Managing fears of recurrence

Hester Hill Schnipper, LICSW, OSW-C Program Manager Emeritus, Oncology Social Work

APRIL 08, 2019

It is not much of an exaggeration to say that everyone who has been diagnosed with cancer worries about a possible recurrence. There are probably a few people who have world-class denial skills or who have chosen not to learn too much about their disease who escape these concerns. All the rest of us, and that is most of us, are sometimes anxious or even panicked about this possibility. As I frequently tell my patients when talking about managing these feelings, recurrence is a real thing and worth being worried about. It is not the same as worrying that there might be someone hiding under your bed or in your closet. It is possible, and none of us ever get a guarantee that we will stay well after treatment.

Reminder here that everyone is different and everyone's situation is different. Most of us have talked, probably ad nauseam, with our doctors about our personal statistics. Part of those conversations is always a reminder that statistics are based on what happens to a large group of people, and are not so helpful when thinking about any one individual. For each of us, the reality turns out to be 0% or 100%; we just don't know which column we are in. For many cancers, the risk of recurrence diminishes as time passes, but there are late recurrences, and the worry rarely completely goes away.

It is helpful to remember, when you are wishing to hear other words, that your cancer doctors are never going to say: "You are cured." The best we can hope for is something along the lines of "You are doing well" or "Everything looks good" or "NED (no evidence of disease)." We all wish that more reassurance was coming, but it rarely is. Of course there are exceptions to all rules, and there are situations where a cancer patient can be told that cure seems to have been achieved. As the months and years pass, most of us find that the worry has diminished, and we get through days and weeks without fear. There is a widely held belief that, after five years have safely passed, you can consider yourself to be cured. This is true for a few cancers, but not for all, and many of us hold on to realistic worry for a long time.

Even after a lot of time has passed, however, it may not take much to throw us back into the panic. Sometimes the worry is related to a scheduled test, like an annual mammogram or a colonoscopy, and, assuming the results are normal, we can pack it away again. Sometimes the worry jumps out when we hear of a cancer buddy's recurrence or death or we experience a worrisome symptom. I have written before about The Two Week Rule, and am reminding you here that most aches or pains or coughs don't last two weeks and don't need to be reported. If something does persist, it is probably wise to call your doctor, but remember that most things don't turn out to be cancer.

What helps with recurrence anxiety in addition to the safe passage of time? (And there is an irony here: sometimes, rather than thinking: It's been three years, so things are probably fine, we think instead: It's been three years, so my good time is probably about to be up. This kind of superstitious or magical thinking happens to us all, and usually does not last.) It always helps to talk about it. This is one of the real benefits of participating in a cancer support group as you will be with others who share your thoughts and experiences. We understand one another's worries in ways that our healthy friends and families can't do. If you are not part of a group, consider an online forum like the BIDMC Cancer Community or look for other ways to spend time with cancer survivors. We encourage and support each other in very special ways.

There is increasing evidence that some mind-body techniques help with recurrence anxiety. These include meditation, mindfulness, relaxation, journaling, and gratitude journals. Cognitive behavioral techniques (CBT) may also help. You can designate a daily or weekly worry time, saying to yourself that the anxiety will be considered only at 5:00 PM. Once 5:00 PM rolls around, much of the time, you will be busy with other things. You can try to reframe your fears; for example, rather than thinking I am scared that the cancer will come back, try I am feeling healthy and, unless something happens, I am going to stay well. Sometimes it is possible to work towards I am hopeful that there is a good chance that I will stay well rather than something even more positive and definitive. The theory with this suggestion is that you can gradually move towards more hopeful confidence.

I think of one woman who used a daily mantra that helped her a lot: I am not dying today or tomorrow or next week or next month or next year, and I am going on with my good day.

If you find that you are too often highly anxious or not sleeping or unable to concentrate or enjoy your usual friends and activities, it is time to find someone to talk to. A therapist who is experienced with oncology patients can help you contain your worries and concentrate on your best possible quality of life. Ask your doctor or nurse for a referral to an oncology social worker or someone in the community with this background. We have all learned that life is too precious to waste on unnecessary sadness or fear. If our cancer does come back, we will find ways to deal with it then. Worrying too much in advance won't help at all, and can take too much of our happiness and enjoyment of our days.

How do you manage your cancer worries? share your story