Abstract
Background. Cancer treatment -related side effects may have a negative impact on quality of life among cancer survivors and may limit participation in physical activity (PA). Hypothesis. Cancer-specific concerns will be reduced throughout a 10-month diet and exercise intervention among recently diagnosed cancer survivors. Additionally, participants reporting greater levels of PA will also report fewer cancer-specific concerns. Study design. This study is an exploratory analysis of 452 recently diagnosed, early-stage breast and prostate cancer survivors who participated in the FRESH START diet and exercise trial. Data were collected at baseline and 1-year follow-up. Results. At baseline, chief concerns among prostate cancer survivors included ability to have an erection (mean score [standard deviation] = 1.0 [1.3]) and urinary frequency (2.5 [1.4]), whereas among breast cancer survivors, eminent concerns were not feeling sexually attractive (2.0 [1.3]) and worry about cancer in other members of their family (2.1 [1.3]). At 1 year, there was a significant improvement in cancer-specific concerns on breast cancer-specific concerns (P < .01) but not on prostate cancer-specific concerns. At baseline, women who were self-conscious about their dress had higher levels of PA, whereas men reporting issues with incontinence reported lesser increases in PA in response to the intervention. Conclusion. Cancer-specific concerns diminish over time, especially among breast cancer survivors. Among prostate cancer survivors, incontinence is a significant barrier that hinders benefit from PA interventions. Thus, there is a need either for medical interventions to ameliorate incontinence or for behavioral interventions to address this issue among survivors.
Introduction
This year in the United States, an estimated 230 480 women will be diagnosed with breast cancer, and 240 890 men will be diagnosed with prostate cancer. 1 These are the most prevalent gender-related cancers in this country. 2 With advancements in screening and treatment, the 5-year survival rate for localized disease of the breast or prostate is greater than 98%. 3 However, cancer treatments often have inherent side effects. As patients continue to live longer following treatment, they are vulnerable to various late effects that may affect function, activities of daily living, and overall quality of life. Moreover, cancer-specific concerns, specifically issues of sexuality and anxiety, can be overwhelming and lead to serious distress among survivors.4-6 Breast cancer survivors may experience cancer-specific concerns, such as feeling self-conscious about appearance, not feeling like a woman, tenderness in the arms, and worry about cancer risk among their family members. 7 Prostate cancer survivors may experience problems with urinary and bowel continence and the ability to have an erection. 8 Although experiencing cancer-specific concerns is fairly common, survivors may be embarrassed or ashamed to mention these concerns to their health care team, especially men. 4
Cancer-specific concerns not only affect mental health, but they can also influence physical well-being. Side effects of treatment may limit a survivor’s ability to be active and engage in regular physical activity (PA). This is counteractive to cancer recovery because regular exercise has proven benefits, for example, decreased fatigue, increased fitness, and improved physical functioning.9,10 Previous cross-sectional studies have observed associations between exercise and overall health-related quality of life among cancer survivors.11-13 However, little is known regarding exercise and cancer-specific concerns, and even less is known about how cancer-specific concerns and PA interact posttreatment.
We had 2 main objectives for the current (secondary) analysis. First, we describe cancer-specific concerns among recently diagnosed breast and prostate cancer survivors who participated in the FRESH START trial and how they changed over time in response to an exercise intervention. Second, we evaluated associations between cancer-specific concerns and PA, both at baseline and throughout the intervention. In conceiving of this analysis, we hypothesized that an inverse association would exist between cancer-specific concerns and self-reported minutes of weekly PA: that is, survivors who report fewer cancer-specific concerns are more physically active. We also believed that participants would report fewer cancer-specific concerns at 1 year compared with baseline. Finally, we anticipated that those who reported greater increases in PA from baseline to 1 year would experience a reduction in cancer-specific concerns.
Methods
Data Collection
The FRESH START trial was a 10-month randomized, single-blind, parallel group, controlled phase II clinical trial. The goals of this trial were to improve diet and exercise behaviors among recently diagnosed breast and prostate cancer survivors and to test whether sequentially tailored, mailed print materials were more effective than standardized diet and exercise print materials in the public domain. Participants in the intervention arm received materials specifically tailored on personal barriers, stage of readiness, progress toward goal attainment, cancer coping style, and demographic characteristics. Data were gathered by trained interviewers, who were blinded to study condition, using computer-assisted telephone interviews at baseline and 1-year follow-up. Interviews typically lasted 45 minutes and gathered demographic, behavioral, and cancer-related information from participants. The trial was approved by the Duke University Health System Institutional Review Board and took place from July 2002 to October 2005. The main outcomes of the FRESH START trial and other analyses have been published previously.14-19
Participants
Individuals were considered eligible if they were diagnosed with loco-regionally staged breast or prostate cancer within the past 9 months. Other eligibility criteria included the practice of less than 2 of the following health behaviors: (1) exercising at least 150 minutes per week; (2) adhering to a low-fat diet; or (3) consuming five or more daily servings of fruit and vegetables. Individuals were not eligible if they had evidence of recurrence or progressive disease or had any conditions that would preclude unsupervised PA or participation in a home-based behavioral intervention administered via print materials and evaluated via telephone survey. 20 Participants were recruited through self-referral and by obtaining contact information from cancer registries and oncology practices in the United States and Canada. Eligible individuals provided written informed consent and participated in the baseline assessment. Only participants who received some form of exercise intervention (either standardized or tailored) and who provided follow-up data were included in this analysis.
Cancer-Specific Concerns
Cancer-specific concerns were measured by the “additional concerns” subscale of the Functional Assessment of Cancer Therapy–Breast (FACT-B) in breast cancer survivors and the Functional Assessment of Cancer Therapy–Prostate (FACT-P) in prostate cancer survivors. The FACT-B questionnaire asks participants to rate the extent of 9 breast cancer–specific items as they apply to the previous 7 days. Scores were based on a Likert scale anchored at 0 and 4 (0 = not at all; 4 = very much). Items associated with poorer quality of life were reversed scored (so that 4 = not at all and 0 = very much). The 9 items were then summed to obtain a breast cancer–specific concern score, which ranges from 0 to 36. The FACT-P questionnaire is similar but includes 12 prostate cancer–specific items, with the total score ranging from 0 to 48. A higher cancer-specific concern score corresponds to fewer reported concerns (better functioning). Both the FACT-B and FACT-P are reliable and valid instruments for assessment of cancer-specific concerns and quality of life among breast and prostate cancer survivors, respectively.7,8
Physical Activity
Engagement in PA was measured using the 7-Day Physical Activity Recall. Participants reported the time, in minutes, they spent engaged in moderate, hard, or very hard activity over the past week. Participants were also asked how many hours they slept each night. The 7-Day Physical Activity Recall is a valid and reliable instrument that has been previously used in samples of cancer survivors.13,21 In the FRESH START trial, self-reported PA was corroborated by objective PA data captured via accelerometers in a subset of participants. 17
Covariates
Additional data were collected on age, education, race, body mass index, cancer coping style (fighting spirit, fatalist, and other), stage of cancer (unknown, 0, I, II, and IIIA—breast only), comorbidities, and type of treatment (surgery, radiation, chemotherapy, hormonal therapy, and other).
Statistical Analysis
Baseline demographic data were expressed with means and frequencies, as appropriate. To address objective 1, each individual cancer-specific concern on the FACT-B and FACT-P was also expressed with a mean, with a floor of 0 and ceiling of 4, by cancer type. A summary score was also created separately for the FACT-B breast-specific and FACT-P prostate-specific concern subscale. Paired t tests were used to determine if cancer-specific concerns were reduced when measured at 1 year compared with baseline. To address objective 2, Spearman correlations were used to evaluate the baseline association between cancer-specific concerns (total and individual) and reported minutes of weekly PA. The distribution of change in PA from baseline to 1 year was evaluated, and 1 individual who reportedly decreased PA by more than 420 min/wk was considered an outlier and excluded. Separate linear regressions were used to evaluate the association between (1) baseline cancer-specific concerns and minutes of PA at 1 year and (2) change in cancer-specific concerns from baseline to 1 year and change in PA. No corrections for multiple testing were used, given the exploratory nature of this analysis.
Results
Demographic characteristics on the complete sample of FRESH START trial participants have been reported previously. 14 The characteristics of the subset included in this analysis were similar to the larger sample of FRESH START participants with the majority being White, reporting stage I or stage II cancers, having received surgical treatment, and reporting college or postgraduate educational level. The mean age of breast cancer survivors (n = 259) in the current sample was 54 years (standard deviation [SD] = 11.4), and it was 62 years (SD = 8.3) for prostate cancer survivors (n = 193; see Table 1).
Participant Characteristics
Prostate Cancer Survivors
Prostate cancer survivors in our sample reported an average baseline FACT-P prostate-specific concern score of 38.4 (out of 48). The issues of most concern were the ability to have and maintain an erection (mean score = 1.0, corresponding to “a little bit”) and frequency of urination (mean score = 2.5). Dissatisfaction with comfort, not feeling like a man, and being bothered by aches and pains also were concerns (see Table 2). The item of least concern among prostate cancer survivors was body weight maintenance. Significant reductions from baseline to 1 year were observed in concerns related to having an erection and urination frequency (actual score increased), and increases were reported in concerns associated with pain (actual scores decreased from baseline to 1 year; see Table 2). However, overall, no net difference was observed in the total cancer-specific concern score among men with prostate cancer from baseline to 1-year follow-up.
Mean Scores of Cancer-Specific Concerns From the FACT a
Abbreviations: FACT, Functional Assessment of Cancer Therapy; SD, standard deviation.
Scores range from 0 to 4; higher indicates better function.
No significant associations were observed between baseline cancer-specific concerns and reported PA, nor between change in PA and change in cancer-specific concerns from baseline to 1 year (data not shown). There was a significant association between the baseline cancer-specific concern of “activities limited by urination” and minutes of PA at 1 year, after controlling for baseline activity (P = .02). Individuals who responded “quite a bit” to this concern increased activity by an average of 20 min/wk. Those who responded “not at all” to this concern increased activity by 51 min/wk (see Table 3).
Minutes of Physical Activity at Baseline and 1 Year by Responses to “My Problems With Urinating Limit My Activities” a
Only asked among prostate cancer survivors. Linear regression estimate: independent variable, score from “My problems with urinating limit my activities”; dependent variable, minutes of physical activity at 1 year; controlling for baseline activity. Parameter estimate, 26.2; standard error, 11.1; P value, .02.
Breast Cancer Survivors
Our sample of breast cancer survivors reported an average baseline breast cancer–specific concern score of 25.2 (out of 36) on the FACT-B. Items with the lowest average concern scores (meaning reduced functioning) included the following (see Table 2): feeling sexually attractive (mean score = 2.0), worry about other family member getting the same illness (mean score = 2.1), and worry about the effect of stress on my illness (mean score = 2.3). The least-reported cancer-specific concern among breast cancer survivors was shortness of breath (mean score = 3.7). Among breast cancer survivors, there was a positive correlation (meaning women who reported less concern also reported less PA) between “I am self-conscious about the way I dress” and baseline minutes of PA (P = .01). There was no association between baseline cancer-specific concerns and PA at 1 year (controlling for baseline activity). Breast cancer survivors reported significant reductions in concerns related to physical appearance from baseline to 1 year (actual scores increased). On intervention completion, there was a significant increase in the cancer-specific concern score, indicating a reduction in overall reported concerns (average increase was 1.2 points; P < .01). No association was observed between change in PA and change in cancer-specific concerns from baseline to 1 year among breast cancer survivors.
Discussion
This is the first study to explore associations between PA and cancer-specific concerns in both breast and prostate cancer survivors. As anticipated, we found that this population is vulnerable to various treatment-related side effects that may negatively affect well-being. The most prominent cancer-specific concerns reported among prostate cancer survivors in our study were issues of sexual performance and urination frequency, whereas issues regarding weight and appetite were considered minor concerns. In contrast, breast cancer survivors reported being self-conscious about several aspects of their appearance, including weight but also reported issues with sexuality.
Among prostate cancer survivors, our sample reported a slightly higher baseline cancer-specific concern score on the FACT-P (38.4) compared with previous research. Studies examining men with varying stages of prostate cancer have reported cancer-specific concern scores ranging from 29.7 to 34.7.22,23 A study by Robinson et al 24 evaluated changes in the cancer-specific concern score from precryosurgery treatment to 3 years’ follow-up in 75 men. Before treatment, men reported an average prostate-specific score of 38, but 6 weeks after treatment, the average score fell to 31 and then rose again at 3 months’ follow-up to 36. This study also observed a dramatic decrease in reported sexual function (erection and satisfied with sex life) from baseline to 6 weeks following treatment. 24 Our sample may have reported a slightly higher prostate-specific score simply because more time had elapsed from diagnosis and from treatment. Also, the individuals enrolling in this study were interested in improving diet and increasing activity and thus may be healthier than the average prostate cancer patient who does not volunteer for research studies concerning health promotion.
Previous studies have reported breast-specific concern scores on the FACT-B ranging from 22.4 (in a sample with lymphedema) to 27.8 (in a sample of breast cancer survivors 2-5 years following their initial treatment).25,26 Among breast cancer patients who were within the first few weeks of diagnosis, the average breast-specific concern score was 25.4; Kwan et al 5 observed that being older, white, and not having surgery was associated with a higher score. Breast cancer patients who underwent breast-conserving treatment, compared with those who had mastectomy treatment, also report higher cancer-specific scores. 27 The average cancer-specific concern score of 25.2 in our sample was consistent with these previous research studies.
Similar to the systematic review by McNeely et al 9 who reported that exercise results in significant increases in FACT-B scores and physical functioning, at completion of the study period, breast cancer survivors in the current trial also significantly improved their cancer-specific FACT-B score—that is, reduced concerns over time. Additionally, the individual concerns of feeling sexually attractive and self-conscious about dress and hair loss were significantly reduced from baseline to 1 year. Whereas this result could suggest that exercise interventions lead to improvements in breast cancer–specific quality of life, the fact that these improvements were not significantly associated with increases in PA suggests that the effect seen here could have resulted from just the passage of time. Prostate cancer survivors in our sample also reported a small (nonsignificant) increase in the FACT-P cancer-specific concern score. Men in this group had both significant improvements and declines in individual cancer-specific concerns. This result also may suggest natural fluctuation in concerns over time or may be a consequence of trying to be more physically active.
Prostate cancer survivors who reported that “problems with urination limit my activities” also made smaller gains in PA in response to the interventions; however, it should be noted that there were small numbers of men who reported “quite a bit” (n = 3) and “somewhat” (n = 18). However, urinary incontinence is a common and well-documented problem in this patient population. The finding that it may impede uptake of a PA intervention is concerning, especially because the FRESH START tailored intervention materials provided guidance (albeit minimal) for overcoming this barrier—that is, wearing pads and limiting fluids prior to exercise. Given that urinary continence was strongly associated with exercise adherence, either more powerful behavioral interventions or medical interventions are needed to overcome the barrier of incontinence at least in some subsets of prostate cancer survivors if they are to achieve recommended levels of PA. Additionally, we observed an unexpected finding that women who reported lower levels of self-consciousness about dress also reported less PA at baseline. Those reporting “not at all” for self-conscious about dress reported the lowest levels of activity. Thus, being aware and anxious about appearance may actually serve be a motivation for engaging in activity rather than a deterrent.
The primary limitations of this study include reliance on data based on self-report and that emanate from a largely white sample. Additionally, the sample was self-referred, and those who were more health conscious or had fewer cancer-related complications may have been more willing to participate; however, we did exclude people already practicing 2 or more health behaviors in diet and exercise. This analysis was conducted on a large sample without adjustment for multiple comparisons, and some results may have been significant by chance. Being an exploratory study, we believe that this is an acceptable approach, and future research will need to confirm any significant findings. Despite limitations, our study has several strengths. We were able to evaluate cancer-specific concerns and PA among a substantial sample of both breast and prostate cancer survivors using reliable and valid instruments. Moreover, our study corroborated self-report measures with objective means and had a low rate of attrition (<8%). Finally, we present information on individual cancer-specific concerns, not simply a summed total score, in hopes of providing more detail to the practitioner who may benefit from this information.
Physical and emotional recovery from cancer is a long process, and more research needs to be conducted with regard to cancer-specific concerns. There is a need for future research to focus on evaluating other groups of cancer survivors as well as those with more advanced stages of disease or those whose survival time since diagnosis and treatment is longer. Additionally, qualitative research may provide information concerning cancer-specific concerns that are not formally asked about on the FACT as well as provide an opportunity to discuss how cancer-specific concerns can be addressed and managed both professionally by the medical staff and personally by the cancer survivors themselves.
Conclusions
Breast and prostate cancer survivors who are diagnosed with early-stage cancers have a host of cancer-specific concerns that relate to their sexuality, organ function, and worry about their family members. Over the course of time, these cancer-specific concerns diminish; however, in the current study, this effect was only significant among breast cancer survivors and appeared to be independent of the level of PA. In men with prostate cancer, urinary incontinence appeared to serve as a significant barrier to PA because men reporting this problem had far less uptake of the PA intervention than men in whom this was not a concern. Given the importance of PA to overall health, there is a need to develop interventions that can overcome the complex problems of cancer survivors and for which the expertise of a multidisciplinary team of behavioral scientists, physicians, and other health care members can be of benefit.
Footnotes
Declaration of Conflicting Interests
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The original FRESH START trial was supported by grants R01 CA81191, CA74000, CA63782, and M01-RR-30 from the National Institutes of Health and also by the American Institute of Cancer Research and the Susan G. Komen Foundation. This material is the result of work supported with resources from and the use of facilities at the Durham VA medical center.