PROSTATE CANCER AWARENESS MONTH
Finding emotional support during prostate cancer treatment
Prostate cancer impacts more than physical health. It can also impact a person’s emotional health and relationships. On Inspire, patients and their partners find emotional support for the impacts of prostate cancer treatments on sexual function.
Prostate cancer impacts more than physical health. It can also impact a person’s emotional health and relationships. Because of these impacts, prostate cancer has come to be known as a “couple’s disease.” However, emotional support is rarely offered as part of treatment. In the Inspire Prostate Cancer Community, members share the impacts of prostate cancer on their emotional and sexual relationships, sharing important, first-hand knowledge that may go unaddressed by their doctors.
Types of prostate cancer treatments and their health impacts
According to ZERO, a prostate cancer patient advocacy group, nearly 3 million men in the US are living with prostate cancer. One in eight men will be diagnosed with the disease in his lifetime. Prostate cancer treatments vary depending on the extent and invasiveness of the cancer. Treatment types include:
– Active surveillance
– Radical prostatectomy
– Androgen deprivation therapy (ADT)
– Radiation therapy, including either external beam or brachytherapy
Each type of prostate cancer treatment can impact the urinary tract, the gastrointestinal tract and the urogenital system. These impacts can lead to incontinence, bowel problems and sexual dysfunction. While these potential impacts are often mentioned by doctors, prostate cancer patients may not foresee the long-lasting impacts these treatments may have on their intimate partnerships and family dynamics.
The impacts of prostate cancer treatments on sexual function
Possible impacts to sexual function vary based on treatment type. In a study of prostate cancer patients, men who had normal sexual function before treatment reported the following impacts two years after treatment:
– 57% reported poor sexual function after surgery
– 34% reported poor sexual function after brachytherapy
– 27% reported poor sexual function after external beam radiation
– 25% reported poor sexual function after active surveillance
These numbers represent a large number of men left dealing with enormous change in their lives.
Impacts of prostate cancer on intimate partner and family dynamics
Commonly, prostate cancer patients do not suffer alone. In one study, 42% of people diagnosed with prostate cancer reported changes in their sexual relationships. It is for this reason that prostate cancer has been called a couple’s disease.
ZERO – The End of Prostate Cancer has partnered with Inspire to provide an online support community for those affected by prostate cancer. The community has over 36,000 members. People without prostates, spouses and partners make up as much as 30% of the community’s members. Patients and their partners alike turn to the Prostate Cancer Community to share their stories, find information and seek emotional support. Discussions in the Inspire Prostate Cancer Community confirm the impacts of prostate cancer on relationships and family dynamics.
In one case, a spouse wrote that her husband “has become a different person” since his radical prostatectomy, a type of surgical treatment for prostate cancer. She described feeling “heartbroken.” Considering divorce, she reached out to members of the Inspire community for answers. Responses to her posts reveal other members have had similar struggles.
“I can tell you that [prostate cancer treatment] has done damage to me/my marriage also.”
“Typically, a prostatectomy leads to erectile dysfunction (ED). 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.”
How Inspire members feel about their prostate cancer treatment and symptoms
In many cases, having a place to share their feelings can help patients and their intimate partners feel more supported and less alone on their journey through diagnosis and treatment. Because Inspire is a safe, moderated and anonymous environment, members share the real, unfiltered feelings that come up for them throughout their diagnosis and treatment.
In a sample of Inspire public posts, 25% of the posts described feelings of depression. Some members described having suicidal ideations. Members described experiencing a “loss of manhood.” Three posts described sexual dysfunction as “losing a friend.” Members described the loss of intimacy with their spouses and their feelings of inadequacy. Other members wrote about having flashbacks and dreams about getting cancer again. Some felt guilty for being upset about their loss of sexual function while others are still battling cancer.
Not all patients experience the same impacts of treatment, however. The Inspire community also provides stories of hope and encouragement. In one such example, an Inspire member reported a full return to sexual function in the weeks following his radical prostatectomy. Other members suggest patients experiment with a range of different treatments to address sexual dysfunction. In many cases, prostate cancer patients were encouraged to seek out therapy, psychiatry and support groups to address any anger, depression or anxiety that they may experience following treatment. In some cases, members recommend a simple shift in perspective:
“Most [people] love their partners for more than sex. If you can engage in sensual play then you can still connect.”
Patients and their partners crave more emotional support during treatment
The social impacts of prostate cancer require better support prior to, during and after treatment. For many patients, relationship counseling and emotional guidance are not commonly offered as part of prostate cancer treatment. However, this type of support is crucial to quality of life during this journey. One response to the spouse’s post is a plea for more to be done to help patients, spouses and families:
“You often hear that [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 but could not find much more than what is [on Inspire]. 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, Gleason score, but never talk about the 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.”
Until more support is offered by doctors, Inspire members can turn to one another
Sometimes, the simple availability of the Inspire community provides the kind of understanding, support and information that give families courage. They finally know they are not the only ones looking for answers. More importantly, it gives patients a better, more realistic understanding of prostate cancer diagnosis and treatment. Patients can get support for managing these impacts and maintaining quality of life. Until more can be done to offer relationship and emotional counseling during prostate cancer treatment, Inspire members can turn to the Prostate Cancer Community for much needed information, support and guidance.
Are you looking for support or information about prostate cancer or another health condition? Join the Inspire community today.
DISCLAIMERMember comments have been lightly edited for length and clarity. This content is for general informational purposes only and does not necessarily reflect the views and opinions of any organization or individual. The content should not be used as a substitute for professional medical advice, diagnosis, or treatment. Please consult your healthcare provider about any questions you may have regarding a medical condition.
“One small positive thought in the morning can change your whole day”
– Dalai Lama XIV