“Sexual bother” is a term used in the urology literature to refer to the side effects of all sorts of different treatments as they relate to everything from sexual desire to actual erectile and sexual function, the ability to ejaculate, etc. Frankly, it is not a term we like a lot because it encompasses such a vast range of sexually problematic issues.
Having said that, “sexual bother” in its various forms is a critical and poorly addressed aspect of life after a diagnosis of prostate cancer, and the nature of the various forms of sexual bother is highly dependent on the patient’s diagnosis, his age and sexual function prior to diagnosis and treatment, the communication skills of the patient and his wife or partner(s), their ability to “let go” of prior norms regarding their sexual relationships and experiment with new forms of intimacy, you name it.
A new paper by Benedict et al. reports on “sexual bother” in a cohort of 80 patients receiving treatment for advanced prostate cancer at Memorial Sloan-Kettering Cancer Center. All these patients were on long-term androgen deprivation therapy (ADT) of some type. Benedict et al. sought to do three things:
- To describe sexual dysfunction and sexual bother in this group of patients
- To identify socio-demographic and health/disease-related characteristics related to sexual bother
- To evaluate associations between sexual bother and psychosocial well-being and quality of life.
To do this, they asked the patients to complete a series of well-known and validated survey tools that offer a series of definable outcomes, including
- The sexual function and sexual bother subscales of the Expanded Prostate Cancer Index Composite (EPIC-C)
- The Center for Epidemiologic Studies Depression Scale
- The Functional Assessment of Cancer Therapy-General scale, and
- The Dyadic Adjustment Scale
Here is a summary of their findings:
- The average (mean) age of the patients was 70 ± 9.6 years.
- The average period of time on ADT was 18.7 ± 17.3 months.
- Sexual dysfunction was commonplace among the patients (with an average EPIC-C sexual function score of 10.0 ± 18.0).
- Greater sexual bother (i.e., lower EPIC-C sexual bother scores) was associated with
- Younger patient age
- Fewer months on ADT
- After controlling for age, months on ADT, and current and pre-diagnosis sexual function, sexual bother correlated with
- More depressive symptoms
- Lower quality of life
- Greater sexual bother was related to greater dyadic satisfaction and greater cohesion (which was not what the authors had expected at all).
Current forms of ADT for advanced forms of prostate cancer are almost inevitably associated with high levels of sexual dysfunction and dissatisfaction because of their inevitable biological consequences. Considerable variation in the degree “sexual bother” has been well documented over the years and is again reported in this paper by Benedict and her colleagues. However, again indicating that we are starting to see a greater degree of focus on the psychosocial aspects of living with prostate cancer, Benedict et al. conclude that:
- Assessment of sexual bother may allow us to better identify men with advanced prostate cancer who are at risk for more general distress and lowered quality of life.
- Psychosocial interventions targeting sexual bother may complement medical treatments for sexual dysfunction and be clinically relevant, particularly for younger men and those first starting ADT.
The fact that greater sexual bother was identified between couples that supposedly had better “dyadic satisfaction” and cohesion is interesting and may be explainable through the idea that their greater degree of closeness and intimacy may actually have made the inability to consummate that intimacy sexually more annoying and frustrating for both partners (but it is not clear from the abstract of the paper that both partners had been interviewed or completed the various survey tools in this study, so we may only be getting the “male side” of the couples’ perspectives).
Filed under: Living with Prostate Cancer | Tagged: androgen, bother, deprivation, dysfuntion, function, sexual |
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Wow, what a milk-toast word selection for such a major thing! How about “sexual disaster”, that fits much better.
“Bother” as in, “Oh gee, I can’t drink coffee anymore”. Pathetic choice of descriptor words, as if it’s some minor thing. Pathetic!
Seriously, when are they going to start including these men’s partners in these surveys? It would give them a much more complete picture. …
And, yeah, sexual disaster for sure. Siberia. As a wife (now separated) of a prostate cancer patient, there is still rarely a night I don’t cry myself to sleep for the disaster it inflicted on us.
Clara, so sorry to hear of your plight. :(
I would concur with the term “disaster” vs bother.
Imagine having prostate cancer at 42 as I did and having a radical retropubic prostatectomy. Talk about complete destruction of your sex life.
I was so horrified of the cancer I just wanted my prostate gone. I was Gleason 3 + 3 = 6, by the way. I told the urologist that I didn’t care if I had to wear a diaper the rest of my life. Now, 6 years later and suffering from the destruction of my sex life, I wish I had prostate cancer back. I had a very good surgeon at Johns Hopkins and had a very good outcome — even as regards erectile dysfunction, but no matter how good your surgeon is you will be nowhere close to what you were before, not to mention that I suffer from severe urethral burning pain during and after intercourse. When it happens, …
The destruction of your sex life is the biggest sham I think that patients don’t get drilled into their heads by their doctors. Your sex life will be over. Period. … All I ever heard from my female friends was, “Oh, sex is not what’s important in a relationship to women.” Yeah, until you can’t have it anymore, then it’s just as important as anything else. … If I didn’t have two young children and I knew what I did now, I probably would not have gone through with the operation. You think it’s hard being married, try dating like this. …
I want my prostate back. … On the other hand, some people are in much worse positions from their cancers. … So, I really shouldn’t complain, but being newly divorced at 48, I have resigned myself to being alone the rest of my life.
No libido, no erection, no desire, is kind of a disaster, except that, having no libido has brought me back to my religion. I was too focused on sex. So it’s not a disaster; it’s a soul saver! My wife could not care less about sex. Any woman who leaves her husband because of lack of sex isn’t worth having as a wife IMHO!
I can’t resist the temptation to chime in. The number of comments elicited by a post on this subject shows how important it is.
For some reason, many men are reluctant to complain about loss of sexual function — perhaps for fear of being considered “unmanly” because they are “whining”. I have heard of urologists who actually denigrate patients who confront them about loss of “quality of life.” Human sexuality changes with age and illness, but it does not disappear. I would dare say that physicians who treat patients for prostate cancer without fully informing them about the adverse effects of treatment, including loss of sexual function, are pushing the limits of ethical practice. I think that a detailed discussion about the means of dealing with those effects and the time it will take to do so should be included. It may not be politically correct to say this, but I believe that men with prostate cancer have rights too. And a pragmatic man and a prudent physician will recognize that the response of a partner (or potential partner) is crucial. Making sure that they too are at least aware of potential consequences should be a prelude to treatment.
Sex is an important part of life. Mentally, physically, it’s a health issue. If it works for you having none, that’s great. But the majority of men, especially young men, think “disaster” more than “saver”.
Walt:
I agree that not being able to experience an orgasm is a disaster if you’re young. But prostate cancer is normally an old man’s disease at a time in life where sex is not all that important, and when women don’t want sex. I pity guys who get this awful disease when they’re young and still sexually active.
One of the critical issues in addressing the whole sex and quality of life issue is that there are major physiological and related differences between men of the same calendar age. Not everyone of 70 is in the same biological place. Having done what I do for many years, I am regularly surprised by the level of sexual desire and functioning of men and their spouses at all sorts of ages from 55 to 90. While prostate cancer certainly becomes more likely as one ages, and sexual interest and function do indeed tend to decline over the same time period, every patient (and couple) is different, and that is a critical factor in thinking through exactly what may be appropriate when it comes to the treatment that may be required, advisable, or simply possible.
What I find incredibly interesting about all of this and prostate cancer is that in the past, what, 50 years that men have been treated for this, the medical industry is just now barely beginning to suspect that this cancer destroys a man’s sex life and how important it is to the majority of men. Yet there seems to be absolutely no talk or research for that matter being done to see what can be done about reversing the side effects — other than throw some pills at the guy and laugh after he leaves the office. … I am fully aware of all the options to try and treat ED, but they are all old and most as barbaric as the surgery itself.
Even though I had low-risk disease, there was no way I would have opted for watchful waiting. Every person in the world is absolutely fear-struck when they are told they have cancer. Anyone who says different is lying. As the woman who commented earlier stated, everyone just wants the cancer gone first and cares nothing about the side effects. What I wonder about is whether women suffer the same issues after breast removal due to breast cancer. Whether you die from prostate cancer or not, it will destroy your life. I struggle everyday as all men do with the side effects. You look at women and know you’re not a man anymore. … If I did not have young children I might allow my mind to go in a different direction.
That is how devastating this cancer is. … Oh, but it’s the “good cancer”, remember …?
Dear Chris:
I am no expert, but I don’t think mastectomy is quite as devastating for women as prostate cancer is for men. On the other hand, I suspect that both cervical cancer and ovarian cancer may have a comparable degree of impact in that they can profoundly affect a woman’s fundamental ability to have satisfactory intercourse.
Chris,
Maybe get some professional help to deal with this incredibly vexing problem, bro. You won’t be alone the rest of your life.