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Fear Lasts and Lasts

Posted 12/19/2013

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  The results of this study won't surprise any of you.  A recently published article in the Journal of Psycho-Oncology suggests that fear of recurrence is a very long-term issue for women post cancer treatment. We knew this.

  What we also know is that most of us are not paralyzed by this worry, but that it persists and, even years after treatment, can jump out at us at unexpected times. In the early months, fear may be an almost constant companion. It can be the last thought at night and the first thought in the morning. It can panic us if we have a cough or an aching back or a headache and make it close to impossible to trust our bodies or our luck. We may have been given very good "statistics", but we all know that no one gets a promise, and, for each of us, the reality is 0% or 100%. We hope for the best. Over time, almost all of us are able to believe something like "I am willing to think that there at least is a chance that I will stay well", and then this gradually becomes an increasingly positive affirmation.

  As we move a bit further towards good health and the cancer fear is sitting, perhaps, on our backs instead of right in front of our eyes, it can still leap out. The days before a doctor's appointment or an annual mammogram may be tense. We hear stories that keep us awake at night. We sadly learn that a friend has experienced a recurrence. We carry on because that is really all we can do. We lean on each other, and we trust that, together, we will manage. And we do.

  Here is the abstract; if you want the whole article, email me (hhill@bidmc.harvard.edu), and I will send it to you.

Fear of recurrence in long-term breast cancer survivors—
still an issue. Results on prevalence, determinants, and
the association with quality of life and depression from
the Cancer Survivorship—a multi-regional populationbased
study

Background: Fear of recurrence (FoR) is a widespread problem among breast cancer survivors. So far,
little is known about prevalence, determinants, and consequences of FoR specifically in long-term breast
cancer survivors, even though it was found to be one of the most important concerns in this group.
Methods: Analyses are based on data of several population-based cohorts of long-term breast cancer
survivors, recruited by six German cancer registries. Overall, 2671 women were included in the analyses.
FoR was assessed using the short form of the Fear of Progression Questionnaire. Potential determinants
of moderate/high FoR and the association with depression and quality of life (QoL) were
explored via multiple logistic and linear regression.
Results: Even though the majority of women reported low levels of FoR (82%), a substantial percentage
experienced moderate (11%) and high (6%) FoR. Younger age (odds ratio = 3.00, confidence
intervals = 1.91–4.73 for women below age 55 years) and considering oneself as a tumor patient (odds
ratio = 3.36, confidence intervals = 2.66–4.25) were found to exhibit the strongest associations with
moderate/high FoR. Overall, psychosocial and sociodemographic factors played a far bigger role in
FoR than clinical factors. Higher FoR was associated with higher depression and lower QoL.
Conclusion: Fear of recurrence (mostly low levels) is highly prevalent among long-term breast cancer
survivors and can negatively affect QoL and well-being. Therefore, it should be given appropriate
consideration in research and clinical practice. As specifically younger women tended to be impacted
by FoR, it is crucial to be particularly attentive to specific needs of younger survivors.

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