Slowly but surely we are seeing increasing recognition in the clinical community of the need to ensure that prostate cancer patients and their spouses/partners really understand the likely consequences of treatment.
In the journal Urology, Paich et al. have provided detailed information from what appears to have been either one or a series of seminars conducted in 2012 and 2013 in Michigan for prostate cancer patients scheduled for radical prostatectomy and their spouses/partners. The (very reasonable) assumption was that appropriate education of patients and their care-givers prior to surgery would help everyone to have reasonable expectations about outcomes and functional recovery after radical prostatectomy. The authors wanted to be able to actually measure the degree of acceptance and knowledge about functional recovery gained at a pre-operative group seminar for patients and partners.
The education was offered at what we assume to have been several 2.5-hour-long interactive seminars that included presentations about surgery-related urinary and sexual outcomes, rehabilitation, and couples’ work towards recovering sexual intimacy. A satisfaction and knowledge survey was given to all attendees immediately afterward.
Here are the core results of the study.
- 618 patients were actually scheduled for surgery within the study time frame.
- 426/618 patients actually attended a seminar together with 342 of their partners.
- 323 couples provided complete data by completing the satisfaction and knowledge surveys.
- > 90 percent of participants found the seminar informative.
- 74 percent of participants found the group setting comfortable.
- 84 percent of participants found travel to the seminar to be burdensome.
- 84 percent of patients and 90 percent of partners expected some degree of urinary incontinence and understood recommended rehabilitation strategies to regain bladder control.
- 84 percent of patients and 78 percent of partners expected post-surgery sexual activity to be “different” to what it was prior to surgery.
- 73 percent of patients and 65 percent of partners expected surgery to reduce quality of erectile function.
- Couples were commonly “incongruent” regarding frequency of incontinence, likelihood of erectile dysfunction, and sex being different after surgery.
The last finding implies that patients and their spouses/partners were often “not on the same page” about post-surgical expectations. The research team actually found that the patients were generally more realistic that their spouses/partners in their expectations.
Paich and her colleagues concluded that:
A pre-operative psychoeducational group seminar on the recovery from RP side-effects promotes realistic expectations and is acceptable to patients and partners. Incongruent couples may need further instruction after surgery. Web-based methodology could improve access and should be studied in future research.
Making sure that patients and spouses/partners are both on the same page about expectations after treatment for prostate cancer, and that couples can actually talk to each other about how to address some if not always all of the issues that do (and don’t) arise, can be crucial factors in interpersonal family relationships after treatment for prostate cancer … but the commitment to ensure that couples understand this and have access to the appropriate tools to manage the issues has been sadly lacking.
Few health care systems are really ready to address this problem. Many couples have a hard time even talking to each other about this type of issue. And the US medical insurance system is ill-designed to compensate health care providers for this type of care.
One has to assume that the availability of the Internet has made a huge difference to the base information available to patients and their spouses/partners about what to expect after treatment for prostate cancer. However, actually experiencing, talking about, and dealing with these problems is a whole other matter … especially when there are serious communications gaps between all the parties concerned. One of the more classic problems is the unwillingness of many physicians to even acknowledge (let alone seek to answer) questions that spouses/partners ask at clinical meetings with patients prior to treatment. It can seem to many spouses/partners as though they are effectively invisible to such clinicians.
This is an area we need the clinical community to get much better at addressing as soon as possible. The specific problems that are presented by prostate cancer are unusual in this context — for profound psychosocial and psychosexual reasons.
Filed under: Living with Prostate Cancer, Management, Treatment | Tagged: education, expectation, Management, prostatectomy, radical, recovery, surgery |
THE "NEW" PROSTATE CANCER INFOLINK 
I wonder if this would have helped us. I guess it couldn’t have hurt. I tried to get my husband to read that book, Saving Your Sex Life: A Guide for Men after Prostate Cancer, and he wouldn’t do it. Unbeknownst to me at the time (although I was worried about it) his plan was just to wait until he was all back to normal. … So, it a been over the years with no sex at all. I presume I will never have sex again.
And I’ve said this before on here, but I will never forget how poorly his urologist’s office treated me. I mean, I’m sitting there hearing them tell me (my perception) that at a healthy, still attractive and sexually alive 54 years old, my sex life was over … but never once did they address my concerns, my questions, or my phone calls. Honestly, they ruined my life.
Dear Clara:
Unfortunately I suspect that your husband’s decision making may have begun with who he decided would do his surgery. If you read this article on “How to pick a prostate cancer surgeon“, you will see that the author (a urologic oncologist himself) includes very clearly that:
“I want someone who is available and accessible — My wife will have questions. So will my friends. My surgeon will give me a way to let them ask these questions (directly in the case of my wife, and through me in the case of my friends). I encourage my own patients to ask questions by email. I would want my surgeon to make that possible for me.”
I addressed this issue on my web site and recently sent my paper on the subject “Erectile dysfunction — unreasonable expectations” to several online prostate cancer support lists.
The sitemaster is absolutely correct. After consulting several, yes several, urologists I was extremely fortunate to find one locally who understood my concerns about the effects of surgery. Before the operation, he actually talked at length with me and my wife. Afterwards, he was proactive in addressing the resulting incontinence and impotence. Unfortunately, all the others painted a picture in which I would be lucky just to survive the cancer, let alone be glad to have done so.
It has been my experience that many people erroneously take sexual and urinary functions for granted, and they, also erroneously, assume that surgeons have an interest in rehabilitation. My advice is to shop around for a surgeon who believes that his responsibility does not end in the recovery room.