by Anne Katz PhD, RN, CKN Survivorship Section Editor
I work in the Manitoba Prostate Centre where we see men with both benign and malignant prostate disease. Many of these men are elderly and often they leave a lingering odor behind them in the waiting room and examination room. Urology nurses are used to these odors and my nursing colleagues often raise their eyebrows at me when I wrinkle my nose in response. I am not judging the patient; it is not their fault that they have this problem. It is a side effect of treatment compounded by the fact that they don’t launder their clothes frequently or perhaps their families have gotten used to the smell or perhaps they don’t know how to address it without feeling shame and embarrassment. A recent article in the Journal of Cancer Survivorship Research and Practice (Alsadius et al., 2013) highlights this issue. The men in this study had radiation therapy for prostate cancer between 2 and 14 years previously. A testament to the importance of this issue is the response rate – 89% – from men over the age of 80 years.
Those who reported fecal body odor at least once a week also reported low quality of life (prevalence ratio 7.2, 95% CI 3.6 – 14.4) and low physical health (prevalence ratio 4.7 95% CI 2.4 – 9.2) as well as frequently feeling depressed (prevalence ratio 4.8, 95% CI 1.6 – 14.6). Reporting the odor of urine was also associated with low quality of life (prevalence ratio 7.2, 95% CI 1.8 – 7.4), poor physical health (prevalence ratio 3.6, 95% CI 2.1 6.3). These were all statistically significant when compared to those who perceived odor not at all or less often than once a week.
These statistics on the page do not tell the tale of the social consequences of urinary and fecal bother. Imagine watching the responses as others – strangers, health care providers, family and friends – react to the smell as you come close. We know that these men (and also women) often isolate themselves, their lives growing smaller and smaller as they avoid gatherings and social activities. Some try to mask the smell with perfumes and powders, harkening back to the ‘olden’ days when body odor was the norm and the gentry needed protection from the unwashed hordes. These don’t work well at all and often times make the odor worse.
In order for oncology care providers to intervene and help survivors with this problem, we need to ask about it and offer to help. It’s not an easy conversation and we don’t want to insult or offend. But if we are holding our breath, breathing through our mouths, or wrinkling our noses, the survivor knows and is ashamed. These unmentionable side effects are iatrogenic – we owe it to our patients to ask about it, suggest solutions, while at the same time seeking to avoid these side effects of treatment.
Alsadius , D., Olsson , C., Pettersson, N., Tucker, S., Wilderäng, U. & Steineck, G. (2013). Perception of body odor—an overlooked consequence of long-term gastrointestinal and urinary symptoms after radiation therapy for prostate cancer. Journal of Cancer Survivorship Research and Practice, 7, 652 – 658. Doi: 10.1007/s11764-013-0304-8
Dr Anne Katz is a clinical nurse specialist and AASECT-certified sexuality counsellor at CancerCare Manitoba. She has written 2 books on the topic of cancer survivorship (After You Ring the Bell: Ten Challenges for the Cancer Survivor [Hygeia Media] and Surviving after Cancer: Living the New Normal [Rowman & Littlefield]) and 3 on cancer and sexuality.
“I am thrilled to be taking on this new role as editor of the Survivorship Section for CKN. Initially you will see regular commentary from me on key aspects of the survivorship experience that I hope will lead you to think about, talk about with your patients and care providers, and then explore further in your own reading and research. Coupled with this will be key references to new research findings in this exciting growth area of cancer care.”
Dr. Katz’ professional life is focused on providing information, education and counselling to people with cancer and their partners about sexual changes that can occur during and after treatment. But there is another important aspect to this work; Dr. Katz wants every cancer patient to be able to have a discussion about sexuality with their health care providers. And so she travels across North America (as well as Europe and the Caribbean!) teaching health care providers to ask their patients about this important part of quality of life.
If you’d like to know more about Dr. Katz and the work she does, or if you’d like her to come to your city or town, health care facility or doctor’s office, you can contact her by email.
“I am always eager to spread the word and break the silence.”