How patients and others react to prostate cancer diagnosis and treatment

According to a media release issued earlier today by ZERO — The End of Prostate Cancer in conjunction with Ferring Pharmaceuticals Inc., “Prostate cancer impacts sex lives more than any other aspect of patients’ lives.”

Two separate but parallel surveys were conducted in April this year. One enrolled 100 patients with prostate cancer and 100 caregivers of men diagnosed with prostate cancer. The other targeted 400 healthcare professionals (HCPs), including 200 urologists and 200 ancilliary healthcare workers (physicians’ assistants, nurse practitioners, and nurses).

Here are some of the key findings of the two surveys:

  • 64 percent of the patients reported that their prostate cancer diagnosis had a moderate to severe impact on their social and emotional well-being.
  • Both the patients and the caregivers reported that the patients’ prostate cancer diagnosis disrupts multiple areas of their lives, and that sex life (specifically impotence and libido), mood, and career are the most commonly impacted areas.
  • The HCPs agreed that sex life and mood are among the most impacted areas, noting, in addition, that they see a significant impact on patients’ spousal relationships.

More specifically, with respect to the patients:

  • Depression, reduced libido, and impotence were ranked as the most impactful side effects of diagnosis and treatment.
  • 13 percent reported a sense of hopelessness.
  • 71 percent reported fear on diagnosis.
  • 75 percent reported uncertainty about the future.
  • 44 percent reported a sense of “loss of control” over their lives.
  • 62 percent stated that they were “eager for information” about their options.
  • 64 percent felt determined to “fight the disease following diagnosis”.
  • 59 percent wanted an aggressive treatment plan.
  • 76 percent wanted to be fully involved in treatment decisions.
  • Most considered a strong relationship with “an honest, approachable communicative doctor”.

For the caregivers:

  • Depression, impotence, and fatigue were ranked as the most impactful side effects.
  • 11 percent reported a sense of hopelessness.
  • 81 percent reported fear on diagnosis.
  • 79 percent reported uncertainty about the future.
  • 24 percent reported a sense of “loss of control” over their lives.
  • 43 percent stated that they were “eager for information” about their options.
  • 63 percent felt determined to “fight the disease following diagnosis”.
  • Most believed that having a supportive care network is the most important factor to focus on (as opposed to the individual physician).

And for the HCPs:

  • Reduced libido, impotence, and depression were the three most impactful side effects.
  • 33 percent reported that their patients often feel hopeless.
  • Most agreed with the patients that a strong relationship with “an honest, approachable communicative doctor” was very important.

Unfortunately, without knowing a lot more about the individual patients, their precise clinical conditions, the management options available to them, and precisely how these options were presented by their physicians and other HCPs, it is hard to make much helpful sense out of any of this information.

It is also not clear what percentage of the 400 HCPs who were targeted actually responded to the survey.

The truly critical questions from a patient and caregiver perspective (which one rarely knows the real details about) are, in fact:

  • Are you being given all of the details about your diagnosis in a manner that you truly understand?
  • Have you been told about all of the management options that are potentially appropriate?
  • Have you been given access to someone really knowledgeable who will explain and talk through with you all of the relevant decision factors in a completely neutral and unprejudiced manner?
  • Do you really understand the risks related to treatment and the fact that all forms of treatment come with significant risk for serious side effects and complications?
  • Do you have access to enough information about the skill, experience, and long- and short-term outcomes data of the physicians you are considering as primary treaters (regardless of type of treatment)?
  • Does your spouse/partner or other caregiver also have access to all relevant information with regard to her/his expectations about your treatment and the consequences?

The patient who can accurately answer “Yes” to all of these questions is in a very different place to the patient who doesn’t know enough to know that he should be answering “No” to even one of these questions. Sadly, the majority of patients still fall into the latter category.

The one thing that these survey data do seem to confirm with absolutely certainty is the phrase used by Ann Katz in discussing patients’ critical expectations about prostate cancer treatment: it’s not about choosing survival over sex — it’s about coming to terms with an altered way of being a man.


5 Responses

  1. Mike,

    Great one. The paragraph after “the truly critical questions” is just powerful and cogent to the issue of treatment for prostate cancer. And anyone who has interviewed post-surgery patients knows regret is just in one’s face.

  2. I think that a standard part of treatment for prostate cancer, for men who were sexually active prior to diagnosis, should be access to a sex therapist. And that access should be offered to both the patient and his partner at every single appointment. Sometimes I think about how differently our lives might have turned out if we had had help with those difficult conversations, and if my point of view (as the wife) had been considered by anyone.

  3. Glad to see ZERO doing this. I applaud the effort. They have had a screen everyone and do it often policy regardless of age or individual considerations that caused me a bit of grief a couple years ago. I hope these studies open all eyes on that fact it’s not just over-treatment that is at issue.

    I have held several conversations with internists and urologists that do the “discussion” about screening and/or treatment. They indicate that even with all the yesses to the critical questions above, the patients are not always “astute” to the issues they face at that moment. So it is that later, after a diagnosis, the patient’s life has already been impacted in a negative way even if they are able to understand active surveillance as an option and that they are a viable candidate. The concepts of “over-diagnosis” are still not accepted by the patient advocate community, yet a problem is still very real. I still see the “diagnbose everyone” mentality and the false hope that if we got over-treatment under control all would be well. That’s simply not true. Even men with a good understanding that they have a very early, very slight case of prostate cancer are still impacted for the remainder of their lives to some level — even if the dignsosis was one of a indolent nature that would never require therapy.

    Interesting the differences between the caregivers and the patients. …

  4. Good article and comments!

    Within time and energy constraints, active surveillance should be one of the “must cover” topics. Ideally it would be backed up by written and video materials.

    Our support group has a set of DVDs from each of the annual conferences on prostate cancer sponsored by PCRI, UsTOO, and others. Most years there is a presentation from an expert on active surveillance, with Dr. Klotz scheduled this year. I was unable to attend last week’s conference, so I am not sure whether he actually presented.

  5. He did not, Jim. I was there and the meeting was as usual very educational. Dr. David Krasne talked about active surveillance and I didn’t see it as I was manning our Prostate Cancer Advocates Forum table. I did see SWOG colleague Maha Hussain speak but that was about it for me.

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