Episode 5 Shownotes - Body Image Changes After Cancer

Hello, and welcome back! This is episode 5. I am really excited to talk to you today. Today we are going to talk about body image. This is such a loaded topic for many people even without the cancer card! Today we are going to look at how changes in body image impact daily life, and how to deal with 3 types of body image changes. The term body image means different things to different people, so I started this week by looking up the official definition of the term. Google describes body image as the subjective picture or mental image of one's own body. Cancer.Net describes body image as how a person views himself or herself. Because of the many physical and emotional changes after a cancer diagnosis, people may experience both positive and negative changes to their self-image. Today we are going to focus more on physical changes. We discussed some emotional changes in earlier podcasts, and will come back to them in the future. Both cancer and its treatment may change how you look. Many people with cancer feel self-conscious about changes to their bodies. Some of the most common changes are hair loss, weight loss or gain, surgical changes, including loss of body parts or scars, and need for an ostomy, which is an opening from the body that allows waste to exit the body into a bag. A colostomy is an opening that empties stool, and a urostomy is an opening that empties urine. Other types of body image change that are physical, but not visible, include fatigue, neuropathy, and changes in cognitive function. In my mind, I see these changes in one’s body as falling into one of 3 types. First are things that likely will change, but will take time. Second are things that you may not be able to or definitely can’t change. The third are things that only you can change. These also often are not quick, but are only under your control, so only you can decide if the time is right or not. As always, I am a doctor, but not your doctor, and none of these suggestions should overrule any recommendations from your primary team. Ok, let’s do this.

First, let’s talk about physical changes that will likely improve, but will take time. These include hair loss, skin changes from radiation, rashes from medications or chemotherapy, fatigue, neuropathy and cognitive changes. Men, we ladies are going to talk hair for now, so feel free to fast forward about a minute here if you don’t really care about how your hair did or didn’t grow back. For the vast majority of people, hair will regrow after chemotherapy. It may come back very different than how it was before chemotherapy, though, and most people have thoughts about that. I have seen people whose hair was curly come back straight, and those with straight hair come back really curly. I remember a young woman when I was a resident, who had super straight hair before chemo, and after, it was ringlet curls. She, like most of us with straight hair, was used to brushing her hair multiple times a day. I know that all of you with really curly hair right now are cringing, knowing what I am about to say. When she brushed her hair, it stood out around her head like the white fluff on a dandelion gone to seed. She was able to laugh about it, but she told me that it felt like that really awkward phase in middle school when you start caring how you look, but really have NO idea how to make yourself look good yet. We all had that phase. I am an 80’s girl, graduated highschool in the late 80’s, so you know for me, it was trying to make my super straight hair big, and also some unfortunate blue eyeshadow. But back to post cancer hair – for many people, the new hair may come in gray when it wasn’t before, and this may make you feel so much older. It may be thinner, or less compliant with your plans. These things seem to many people who haven’t ever had cancer like they should be nothing to worry about – how many times have you had someone say, I bet you are just glad to have hair. It seems to me that most people on some level are glad to have hair, but at the same time, they grieve the loss of their old hair. Here, I advocate patience and being aware of your thoughts. Recognizing that you miss your old hair and that is NORMAL and OK is key here. You can’t change the new hair overnight, but you can lean into missing it and accept that it is ok to miss it. On a quick aside, I always tell patients that it really makes things look better if you trim up your hair as it grows in. See the hairdresser, have them trim out your ears, keep it from looking shaggy, and you go from “poor cancer patient” to “super hip girl” who can rock a short haircut. If you have had radiation to your head, it is more variable. It may grow back, or there may be patches that don’t grow back, or it may remain sparse and thin permanently – in this case, you need to decide whether you want to live with what you have, or go to a wig permanently. Whatever choice you decide is the right one, but you should make that decision, and then move on. Either love yourself with the hair that isn’t what it was, or choose a wig and decide you will love that for the ease of always having your hair look good. One of the things that I have been surprised by in the past – some of my African American friends seem to always have great hair. One in particular always looks like she just left the salon. I commented once and she laughed and told me, silly girl – it’s a wig. Of course it looks great every day. She looked awesome, and I had no idea. Her hair had really thinned, and she decided to go the wig route and rock it. I am an oncologist, and think I recognize whenever a person is wearing a wig, but she fooled me! We all have that option, but you have to decide to do it, then find what you love about it and focus on that, instead of using it as a reason to beat yourself up and hate on yourself. In addition to hair, skin changes happen commonly after radiation. For most people, redness and blistering are better by two weeks, but tanning follows the redness just like it does after a sunburn – this can take months to slowly fade, and some people have permanent darkening. Chemotherapy and some types of immunotherapy are more likely to give rash than redness. The same is true with skin changes as with hair changes. It is common to have them, you may not love them, but focus on being aware of your thoughts and feelings and keep in mind that it will get better. Once you get to about 6 months after treatment, the skin is likely where it will stay, and then you need to work on accepting it and not hating yourself for it. I will go through how to work on not hating these parts of ourselves a bit later in this podcast. Next in the list of will get better is fatigue. This will naturally slowly improve after treatment completes, but I do really encourage people to try to get back to their precancer baseline in terms of activity. I find that people never feel as good as they did pre cancer if they do not regain the same level of physical fitness. This clearly is something you have to work up to. You can’t just jump back into doing what you did if you did very little for more than 3 months. Start slow, work your way up, listen to your body and your doctors, consider asking your team about PT if you need help getting moving again. Neuropathy is pain or numbness in the fingers and toes. It is much more common after chemotherapy than radiation. I put this in the category of “likely will get better with time” but it is possible for it to be permanent as well. Neuropathy can really affect quality of life. It is a physical sensation, and that part you can’t change. But, if you don’t add an emotional component to the pain, you can avoid adding insult to injury. If you are angry about the pain, then often you resist or react to that anger, and that leads to things like overeating, overdrinking, yelling at family or friends, etc. We talked a lot about that in the first podcast. Many times, neuropathy can be helped with medication, so that is one thing I definitely recommend you talk to your doctors about. In our practice, we have a Life Care group that helps manage the side effects of cancer, and its treatment, and I have found that to be such a benefit for our patients. Neuropathy is something that may take months after treatment is complete to get as good as it is going to get, so patience is key here as well. If you have it, and find you are reacting to it in an emotional way, check out podcast 2 to help with the emotional reaction to the pain. Cognitive changes are common after chemotherapy, and have a community derived nickname of “chemo brain”. This also usually improves with time. Same for this as all others, patience and compassion for yourself while it is impoving. This is one place where Type A people really like to beat themselves up. They know they “used to” be able to do things like remember all of their appointments, or go to the store with no list. Now they can’t, and they use it as an excuse to berate and criticize themselves. I can’t tell you enough times – that is NOT helpful. It doesn’t bring the brain back on line quicker, it just makes you miserable while your brain is healing. And let’s be clear – it is healing, just like your body is healing. Have compassion for it.

The second type of body image changes are most likely permanent. These include permanent skin and hair changes from radiation, scars, removal of body parts and ostomies. It is unlikely to impossible that you can change this, and these things are often a huge challenge for people in terms of their happiness in their appearance. This is a place where I think we need to work on slowly changing our beliefs about how we look. This is NOT a quick process. We cannot go from “I hate my body” to “I love my body” overnight. It is a stepwise process, and requires work and commitment. This is one of the things life coaching is perfect for. The way you do it is twofold. First, you have to become aware of what thoughts you are having about your body. This is by paying attention to the running dialogue in your head. You need to pay attention to the thoughts you have about your body, and also the thoughts you have about other people’s bodies that are “better” than your body. Podcast 2 will help you with finding your thoughts. Once you are aware of your thoughts, you will make a list of thoughts that you will use to go from “I hate my body” to “I love my body”. You use these thoughts as a ‘ladder” to get from one place to the other. I am going to share something I am REALLY self conscious of, and how I am working on this in my life. It actually totally freaks me out to say this on a podcast lots of people will listen to, like saying this makes me a failure and less as a woman. I have cellulite on my legs. For years, I hated to wear shorts or a bathing suit, because I thought it was awful. My brain told me that was all people saw when they saw me in a bathing suit. I am STILL working on my feelings about my legs, but here are the thoughts I am using in my ladder. I started at I hate my legs, and worked through some people have cellulite and think their legs are ok. Some people have cellulite and still like their legs. Other people might think my legs are ok even though they have cellulite. Other people might like my legs even though they have cellulite. It is possible I could not hate my legs even though they have cellulite. I sometimes like my legs despite the cellulite. I often like my legs despite the cellulite. I almost always like my legs. I sometimes love my legs. I practice awareness when I see people with perfect legs and feel jealousy. When you work on your ladder thoughts, you write them out, and start with the first one. When you think, my mastectomy scar or colostomy or surgical scars looks awful, you have awareness, and then tell yourself, nope – I am thinking I think my scar looks awful, but not everyone hates their scar. When you really believe this, you move to your next step. I hate my scar, but it is possible that not everyone would hate it if I showed it to them. When you believe this, you move to the next rung. Personally, I don’t know if I can get to I love my legs. I have worked on this for a while, and am at most of the time I like my legs. One of the exercises I have done that has really worked also is what I call the pick 3 of 4 challenge. In this challenge I made up for myself, I pick three things I LOVE about myself, and the one thing I hate. Then I really think – would I swap out one of the things I love for this thing I hate? This may not work for everyone, but when you think you would always have something you dislike, and you just swap one for another, it sometimes makes you feel a bit better about the things you don’t love. For me, I think I have a smart brain, a pretty face, nice hair and crappy legs. I can’t have everything perfect, so I imagine that if I was able to choose, I would have to give up one of the things I do have to get perfect legs. I ask myself, would I want to give up one of the 3 things I do really like? The answer is always NO. Then I remind myself that almost every woman has something she hates, and she is thinking how jealous she is of other people’s hair, skin, breasts, brains, face, legs, nails or whatever. You also can work on things you love about your body, and ask your brain to focus on what you do love instead of what you don’t. Remember, fair game to try to choose a better thought. Resisting, reacting and avoiding the feelings those thoughts create are off limits, tho! Some patients tell me their scars are how they know they are a warrior and it makes them feel fierce. I love fierce – it is such an empowered feeling. I know that there are women who choose no reconstruction, and LOVE their bodies just as they are after cancer. This movement is called the “Go Flat” movement, and there was a really great article in the New York times about it in 2016 – I will post a link to the article on the FB page if you want to check it out. Just a little laugh – this should not be confused with the flat earth movement, that also comes up when you google Go Flat – that is the movement of people who truly believe the earth is flat, and are trying to convince others of this as well. Go figure.

Finally, we get to things that can change, but only you can change them. The part of body image that I think this applies to most is weight. Many people gain weight after cancer treatment. This is multifactorial. In part, it can be due to changes in metabolism or hormonal status. It can be due to changes in patient’s activity levels. But most often, I think it is from buffering to avoid negative emotions related to their diagnosis. While you are working on getting back to the fitness level, you can also begin to work on allowing emotions instead of eating to stuff them down. Only you can change your weight, and you have to decide if you want it badly enough to allow the competing urge to eat and drink to feel better in the moment. One of the quotes I have heard from Corrine Crabtree, the facebook guru who helps women who have more than 100 pounds to loose say is that Food only fixes one thing, and that is true physical hunger. Anything else you are trying to fix with food will still be there 20 minutes after eating the food. So true. I am planning a monthly podcast focused on weight loss topics, because it is so common after cancer treatments and am working on an online weight loss class for cancer patients as well, so stay tuned!

But, a brief summary, if you really want to work on weight loss – I am a huge believer in intermittent fasting, and I learned the technique from the book The Obesity Code by Dr. Fung. I really believe that cutting out flour and sugar reduces urges to eat and makes this work of allowing urges much easier. These two things, intermittent fasting and cutting out the vast majority of my flour and sugar have led to me losing 40 pounds and keeping it off. Plan ahead what you are going to eat, and then stick with the plan you made. I plan all of my food for M-F on Sunday, and then S/S on Friday morning when I know a little more what the weekend plans are. I have one joy eat per week, which is one serving of whatever I want, chosen at least 24 hours in advance. Unlike my mentors, I have chosen to NOT follow a protocol on vacation, and I get back on hard core as soon as I get home. I accept that vacations mean a 5 or more pound weight gain, and I increase my fasting when I get back to get it off quick.

Ok – in summary today. Changes may be temporary or permanent. Allow yourself time to adjust and be patient with the changes in your body. Accepting a cancer diagnosis and undergoing treatment may change your life. It takes time to adapt, so treat yourself with compassion and kindness. Let me repeat that – your brain, nerves, and body can’t go back to normal any quicker than they are, so have compassion for yourself and love yourself along the way, instead of hating yourself for this. For many, it is helpful to talk with others who have been in similar situations. I have a private group on the facebook page where survivors can join, and we can talk about these things. If that is not for you, then 1-on-1 conversations or attending support groups with people who have been in the same situation can provide understanding and hope. As hard as it is, I really encourage a bit of humor about your situation – anything you can find to laugh at about it will help you deal better.

If the changes in your body are permanent, use ladder thoughts to become more accepting of the changes. Take each step along the ladder, practice it until it is second nature and your “go to” thought, and then move to the next thought in the ladder. If it is something like weight that only you can change, decide when you want to move forward, and fully commit. For June, I am going to be starting a weight loss challenge on my Facebook page. I have only gained a bit with the pandemic, but am not being as focused and consistent with my decisions as I was before this, so you can join me in getting on track, as I post each day telling you what I am doing to stay on track – there is motivation in a group, so lets attack this part of our body image together!