The fear of cancer recurrence or progression is simply the anxiety people feel when they consider that a cancer may come back or progress.
Understanding the Fear of Cancer Recurrence or Progression
Older woman hugging husband
This fear is very common. For those who are currently cancer-free (no evidence of disease, or complete remission,) at least 70 percent have a mild or moderate fear that the cancer will again show its face. For those who have a cancer that is currently stable, roughly 50 percent have a moderate to significant fear that the cancer will grow or spread.
Some degree of anxiety is good in cancer survivors. It's what prompts us to make our follow-up appointments and call our doctors if we note any new symptoms.Yet for some people, this fear can do more than motivate, and can actually hinder survivorship, lessening quality of life.
Acknowledge Your Fear
It may seem easy to acknowledge that you are afraid, yet it's not that simple. After hearing stories, or perhaps reading yet another obituary which speaks of someone’s courageous journey with cancer, it may not feel right to worry yourself. After all, you are cancer free or the cancer you have is stable. This reluctance to speak of fears is reinforced by society in another way. How many times do we hear that we need to have a positive attitude to beat cancer?
Give yourself permission to feel your feelings. Remember that feelings aren't right or wrong, they just are. Allowing yourself to admit your fears is not the opposite of having a positive attitude. Instead, it validates the feelings the majority of cancer survivors experience at some time during their journey.
We are told that knowledge is power, and when it comes to recurrence that statement can be very true.
Begin by understanding your risk of recurrence (or progression.) Certainly, none of us are numbers, and statistics are numbers, not people, but talking to your doctor about the risk of your cancer coming back or spreading can help you put your worry into perspective.
It can help to understand how and why some cancers recur, and the kind of symptoms you may expect if your own cancer were to return, or grow and spread.
Finally, ask your oncologist if there is anything you can do to lower your risk of recurrence. Sometimes focusing on these actions alone can help you move past some of your fears.
Name Your Fears
Once you understand your risk of recurrence, as well as measures you can take to lower this risk, step back and look at your fears. It is amazing how much easier some things are to cope with when we give them a clear name.
Name your fear. Are you afraid that the cancer will come back? What are the chances it will?
Then name your secondary fears. Are you afraid of death? Are you afraid of what will happen to your children if you don't survive your cancer? Are you afraid of pain, or perhaps being alone?
Naming your fears not only helps by objectifying them but by evaluating your secondary fears you are in a better position to take measures to reduce these fears. For example, do you have an up-to-date will describing what you would like to see happen with your children in the event you do not survive your cancer?
Share Your Fears With a Friend, Loved One, or Support Group
Talking to a friend or loved one can be a wonderful step in coping with your fear of recurrence. Not only does this lessen the loneliness that goes along with your fears, but it serves to validate your fears. Not all friends will be comfortable with the degree of honesty this requires, and you may wish to think carefully about who in your life would best serve this role. This is a difficult step, and you don't want your efforts downplayed by someone who insists that you need to be positive.
Alternatively, some people may be more comfortable sharing their fears as part of a cancer support group. In the setting of a cancer support group you will not only have a chance to hear from others with similar feels (you won't feel as alone) but you will have the benefit of hearing what others have done in an attempt to cope with those fears.
Be Aware of What Triggers Your Fears
There are many situations which can trigger the fear of recurrence or progression of cancer. It could be a commercial on TV, learning of someone who was recently been diagnosed with or passed away from cancer, an upcoming appointment, or a new symptom. (Most of us who have survived cancer know that any new symptom is suspect.)
Yet even positive dates and times that are meant to be a celebration can trigger the fear of recurrence. Whether it is your 3-month "cancerversary," your 1-year, your 5-year, or if you have lived with cancer for decades, remembering the date of your diagnosis is also a reminder of your mortality. As we celebrate on the outside, many of us feel a bit of cancer survivor guilt, knowing others have not made it this far, and a reminder that for us too, cancer could come back.
And of course, on the flip side of the excitement that comes from knowing we have made it to a certain date—for example, a birthday, a wedding, or a graduation—comes the unvoiced question: Could it be the last?
Simply having an awareness that triggers will occur, and considering how you can cope with those fears ahead of time, is a big step in keeping these moments from adversely affecting your quality of life. It is the uncertainty—the feeling that something isn't quite right but being unable to name it—that is often the hardest to cope with.
Coping Methods for Moving Past Your Fear
There are many ways of lessening the fear of recurrence.
One excellent method is distraction—focusing on something else in order to take your mind off of your fears. Distraction can take the form of exercise, or perhaps nurturing a creative outlet you enjoy. Journaling your cancer journey may be helpful for some people, but deserves a special caution. Writing your thoughts can actually have the opposite effect if you ruminate on your fears. For this reason, some people find that it helps to keep a gratitude journal. It is hard to feel an attitude of gratitude while simultaneously keeping a mindset of fear.
A type of distraction with double benefits is an activity that serves to distract you from your fears while lowering your risk of recurrence as well. For some people this is exercise. If you are having difficulty thinking of an activity like this for yourself, ask your oncologist if she can brainstorm any "double benefit" activities with you.
I've heard over and over that a very effective method of distraction is through supporting and advocating for others with cancer. Check out some of the organizations that are active in supporting people with your type of cancer. There are many ways to become involved, whether in chat rooms, working one-on-one with people you are "matched" with according to type and stage of cancer or by becoming a cancer advocate.
Using Mind-Body Therapies to Help With Your Fear of Recurrence
In addition to an active and healthy lifestyle, there are several mind-body therapies that have helped some people cope with the fear of cancer recurrence or progression. These can include:
Meditation - It's fairly simple to learn how to practice mindfulness-based meditation to cope with the fear of recurrence, and studies suggest this practice may provide lasting improvement in alleviating these fears.
Massage therapy - Not only can massage therapy provide distraction from your fearful thoughts but can ease the muscle tension created by those thoughts. Plus, it's a nice way to pamper yourself as a survivor.
Qigong - Qigong combines breathing techniques with meditation, and can have benefits for cancer survivors that go beyond helping with the fear of recurrence. Studies suggest it may help with cancer-related fatigue, chemobrain (that pesky symptom from chemo that makes your car keys harder to locate) and even benefit your immune system. It may be hard to pronounce and seem foreign, but there are many simple youtube.com videos us "westerners" can follow to get the gist.
Stress relief breathing - Breathing techniques can work rapidly to alleviate worry and stress associated with the fear of recurrence, and are easy to learn.
Acupuncture - Thankfully, you don't have to understand how acupuncture works to experience the benefits as cancer survivors. Not only can this practice help some people cope with fears related to cancer, but it may help with pain, sleep, and even that annoying side effect of treatment-related peripheral neuropathy.
Keeping Your Fears From Controlling You
If you are still plagued by the fear of recurrence after trying some of these coping methods, or if your fears are lessening your quality of life, it may be time to talk to a professional. If this is the case, please don't feel like a failure. It's hard to cope with these very real feelings. Perhaps this is one reason that a few studies have found improved quality of life, and even possibly survival, in some people with cancer who seek out counseling.
We can't overstate the importance looking at fears in relation to your quality of life. After all, whether or not your cancer ever recurs or progresses, you want to live as fully as possible today.
Cognitive-behavioral therapy, otherwise known as "talk therapy" may help you further understand your fears, and bring light to issues you may not have considered.