Prostate Cancer: “A Couple’s Disease”

By Kathleen Hoffman, PhD, MSPH

Prostate cancer impacts not just the physical health of the individual but also their emotional and social health. A study of patients and their partners compared satisfaction with treatment, worry about cancer, and the consequences of treatment on their relationship. Twenty-five percent said that their personal activities were negatively impacted by prostate cancer diagnosis and treatment and 42 percent reported their relationships with their partners, especially their sexual relationships, were negatively affected.1

Prostate cancer has been called a couple’s disease. Recently, a spouse posted in the Us TOO Prostate Cancer Support Community on Inspire that, since his radical prostatectomy, her husband “has become a different person.” She is “heartbroken” and considering divorce reaching out to the men and women in the community for answers. Responses to her posts reveal others have  similar struggles:

“I can tell you that it [prostate cancer treatment] had done damage to me/my marriage also.”

“Typically, a prostatectomy leads to ED…And that can make a man feel completely inadequate as a marriage partner, which can cause him to withdraw from the marriage emotionally… which could show itself as anger with his spouse.”

“Us TOO International” has partnered with Inspire to provide an online support community for those affected by prostate cancer. The Us TOO Prostate Cancer Support Community on Inspire has over 24,000 members, with around 30 percent women.

According to the Us Too Prostate cancer website, nearly 3 million men in the US are living with prostate cancer. Treatment depends on the extent and invasiveness of the cancer.  One of the options for men with low-risk or favorable-risk (men with a Gleason score of 6 or less and a PSA level of less than 10 ng/mL) is simple active surveillance.2 But treatment also includes radical prostatectomy, androgen deprivation therapy (ADT), and radiation therapy (either external beam or brachytherapy). All of these treatments can have side effects that may impact the urinary tract, causing incontinence, obstruction and irritation; the gastrointestinal tract, causing bowel problems; the urogenital system,  causing sexual dysfunction — sometimes affecting more than one.3

A study published in March 2017 measured quality of life using the Prostate Cancer Symptom Indices. Over one thousand men who had been diagnosed between January 2011 and June 2013 participated in the study. Their treatment decisions varied; 27% chose active surveillance, 41 percent radical prostatectomy, 22% external beam radiotherapy, and 10 percent brachytherapy. Participants answered the survey before treatment, 3, 6, and 24 months after their treatment. Results from the surveys compared those who chose active surveillance to those who chose treatment.

At the two-year mark, 57 percent of the men who reported normal sexual function before treatment reported poor function after having surgery, as did  25 percent choosing active surveillance. For those who had the different radiotherapies, 27 percent of those treated with external beam and 34 percent with brachytherapy experience poor function.3 That is a significant number of men, and their intimate partners, left dealing with an enormous change in their lives.

What Members Say

Depression and Loss

To understand further, 63 public posts by 25 unique members discussing sexual dysfunction in the Us TOO Prostate Cancer Support Community on Inspire were qualitatively analyzed. About 25 percent of the posts described experiences of depression, some members described having had suicidal ideations. Members discussed feelings such as loss of manhood (10 percent of posts). Three posts described having sexual dysfunction as “losing a friend.” Members described loss of intimacy with spouses and experiencing feelings of inadequacy (7 percent of postings).

Other members wrote about having flashbacks and dreams about getting cancer again, as well as feeling guilty for being upset about their loss of function when others are still battling cancer.

Members Support Each Other: ADT, Antidepressants, ED treatments

Most of the posts involved members providing information and emotional support. Support suggestions included letting others know that ADT may be the cause of depression and that it decreases interest in sex (10 percent of posts).

Recommendations included using antidepressants (17 percent of posts), with specific recommendations to ask physicians for treatments including Viibryd, Wellbutrin, Cymbalta, Valdoxan and Moclobemide. Zoloft was recommended by some, but many mentioned that SSRIs reduce sexual interest or function.

Some suggested seeing a therapist or psychiatrist along with  participating in a prostate cancer support group (19 percent of posts).

Members endorsed a number of medications for erectile dysfunction. These included specific mentions of  Viagra, Cialis as well as Bi-Mix, Tri-Mix, and intracavernosal injections. Testosterone replacement therapy was mentioned as well. Others wrote about getting a penile implant, using a vacuum pump VED, and utilizing a viberect.

“There’s more to life”

Finally, a few members found their answer in “tough love,” advising others to “get over it” by considering that “there’s more to life and intimacy than sexual intercourse,” comments reflecting a view that, for now, being alive was more important than this loss.

Published research

These findings track closely to published study results. One study interviewed 19 men under 65 who had radical prostatectomy as their treatment. The side effect of sexual dysfunction impacted the men’s self-image and self esteem. Researchers found that the interviewees expressed feelings about “paying a price” to survive and also having concerns about “death lurking.” 4  Another study looking at patients on ADT found that patients experienced “significant declines” in quality of life and on intimate relationships when comparing baseline, 3 and 6 months on the treatment.5 Surveys of patients receiving ADT show high proportions of men experiencing ED, reduced sexual desire and sexual activity. 6<s/up> 

A Cry for Help

The impact of prostate cancer necessitates support and preparation prior to, and after, treatment. It is apparent from the post by the spouse considering divorce that relational and sexual counseling, preparation and guidance are not commonly offered or emphasized as part of treatment of prostate cancer, and would be potentially crucial to quality of life during this journey. One response to her posting is a plea for more to be done to help patients, spouses, and families:

“You often hear that it [prostate cancer] is a couple’s disease and we only take that to mean the loss of intimacy. We never fully understand how destructive it is to families. Nobody ever gives warning of the true implications of treatment. We only learn of it too late…Today I looked for forums of support for those like you but could not find much more than is here. [emphasis added] What I see is a need for couples support prior to treatment, at the hospital level…Little likelihood of that ever happening…So, we go prattle on about recurrence rates, nerve sparing, radiation types, what our uncle Norm did and his PSA, Gleason score, but never talk about impact on families other than saying it is a couple’s disease, and that, only in passing. Honestly, it makes me question if we are better off seeking treatment at all. We might be better off just living with it until we die surrounded by a loving family instead of tearing up a family and living miserably.”

Sometimes the simple availability of the forum sponsored by US Too International provides the kind of understanding, support, and information that give families courage. They finally know they are not the only ones looking for answers. As Us TOO International’s website says,

“Through our support groups, online support services, newsletters, educational materials and events, Us TOO will help transform resignation into determination and fear into Hope.”2

Download our case study: “Researching Treatment Options in Online Community Forums and Healthcare Decision-making”

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References:

1 Ramsey, S. D., Zeliadt, S. B., Blough, D. K., Moinpour, C. M., Hall, I. J., Smith, J. L., … Penson, D. F. (2013). Impact of prostate cancer on sexual relationships: a longitudinal perspective on intimate partners’ experiences. The journal of sexual medicine, 10(12), 3135–3143. doi:10.1111/jsm.12295

2https://ustoo.org

3Chen RC, Basak R, Meyer A, et al. Association Between Choice of Radical Prostatectomy, External Beam Radiotherapy, Brachytherapy, or Active Surveillance and Patient-Reported Quality of Life Among Men With Localized Prostate Cancer. JAMA. 2017;317(11):1141–1150. doi:10.1001/jama.2017.1652

4https://www.sciencedirect.com/science/article/pii/S1462388917300388

5https://link.springer.com/article/10.1007/s000520-018-4251-9

6https://onlinelibrary.wiley.com/doi/full/10.1002/cncr.29672