Att leva med lokaliserad prostatacancer : "oss män emellan"

Sammanfattning: The purpose of this thesis is to explore how men experience living with localized prostate cancer. It includes four substudies carried out between 1997 and 2005. To gather data, the men were interviewed at home and the interviews were recorded. The men (n=27; ages 60-70) who participated in the substudies had a PSA ≤10 ng/ml at the time of diagnosis, and had what is known as low-risk prostate cancer. Seven of the men chose to “wait and see” how the disease would progress after receiving the diagnosis. Twenty men chose curative treatment (10 men external radiation therapy, 10 men radical surgery). The interviews were analyzed using a phenomenological hermeneutical method inspired by the philosophy of Paul Ricoeur, and qualitative content analysis. Men who live with localized prostate cancer perceive the disease as life-threatening, unpredictable, and without early symptoms, which creates a sense of uncertainty, worry, anxiety, despair, and fear of death. Men primarily share perceptions of the disease and treatment with their wives and relatives, as well as with other men in the same situation. They avoid talking about their illness, and keep their innermost thoughts about their disease, prognosis, and the future to themselves. The choice to share their thoughts and feelings only sparingly with others is related in part to the perceived stigmatization of the diagnosis, as well as to consideration for friends and family. The men report that external radiation therapy and radical surgery have negative side effects such as erectile dysfunction, urinary incontinence, and intestinal leakage. They describe the side effects as socially isolating; for example, urinary leakage can require a change of incontinence pads and clothing, and they feel that they smell bad. Men with erectile dysfunction describe themselves as maimed, and their sex lives have changed or disappeared. They report a change in their self-esteem and identity as men and they long for life as it was before the diagnosis, when they felt they had control over their bodily functions. A few men describe a sense of being literally and figuratively “exposed” when they are undressed for examinations or participate in discussions with female doctors and nurses about their erectile dysfunction. They do not describe this perception in the same way with respect to contact with male personnel. In the new situation after treatment, men try to regain a perceived sense of control in their daily lives, over the disease and the effects of treatment. They experience a sense of control over the disease through regular PSA tests; the implications of regular PSA tests can be interpreted as a life preserver in an uncertain world, considering that at the time they were diagnosed they had no symptoms and only had a PSA elevation. The PSA is important for this sense of control, and each PSA test is preceded by tense expectation. The PSA level is described as a reliable expression of the medical condition. The men cannot trust that their own perception of feeling healthy means that the disease is under control. Low and stable PSA levels over a long period of time give a sense of safety, security, and control over the situation. If the PSA climbs, the men feel that despite everything, they have caught it in time for further treatment. Discussions with other men with prostate cancer are also described as a way of having control over the situation. The men's endeavor to reconcile themselves to the new situation can be understood as a process, where they describe various strategies which can be used to forget the “cancer perspective” and achieve a perception of safety and security. Reconciliation with a new situation can be interpreted as a reorientation after the trauma of the cancer diagnosis. The study results show that the men are restrained in communicating their needs to others, which can be interpreted as their having a greater need for support and information than indicated by their signals. Having an internal image of what a man should be like can be an obstacle to showing these needs.