Food Anxiety and Cancer, with Julie Lanford, MPH, RD, CSO, LDN and Debra L. Benfield, MEd, RDN, LDN, RYT

August 28, 2019
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In this podcast, registered dietitians Julie Lanford and Debra Benfield will discuss food anxiety before, during, and after cancer treatment, including potential causes and healthy ways to address food anxiety at any stage of treatment.

Transcript: 

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ASCO: You’re listening to a podcast from Cancer.Net. This cancer information website is produced by the American Society of Clinical Oncology, known as ASCO, the world’s leading professional organization for doctors who care for people with cancer.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. Cancer research discussed in this podcast is ongoing, so the data described here may change as research progresses.

In this podcast, registered dietitians Julie Lanford and Debra Benfield will discuss food anxiety before, during, and after cancer treatment, including potential causes and healthy ways to address food anxiety at any stage of treatment. Julie Lanford is a registered dietitian with Cancer Services in Winston-Salem, North Carolina. Debra Benfield is a Master’s Level Nutritionist as well as a Registered Dietitian Nutritionist and Licensed Dietitian Nutritionist in Winston-Salem, North Carolina.

ASCO would like to thank Ms. Lanford and Ms. Benfield for discussing this topic.

Julie Lanford: Hello. I'm Julie, and I have been a registered dietitian for 13 years, and almost all of that time has been spent helping people facing cancer. Currently, I work for Cancer Services, a community non-profit in Winston-Salem, North Carolina. I have a master's degree in Public Health. And I'm a board-certified specialist in oncology nutrition, as well as being a registered dietitian. And I write cancerdietician.com. And today, I am here with my friend and colleague, Debra Benfield.

Debra Benfield: Hello. Thank you for having me. So just a few sentences about me, my name is Debra Benfield. And I am also a registered dietitian. I have been in practice about 30 years. And most of my time has been working with folks who have a complicated relationship with food and their bodies, all sorts of disordered eating, as well as actual eating disorders. And I'm also a yoga teacher, so I bring in somatic practices or practices that include the body and breath, along with helping people normalize their relationship with food. So that's what we'll be talking about today, I think.

Julie Lanford: That's right. So our topic today is food anxiety, which is an interesting topic, I think. Having worked in oncology, it's sort of something that, I guess, maybe I refer to on occasion. But the interesting thing is that we don't really have a definition for it in a clinical kind of environment. And so having Debra here, with so many years of experience working with this sort of complicated thing, I wanted to get her thoughts, in terms of, how do you define food anxiety? Or what does that mean?

Debra Benfield: So when you first asked me about this, we did talk about the fact that it is a term that doesn't exist in the world. So I think we've created a lot of anxiety around food. I think our current cultural conversation around food is full of fear and anxiety and very dogmatic belief systems that create more emotion. So the actual definition of anxiety, as I looked it up, is "distress or uneasiness of mind caused by fear." And I think if you apply that to food, it makes perfect sense. That is what I think I work with a lot in my practice, is a sense of distress or uneasiness of the mind, that is actually caused by fear around food choice, which is a very uncomfortable reality. Because we all know we need to eat many times, every day. We can talk about what that feels like. But that's a pretty hard place to be in the world. Because food, in my opinion, is something that brings pleasure into our lives and gives us a sense of energy. And we're going to talk a little bit more about the mental health aspect of how we feed ourselves to nourish ourselves. So that's what I think now exists, as far as food anxiety.

Julie Lanford: Great. So in an oncology setting, there are sort of 2 areas that I see, maybe 2 groups—I  don't know what you would call it—regarding food anxiety around time of diagnosis or during treatment or after treatment. So the 2 types, for lack of a better term—1 is when cancer and its treatments cause difficulty with eating or digestion, and therefore that makes mealtime or post mealtime stressful. So some examples on that would be, if somebody has had part of their GI tract removed—so part of their colon—or when they have an ostomy bag, or they just have a change in their bowel habits, where whenever they eat, they have to be located close to a bathroom. Or they have side effects from certain foods that cause them to not want to be in public or that make them afraid that the food they're eating is going to cause a problem. Or if they're having nausea from their cancer treatment, they're afraid to eat because they don't want to have an adverse effect that makes them feel bad.

And so that's 1 challenge that I think people have, especially around having to be located proximate to a bathroom. I know that that keeps people—either they have to time their meals a certain way, based on what kind of activities they want to do for the day, or they cannot choose their favorite activities because of their digestive issues. So that's 1 area.

And then the other sort of group of cancer survivors that I work with, who have, I think, challenges with food anxiety, is around the idea that they're afraid that something they've eaten has maybe influenced the growth of their cancer. So that there are certain foods that are toxic that caused cancer to grow, or that there are certain foods that they absolutely must include enough of in order to "fight off the cancer." And so those are 2 areas. And Debra has also worked with several of our clients here at Cancer Services, and I think, if you want to give some examples of people that you've worked with in the cancer groups and some of their anxieties.

Debra Benfield: Sure. One of the things that I think about is a very striking kind of guilt that people start to associate—in my opinion, it's much more focused around sugar, right now, as far as what people are hearing from sources I'm not so sure about, on the Internet, that actually tell our folks that sugar is causing or contributing to their cancer. And many people start to, maybe without conscious awareness, start to feel guilty because they know that they've enjoyed sugar in their lives. And they feel like they have actually caused their cancer. So I try to help people realize that that's probably not a rational thought pattern, that that's probably a fear-based irrational thought, and does give folks something to focus on, something to feel like they might be able to control, knowing that they don't have as much control over their diagnosis.

But they do kind of have a false fear-based belief that they can actually have a sense of control of their lives if they just eat a certain way. And, again, it may not be a conscious thought. It could be just something that you start to feel, that you need to white knuckle and control this aspect of your life, when other things feel like they're swirling out of control. So I try to help people realize that they did not cause their cancer, that the guilt that they feel with food may be even more unhealthy than the actual food itself, that the actual guilt and anxiety that arises is, in my opinion, more unhealthy. Because I look at the whole person. I think mental health is a very important aspect of a person's life. So to try to help people feel less guilty and more a sense of knowing that they can create ease with a more moderate way of thinking about how they make food choices and nourish themselves. So I try to ease up on the rules and the dogmatic rigidity that people start to have, which the rigidity itself can create its own disorder.

Julie Lanford: Right. And I think for a lot of the people that I work with, both online and in real life, sometimes, their fear around food pushes them to the point of restriction in a way that is not healthy, nutritionally. So their intake of certain nutrients is inadequate because their food restrictions are so many. So someone who thinks that sugar is a problem, that it causes cancer, and somehow they start limiting all types of sugar, including healthy carbohydrates. If they completely eliminate all grains and all fruits, which I've had some people come into me having done that, I am very concerned about their ability to adequately nourish their bodies, especially during treatment, recovering from treatment, those types of things. So sometimes, it really does come to that point where their concern and their food anxiety is so strong, that it changes their behaviors in a way that is detrimental to their health, which is exactly the opposite of what they're trying to go for.

Debra Benfield: Right. Right. It presents its own problem.

Julie Lanford: Yes. And we can't help them nourish themselves if they can't get past some of these emotional fears around certain foods. So interestingly, I think that there are several things that come into play, so like you were mentioning, wanting control, especially earlier on in diagnosis. I've had people call me on the phone, and basically, they've been diagnosed, but their treatment regimen isn't figured out yet. And that seems to be a time of sort of crisis, where they want to do whatever they can. And so they're grasping on to the food thing because they don't have any other answers at that point. And it seems to be a time that they're very anxious and they drastically change some of their eating habits, and also have incorporated a lot of guilt.

I think that well-intentioned advice-givers, which we all have those in our lives, but it seems like upon diagnosis of cancer, the advice-givers come out of the woodwork. And they're sending you emails and telling you all kinds of, who knows, legitimate and not-legitimate information that they've heard or read, that oftentimes layers on this guilt, foods to eat or not eat.

They seek out information on the internet, from documentaries, from other cancer survivors, who maybe are giving not so evidence-based nutrition advice.

I think those are some examples, but also caregivers really want to help out, and especially in the case of people who don't feel like eating, caregivers can, I think, add more anxiety to the table, when they want their loved one to eat so badly that they almost guilt them into eating when they just don't feel like it. And that's a whole ‘nother level of, "Well if you don't eat what I made for you, what does that say about our relationship," and all of that. So those are a couple of other things that I don't know what your thoughts are about that.

Debra Benfield: I agree 100%. And as you were talking, I was thinking about relationship to body, in general. I mean, in my opinion, a cancer diagnosis can many times feel like a traumatic interruption to a person's life, as well as if there is a surgery process, or maybe even going through some of the actual treatment protocols, in the experience itself, there can be a sense of anxiety-provoking trauma.

And that, in itself, affects the body's ability to digest. I mean, their digestion is affected by stress and anxiety. So things start to take on their own dynamic. And I think we're going to talk a little bit more, in just a minute, about what to do about that. But I think, considering that your fear can affect your ability to digest your food, your belief about the food itself can create anxiety that can make you even have symptoms, that we've talked a little bit about, about having to be close to a restroom. So trying to drop away from all of the fear and anxiety is not such an easy thing to do. There are layers of complication and also just body itself.

I work, in my practice, and when I come over and work with clients who have a cancer diagnosis here, there's a complicated relationship with body itself, so body shape, body form, thinking that there needs to be weight management at this particular time is a whole ‘nother dynamic. So that the people can feel more comfortable in their bodies, or maybe have the body that they used to have, a relationship with their body that they had before diagnosis. So you can see how this just starts to become more and more complicated through our folks.

Julie Lanford: You know, as healthcare providers, and during treatment, a lot of times, we're pushing people to get enough nutrients in, to keep their weight up, and to not lose too much weight. Because that can adversely affect outcomes. And then sometimes, those same people then create behaviors, I guess, around like, "You've got to eat enough." And then, at some point, you can stop doing that. It's like you're constantly having to learn and adjust to what your body's needs are at whatever that time is. And then, there's other people who are told during treatment, "Well, we're concerned that you have too much weight.” And maybe a physician has told them they need to lose weight. And that, after facing a cancer diagnosis, having your doctor push you around losing weight, it just can add so many other things on top. And so I think that's another area where somebody takes on some of these thoughts and behaviors that pushes them towards anxiety.

Debra Benfield: And I'm sitting here also remembering so many stories around taste changes. And the more I talk about this, the more I feel great empathy for somebody going through this. Because there's so much going on at one time around what could be, and I would like for it to be, a much less complicated, more simple part of life, when life already feels complicated enough.

Julie Lanford: It should be less complicated.

Debra Benfield: It would be nice.

Julie Lanford: And any way we can lower the anxiety. So I think that actually is a good transition to some of our practical recommendations around this. Because our listeners could be from all kinds of different places. But I'm certain that for pretty much everyone, there is something that we've talked about that's resonated.

So some of the practical tips that we've thought through, for the people who are dealing with those physical side effects of treatment, whether they need to be near a bathroom, whether they are having bowel movements multiple times a day, or maybe on the opposite side, they're having constipation that's causing them debilitating pain, I think the first thing for those people is to maintain a constant conversation with their medical team about how they can manage it, so that they can do the things that they really want to do in life. So it may be keeping a food log and figuring out trigger foods and avoiding those around times that they have activities. It might be using medical management, so for people who have multiple bowel movements a day, they might need to use Imodium. And their medical team can help them come up with some kind of regimen. The same thing if someone's on pain medication, and constipation is causing them issues. They need to constantly be in contact with their medical team to figure out what is the solution to deal with this.

And then, for the people who have caregivers, early on in my career working with cancer patients, I came up with sort of this guideline for caregivers who are feeding loved ones. And I encouraged caregivers to know that you are loving your person by preparing them food and offering it to them. And whether that person eats the food or not, you need to tell yourself you're doing a good job. So the caregiver's job is basically to, maybe remind the person it's been a couple of hours and maybe they want a snack, and is there something they can give them. They can prepare the foods that they think will be well received. But it is the person facing cancer's job to decide what and how much they're actually going to be able to put in their mouth and swallow, and to try to separate that behavior of actually eating from impacting their love relationship.

Debra Benfield: I think there is an anxiety, a feeling of pressure around eating or not, is its own anxiety. I mean, choosing to eat and what you're going to eat and how much you're going to eat is a personal choice. So when somebody intrudes into that, however well-intended, there tends to be an emotional reaction. And that's uncomfortable. And I think it's unnecessary.

Julie Lanford: Yeah. And we don't want to ruin marriage relationship while we're at it, or a friend—

Debra Benfield: Right. Any other time—right.

Julie Lanford: —Friends who are trying to help feed you. So that's my caregiver and care receiver tip.

Tips on how to deal with unwanted advice. So I actually have several talking points that I give my patients around how to deal with it. But I think the most important one that you can always remember is to have 1 easy statement that says, "Oh. Thanks for your concern. I'm working really closely with my medical team. I'll bring this by them." And then change the subject. So that's kind of—you can receive their intention to give you assistance without internalizing their advice. So kind of let it come 1 ear and out the other and send it on its way.

Debra Benfield: Nice.

Julie Lanford: Tips on how to evaluate nutrition information. So I started writing cancerdietitian.com in 2007 because I had so many clients coming in asking questions and not knowing where to turn to get legitimate information. I will say, most information that you read on the internet is not true. And just because someone said it or wrote it or put it on Facebook or Instagram or wherever, does not make it true. And sometimes, you need to control the flow of information. So be very cautious about where you're going, and also know kind of who you trust. So, hopefully, a lot of people are trusting their care providers. And I usually say, if you stick to things like university or legitimate treatment websites, then you're probably going to be good. But I would stay away from celebrity advice, Netflix documentary advice, and then people who don't have any credentials whatsoever. Health coaches, nutrition coaches don't count as legitimate credentials for giving nutrition advice.

Debra Benfield: And I trust you, Julie, completely.

Julie Lanford: So do you have other, for your clients with eating disorders or disordered eating—how do you help them with their seeking out of nutrition information?

Debra Benfield: Yes. It's loaded. There are just thousands, literally thousands, of books, and not to mention internet accounts and Facebook accounts and Instagram accounts that are focused on weight management. So I highly recommend not following accounts that are about that. My favorite resource is a book called Intuitive Eating. And I don't know if that would be of interest. But I think it's very helpful, when it comes to trying not to fall for actual belief systems around food that lend themselves to feeling like there's a list of foods that are good and a list of foods that are bad. Because those kinds of lists will create a dynamic within you, as the reader, where you feel like you are being bad and being good when you eat those foods. And then maybe even that you are good or you are bad, which is where shame lives. And I don't think you want any additional shame or guilt.

So if you see an “Eat This, Not That” list, I would see that as a red flag. And I'm all about finding a way to listen to your own instincts around what helps you feel good. How do you feel when you eat certain foods and tune into what your body is letting you know about what feels supportive and nourishing versus making me feel sluggish or if you pay attention—and Julie mentioned keeping a log—you'll notice that certain foods really do help you feel your best, and certain foods don't contribute to that. So I would trust that you listen to your body way more than the food list. Yeah.

Julie Lanford: Yeah. It's funny because I developed an email program. And what people wanted was, what to avoid, what to eat. And so I was like, "All right. I should call it that because that's what people want." And then I realized, "Okay. I'm going to call it that, but that's not really—I don't have a food list." So what we went with was, “what things to eat most of the time,” because I don't believe you have to avoid any particular foods. It's kind of more about how you're feeling, and what your body kind of needs at that time. So it's funny to balance that, what you think you want and actually what you really need.

Debra Benfield: The way I think about that is like, head down and gut up. You kind of have to listen to your body, and there is just this information that you know that is more helpful for you. And it can't be true all the time. I mean, you get to have treats just because there are certain foods that actually just help you feel happy, like maybe childhood favorites. Yeah.

Julie Lanford: Yeah. Your soul foods.

Debra Benfield: It's a good way to put it. Yeah.

Julie Lanford: Okay. I think the last thing kind of on our to-do list is how to know when you need professional help. Because, at least what I see with my patients coming in, is that sometimes they've actually had a kind of a significant amount of disordered eating behaviors prior to a cancer diagnosis. And possibly, the cancer diagnosis has just exacerbated the problem. Or it could be somebody who had a perfectly healthy relationship with food, they get a cancer diagnosis. They have treatment. Their body is reacting very differently to the foods that they historically had really enjoyed before. And now, all of a sudden, everything's turned upside down. And I think, in those cases, there is some pretty clear times when you will want to seek out a dietitian or a therapist, who can help you work through those things. So what kinds of kind of red flags or things do you notice would be something you'd suggest somebody to seek out help.

Debra Benfield: So disordered eating and eating disorders is based in thought patterns that can contribute to behaviors. And if you find that your thoughts are highly rigid, that, in my opinion, is something you may want to seek help with. If you can't just be social. I mean, I know we've talked about how complicated that can be. But if you feel like you have to take your own food to social occasions—and I'm sure there are events where that's necessary, at some point. But if that's the way you always, literally always feel, like you can't just trust food that other people prepare, then you may have crossed over into a lot more rigidity than is healthy for you.

Julie Lanford: And not because you're allergic to the food, but because you think that it's toxic to your body.

Debra Benfield: Right. Yeah. So I would consider rigidity of thought and behavior to be one major area that you want. I would encourage flexibility as an antidote, to try to let yourself relax and try things that you may feel are on some sort of list that is bad, just to see if you can be flexible and encourage more comfort. If you remember that the definition of anxiety is distress in your mind, what brings you more ease? So anything that creates rigidity of behavior and thought pattern. And then the other piece, I think is guilt. If guilt becomes debilitating to the point that you just feel like you're being bad way too often, so that you feel sad and maybe even depressed, I think that if you've noticed that your anxiety and depression is higher, then I think you need some support.

Julie Lanford: And probably a large majority of people who've faced a cancer diagnosis, I think would benefit from counseling and helping to cope with everything that's going on. I think something else that comes to mind is, if you're in a situation where, when it's time to eat, if you can't identify something that you can nourish your body with, and so then you sort of go without or have something that's not really a complete full meal, that would be another red flag. Because there's always a good choice. There is always a best choice. No matter what situation you're in, you shouldn't feel like you have to go without.

Debra Benfield: Right. If you've worked yourself into a true corner, where your list of foods that you can eat is so short that you feel like you eat the same thing over and over and over and over again. That's problematic.

I wanted to say a couple of things about the fact that not eating enough, and not eating enough for your body's needs, or eating frequently enough, can in itself cause anxiety. If the human body is under-nourished, the brain is the organ that's affected first, and anxiety goes up. So just the process of not eating frequently enough and enough for you, can in itself cause anxiety and some sadness.

Julie Lanford: So I think, in summary, we both want to feel like we leave our listeners with less anxiety and more hope and positive feelings. So my take home for all of my clients is to remember that staying well-nourished does improve your body's ability to tolerate and respond to treatment. And food is neither toxic or magical. And so, if you feel like your stress regarding food and nutrition is overwhelming, then I wouldn't be shy to seek out for help. But I'd also like to just remind you that there is no toxic food. There's no magical food. And I want you to have less anxiety around food choices.

So Debra, it's been really awesome sharing this time—

Debra Benfield: Thank you. Me too.

Julie Lanford: —and your expertise. But if you had one take-home message that you would share with listeners, what would it be?

Debra Benfield: Mine is very short and sweet. And it's kind of a summary of what Julie just said, and that is, you can't mess this up. You can't mess this up. It's just one meal, one snack at a time. Continue to try to listen to your body. You can't mess it up.

Julie Lanford: So there you go. That's awesome. Thank you so much for being here.

Debra Benfield: Yeah. Thank you. Thanks for inviting me.

Julie Lanford: Yeah.

Debra Benfield: Obviously, we could keep talking.

Julie Lanford: Forever.

Debra Benfield: Yes. Lots to say.

Julie Lanford: All right. Take care.

Debra Benfield: Bye.

ASCO: Thank you, Ms. Lanford and Ms. Benfield. Find more podcasts about nutrition and cancer at www.cancer.net. And if this podcast was useful, please take a minute to subscribe, rate, and review the show on Apple Podcasts or Google Play.

This Cancer.Net podcast is part of the ASCO Podcast Network, a collection of 9 programs covering a range of educational and scientific content offering insight into the world of cancer care. You can find all 9 shows, including this one, at podcast.asco.org.

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