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Fear of Cancer Recurrence: A Doctor Speaks Out

No matter your success so far in dealing with fear of cancer recurrence, I believe there's hope. You have the power to loosen fear's grip, so you can live from a place of optimism and joy.
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"In my personal experience many of us [cancer survivors] may suffer more mentally than we do physically, as the emotional scars can take longer to heal than any physical ones." -- Chris Lewis, Founder, Chris's Cancer Community

Chris Lewis knows something about the emotional impact of cancer. In addition to his own cancer journey, which included seven years of constant treatment, he founded a well-known online support community for cancer survivors. His raw and honest posts, primarily about the emotional impact of cancer, have earned a wide, highly engaged readership in his native UK and around the globe.

Chris speaks from his community's experience as well as his own when he says that cancer's emotional impact can cut deeper and last longer than the physical ordeal, trying as that is.

One well-documented thread among survivors' emotional experiences is fear, especially fear of cancer recurrence. A 2013 review of studies published in the journal Psychooncology showed anywhere from 33 percent to 96 percent of cancer survivors struggling with persistent fear of recurrence. ** If you've felt this fear you're not alone. But that doesn't make it any easier.

As a doctor and mentor to cancer survivors, fear presents me with a significant professional challenge. I'm all too familiar with fear's corrosive effects on the body, and achingly aware that studies associate it with increased rates of disease. I see how much harder it is for my fearful survivors to take necessary steps to resolve other layers of emotional unrest. Hard enough to cope with in itself, fear is a major obstacle to healing.

My job is to help you heal the physical and emotional effects of cancer and cancer treatment, so you can move on to create a healthy, happy new chapter of your life. Given fear's prevalence, I'm guilty of neglect if I don't inquire about how often and how severely you're experiencing fear. I need to be ready to offer you effective strategies to keep fear from interfering with your wellness and your quality of life.

When I've asked survivors like you how you've tried to deal with your fear, I usually hear one of three answers:

a) You haven't asked for help because you didn't know who to ask. It's still most survivors' experience that when cancer treatment ends, their medical team breaks out cupcakes and celebrates that they're "done." Nearly all of you tell me that was the most fearful moment of your cancer journey. Before you could catch your breath, you'd lost your treatment framework and support team. You knew you weren't "done" and had no idea who'd help you deal with the physical and emotional mess left by the whirlwind of diagnosis and treatment.

Certainly the end of treatment is worth celebrating, but we medical professionals bear blame for fanning the flames of fear if we abandon you this vulnerable state. Don't let us get away with this. If your wellness team hasn't asked whether you're experiencing fear, please speak up and ask for help. Don't stop asking until you're connected with helpful support or resources. We owe that to you.

b) You were prescribed anti-anxiety medication. A short course of medication can be useful if takes the edge off your worry, so you can work at resolving its root causes. But at least half of you who tried medication have told me it wasn't helpful. That's because fear can't be masked indefinitely by a pill. Sooner or later it will resurface and demand your attention. With or without anti-anxiety medication, it's important to find a more sustainable way to cope with fear, so that you, not your fears, are in charge of your life.

c) You were referred to a support group or a therapist. With very rare exceptions, doctors aren't trained in the needs of cancer survivors. When they learn you're struggling with fear, they're likely to refer you to a support group or therapist. Support groups let you know you're not alone with your fear, and that what you're experiencing isn't uncommon. That's commendable. But many of you have told me that groups didn't offer you tools to deal with the fear. Some of you have left groups because you didn't want to keep talking about fear instead of learning to move beyond it.

Likewise, your visits to therapists have been hit and miss. You didn't need to be diagnosed, because fear isn't a medical condition. If therapy helped you, it's because it didn't stop at providing you empathy -- although that's a great starting point. It provided you hands-on ways to transform your fear from a liability into a vehicle for your growth.

No matter your success so far in dealing with fear of cancer recurrence, I believe there's hope. You have the power to loosen fear's grip, so you can live from a place of optimism and joy. Look for a tip on that my upcoming post.

** Koch L et al, Fear of recurrence and disease progression in long-term (≥ 5 years) cancer survivors-a systematic review of quantitative studies. Psychooncology. 2013 Jan; 22(1)

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Dr. Shani Fox helps cancer survivors get back in charge of their health and rebuild their confidence so they can make the most of their new chance at life. She encourages survivors not to settle for a "new normal", but to create a "new extraordinary".

Dr. Shani is the creator of the leading-edge "Back in Charge!" medical model for survivor care and the author of The Cancer Survivor's Fear First Aid Kit. Her messages about your innate power to create wellness and happiness make her a popular national speaker, radio guest and blogger for cancer survivor communities.

Dr. Shani will host a free webinar on releasing fear of cancer recurrence on Tuesday, April 5, 2016, 11 am Pacific/2 pm Eastern. Click here to register.