Cancer Affects More Than Your Body: How to Cope at Every Stage

In the oncology scene, we often talk about cancer through the language of medicine, centered on diagnosis, staging, treatment, and remission. Yet for someone learning how to live with cancer, the experience goes far beyond what is discussed medically. A diagnosis changes the reality for the patient, that spans a biopsychosocial range. It changes how a person feels about their identity, as well as how they see their body, relationships, and the future that they had once envisioned in a healthy self.

Alongside the physical demands of treatment, patients may also be navigating unfamiliar emotions and uncertainty. These challenges can also change considerably throughout their cancer journey. What feels difficult at diagnosis may differ when the patient undergoes treatment or when they are living with cancer longer term. This process of re-learning how to navigate a new version of yourself at each stage, and how to manage the emotional and social turmoil of a cancer diagnosis, all within the constraints of cancer treatment, is neither easy nor straightforward. Thus, a crucial part of cancer care involves understanding the connection between physical and psychological health. How should patients make sense of this connection in a structured way, and what support actually helps?

In this interview, Dr Jennifer Kilkus draws on her clinical experience in psycho-oncology to explore emotional well-being, psychological support, fatigue, activity, and self-compassion across the cancer experience.

What do patients and families underestimate the most about the relationship between physical and psychological health during cancer?

Dr Kilkus: We’re often given the message that the mind and the body are separate from one another. But health is not just about the physical body - it’s biopsychosocial. That means that each person’s health is a combination of psychological factors (mood, how you cope, how you think about things, what health behaviors you engage in), social factors (your social support, your environment), and biological factors (genetics, age, your previous health history, the type of treatment you have).

Cancer and cancer treatment can affect all of these things. That makes people who are dealing with cancer more vulnerable to struggling both physically and psychologically. Think of your physical health like the foundation of a house. If there are cracks in the foundation, everything else can become unstable. Cancer treatment is demanding on the body, and symptoms like fatigue and pain are common. And even though those symptoms have a biological cause, each patient’s experience and recovery timeline can be influenced by psychological or social causes.

Fatigue is a great example of this. Here’s a common scenario: It’s so normal to be exhausted from treatment and to feel frustrated by that. That frustration can drive some unhelpful ways of talking to yourself about it:

• “What’s the point?”
• “I should be able to do more.”

“What’s wrong with me?” While those are totally normal thoughts to have, they can be unhelpful if they aren’t redirected. Left unchecked, these thoughts might lead to hopelessness or withdrawal. You might start doing less, both because of fatigue and because you’re feeling hopeless. Having fewer positive activities in your life can then cause your mood to get worse, which might also mean your fatigue gets worse as you do less and less.

That doesn’t at all mean that these symptoms are in your head, or that anyone is at fault for their symptoms if they are struggling. It might just mean you may be stuck in a cycle that might make these symptoms feel more intense, or there are obstacles that can get in the way of recovery.

What misconceptions about mental health during cancer would you most like to challenge?

Dr Kilkus: There are a lot of misconceptions about mental health during cancer. One of the most common things I hear is people feeling like they are failing because they are struggling. But it is typical for people to struggle - and of course that's the case. The diagnosis itself is scary and uncertain. Cancer treatments are harsh. There is so much uncertainty and disruption over a lot of different aspects of life. Struggling is completely normal under those conditions.

Another common misconception is that you have to stay positive during cancer. That is complete nonsense, and “mandatory positivity” can even be harmful. Psychology researchers know that avoiding or pushing away normal human emotions in response to difficulty just tends to cause them to rebound even more intensely - or to come up unexpectedly later down the road. It’s important to allow yourself to be a human being during this experience. If it helps you to be positive, that’s great. But if that feels too hard or forced, that’s okay too. Aim for balance: Allow the difficult emotions, but avoid getting stuck in them. If you find yourself spiralling, try to shift to an activity that can help you “change the channel” of your mind if it gets too much.

What is psycho-oncology?

Dr Kilkus: Psycho-oncology is a specialty that focuses on managing the emotional, social, practical, and physical challenges of cancer. It covers a wide spectrum of challenges: from temporary upset while adjusting to a diagnosis, all the way to more serious psychiatric or physical issues that can come up during cancer.

How can psychological support help patients navigate the physical and emotional demands of cancer?

Dr Kilkus: Psychological support can help people navigate the many areas of life that are affected by cancer. This can look like treating psychological symptoms such as anxiety and depression, assisting people in adjusting to what has changed because of cancer, helping with treatment decision-making, learning skills to manage cognitive or physical challenges, support around communication with family, or simply having a listening ear to help you get your mind around your diagnosis. Wherever you are on the spectrum from “mostly okay” to “completely panicked”, psychological support can help.

Recovery from cancer is much more than successfully treating the disease. Good cancer care is focused not only on managing the cancer, but also on making sure you’re able to live with or after a diagnosis with the best possible quality of life.

How do emotional challenges and coping needs tend to shift during active treatment, the transition after treatment, and longer-term survivorship?

It’s common during active treatment to feel fearful and uncertain. There is a lot of unknown, and when things are unknown, it’s easy for our brains to fast-forward and focus on the “what ifs?” One way to help redirect your mind is to focus as fully as you possibly can on the “here and now.” When your mind is spinning, try focusing your five senses on just what’s happening in the moment. What can you see, hear, touch, smell, and taste that’s happening right here, right now? Your mind will bounce right off again - that’s completely normal. Your job is just to “catch” it as early as you can, and bring it right back to the present. With practice, it can get easier and easier to redirect your spinning mind.

Transitioning to life after treatment often feels like being “pushed off a cliff.” All of a sudden, you’re expected to return to life as per “normal,” often while feeling anything but normal. You may also find yourself occupied by fears about cancer returning - and no one can give you any guarantees about the future. You might find it helpful to develop a way of talking to yourself that can be kind, encouraging, and focused on what feels most important in the present. After all, none of us know what the future holds - but we are still here today. This might sound like, “I don’t know what will happen in the future, but I can focus on today.” Or, “I’m doing the best I can; I’m still recovering.” Anything that feels supportive, helpful, and takes some of that pressure to be “normal” off.

If you’re going to be managing cancer longer-term, like if you’ll need treatment for the foreseeable future, that probably means your life has significantly changed. You may have experienced a lot of loss. This kind of loss can be tricky, because there isn’t a formal way to recognize it, like we have with the loss of a loved one. And the losses may be harder to define - the loss of yourself as a ‘healthy’ person, the loss of a future without having to think about cancer, the loss of a body part, or your hair. It’s important to find ways to grieve those losses, so that grief doesn’t get ‘stuck.’ You might find it helpful to develop some “rituals” around grieving the losses you’ve had. Have a “funeral” for your pre-cancer self. Write a letter to what you have lost - to say thank you, or express anger, and say anything that has been left unsaid. Maybe try painting or drawing to express the colors and shapes of grief. It doesn’t matter what it is, as long as it gives you an opportunity to honor what you have lost.

For people living with advanced cancer or cancer as an ongoing condition, what can help them cope with uncertainty that may not have a clear endpoint?

Dr Kilkus: Living with advanced cancer means living with a lot of uncertainty, including an uncertain future. That can provide permission to connect to life in a way that reflects what is valuable and meaningful to you. I don’t mean this in a social media-worthy “bucket list” kind of way - but instead in a quieter, genuine way. What is most important to you in your life? How can you make life reflect more of what really matters to you? You don’t have to know what’s around the next corner to prioritize what you care most about.

This often requires accepting what is instead of how you would prefer things to be. Acceptance is a hard word - it can often be confused with resignation, or being passive about life. In reality, it just means being willing to accept what’s happening here and now, without all the internal struggle of “not wanting” things to be the way they are. That leaves more time and energy for adjusting to life as it is.

You’ve highlighted the importance of self-compassion. What does it look like in everyday life for someone with cancer?

Dr Kilkus: The concept of self-compassion can be tricky, because somewhere along the way, people have misunderstood it to mean “self-pity,” being lazy, or even giving up. We have this idea that we have to motivate ourselves by being critical or demanding, and we’ve got to “toughen up” in order to get through hard things. But self-compassion just means treating ourselves the same way that we would treat someone that we really care about who is suffering. How would you talk to a friend or a loved one who is struggling? Are you able to do the same for yourself?

To put this into practice, try to think back to whether you’ve ever had a really great teacher or coach. They probably didn’t give everyone a pass, nor were they overly critical. Instead, they were encouraging, motivating, and kind. Use this as a model for how you talk to yourself – think encouraging coach, not screaming drill sergeant. This might sound like,

• “This was really hard today. It’s normal for me to be struggling.”
• “It’s okay for me to rest; my body is going through a lot.”
• “I’m doing the best I can.”

I absolutely love the work of Kristen Neff, a researcher who has studied self-compassion for over 20 years. Her website has many free, evidence-based resources for self-compassion practice if you’re interested in exploring more.

Research increasingly supports structured exercise for certain cancer populations. How can physical activity support both psychological and physical well-being during and after cancer treatment?

Dr Kilkus: In my opinion, it’s not important to distinguish the physical and psychological benefits of exercise. Because the benefits are biopsychosocial, they truly go hand-in-hand. Whether you’re exercising to reduce cancer recurrence, boost your mood, spend time with other people, or reduce fatigue, you’ll benefit from exercise.

How can patients approach physical activity when fatigue, pain, or anxiety makes exercise feel overwhelming or impossible?

Dr Kilkus: Figuring out the “sweet spot” of rest and activity during and after cancer treatment can be tough. What you want to do and what your body feels capable of doing can sometimes be completely different things.

It’s common for people to have a “good” energy or pain day, and then go all out to try to do as much as possible. But then that might mean the next day (or days!) you’re completely wrecked. Over time, you might find that these “good” energy/pain days are fewer and farther in between. This is called the “Boom-Bust” cycle of activity and is pretty common when people are trying to find the right level of activity during and after treatment. This cycle was identified in the fields of chronic pain and chronic fatigue, but researchers have found that this “boom-bust” cycle also happens during cancer treatment and recovery from treatment. The cycle happens when people repeatedly push themselves beyond their max when they have something going on physically that makes it difficult for them to recover. Over time, that can start to drain the body’s ability to recover even further. Fatigue gets worse, limiting activity even more, and making it harder and harder to bounce back. Every time you push beyond your max when you’re recovering, you’re spending energy that you don’t have and getting into an energy “debt.”

Pacing yourself is so important as you’re recovering. Pacing has two purposes: it conserves energy for activities that matter to you, and it helps you plan such that high-demand activities are mixed with lower-demand activities and periods of rest.

Activity pacing requires you to pay close attention to yourself so that you can get familiar with what activities drain you the most. “Activity” doesn’t just include what you’re doing physically. Activities that are emotionally demanding or use a lot of brain power can be just as draining. You might also find it’s helpful to temporarily let go of activities that cost a lot of energy but don’t give a lot back.

It’s really important to manage expectations when you’re trying to manage fatigue and pain. Let go of “should” (“I should be able to do more”) and focus on adapting to what your limitations are here and now. Try to find some compassion for yourself through this. Self-compassion reduces the internal struggle around what you’re finding limiting, and that energy can be redirected more helpfully.

When should patients consider seeking professional psychological support, and what would you say to someone hesitant to reach out?

Dr Kilkus: If you’re finding yourself really struggling and you’ve tried to manage on your own, it might be time to reach out for more support. Any symptom that feels like it’s making day-to-day life a challenge deserves professional support. And as always, if you’re so depressed that you’re worried about your safety, act on that as quickly as possible. It’s important to remember that needing support is perfectly okay. It’s totally normal for people dealing with cancer to need professional support, and sometimes more than one type of support.

Finally, what is one thing you wish every person facing cancer understood about their emotional experience?

Dr Kilkus: Your experience is your experience. Avoid comparing and judging yourself against how other people with cancer are coping, or comparing to your “pre-cancer” self. There is absolutely no right or wrong way to get through this experience, and struggling is completely normal. Be as kind as you can to yourself through this - it will help you let go of some of that struggle.

This expert interview article is written in collaboration with Dr Jennifer Kilkus and is not sponsored.