Cancer Treatment Is Over. Now What?

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Ringing a bell to celebrate the end of cancer treatment is a common practice in cancer treatment centers throughout the world. It is meant to be a joyous symbol to mark the end of what can often be a grueling experience. But for some people with cancer, the end of treatment produces a confusing set of mixed emotions. Instead of simply getting through the treatment, for them the challenge now becomes how to deal with the future—leaving them to wonder, “How can I put this behind me when it could come back at any time?”

I asked Sara Machnik, writer and cancer survivor, to describe her experience as she comes to the end of active cancer treatment. Here she describes the change that can happen after a diagnosis of cancer:

“Once your perspective shifts from everyday trivial worries to your own mortality, it doesn’t ever shift back, not in the same way. There is no bounce back, back to normal or 'all good now' as people like to often say about me being in remission…To feel the ache of my own mortality like a mild stomach ache that’s always present.”

The safety and comfort of thinking of death as somewhere far in the future is gone, and survivors find themselves wrestling with fear of the cancer returning. Those with cancer that require ongoing treatment wrestle with a similar fear—will the treatment keep working? Is the cancer growing?

Researchers define the fear of cancer recurrence or progression (FCR)¹ as exactly that: “fear, worry, or concern relating to the possibility that cancer will come back or progress.” The fear is common, with more than half of people with cancer reporting at least medium levels of fear of recurrence. Medical teams may unintentionally overlook the emotional impact of the end of treatment—from their point of view, the end of treatment is a marker of success. However, the prevalence of FCR highlights how complicated this experience can actually be.

Here's Sara again:

“Did I take my medication today? My joints feel more achy then they were yesterday … Did my back feel like this yesterday? Maybe I should call my oncologist.”

These types of thoughts are common for people dealing with FCR. In fact, researchers have noticed that being hyper-aware of one’s body is one of main challenges in FCR. A healthy behavior—paying attention to your body—can quickly become unhealthy when it crosses into hypervigilance. A hypervigilant state of mind can easily trigger the stress response system of the body to go into overdrive. For someone who is already worried, the physical sensations of this activated system can be interpreted as a sign of cancer. This leads to more worry, followed by more activation of the stress response system, eventually causing a cycle that can be hard to get out of.

People coping with FCR may also be unsure what a healthy amount of vigilance is. We all hear the messages about the importance of a healthy diet, exercise, and avoiding behaviors like smoking and excessive alcohol use.

Sara describes how much mental space this can take up:

“The fear of recurrence for me doesn’t only creep up on me in the depths of night when I’m alone with my thoughts. It’s very much present in my daily life, activities and decisions. Whether or not I choose to drink that alcoholic beverage or eat that food, not to mention the entire overhaul of products, cleaners and items I use on a daily basis. I think about the effects of every product I interact with or ingest. I am constantly consumed by my calculated risk of recurrence, and I don’t want to regret anything in the future.”

There is no “one size fits all” for managing FCR. Some people may find that it gets easier to manage with time and as they get farther away from treatment. For others, it may stick around for longer. For those who require ongoing treatment or who are “watching and waiting,” it can be an ongoing challenge.

Sarah is finding her way by living as fully as she can:

“Being given this new perspective on life, I don’t want to live in fear to waste my second chance at life. It’s an ongoing balance I haven’t quite mastered yet but I continue to progress, to live in less fear and to focus on things in my life that bring me peace, joy and tranquility. I find myself trying new experiences and opportunities I would have once said no to, I long to experience everything I can in this life. I want to make a difference, leave an impact and a legacy. There is both grief and gratitude that has stemmed from my experience.”

Although there is no way one way to cope with FCR, researchers have found a number of strategies that may help. If you find yourself feeling overwhelmed by worries about cancer recurrence or progression, you might find some of these suggestions useful.

Know your body

Because your body can feel like the enemy after cancer, it’s important to know how to separate symptoms that might be signs of recurrence from normal body sensations. You may become preoccupied with your body, scanning and checking for any little thing that may be wrong. This is not only exhausting, but it can backfire, activating the stress response system and making the picture even more confusing.

If you’re unsure, ask your oncologist what to look out for so you can feel more confident about when to follow up if needed.

Find your triggers

FCR triggers can be internal (a new pain or a fresh worry) or external (scheduling a scan, hearing about cancer on TV). Knowing your triggers can help you get familiar with how you respond. Notice what you say to yourself and what you do in response to a trigger. Does it actually help? For how long? This can help give you a shortcut for what might help.

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How do you cope?

It’s important to get familiar with your habits in coping, as not all ways of coping are helpful long-term. When we’re particularly anxious, we may be more likely to cope in ways that help temporarily but could actually make things more challenging over time.

For example, seeking reassurance from your oncology team, or from friends and family, can be helpful. But notice what happens next: Does it actually help long-term? Or does it temporarily reduce anxiety, only for it to come back with a vengeance? Over-relying on reassurance means that you may never develop the ability to reassure yourself. Reassurance can also be quite generic (“You’ll be fine!”), which may not stick. You may need to develop a way of reassuring yourself that more specifically addresses your worries (“I don’t know if I’ll be fine, but I can live in today.”) (For more ideas, check out this post.)

It can help to think in terms of what’s controllable and what’s uncontrollable. If what you’re anxious about has some parts of it you can control, focus on problem-solving. If it’s uncontrollable, like anxiety about the future, focus on managing emotion. This can look like doing something to help yourself feel calmer, like a relaxation exercise, or doing some kind of physical activity.

Practice living

It can be tough to figure out how to go back to living after the experience of cancer. Things may have significantly changed in your life, and it may take some trial and error to figure out how to move forward. But as Sara noted, it can also be an opportunity to try new things and re-prioritize what’s important to you. With practice and time, this can help make it possible to get to a place where FCR can be more in the rearview mirror.

“I never thought I could exist in a place where cancer doesn’t consume every second of the day. It’s been quite the unbearable climb to get here, but the view has been worth every second of it.”

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