Fear of recurrence
Watch time: 24 min
Fear of recurrence, or fear of the cancer coming back, is one of the most common worries among people with breast cancer. This fear can have a powerful effect on the quality of your life. Sage Bolte, PhD, LCSW, CST, chief philanthropy officer and president of the Inova Health Foundation, explores common triggers and explains what you can do manage your feelings and take control of what you can to live fully beyond your fear.
Sage Bolte, PhD, LCSW, CST, is Chief Philanthropy Officer and President of the Inova Health Foundation in Falls Church, Virginia. She joined Inova 15 years ago as an oncology counselor and most recently served as executive director of Life with Cancer and Patient Experience for the Inova Schar Cancer Institute. She is nationally known for her work in sexual health and cancer and is a respected leader in the field of oncology social work. Read more.
I still deal with the fear of recurrence. Even six years after my early-stage breast cancer diagnosis, I struggled balancing staying vigilant and advocating for myself with my doctors with not jumping to the conclusion that every ache or pain could be cancer. But I also try to focus on things that are in my control. I prioritize my emotional and physical health. And over the past few years, I consistently have eaten and well exercised. I get enough sleep, and I try to reduce stressful events and people.
My fear of recurrence impacts me unconsciously. It tends to invade my dreams and thoughts and leads to a restless night of worrying and stressing. I manage my fear recurrence feelings by giving myself grace. It is OK to have these thoughts and feelings.
It is liberating to hear the doctor say: “I’ll see you in six months.” And at the same time, I was filled with fear. I would be lying if I said to you that I didn’t experience fear of recurrence. However, it’s also a choice for me to visit fear of recurrence and not stay there. What helps me is to think about what I can do, the changes that I can make. How am I sleeping? What am I eating? How am I moving my body? Am I being with people that I enjoy being with and having fun?
Sage Bolte, PhD, LCSW, CST (01:58):
Hi, I’m Dr. Sage Bolte. And today I have the great privilege of being with you in a conversation around fear of recurrence. As you heard from other survivors, this is such a common experience. The worries that bubble up, the triggers that can exacerbate our fear or our focus on: Is it coming back? Is that headache something different? Oof, I noticed an ache or a pain. So common, yet together, we’re going to talk about ways that you can manage fear of recurrence. Being diagnosed with breast cancer is a life-altering experience and often an emotional roller coaster for so many. I think of the many women I’ve worked with over the years and the feelings of anxiety and feeling scared. The stress of going back into the world after being done seeing their doctor as much constantly come up. The questions around, did they get it all?
What am I going to do if I don’t see my team? Will it come back? Am I always going to live with this fear? How do people do this every day?
That feeling of anxiety is so significant. And actually when we think about anxiety, it’s so physiological. I want to take a moment just to explain what anxiety is. In the center of our brain, there is the amygdala that is that fight or flight response. That is good. We want that to be there. We want, if a bear is coming at us to know: go run. That amygdala sends all kinds of messages to our sympathetic and parasympathetic nervous systems, which creates this cascade of physiological reactions that does a whole lot to our body, our heart races, our breathing changes. Our thoughts may loop or race, noises may sound louder or become like a tunnel.
We may notice that we’re having harder times catching our breath. And I want to give an example. Let’s say you were walking down the hallway and in the distance you hear a scream. You stop, you notice that your heart is racing. You’re wondering what is going on. You’re trying to assess: is there something actually wrong? Maybe you notice your heart beats faster. Your breathing is racing. And then you turn the corner and you realize it’s just your child watching a scary movie. And what happens? OK. That danger has been assessed. It’s been ruled out. But that fear of recurrence, isn’t always a danger. We can always reassess or test because it’s these thoughts of anxiety.
So, what are some common triggers? What does anxiety feel like? When we think about the common triggers that create the feelings of anxiety associated with fear of recurrence might be that ache or pain that just hasn’t gone away or.
We’ just popped up. Maybe it’s the anniversary of your diagnosis or the completion of your treatment. Perhaps it’s getting ready or anticipating a checkup, or as many women identify scanxiety, right? If you’re getting regular scans or you have to go in for a follow-up mammogram or blood work, perhaps that triggers that anxiety of: “What are they going to find?” And then media attention. October is a great month that highlights so many wonderful things about the need for breast cancer research and the stories of so many that share their journey with breast cancer. But it also can be extremely triggering for women. So maybe you noticed in the month of October, you’re more anxious or you have greater thoughts of fear of recurrence, or perhaps there’s media attention to a celebrity that had been diagnosed with breast cancer and suddenly you’re wondering, “Am I going to be OK?
Is, Has it come back? Is there something that I should be doing different? Should I call my doctor?”
So, we’re going to talk about some practical ways that you can cope with this very common fear through diet, nutrition, lifestyle, and one of my greatest tools: our brain. How do we help change our thoughts to help, again, change the way we feel? Let’s assess what you have control over. When we think about things that create anxiety, what can we do? What do I have control over? The things I do, the thoughts I respond to — not necessarily the initial thoughts I have, but the thoughts I respond to — and the people I invest in. Those are things we have control over. We have control, oftentimes not always — especially with menopause — of our sleep, our diet, what we put in our body and how it helps manage our mood, right?
limiting or completely getting rid of caffeine and alcohol. And then we know that movement, yoga exercise, hiking, walking — just moving — can really help manage anxiety. Another thing we have control over is the people in our life. We know that when we’re around people who carry a lot of anxiety or carry a lot of worry or have a lot of negativity around the world, or just in general life, that can be draining, and it adds to the challenge of managing our own anxiety. So having control over the things that we can control the things in our environment, our thoughts, our behaviors to those thoughts, and then the people around us is so important to pay attention to.
So how might you identify when fear of recurrence is actually getting in your way and when you might need to get support? First, a couple of them, and there are many, but I’m just going to name a few. If you notice that you’re avoiding calling people back, you’ve isolated yourself more, that the fear of recurrence is actually keeping you from living, keeping you from going to doctor’s appointments, or maybe you’re scheduling even more than you had in the past. Is your sleep being interrupted, waking up with worry, waking up with fear? Do you have an overall sense of dread? Have you noticed if depression or anxiety have increased, or if you were experiencing depression and anxiety prior to your breast cancer diagnosis, has it not been better managed? Are you hyper-focused on a symptom or a feeling? I mentioned earlier, if you had a headache or an ache, are you immediately going to: “It must be back.”
And how long until you can change that thought or challenge it are you spending on that thought? That’s information on, maybe I need some support or help. I love the internet. I think there’s a lot of great resources that we can get from the internet. But if we are using Google MD to diagnose ourselves or look up symptoms, it can create more fear, not abate fear. Call your doctor if you have concerns. And then another thing to be aware of is if you’re not talking about cancer or you’re avoiding conversations about it. And I know there may be some who think, “I just want that behind me” — that is completely OK. But if you’re driven by not talking about it, because it brings up such anxiety or such fear, then it’s something to take a deeper look at. And are you struggling with not being willing to look into the future, not being willing to plan more than three months out?
That’s actually a common thing that women report like I’m looking three months to three months. And in that first year or so post-treatment completion, that’s not an uncommon behavior, but are you filling those three months with things that are things you look forward to doing, things you enjoy, people you enjoy? Or are you just waiting, holding your breath, watching the calendar pass? As we think about healthy coping and how we get out of some of those behaviors that I just spoke about that keep us trapped in that fear of recurrence — again, thinking about what a healthy lifestyle might look like: “Can I adapt some of the things I’m eating? Can I increase my exercise? Am I assessing the people and things I’m putting in my life? Am I giving myself time and space to feel the feelings I need to feel?” Because we can be fearful and hopeful at the same time. We as humans are complex, amazing beings that have the capacity to feel more than one feeling at a time, so we can have fear and we can be hopeful.
But if we only give fear the attention, if we only give anxiety the attention, we’re missing out on the opportunity that we can also be hopeful. So, can we use a positive voice? You know, I mentioned earlier, one of my favorite tools is our mind. Our brain. Thinking is powerful. So, offering ourselves something positive, like “I can manage hard things. It’s OK to not be OK today, but I’m going to do something for myself that makes me feel good. I can be hopeful in my future. I have a team of clinicians that are keeping their eyes on me, and I can trust them. I don’t need to try to be in control of every medical decision because I have a team I trust that I can go to, to help reassure me.”
Could you think about placing affirmation notes, near common places you go?
So, for me, it’s bathroom mirror my computer on my refrigerator door. Maybe somewhere in your car, those encouraging thoughts of I am capable. I am strong. I can do hard things. I have all the resources I need to manage difficult times. Incorporate the positive thought, and think about deep breathing during a common activity to build it as a routine. So, for example, stoplights, common occurrence, at least where I live. And if I can take that common activity and use it as a prompt for me to offer myself a positive thought and take a deep breath, there are many times during my day where I am going to be forced and eventually build it as a habit to put a positive thought in my head — one that encourages me when I’m feeling anxious and to take a deep breath, which helps center and ground us. So, maybe there is an activity that you do commonly every day.
Maybe it’s walking, maybe it’s again, red lights, whatever that might be. Try to identify that and build that into your routine, where you offer yourself a positive thought that counters anxiety, or fear, and take a deep breath to ground yourself.
Another tool I often men mentioned on managing many things is seeking out support. If fear of recurrence has gripped you and you aren’t finding ways to cope or manage or let go of it. During the majority of the day, having a support group that’s professionally facilitated can be a great sounding board. It can offer you support in that fear and allow you to be with people who get it — who aren’t’ going to minimize it, but who are going to encourage you. And always it is helpful to connect with a counselor who can help teach you some additional tools on managing anxiety, how to manage that fear on a day-to-day basis.
So, instead of it being a daily thing, it becomes maybe a weekly thing and then a monthly thing. And then soon you’re not feeling as gripped by it.
There is no shame, no harm in talking to your physician about being assessed for medications that can help. You know, anxiety, again, is a very real thing. It’s a common thing in our society. And sometimes our brain chemistry just needs a little help to help balance it out so the anxiety isn’t as gripping and we have the ability to implement the tools that we learn in order to be successful.
And I always love telling people, you know, turn on music that makes you dance. Find things that make you laugh. Dancing, music, and laughter are incredible medicine for anxiety and fear. They distract you. They take you to places that make your body feel good and can be so helpful.
In fact, I’ll often say most of us now have smartphones. Most of us have access to the internet. Most of us look at things like on YouTube. Find a couple of YouTube videos that just make you belly laugh, because there’s nothing that breaks that anxious cycle than having that brain stopped and pivoted towards something that makes you laugh.
I want to teach you a tool that you can use as well. You can do this while you are sitting on the couch. You could do this while you’re sitting over the stove, making yourself a meal, It’s called box or square breathing. And it’s very simple. You breathe in for four and out for four. So, I’m going to show you how this works. We go in, out, out.
Now when you do that in a square — and it’s hard for me to do my fingers at the same time for counting to four in out — notice that my breath was slow in and slow out. You want to keep that same pace. Box breathing, which has tons of physiological benefits, also has psychological benefits because it slows you down. It allows you to feel more grounded. It allows you to catch those thoughts that are maybe creating more anxiety for you and reframe or refocus.
In addition to the breathing, trying five minutes of gratitude every night. Naming the things that you’re grateful for, again, can really help — when we’re feeling anxious — help us shift our thinking, shift our focus. And one of the greatest things about gratitude journals when we’re feeling anxious is to go back and look at last week’s or the week before and remind yourself that there are positive things happening in our life every day. There are things to be grateful for. As simple as “I woke up feeling positive,” as simple as “I was able to just have one cup of coffee instead of five.” And the grateful note of that would be, “I am grateful for my one cup of coffee.”
I know that you have heard from the survivors about how they implemented strategies to manage their fear. In addition, again, to what we can do related to our own thoughts, what we have control of, people we surround ourselves with, the food we put in, the lifestyle choices we make, we can also think about the space we create. Is there a space in your house, a space in your office, a space in your car that you can identify that you have control over, hat is your quiet space, that allows you to sit and offer yourself positive affirmations, sit in quiet and reframe? Perhaps it’s sit in prayer or in meditation. Is there an opportunity for you to find those spaces? Controlling your space allows you to feel again like you have a place to go. When you leave it, shake it off and leave it there.
Also, another technique: Consider spacing out your doctor’s appointments if you’re worried about “I’m not going to be seen by somebody for another year.” Well, we often have more than just medical oncology appointments, right? We have follow-ups with surgeons, follow-up with radiation oncologist, our GYN, maybe we have our primary care. Could you consider spreading out each of those doctor’s appointments to every three to four months? Then you have a trusted professional who’s laying eyes on you every three to four months. Perhaps that might give you some more confidence and allow you to say, “I’m going to see somebody in a couple months. I can wait to see them and ask them my questions then.” Again, if you have a symptom that is persistent and consistent for three weeks or longer, certainly you want to alert your medical team, but if it comes and it goes, and you notice that’s connected to anxiety, that’s something to take to your medical team, talking to trusted counsel.
As I mentioned before, support groups, people that you trust, your faith leader, a therapist, or a healthcare provider can be incredible sounding boards. And again, they can help you identify what maybe you’re overthinking, what should be a real concern or what you can let go of. There’s even the opportunity to say to your best friend, “Hey, I’m feeling really anxious today. Can I just give this anxiety to you for the day? Can you hold it for me? Because I don’t want to carry it today.” Right? And our friends love us. They can say, “Absolutely. I can do that.” Or can you think about taking that anxiety and putting it literally in a box. If you have a shoe box, put that anxiety, that fear in that shoe box. Say, “Thank you for the information, anxiety. Thank you for the information, fear. I don’t need to have you right now.”
And then can you put that box up in your closet where you keep it? You know it’s there, so if you ever need it, if you really need to pull it down and take it out and look at it and explore it, you can do that. But do you have to hold onto it? Can you put it away? And then ask those you love how they can help and support you. They can’t read your mind, so they’re going to need to know what works for you. Is it checking in with you every day? Is it distraction? Is it offering you funny quotes throughout the day to make you laugh? It’s OK to ask your friends for what you need. It’s OK to ask your loved ones, your family, for what you need, because again, they can’t read your mind, but they may be a great tool and resource to help you cope with fear and anxiety.
I’ve mentioned moving. Not just exercise and movement, yoga — all incredibly helpful for managing mood — but movement dancing, as I referred to. Could you create a playlist that makes you want to dance? So easy to have, right there on your phone. So not only can you have a video, you can go to that makes you laugh, but can you create a playlist that makes you smile, that makes you want to dance, that lifts you up, that brings good memories. Are there a couple of people in your life that make you belly laugh? And can you identify those people as people that you need to reach out to during the times where you’re having more anxiety? Put it on your calendar. If you know that a triggering month for you is the month you were diagnosed, then be intentional. Put those people on your calendar to reach out to. Put them on your calendar, and ask them to lunch or dinner, put them on your calendar and ask them to text you through the month. Those are things you have control over. You know, we always have a choice of which direction we look. We can look behind us and look in the past. We can look beside us, which doesn’t really get us very far. We can do our best to keep looking straight ahead, not with blind optimism or carelessness or ignoring symptoms, but with a reminder that worry only creates more worry and that worry costs us a whole lot, emotionally and physically.