Prostate Cancer Survivors Avoid Therapy for Sexual Side Effects

MIAMI – Faced with erectile dysfunction following prostate cancer surgery, many men adopt an avoidant coping style that inadvertently interferes with rehabilitation efforts to spare them long-term sexual side effects.

"We have ways of helping men to get their erections back; that isn’t the issue," Christian J. Nelson, Ph.D., said at the annual conference of the American Psychosocial Oncology Society.

"The issue is, men avoid and drop out of rehabilitation programs."

Avoidance was one key theme raised by 35 men who had undergone radical prostatectomy for prostate cancer 2-3 years prior to being recruited into focus groups by Dr. Nelson and his colleagues as an initial step in devising a more effective approach to erectile dysfunction (ED) rehabilitation. He presented results of a systematic analysis of those themes at the meeting, and offered a preview of the ongoing study that resulted.

Dr. Nelson described a cycle in which men experienced frustration, shame, and embarrassment over ED during a sexual experience following surgery, then began avoiding intimate contact due to anxiety. Relationship issues, depression, and increased frustration often followed.

"It’s absolutely devastating," one focus group participant told him.

Another remarked, "It’s like the ground you walked on since you were a teenager is gone."

Rather than seek help, many men acknowledged that they dealt with ED by withdrawing emotionally, sidestepping the potential for intimacy.

"Doc, it’s fear. It’s fear, Doc," another participant told Dr. Nelson.

"Men are struggling [on average] for about 2 years before they actually pursue treatment," said Dr. Nelson, a psychologist at Memorial Sloan-Kettering Cancer Center in New York.

Ideally, he explained, ED rehabilitation should begin as soon as possible after surgery to maintain blood flow and muscle tone, and "biology dictates the best treatment."

A common, but temporary, effect of nerve-sparing surgery is not only ED, but also stretching of the nerves responsible for the nitric oxide release triggered by oral phosphodiesterase inhibitor drugs. Pills such as sildenafil (Viagra) and taldenafil (Cialis) are effective in only about 20% of men following surgery, so after a brief trial injection therapy is recommended for the maintenance of erections over the 18-24 months that it may take to recover what erectile function remains.

In addition to the barrier of avoidance, men adamantly complained to focus group researchers that they were not properly told before surgery about postsurgical side effects, including ED and its treatments.

"It was ... Theme One ... and clearly the most predominant theme [in the focus groups]," said Dr. Nelson. "We don’t know if surgeons are telling patients about side effects, and they [patients] are thinking about the surgery and just not hearing the information – or whether the surgeons are not giving the information. But clearly, there was a lot of frustration and anger."

While men said they found the idea of penile injections "freakish and barbaric," they did not find them as painful as they had feared. Some saw the long-term benefits of injection therapy to be worth their initial reluctance, but one remarked, "This is the most humiliating thing I’ve ever done in my life."

Considering the trend to diagnose and treat earlier-stage prostate cancer in younger men, combined with an 85% prevalence of ED 4 years post surgery, "it’s an important survivorship issue," Dr. Nelson said.

Drawing from focus group findings, he and his team were encouraged by men’s humor in discussing difficult and awkward topics, offering a potential guidepost for future interventions. He also said men were "not overly enthusiastic" about the proposed idea of psychological interventions during rehabilitation, but advised that such efforts might be better accepted if they were characterized as "coaching."

Indeed, Dr. Nelson and his colleagues drew on the focus group findings to launch a randomized controlled trial of an intervention based on Acceptance and Commitment Therapy, a psychological orientation that encourages participants to define values that are important to them. Over time, the goal is to learn to tolerate distress and overcome barriers in order to achieve goals associated with those prized values, Dr. Nelson explained.

Enrollment in the trial has commenced, and a handful of participants in each group have completed the intervention (or a control condition) during injection training for ED.

"An initial peek at the data looks promising," he said.

Funding for the study was provided through a grant from the National Cancer Institute.

MIAMI – Faced with erectile dysfunction following prostate cancer surgery, many men adopt an avoidant coping style that inadvertently interferes with rehabilitation efforts to spare them long-term sexual side effects.

"We have ways of helping men to get their erections back; that isn’t the issue," Christian J. Nelson, Ph.D., said at the annual conference of the American Psychosocial Oncology Society.

"The issue is, men avoid and drop out of rehabilitation programs."

Avoidance was one key theme raised by 35 men who had undergone radical prostatectomy for prostate cancer 2-3 years prior to being recruited into focus groups by Dr. Nelson and his colleagues as an initial step in devising a more effective approach to erectile dysfunction (ED) rehabilitation. He presented results of a systematic analysis of those themes at the meeting, and offered a preview of the ongoing study that resulted.

Dr. Nelson described a cycle in which men experienced frustration, shame, and embarrassment over ED during a sexual experience following surgery, then began avoiding intimate contact due to anxiety. Relationship issues, depression, and increased frustration often followed.

"It’s absolutely devastating," one focus group participant told him.

Another remarked, "It’s like the ground you walked on since you were a teenager is gone."

Rather than seek help, many men acknowledged that they dealt with ED by withdrawing emotionally, sidestepping the potential for intimacy.

"Doc, it’s fear. It’s fear, Doc," another participant told Dr. Nelson.

"Men are struggling [on average] for about 2 years before they actually pursue treatment," said Dr. Nelson, a psychologist at Memorial Sloan-Kettering Cancer Center in New York.

Ideally, he explained, ED rehabilitation should begin as soon as possible after surgery to maintain blood flow and muscle tone, and "biology dictates the best treatment."

A common, but temporary, effect of nerve-sparing surgery is not only ED, but also stretching of the nerves responsible for the nitric oxide release triggered by oral phosphodiesterase inhibitor drugs. Pills such as sildenafil (Viagra) and taldenafil (Cialis) are effective in only about 20% of men following surgery, so after a brief trial injection therapy is recommended for the maintenance of erections over the 18-24 months that it may take to recover what erectile function remains.

In addition to the barrier of avoidance, men adamantly complained to focus group researchers that they were not properly told before surgery about postsurgical side effects, including ED and its treatments.

"It was ... Theme One ... and clearly the most predominant theme [in the focus groups]," said Dr. Nelson. "We don’t know if surgeons are telling patients about side effects, and they [patients] are thinking about the surgery and just not hearing the information – or whether the surgeons are not giving the information. But clearly, there was a lot of frustration and anger."

While men said they found the idea of penile injections "freakish and barbaric," they did not find them as painful as they had feared. Some saw the long-term benefits of injection therapy to be worth their initial reluctance, but one remarked, "This is the most humiliating thing I’ve ever done in my life."

Considering the trend to diagnose and treat earlier-stage prostate cancer in younger men, combined with an 85% prevalence of ED 4 years post surgery, "it’s an important survivorship issue," Dr. Nelson said.

Drawing from focus group findings, he and his team were encouraged by men’s humor in discussing difficult and awkward topics, offering a potential guidepost for future interventions. He also said men were "not overly enthusiastic" about the proposed idea of psychological interventions during rehabilitation, but advised that such efforts might be better accepted if they were characterized as "coaching."

Indeed, Dr. Nelson and his colleagues drew on the focus group findings to launch a randomized controlled trial of an intervention based on Acceptance and Commitment Therapy, a psychological orientation that encourages participants to define values that are important to them. Over time, the goal is to learn to tolerate distress and overcome barriers in order to achieve goals associated with those prized values, Dr. Nelson explained.

Enrollment in the trial has commenced, and a handful of participants in each group have completed the intervention (or a control condition) during injection training for ED.

"An initial peek at the data looks promising," he said.

Funding for the study was provided through a grant from the National Cancer Institute.

MIAMI – Faced with erectile dysfunction following prostate cancer surgery, many men adopt an avoidant coping style that inadvertently interferes with rehabilitation efforts to spare them long-term sexual side effects.

"We have ways of helping men to get their erections back; that isn’t the issue," Christian J. Nelson, Ph.D., said at the annual conference of the American Psychosocial Oncology Society.

"The issue is, men avoid and drop out of rehabilitation programs."

Avoidance was one key theme raised by 35 men who had undergone radical prostatectomy for prostate cancer 2-3 years prior to being recruited into focus groups by Dr. Nelson and his colleagues as an initial step in devising a more effective approach to erectile dysfunction (ED) rehabilitation. He presented results of a systematic analysis of those themes at the meeting, and offered a preview of the ongoing study that resulted.

Dr. Nelson described a cycle in which men experienced frustration, shame, and embarrassment over ED during a sexual experience following surgery, then began avoiding intimate contact due to anxiety. Relationship issues, depression, and increased frustration often followed.

"It’s absolutely devastating," one focus group participant told him.

Another remarked, "It’s like the ground you walked on since you were a teenager is gone."

Rather than seek help, many men acknowledged that they dealt with ED by withdrawing emotionally, sidestepping the potential for intimacy.

"Doc, it’s fear. It’s fear, Doc," another participant told Dr. Nelson.

"Men are struggling [on average] for about 2 years before they actually pursue treatment," said Dr. Nelson, a psychologist at Memorial Sloan-Kettering Cancer Center in New York.

Ideally, he explained, ED rehabilitation should begin as soon as possible after surgery to maintain blood flow and muscle tone, and "biology dictates the best treatment."

A common, but temporary, effect of nerve-sparing surgery is not only ED, but also stretching of the nerves responsible for the nitric oxide release triggered by oral phosphodiesterase inhibitor drugs. Pills such as sildenafil (Viagra) and taldenafil (Cialis) are effective in only about 20% of men following surgery, so after a brief trial injection therapy is recommended for the maintenance of erections over the 18-24 months that it may take to recover what erectile function remains.

In addition to the barrier of avoidance, men adamantly complained to focus group researchers that they were not properly told before surgery about postsurgical side effects, including ED and its treatments.

"It was ... Theme One ... and clearly the most predominant theme [in the focus groups]," said Dr. Nelson. "We don’t know if surgeons are telling patients about side effects, and they [patients] are thinking about the surgery and just not hearing the information – or whether the surgeons are not giving the information. But clearly, there was a lot of frustration and anger."

While men said they found the idea of penile injections "freakish and barbaric," they did not find them as painful as they had feared. Some saw the long-term benefits of injection therapy to be worth their initial reluctance, but one remarked, "This is the most humiliating thing I’ve ever done in my life."

Considering the trend to diagnose and treat earlier-stage prostate cancer in younger men, combined with an 85% prevalence of ED 4 years post surgery, "it’s an important survivorship issue," Dr. Nelson said.

Drawing from focus group findings, he and his team were encouraged by men’s humor in discussing difficult and awkward topics, offering a potential guidepost for future interventions. He also said men were "not overly enthusiastic" about the proposed idea of psychological interventions during rehabilitation, but advised that such efforts might be better accepted if they were characterized as "coaching."

Indeed, Dr. Nelson and his colleagues drew on the focus group findings to launch a randomized controlled trial of an intervention based on Acceptance and Commitment Therapy, a psychological orientation that encourages participants to define values that are important to them. Over time, the goal is to learn to tolerate distress and overcome barriers in order to achieve goals associated with those prized values, Dr. Nelson explained.

Enrollment in the trial has commenced, and a handful of participants in each group have completed the intervention (or a control condition) during injection training for ED.

"An initial peek at the data looks promising," he said.

Funding for the study was provided through a grant from the National Cancer Institute.