Longterm Effects Of Cancer Diagnosis And Treatment On Survivors Family Members

The literature on the effect of cancer diagnosis and treatment on family members is sparse.74 Of studies in this area, most have focused on the impact of cancer soon after diagnosis, during recurrence, or at the terminal phase of the disease.75-77 One study shows that partners of men with prostate cancer, generally from small convenience samples, report more distress than their sick partners, but also believe that their partners are more distressed. The only reviewed study of long-term prostate cancer survivors found that couples' health-related QOL was associated with marital satisfaction.61 Distress was inversely related to levels of family support. The men's focus of concern, on their sexual functioning (i.e., impotence), was not shared to an equal degree by their non-sick partners.78,79 The most relevant study included in our review focusing on family survivorship included families from 1 to 5 years posttreatment,80 thus making specific statements about the long-term effects of cancer diagnosis and treatment on family members difficult. The study finds that economic resources, marital status, and retirement status for cancer survivors ages 50-70 were related to higher levels of QOL.80 Contrary to expectations, physical and somatic concerns were unrelated to overall QOL. Social support was positively related to overall QOL while fear of recurrence was negatively related to QOL. The family's meaning of the illness was also related to family QOL.

Few studies have focused on the brothers and sisters of survivors who, themselves, are at higher than average risk for cancer. Most of these studies have focused on siblings at genetic risk.81-83 Family history of breast or ovarian cancer has been identified as the strongest risk factor for breast cancer. Women who have a sister or other first-degree relative with breast cancer have a 2- to 10-fold increased risk of developing breast cancer themselves.84,85 And men with a family history of prostate cancer have a 2-fold increased risk. Depending on the age of the relative and whether it is a father or a brother, the risk can be much higher.

Over the past several years, our research team has been studying the long-term reactions of survivors' family members. We have conducted studies of both men and women who have a greater than average risk of breast or prostate cancer due to a family history of the disease and have explored both their psychological and behavioral reactions to their family history of cancer. In this section we present findings from two studies, one with sisters of breast cancer survivors; and the other with the brothers and sons of prostate cancer survivors.

7.1. Sisters of Breast Cancer Survivors Study

In the first of these studies, we interviewed the sister's of women whose breast cancer was diagnosed before age 50.86 The breast cancer survivors are part of a cohort study discussed previously.32 Our focus on survivors' sisters rather than their daughters is due to the immediacy of the experience which we thought would make this group more vulnerable and also because the interview presents a teachable moment for an

intervention.87

Our sample consisted of 163 women, referred by 220 of the breast cancer survivors (76% response rate). In addition to collecting demographic information, we asked them about their breast cancer risk factors to compute a modified Gail index of their actual risk of getting breast cancer, their perceived risk of getting breast cancer themselves given their family history,82,88 their health status using the MOS SF-36, breast cancer worries82,88 the intrusiveness of the participants' sisters breast cancer89 and their breast cancer screening history.

The mean age of the participants was 47. Like their sisters with breast cancer, theywerewell educated with 75% having some college education; 71% were married and 75% were Euro-American. Most (63%) of the women older than 40 had a mam-mogram in the past year or three mammograms in the past 5 years, while 75.5% of women of all ages had at least three clinical breast exams in the past 5 years. While 19% had more than one first-degree relative with breast cancer (conferring greater risk), their self-assessed risk of breast cancer ranged from zero to 100% with a mean of 45% while the lifetime risk estimated by the modified Gail model ranged from 6 to 49%, an overestimate of an average of 25 percentage points! Interestingly, only a few women (12%) reported thinking "often" or "a lot" about their chances of getting breast cancer. However, almost a third (31%) reported that they had intrusive thoughts about their sister's diagnosis of breast cancer. Multiple regression analysis determined that the predictors of the woman's self-assessed risk was higher if they had more than one first-degree relative with breast cancer (coefficient is 14.03, p < 0.01) or had more intrusive thoughts about their sister's diagnosis (0.16, p < 0.05). Having intrusive thoughts also predicted greater breast cancer worries (coefficient is 0.10, p = 0.0001) while having a partner or being married predicted fewer worries (coefficient is -0.46, p = 0.002). Thus, for sisters of breast cancer survivors, psychological aspect of QOL was affected years later. Perceiving oneself at risk was related to being vigilant about one's own health (i.e., having a mammogram or clinical breast exam).

7.2. Brothers and Sons of Prostate Cancer Survivors Studies

In a study, still underway, 150 African American and 150 Euro-American men ages 35-74 were recruited through relatives whose prostate cancer was reported to the California Cancer Registry between 1997 and 20 03.90 Because of population differences between groups, a random sample (20%) of Euro-American brothers and sons were selected while all eligible brothers and sons of African American men were approached to participate in our study of family members. The initial purpose of this population-based study was to determine the extent to which there are racial/ethic difference between family members (brothers and sons) of African American and Euro-American men in their awareness of their heightened risk of prostate cancer and their use of early detection behaviors. Since a measure of the Gail model has not been developed for prostate cancer, it is not possible to assess the accuracy of risk estimates for prostate cancer.

In a telephone interview, it was determined that the average age of African American men included in the study was 53 years and that of the Euro-American men was 55 years. Statistically significant differences were found on measures of knowledge, preventive behavior, and psychological response to prostate cancer when comparing African American and Euro-American men. Regarding knowledge of prostate cancer, Euro-American were more likely than African American men to report a good understanding of prostate cancer (8.9 compared to 7.3, p = 0.001).90 In regard to preventive behavior, African American men were significantly less likely to have ever had a PSA test (51% versus 75%, p = 0.0001) or a digital rectal exam (DRE) (66% compared to 80%, p = 0.006).90 African American men were less likely to perceive their cancer risk; reporting their prostate cancer risk was "higher than average" less often the Euro-American men (35% compared to 65%, p = 0.0001).90 African American men were significantly more likely than Euro-American men to report having greater than average worries about getting prostate cancer (3.9 compared to 3.5, p = 0.004). They were also more likely to report health anxiety (18% compared to 16%, p = 0.003).90 African American men also were more likely to agree with the statement that "having a PSA test caused unnecessary worry" about prostate cancer (32% compared to 17%, p = 0.004) and were more likely to agree with the statement that "it is pointless to think about prostate cancer since so many things could happen in life" (36% compared to 23%, p = 0.01).90

While we find that the psychological aspect of brother's and son's QOL was affected to some degree, worries were only reported by some of the men. While there continues to be controversy about the value of PSA testing, these data suggest that both African American and Euro-American men at above average risk for prostate cancer due to family history are inclined to be screened.

Family Members of Long-Term Cancer Survivors

Sisters of breast cancer survivors

Brothers and sons of prostate cancer survivors

African American Euro-American

N = 163 Mean age = 47

N = 150 Mean age = 53

N = 150 Mean age = 54

Preventive health behaviors

• 71% obtain maintenance stage mammography

Preventive health behaviors

• 66% ever had GREc

Preventive health behaviors

• 80% ever had DREc

Average worries

Average worries

Average worries

Higher than average risk

Higher than average risk

Higher than average risk

• 65% f

^Clinical Breast Exam.

bProstate-Specific Antigen; Significance of comparison between men p = 0.0001. cDigital Rectal Exam; Significance of comparison between men p = 0.006. dPossible range 3-12.

eSignificance of comparison between men p = 0.004. -^Significance of comparison between men p = 0.0001.

^Clinical Breast Exam.

bProstate-Specific Antigen; Significance of comparison between men p = 0.0001. cDigital Rectal Exam; Significance of comparison between men p = 0.006. dPossible range 3-12.

eSignificance of comparison between men p = 0.004. -^Significance of comparison between men p = 0.0001.

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