward. 

Jamie DePolo: I wanted to ask sort of a related question. Are there certain exercises that you feel can be good for anyone with metastatic disease, are there — and there may not be, I’m really curious — are there a few basic either stretches or movements that you think anyone can do that you think would fit in any plan? 

Sami Mansfield: I think there’s really three things that are really key to exercise and where I feel it’s safe and effective when we have the right stimulus. Number one would be some form of a chair sit-to-stand, also known in the exercise world as a squat. Because everybody is going to need to use the toilet, get out of bed, you know, get their socks and shoes and pants on. So having the ability to have those muscles strong is really key, and no matter where the metastasis locations are it’s still a very safe and effective exercise. 

Improving the core or the center of the body is another really important and underutilized exercise and can be done as simple as sitting at the edge of your chair, throwing a timer on, and saying, “Ok, I’m going to sit here for 20 to 30 seconds at a time, using my muscles. I’m not leaning on the back of the chair, but I’m really engaging the center of my body.” That’s going to help everything from walking to turning a corner or carrying a purse or a child.  

The other thing that I really encourage people to do is to continue to be able to lift their arms all the way overhead to a full extension. That’s of course known as a shoulder press in the exercise world, but it’s really important for activities like washing your hair, or putting a coffee mug on the top shelf, or being able to reach your arm in full extension if you’re reaching around the seat of a car, etc. So a great way to do that is to sit on a chair if that’s more comfortable or stand against a wall, put your arms at 90 degrees, and then work on stretching your arms all the way overhead, so that the inner part of the arm is close to the ear. And you’ll realize that maybe you have compromised posture or haven’t been working those muscles due to surgeries or treatments that those muscles get really tight and then lead to a lot of other concerns orthopedically like shoulders, etc.  

So no matter where your location of metastases are, those three exercises done even every day, will make a huge difference in mobility and function, and anybody can do them safely. 

Jamie DePolo: If somebody’s having cancer-related pain, and I know a lot of people with metastatic disease do, especially if they have metastasis to the bone or they’re on aromatase inhibitors and they have joint pain, how does the person tell the difference between the cancer pain and, say, any exercise-related pain or soreness? And at the same time, should people with metastatic disease, should they, like, feel the burn, you know, otherwise you’re not doing anything? Is that an appropriate goal for somebody with metastatic disease? 

Sami Mansfield: Absolutely! I think one of the biggest misconceptions is taking an individual that has metastatic breast cancer and automatically defining them as weak, because we know that the treatments and also other side effects like not feeling well and being more inactive lead to muscle loss and deconditioning. So even though they might be weaker, it isn’t really related to their muscle mass other than they’ve lost muscle. 

So going to your question of feel the burn, I would say absolutely. And the reason why is, having a background in cancer exercise, I look at the physiology of what we’re doing, right? So one of the biggest goals for my individuals I work with is I want them to reach their goal of gaining strength and muscle mass. And so that burn that they feel, that short-term burn, that lactic acid, shows that those muscles are being worked. That muscle soreness that lasts about 2 to 3 days is called delayed-onset muscle soreness, that comes from creating small tears in the muscle due to workload, and those tears are the signal to the brain that I need to make those tissues stronger. So just because an individual has metastatic breast cancer does not mean that they should be gentler or easy. Because I think we can all agree that cancer is not easy. And so we need to find the right intensity that they feel the burn, but they’re not doing so much that they’re feeling sore for multiple days.  

So going back to the first part of your question, that achy burning feeling during exercise is good. That’s lactic acid. Feeling sore for about 2 to maybe 3 days if you do an intense workout is normal. If you exercise and you’re feeling sore for 4 to 5 days after, I would really encourage you to bring your intensity down a little bit and focus more on frequency rather than one bout of intense exercise. 

What’s most problematic and where we get concerned is when pain felt is like shooting, searing pain that feels like joints are catching or feeling like someone is stabbing you in a muscle or a joint. That’s concerning and should always be avoided. It isn’t always cancer related. Remember, when there’s a lot of deconditioning, the joints are having to take a lot of that load and sometimes the joints aren’t strong enough. So sometimes it’s back off a little bit, try to start back at a little bit less intensity. But I certainly feel that going for the burn and that soreness is completely relevant and extremely beneficial — even with stage IV cancer — is very crucial. 

Jamie DePolo: That’s very good to know. I guess the takeaway from that is stabbing, burning, shooting pain is bad. If you have gentle, achy soreness in your muscles, that can be good. 

Sami Mansfield: Yes. Absolutely. And a lot of individuals report that more exercise reduces that ongoing pain from drugs such as aromatase inhibitors or achiness people might feel such as during the winter. So again, I would just encourage people to think about both of those things and perhaps log how they’re feeling after exercise so they can identify those pains. And they might be able to see a certain exercise may not work with them physically, and they can adjust that over time. 

Jamie DePolo: Do you, I guess I’ll use the word prescribe, different exercises for different treatment side effects? So I know fatigue, we get a lot of comments on our discussion boards about fatigue as a side effect, we get bone and joint pain as a side effect of treatment. If somebody wants to exercise with a goal of alleviating those things as opposed to change their body composition, are there specific exercises you recommend? 

Sami Mansfield: You know, interestingly, I would say that the number one exercise that’s recommended actually covers a lot of the main side effects, which is resistance training. So, resistance training is simply overloading the muscle. So for a lot of individuals listening to this podcast, sitting and standing out of a chair multiple times may feel like overload. And then for another group of individuals, that may not be super challenging. They actually need to add physical resistance such as holding on to a weight or another object. 

But again, going back to your primary question, fatigue, number one side effect, is in large part due to deconditioning. The way that I describe it is, you go through life and you build up this really big engine. And so maybe you’re driving a normal car, and you build up an engine that can haul a big pickup truck and a trailer. And you go through a cancer experience and you’re still hauling your truck and a trailer, but your engine is now a small, little European car, right? Yeah, a lawnmower! But you’re still hauling along your trailer, right? So we really need to build your engine. And so a lot of times, even when I started in my career, we would always recommend walking. And what we started to discover is walking didn’t really improve your engine, and walking is the same muscles that you use for your activities of daily living.  

So if somebody is already having to struggle with all of those activities that they need to do every day in their life, I tell them stop walking. Don’t worry about that right now. Let’s build your engine by doing resistance training. That will improve your fatigue over time, and then we can bring walking and the cardiovascular benefit back in, or we create a resistance training plan that’s a little more functional and maybe a little bit more high intensity. 

So, in large part, most exercises that we recommend and I prescribe are based on resistance training first, because we need to recruit large muscle for those benefits, like you mention, fatigue, and metabolism, joint pain, etc.; core training because it’s the basis of everything you do; and then as somebody is doing better and their energy is becoming higher, then I will add resistance training in. Or if they have a goal, say, to walk or run a 5K, then I would add resistance training in. But really the number one thing that we need individuals to focus on is resistance training, for sure. 

Jamie DePolo: I want to go a little bit deeper into fatigue, just because it is the number one side effect. A lot of times people have said to me, “I am so fatigued, I can’t even think about exercising. I can’t get off the couch. I can’t get out of bed. I can’t walk to the kitchen.” I know this is probably a little bit more psychological than actual physical exercise, but how does somebody motivate themselves, or how do you motivate them, when they’re in that state where they just don’t think they can do it? 

Sami Mansfield: Which is the most common state, right, just mentally and physically exhausted. I think the most important thing is individuals need to realize you don’t need to start with trying to hit those recommendations of 150 minutes per week, and really think about these really great small doses. We call them exercise snacks.  

Here’s a really great tip. Every morning, spend a minute sitting at the end of a chair or even the edge of your bed. Just sitting up straight. Because even though that doesn’t feel like, “Oh I’m exercising,” you’re actually exercising muscles that you need to support you in everything that you do. So 1 or 2 minutes at a time is a great place to start. Doing that multiple times per day makes a much greater impact and is much more attainable and sustainable than trying to go hit the gym for 20, 30 minutes or more. 

So starting with smaller doses is great. Starting with seated exercise is really great. People say to me often, “Sami, seated exercise?” And I say, try it. Even for me, if I’m sitting down and I’m having to isolate, you can’t cheat and use your legs. You really have to have strength, and it’s hard, right? So it’s something that you can grab a set of small soup cans even and put them by a chair in your dining room, and you’re going to go to your chair and you’re going to do one exercise 10 times and you’re done.  

I think those truly attainable little exercise snacks, done frequently over time, are going to build up more energy and muscle mass that will contribute to doing longer and larger exercise programs. But starting with small doses is very underutilized. One minute makes a big difference, and getting up and walking to the chair, and just sitting in that hard-backed chair, will give you more endorphins than just lying in bed.  

So I think that people need to understand it doesn’t need to be a lot of exercise to make an impact, because endorphins kick in very quickly. 

Jamie DePolo: Oh, that makes really good sense, and that seems absolutely attainable, as opposed to, “I’m laying here. I’m exhausted. I can’t even think about 120 minutes of exercise.” So that sounds great. 

Sami Mansfield: No. Absolutely not. And even, people say, “What about exercising in bed?” And while that’s not bad, I feel strongly that creating a space to exercise, whether it’s one specific hard-backed chair that’s in a different place and creating your exercise space and having the physical movement of your body there, is ideal rather than lying in bed. Focus on the bed or your couch for your relaxation, but then move yourself to that different location for a few minutes as your exercise because that’s also going to train your brain, and that’s really important, especially in individuals with stage IV. Absolutely important. 

Jamie DePolo: So how does someone who’s been diagnosed with metastatic disease, how would they start to go about to create an exercise plan for themselves and stick to it? Is it something that a person can do on their own? Is it better to kind of meet with a trainer or somebody who specializes in exercise for people who’ve been diagnosed? What do you think?  

Sami Mansfield: I think that’s probably one of the loaded questions. I think it really depends on the individual. I would tell any individual that would ask me, start with just the things that you know exercise-wise that you can start doing in the place that has the least amount of barriers, at home or maybe it’s with a buddy, or however that may be. I certainly there are great trainers and individuals and professionals even throughout our world that are phenomenal at helping. But sometimes just waiting to find that right person isn’t always feasible because there really aren’t that many that have the knowledge that especially an individual with metastatic disease really needs. So sometimes we need to empower people to just try some of the basic things, not worry so much about the cancer, and just try to do an exercise every day.

I really encourage starting a journal or other tracking system of ‘I did this and this is how I felt,’ or you know, ‘this hurt,’ etc. Because we really need to be flexible that change is really almost always around the corner when you have metastatic disease, because you might be waiting for a scan, going through a treatment, or changing medicines. So having something that you can adjust and adapt is really crucial. I do think that if you can find somebody in your community that has the knowledge or at least the understanding and empathy and communication, it’s great to work with somebody because that will be another built-in motivation and some positive encouragement that we all need and really do well with. 

Jamie DePolo: Now I know you specialize in working with people with cancer — perhaps not necessarily metastatic disease, but you might — and is there a professional association for that? How does somebody find someone who has that experience? 

Sami Mansfield: So the American College of Sports Medicine has a cancer exercise trainer qualification and certification. And it’s really the most rigorous that exists here in the United States anyway, where an individual has to have another base certification as a clinical exercise specialist or personal trainer and have, I believe, it’s 500 hours of experience before they can even test to be a cancer exercise trainer. 

But where the organizations are still lacking and working really on a daily basis is, even though there’s a lot of information on certain types of cancer or treatment side effects, the prescriptive side is where most of us have to learn from hands-on. So going back to your comment earlier, I’ve been doing this for almost 16 years, so my experience in the metastatic space is much greater than somebody that’s only been doing it for 2 years in the community setting and maybe doesn’t have that experience. But it doesn’t mean that they’re a disqualified person because there’s not a really great place to find somebody.  

But I would really start with something like ACSM and look up the trainer directory and find out if there’s somebody in your area or somebody that might be able to provide some virtual coaching and have that access and knowledge that you can work with as well. 

Jamie DePolo: Now, do treatment centers have exercise programs for people with metastatic disease at all? I wasn’t sure. I know they’re starting to build more things into various treatment centers to make them more one-stop shops, but I wasn’t sure if exercise was part of that. 

Sami Mansfield: Interestingly, I still feel that most treatment facilities large and small are still really focused on support groups. That’s definitely not something that’s wrong, however I don’t see as many of the exercise groups as I thought I would see here in 2019. But I do think that some programs in some different cancer centers have them. 

My thought would be most of them are going to come from individuals like myself that are kind of on their own… They develop their own company or business based upon this and then partner with a cancer center. I definitely have not seen a large-scale program that I’m aware of that is an exercise program for individuals with metastatic, and especially metastatic breast. 

Again, the support communities are pretty dominant, but they don’t really have exercise as a regular part of what they do. They might meet, and I’ve gone to different groups to speak, but I don’t really see them.  

I would encourage individuals also to look at the rehab setting. Oncology rehab is becoming increasingly utilized and more multidisciplinary. We do work with a lot of hospitals that are clients of our company, and a big partnership we bring in is oncology rehab into the clinical setting and making sure there is a nice multidisciplinary approach for the best outcome and quality of life for the patient. 

Jamie DePolo: So if somebody does find a trainer that they might want to work with and maybe the person isn’t as experienced as you are — I’m assuming that, because your experience is quite extensive — are there a few questions that you would recommend a person with metastatic disease ask the trainer just to make sure that they’re aware of what metastatic disease means? 

Sami Mansfield: Absolutely. I think a couple of things that are really important: Find out if that trainer has any experience, not only in the metastatic space, but also think about patients that are going through cancer treatments including chemo and radiation, or have experience with individuals with other types of advanced cancer even if it’s not metastatic breast, or other chronic diseases. Because I think it’s important to find somebody that realizes that there’s not going to be a short course and then… the light is going to come on and we’re done. Because, really, metastatic breast cancer is ongoing.  

So you want to find the right individual that can be adaptable and understand that this is a long-term approach. But they also need to not be fearful of working with you. So I would really have the individual ask the trainer after this conversation, “What would you do with me? What do you think are the right types of exercise for me,” and try to get a feel for that person and how comfortable they are about perhaps trying different things with you, asking you different questions. 

The biggest thing that I would tell an individual when you’re looking for a trainer to avoid is if they start putting you on an elliptical or a recumbent bike only and that’s how they train you. Find somebody else. Because you want somebody that’s going to push you in the right way and encourage you to get strong, not just baby you and keep you in a bubble. 

So that’s probably my biggest advice, although anecdotal, is certainly really empowering, and the individuals need to be a little bit pushy on that. 

Jamie DePolo: You want somebody who’s not going to be afraid to push you, but who knows how to push you properly. 

Sami Mansfield: Absolutely, absolutely. 

Jamie DePolo: Finally, to wrap up, I know that oncologists like to be aware of what’s going on in their patients’ lives. So how does somebody talk to their oncologist about exercise? Because I was at a session at the San Antonio Breast Cancer Symposium last December, and there were a couple studies presented on exercise. And all the oncologists were saying, “Well, yes, we need to almost prescribe exercise for our patients.” But all of them admitted that they don’t, and they don’t talk to their patients about exercise. So how should a patient bring that up? 

Sami Mansfield: I think a patient should, when they walk into their doctor, tell them, “I really want to exercise.” The conversation with the oncologist should be really around if there’s any potential concerns, such as a patient might have cardiotoxicity from certain chemos or other side effects, that the oncologist needs to talk through with the patient.  

A great example is someone that has lung metastases. So, they might be experiencing some shortness of breath. Now, there’s going to be some shortness of breath feelings with exercise, but I feel that if an individual talks to their oncologist about it, they can have a good conversation about what should that shortness of breath feel like? When should you be concerned about a feeling being too much or should it be concerning? I think that conversation is going to be good for both sides, because the oncologist is going to be more encouraging, but they want to have the clinical side. And then the patient will feel more empowered to push themselves a little bit because they know that the oncologist is watching them clinically. So I think that’s really important to know. 

I agree with you. I work with so many physicians, they’re so supportive and they want all of their patients to exercise, but they come up to me and they’re like “Sami, can you just tell them what to do, because I don’t know.” I think that’s so relevant in that oncologists… they admit that they don’t know. So we do need more oncology exercise professionals, which I hope will continue to grow here. I think it’s great for the patients to have that communication piece with their doctors because the doctors will start to notice that these patients are doing physically better and probably emotionally better. And so it’s something that patients can really empower their doctor to prescribe exercise to more patients. 

I think patients are going to be the biggest pushers of this to see this trend shift in the United States. It’s not me talking about it. It’s the doctors that see how their patients do that’s going to really shift how they care for all their patients. 

So I would encourage every individual to be an advocate, because your impact is so huge and so important and will teach your doctor a few things, and I think that’s awesome. 

Jamie DePolo: Thank you so much, Sami. This has been really, really informative. I think this will help a lot of people. 

Sami Mansfield: Thank you so much, Jamie, for having me.