The debilitating side effects of prostate cancer treatment must be one of the world’s worst kept secrets. But physicians still struggle to communicate this clearly to their patients when they are making treatment decisions. This is according to a journal article published last week in the Journal of Prostatic Cancer and Prostatic Diseases looking at initial prostate cancer treatment consultations.
More than half of the physicians at a top US hospital either didn’t mention risks of erectile dysfunction and/or urinary issues, mentioned them in name only or in broad generalisations, whether they were describing surgical or radiation treatment.
Doctors not talking about urine control problems
In the radical prostatectomy cases studied, 12% of doctors didn’t even mention the risk of urinary incontinence after surgery. A further 22% mentioned it in name only, and another 8% only gave broad generalizations. And example of the generalizations’ noted: “Patients do really well after the surgery functionally, [with] minimal effect on potency and continence.”
For those preparing their patients for radiation treatment, 22% didn’t mention the risk of lower urinary tract problems at all and a further 47% mentioned it in name only. Only 3% of these physicians gave their patients details, including average probability data for post-treatment urinary issues and an estimate of the duration of these problems.
Doctors not talking about erectile dysfunction (ED)
For the radical prostatectomy patients, 15% of doctors didn’t mention the chance of ED, another 25% mentioned it in name only, and another 22% relied on broad generalizations. In the case of radiation patients, fully 42% of doctors didn’t mention risks of ED (which tend to rise over time after radiation), 19% mentioned it in name only and another 14% relied on generalizations, for example “your young age and good erectile function would predict you’d do well afterwards.”
Conclusion: doctors, tell your patients directly about side effects of prostate cancer treatment
Effective communication of treatment side effects was often omitted, not quantified, and/or lacked a timeline in treatment consultations in our sample. Physicians should articulate, quantify, and assign a timeline for treatment side effects to optimize shared decision-making with patients – Daskivich et al (2024) J. Prostate Cancer and Prostatic Diseases
The authors say it all! This adds current data to the discussion on navigating awkwardness and taboos around sexual matters.
The problem is systemic, and we shouldn’t simply blame doctors. My doctor actually told me more than I remembered afterwards – I simply didn’t take it in! I look forward to publication of my December 2023 address to the Institute of Psychosexual Medicine supporting systemic change, and outlining ways to overcome the barriers and taboos stopping clear discussion about these side effects.
Editor’s note March 2024: my article Assumptions and Taboos: breaking down barriers to men’s sexual health and relationships has now been published in the Institute of Psychosexual Medicine Journal, no 83, pages 10-14 Please contact me if you want to read the article and are having trouble accessing it at the IPM Journal site.
Mish, like so many, I found out about incontinence with extreme embarrassment. I had my catheter removed after 15 days. The nurse did this quickly, efficiently and painlessly. She then gave me a thin incontinence pad, just in case I needed it and sent me on my way. I walked to the subway station, about 3 blocks away. By that time I was soaked all the way down to my ankles. And the station was busy. It took me the best part of one year to achieve some sort of control over my continence.
I think they’re afraid that if they tell us the side effects before we choose treatment, more of us will choose no treatment. I certainly would have.
In hindsight, I would take five more good years and then a few months of dying over the constant depression, ED and inability to have orgasms.
Thank for your honest comment. This makes me more determent to stay on active surveillance (2021)as long as possible. I personally think with respect that more men must speak out. Cancer is a powerful word and fear is an dangerous decision maker.
If you can stay on active surveillance. I would do so with what I know now. No side effects were ever explained to me before my surgery in 2013. I can only hope that this has changed by now. My surgeon had told me 5 years after surgery that I was cured and did not need to continue PSA checks. My PSA was undetectable for 8 years, then a slow rise. I only know because I continue my 6-monthly checks at my own initiative and cost. So I have been chasing the medial profession relentlessly as my PSA is now at 1.14. Recently my GP asked me for a blood test. This I duly did. When the results came through my GP asked me to drop by to review my results. She told me all was good. When I asked for the PSA, she told me all was good as well. It was at 0.9. She had not checked on my medical history so assumed that I was in the normal range. So I’ve rattled my oncology team and demanded a new PSMA Pet Scan. This was my fourth as previous ones had shown bone metastasis and I had been on ADT for 5 months previously.
So what am I suggesting? Take charge of yourself, you owe it to yourself.
PRE-surgical Kegels are super important. PRE-surgical physical therapy should be required. POST-surgical penile therapy should also be required. This, in my opinion, would help many men to reduce urinary incontinence issues or to get their control back. *please note you should continue Kegels daily/weekly/monthly even AFTER surgery to help your body’s control.
And to be fair – this should be required for women of pre-birth and post-birth to help them get their health and body tone back and prevent future urinary issues.
Might be different equipment, but the muscular work out helps both.
Regarding ED, maybe more pre-surgical test or discussion…. There are validated questionnaires that could help the Doctor or Urologist direct the treatment.