Leroy sat in the support group for cancer survivors. “I got up in the middle of the night to use the toilet,” he said. “I glanced at the clock, it was 3 in the morning. Then I started to think ‘what if my cancer comes back?’ It was awful, I could not sleep for another second.” Many other people nodded, showing that they too had been stalked by fear when they should have been sleeping.
Academics call this a ‘fear of cancer recurrence’ but every survivor knows the twist of anxiety in their gut at random times. About 55% of patients and survivors have moderate levels of fear of cancer recurrence (FCR), while 20-30% have severe levels of this fear.[i] [ii] Leroy was one of them, each time he felt a weird pain, his mind raced toward the conclusion that his cancer had returned. He tried to slam the brakes on his thoughts, but they picked up so much momentum that he usually failed. Instead of focusing on the spreadsheet in front of him at work, his mind would jump to the hospital bed again. It would happen again on the drive home, anxiety surging as he waited for the light to turn green.
The repeated waves of fear were not just wretched for Leroy to experience, they altered his physiology as well. When people experience a chronic stress, the hormone cortisol is released. We saw in a previous post that cortisol has several effects on the body that increase the risk of cancer returning. These include suppressing the immune system, damaging DNA, and increasing weight gain. Since people with high FCR are chronically stressed, it sadly is not surprising that they are two and a half times more likely to die of cancer related causes, or all causes. [iii] In a surprising result, if their cancer is relatively benign, (indolent non‐Hodgkin lymphoma) they are six and a half times more likely to die.
These are dramatic results and they may set off a nasty spiral. People who are quite scared their cancer will return may think “Oh no, I have more than double the risk of my cancer coming back, so I am really going to die!” Before your mind races to these conclusions, there are some important considerations. This result was found in one type of cancer (lymphoma) but not in another (uveal melanoma). [iv] Surprisingly, there are no other studies between fear of cancer recurrence and mortality, so the type of cancer may play an important role.
Another dimension is what people do with their fear of their cancer coming back. Some people engage in emotion-focused coping, or doing activities that soothe or numb their negative emotions. Smoking is an example of this pattern. Although smoking can calm people’s anxiety in the short-term, in the long-term, it increases their fear of cancer. People who smoke after their diagnosis have twice the likelihood of having high FCR, compared to non-smokers.[v] They are in a doom-loop, dealing with their fear of cancer by lighting up a cigarette, but then feeling even more fear later on, because they are painfully aware of the link between smoking and cancer. The smokers who break out of this loop by quitting smoking also have far less fear of their cancer returning.[vi] They also have more positive mood, easier functioning, and more harmonious relationships. The people who keep smoking after their diagnosis may get a lot of friction from their family and friends. They are doing something that increases their risk of cancer, instead of making changes that boost their chances of living longer. The friction in relationships and loss of social support increase their risk of a recurrence of cancer, as we explored in this post.
The same dynamic plays out with alcohol, a classic emotion-focused coping behavior. Those with higher fear of cancer recurrence tended to increase their alcohol use.[vii] This ultimately increases their fear, because alcohol is a carcinogen. It also frustrates their loved ones, who know that boozing it up is damaging their health.
There is another strategy to deal with fear. It is called problem-focused coping, where you actively try to change the stressful situation. We saw above that people who took action to quit smoking, had less fear of recurrence. Cancer survivors who engage in good levels of physical activity also have less fear of their cancer coming back than people who do little or no exercise.[viii] [ix] This has various positive effects. Family and friends will be more supportive, as they see the cancer survivor going to dragon boat rowing practice, or hiking. This can add to a virtuous spiral, with the family facilitating the survivor’s changes.
The survivor will also have more of a sense of self-efficacy, that they are taking action to push back cancer by stopping smoking. They do not see themselves as helpless, waiting for the disease to hit again, but that they are more in control of their lives and body.
The most important effect of using problem-focused coping, such as exercise, is that it can substantially reduce the risk of recurrence. A summary of 8 randomized clinical trials found that cancer patients and survivors who exercised had 24% lower risk of dying, than those in the control group. They had 50% lower risk of recurrence of cancer. [x] These are very positive effects. Any pill that reduced the risk of death and recurrence to such a degree would be given to everyone who had cancer. An oncologist who did not prescribe it would face some very sharp questions and possibly lawsuits.
You now have a sharp weapon to cut the tentacle of fear that yanks you awake in the middle of the night. Make specific plans to either stop smoking, reduce your alcohol consumption, improve your diet, and/or start exercising. This problem-focused coping will not just reduce your emotion of fear, but will substantially reduce the likelihood of your cancer returning.
Making these major changes in emotion and behavior is not a simple thing. People often benefit from psychotherapy to help them. Subscribe so that you can learn how psychotherapy shifts the fear of recurrence of cancer in our next installment. In the meantime, leave a comment below. What action plans could you create that would reduce your fear of cancer? What behavior changes have you already made?
[i] Bergerot CD, Philip EJ, Bergerot PG, Siddiq N, Tinianov S, Lustberg M. (2022). Fear of cancer recurrence or progression: What is it and what can we do about it? Am Soc Clin Oncol Educ Book. Apr;42:1-10. doi: 10.1200/EDBK_100031. PMID: 35561298
[ii] Luigjes-Huizer YL, Tauber NM, Humphris G, Kasparian NA, Lam WWT, Lebel S, Simard S, Smith AB, Zachariae R, Afiyanti Y, Bell KJL, Custers JAE, de Wit NJ, Fisher PL, Galica J, Garland SN, Helsper CW, Jeppesen MM, Liu J, Mititelu R, Monninkhof EM, Russell L, Savard J, Speckens AEM, van Helmondt SJ, Vatandoust S, Zdenkowski N, van der Lee ML. (2022). What is the prevalence of fear of cancer recurrence in cancer survivors and patients? A systematic review and individual participant data meta-analysis. Psychooncology. Jun;31(6):879-892. doi: 10.1002/pon.5921. PMID: 35388525
[iii] Kim SJ, Kang D, Kim IR, Yoon SE, Kim WS, Butow PN, Guallar E, Cho J. (2020). Impact of fear of cancer recurrence on survival among lymphoma patients. Psychooncology. Feb;29(2):364-372. doi: 10.1002/pon.5265. PMID: 31654534
[iv] Brown SL, Fisher PL, Hope-Stone L, Heimann H, Hussain R, Cherry MG. (2022). Prediction of all-cause mortality from 24 month trajectories in patient-reported psychological, clinical and quality of life outcomes in uveal melanoma patients. J Behav Med. Feb;45(1):115-123. doi: 10.1007/s10865-021-00252-8. PMID: 34453274
[v] Reed SC, Bell JF, Miglioretti DL, Nekhlyudov L, Fairman N, Joseph JG. (2020). Relationships between fear of cancer recurrence and lifestyle factors among cancer survivors. J Cancer Educ. Aug;35(4):669-677. doi: 10.1007/s13187-019-01509-2. PMID: 30879181
[vi] Westmaas, J. L., Thewes, B., Séguin Leclair, C., and Lebel, S. (2019). Smoking versus quitting and fear of cancer recurrence 9 years after diagnosis in the American Cancer Society’s longitudinal Study of Cancer Survivors-I (SCS-I). Cancer 125, 4260–4268. doi: 10.1002/cncr.32431
[vii] Hall DL, Jimenez RB, Perez GK, Rabin J, Quain K, Yeh GY, Park ER, Peppercorn JM. (2019). Fear of cancer recurrence: A model examination of physical symptoms, emotional distress, and health behavior change. J Oncol Pract. Sep;15(9):e787-e797. doi: 10.1200/JOP.18.00787. PMID: 31298966
[viii] Fisher A, Beeken RJ, Heinrich M, Williams K, Wardle J. (2016). Health behaviours and fear of cancer recurrence in 10 969 colorectal cancer (CRC) patients. Psychooncology. Dec;25(12):1434-1440. doi: 10.1002/pon.4076. PMID: 26863926
[ix] Séguin Leclair C, Lebel S and Westmaas JL. (2021). Can physical activity and healthy diet help long-term cancer survivors manage their fear of recurrence? Front. Psychol. 12:647432. doi: 10.3389/fpsyg.2021.647432
[x] Morishita S, Hamaue Y, Fukushima T, Tanaka T, Fu JB, Nakano J. (2020). Effect of exercise on mortality and recurrence in patients with cancer: A systematic review and meta-analysis. Integr Cancer Ther. Jan-Dec;19:1534735420917462. Doi: 10.1177/1534735420917462. PMID: 32476493