Urinary and fecal incontinence has a profound effect on quality of life for survivors of gynecologic cancers; however, most survivors have effective practical and emotional coping strategies they use to deal with the situation, a study published in Supportive Care in Cancer has shown.1
In addition, study participants reported positive attitudes toward pelvic floor muscle training (PFMT) in terms of willingness to spend time and money on PFMT to improve their incontinence symptoms.
Incontinence, as a result of gynecologic cancer, places limits on survivors’ ability and/or willingness to exercise, engage in social activities, and participate in physical activities. However, survivors’ perception of the impact of incontinence on their quality of life is not well understood.
A team of researchers in Sweden conducted a qualitative interview content analysis study to better understand how gynecologic cancer survivors experience incontinence in relation to quality of life, participation in exercise and physical activities, and their perceptions of pelvic floor muscle training.
The study included 13 women, age 48 to 82 years, with urinary or fecal incontinence after treatment for gynecologic cancer. The participants had undergone radiation therapy, surgery, or surgery and radiation therapy 6 months to 21 years ago.
Qualitative content analysis resulted in determining 3categories and 13 subcategories that described the women’s responses: emotional reactions, thoughts, and musings that incontinence contributes to; adaption and strategies to maintain a good quality of life; and activity, PFMT, and information.
The women expressed the challenges of coping with incontinence as feelings of isolation or exclusion, fear and worry about leakage, and lack of freedom, but gratitude that their situation was not worse. They discussed strategies they use to adapt including accepting their situation and being more open about their situation with friends and loved ones.
However, participating in everyday activities such as shopping, gardening, and running errands were a challenge. Many social activities such as dancing, travelling, or going out to dinner were no longer possible. The women admitted that their situation also limited their sexual activities, even for those in established relationships. Those women whose partner had passed away were no longer interested in sexual relations, but admitted to probably having the same concerns as the women with partners if they were younger or had their partners.
Physical activity was another area in which most of the women felt limited. Some of the women had practiced pelvic floor muscle training on their own, as they had not been told to do so. Of those who knew of PMFT, some felt it would help and some expressed concerns about its effectiveness, whether it would hurt, and difficulty performing the exercises.
One disconcerting fact that came out of the data was that the women had not been told that incontinence was a possible side effect of gynecologic cancer, nor that PFMT during or after completing treatment could help. Some believe had they known about PFMT, they might have been able to cope better with their incontinence.
In an effort to quantify the value of PFMT to survivors of gynecologic cancer, the researchers asked a question regarding a willingness to pay for such a program. Almost all of the women reported a willingness to spend at least 7 hours a week practicing PFMT exercises. Of the 13 women, 11 placed a money value for an effective treatment for incontinence at almost 4 months of salary, according to the mean gross income level in Sweden, the study country.
The researchers conclude that urinary and fecal incontinence after gynecologic cancer and treatment impedes quality of life for survivors. A lack of information is further detrimental to their ability to cope with the situation. Oncology care teams should make sure patients with gynecologic cancer are aware of this side effect, and they should evaluate the efficacy of PFMT for survivors of gynecologic cancers.
1. Lundgren A, Dumberger G, Enblom A. Experiences of incontinence and pelvic floor muscle training after gynaecologic cancer treatment. Support Care Cancer. 2016 Sep 5. doi: 10.1007/s00520-016-3394-9.