In 2009, an estimated 192,280 women will be diagnosed with invasive breast cancer and an additional 62,280 women had in situ disease (American Cancer Society, 2009). Although the magnitude of women affected is alarming, equally significant are the ramifications of the illness for the spouse. Breast cancer is a couple’s illness, not a disease of the wife’s breast (Lewis, Fletcher, Cochrane, & Fann, 2008).
Distress (anxiety, depressed mood, physical symptoms) in spouses of women with early stage breast cancer has been demonstrated in studies using standardized questionnaires as well as interviews in the U.S. and other countries. Significantly elevated levels of distress are known to occur up to 3 years post diagnosis and in some studies spousal distress exceeds that of the diagnosed woman (Baider, Ever-Hadani, Goldzweig, Wygoda, & Peretz, 2003; Foy & Rose, 2001; Langer, Abrams, & Syrjala, 2003).
In the first known longitudinal study, Northouse’s team documented that the spouse’s level of distress was similar to the level of morbidity in their wives [Brief Symptom Inventory–BSI] and remained higher than normal levels at 3 days, 30 days, and 18 months (Northouse & Swain, 1987). In another seminal study of spouses whose wives had undergone a mastectomy, Wellisch’s team reported that spouses experienced disruptions in their sleep, eating, and ability to work that they attributed to their wife’s breast cancer (Wellisch, Jamison, & Pasnau, 1978).
Spouses are known to have concerns about their wife’s fatigue and other debilitating symptoms; sexual intimacy; the illness’ unpredictable nature, including fear of recurrence and uncertainty of outcomes; and personal and household disruptions (Ben-Zur, Gilbar, & Lev, 2001; Chekryn, 1984; Hilton, 1993; Hilton 1993a; Hilton, 1994; Hilton, 1994b; Hilton, Crawford, & Tarko, 2000; Hoskins, 1995; Lethborg, Kissane, & Burns, 2003; Lewis, Fletcher, et al., 2008; Longman, Braden, & Mishel, 1996; Longman, Braden, & Mishel, 1997; Mast, 1998; Nelson, 1996; Northouse, 1992; Northouse, 1994; Northouse, 1995; Northouse, 1996; Northouse & Swain, 1987; Skerrett, 2003; B. L. Walker, 1997; Walker & Eremin, 1996; Wellisch, et al., 1978).
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There are six qualitative studies of spouses’ reported concerns about their wife’s breast cancer but the majority of these studies involve spouses of women diagnosed 1.5-2.5 years prior or are limited to very specific experiences, e.g., the spouse’s response to the surgical scar (Hilton, et al., 2000; Lethborg, et al., 2003; Northouse, 1989; Sabo, Brown, & Smith, 1986; Samms, 1999; Zahlis & Shands, 1991). When we turn to studies relevant to the initial diagnostic and treatment period, only 3 interview studies included spouses of wives diagnosed an average of 13 or fewer months (Lethborg, et al.; Northouse; Zahlis & Shands). This means that we have a very limited understanding of spouses’ experience during the initial period of diagnosis and treatment. A summary of results from these 3 qualitative studies follows (Table 1).
Spouses described feelings of shock and disbelief (Lethborg, et al., 2003; Zahlis & Shands, 1991); helplessness (Lethborg, et al.); fear and sadness (Lethborg, et al.; Zahlis & Shands). They reported worrying about the extent of disease (Lethborg, et al.), cancer recurrence (Northouse, 1989; Zahlis & Shands), what the future might bring (Lethborg, et al.; Zahlis & Shands) and their wives’ survival (Northouse; Zahlis & Shands). A few spouses reported feeling guilty about not being able to do more to help their wives (Zahlis & Shands) or were self-critical about their own inability to support her (Zahlis & Shands). In addition, to describing their emotional response to the breast cancer, some described a physical response as well (Lethborg, et al.; Zahlis & Shands).
Spouses talked about their difficulty in waiting for test results and waiting for surgery to be over (Northouse, 1989; Zahlis & Shands, 1991). They found it hard to watch their wives struggle or be in distress (Lethborg, et al., 2003; Zahlis & Shands). Spouses reported a range of reactions when they viewed the surgical site. For some, it was “no big deal.” For others the physical disfigurement was shocking (Northouse; Zahlis & Shands). Some men felt their own feelings went unacknowledged by their wives and others (Lethborg, et al). Men felt their wives believed they were getting on with their life – that the illness had not impacted them. They felt that their own distress went unrecognized.
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Men reported the breast cancer impacted their relationship with their wives (Zahlis & Shands, 1991). For some, the breast cancer magnified already existing problems (Zahlis & Shands). Some worried that their wives would not be able to accept the breast loss (Northouse, 1989; Zahlis & Shands).
Men talked about what they did to support their wives. On a practical level, many said they changed their work schedules (Northouse, 1989), did more child care (Northouse; Zahlis & Shands, 1991) and assumed management of the household (Northouse; Zahlis & Shands). They worked to meet their wives’ emotional needs (Lethborg, et al., 2003) by being a sounding board, consoling her (Zahlis & Shands), assuring her that changes to her body had not altered their relationship, and by not allowing her to feel sorry for herself (Lethborg, et al.). They also talked about taking care of her physically and about needing to be strong for her (Zahlis & Shands).
Some men felt supported by others (Northouse, 1989) while others talked about feeling isolated and having insufficient support (Lethborg, et al., 2003). A few men talked about not knowing how to handle people who were non-supportive (Zahlis & Shands, 1991).
Across all three studies, spouses described what they did to cope with the breast cancer, including devising strategies, avoiding their own feelings and avoiding thinking about it (Lethborg, et al., 2003; Zahlis & Shands, 1991) and keeping busy (Zahlis & Shands). They worked to stay focused on the positive (Lethborg, et al.; Zahlis & Shands), drew from their religious beliefs (Northouse, 1989), and trusted in God (Zahlis & Shands). For some, their wives’ positive attitude helped them (Northouse). Spouses talked about taking control (Lethborg, et al.) by becoming educated about breast cancer (Northouse; Zahlis & Shands) and by helping make decisions about surgery and treatment (Zahlis & Shands). Spouses described taking things day by day and trying to make the most out of life (Lethborg, et al.).
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These three studies provide an important beginning description of the spouse’s early experience with his wife’s recently diagnosed breast cancer. But only one of the studies included spouses who were interviewed during the initial months of diagnosis and treatment (Northouse, 1989). The other two studies relied on spouses’ retrospective recall of the early days of the experience (Lethborg, et al., 2003; Zahlis & Shands, 1991). What is still needed is a study to examine spouses’ experience during the acute initial period of diagnosis and treatment of their wives’ breast cancer. The purpose of the current study is to more fully describe, in spouses’ own words, their experience with their wives’ newly diagnosed early stage breast cancer, focusing explicitly on the first six months of diagnosis and treatment.