When Men With Advanced Prostate Cancer Aren’t Speaking, Clinicians Must Encourage Talk About Emerging Symptoms - A Conversation with Neal Shore

Even when symptoms, such as pain, impose significant impacts on their daily lives, many men with advanced prostate cancer do not report the symptoms to their doctors, according to an international survey of both patients and their caregivers to explore this issue. Symptoms may go unrecognized as being associated with cancer, or men deliberately choose not to speak about them with their doctors. As a result, they may not receive interventions that could ease the discomfort.

These findings emerged from the international, large, Prostate Cancer Symptoms Survey, which was commissioned by the International Prostate Cancer Coalition (IPCC), and supported by Bayer HealthCare.* The Harris Poll research organization conducted the survey with both US and international (Europe and Asia) respondents. 

Included were patients with advanced prostate cancer (n=410) and adults who care for someone with advanced prostate cancer (caregivers) (n=95). Findings from the global survey resulted in the development of an educational toolbox, Men Who Speak Up, where prostate cancer patients and their loved ones can download tools to help make symptoms easier to identify and doctors’ appointments more productive, available at www.MenWhoSpeakUp.com.

An earlier article published at UroToday.com, spoke about the reticence many US men with prostate cancer have when they experience symptoms that may (or may not) indicate advancing disease.  

Here, Neal Shore, MD, Medical Director at Carolina Urologic Research Center, reflects upon some differences that emerged between US and ex-US respondents, and speaks to the survey’s take-aways for treating physicians.

UroToday: Dr. Shore, the survey results showed that almost half of men—47 percent-- “sometimes” ignored their symptoms and that 59 percent of men don’t always recognize that the pain they are experiencing could be related to the cancer.  Were there differences between what US and ex-US survey respondents said in this regard?

Dr. Shore: The international portion of the survey absolutely validated what we observed with the US experience; however,  there were some differences. In the international survey, an even higher percentage of patients were reluctant to address their pain because of fear it might result in a switch to an additional antineoplastic therapy. 

Similarly, a higher percentage of patients recognized that by acknowledging any type of symptomatology, it might make them appear weak. Interestingly, a very high percentage of caregivers noticed changes in the patient’s symptoms much earlier than the patients might be willing to acknowledge, as did the US survey—and further observed differences in pain or their extracurricular activities. 

In the United States, the results showed that while 97 percent of patients say they feel comfortable discussing symptoms with their doctors, only 46 percent actually do at every visit, suggesting that there is a reticence that clinicians should be aware of and consider taking steps to draw the patients out with improved discussion.

Otherwise, fairly consistently across the board, we see that many of the patients are hesitant—reluctant—to either discuss their changes in symptoms, mostly reflective of pain, but oftentimes other daily performance activities. 

UroToday: Do you and you colleagues have an idea about the source of this reticence?

Dr. Shore: There seems to be a myriad of reasons why this is so. Some of it has to do with appearing to be perceived as weak, or less ‘manly’. Some of it has to do with not wanting to disappoint their  physicians or nurses. We see that the caregivers as a general rule are much more likely to engage in these kinds of conversations.

UroToday: It seems the survey pointed up some key communication messages for clinicians.

Dr. Shore: I do think that the Men Who Speak Up campaign very nicely demonstrates the clear but sometimes not so obvious importance of having regular and direct communication among the stakeholders in patient care. And when I say stakeholders, I mean not just physicians and patients, but also the nursing team as well as the caregivers.

When everybody is really focusing on all of the patient’s symptoms, together we can do a better job of having frank conversations regarding the different options that are available. Sometimes it might be to stay the course with therapy, or address some of the changes that have occurred related to pain. But it might also be to pick up on more subtle changes that might be affecting the overall health and quality of life of the patient. If we can do that, we can then have a discussion about all of the new therapies that have been approved in the last few years. 

What we do know is that greater than 90% of our patients with prostate cancer will go on to develop bone metastases. These bone metastases are oftentimes the direct source of the pain, or the change in their daily activities, whether it’s their hobbies or the simplicity of climbing stairs, or the likelihood of a good night’s sleep or perhaps their overall happiness.

UroToday: Do you employ a particular strategy to draw out a prostate cancer patient on his symptoms? The survey indicated that patients may suffer with symptoms for as long a seven months before reporting them to the doctor.

Dr. Shore: That’s right: a consistent survey finding was a marked delay from the time when the pain was acknowledged by the patient or the caregiver to the time it was communicated to the clinician.

What I do in my clinic is speak regularly to my nurse, who is first to meet with the patient—obtained vital signs, and completed a history and a review of systems. I try to learn from my nurse if the patient has mentioned pain to them that is bothersome, in addition to speaking with the caregiver and addressing their concerns regarding any aspect of patient deterioration. I’m talking more to the caregivers, and I’m trying to engage the patient and caregiver together to discuss those same issues—any sort of physical discomfort – pain, activity level, depression, sleep—quality of life metrics.

UroToday: The patient’s caregiver is an important source of information and insight it seems, as well as maybe, guidance, on how the patient is really feeling…

Dr. Shore: The survey has taught me to address the caregiver, who is often the wife, when I am addressing the patient. I may ask: “What do you  think about the patient’s overall activity level, his level of pain, level of discomfort? He is saying that nothing has changed. Do you think that anything is different? Is he taking more acetaminophen or ibuprofen? Is he receiving any kind of therapy—maybe physical therapy—that was not communicated to me?

UroToday: Do you think that a deeper exploration for signs and symptoms of advancing disease is one of the key messages the developers of this survey would hope to be passed on to clinicians and caregivers. 

Dr. Shore: Every busy clinical practice has challenges with apportioning time, but this is something that has to be put into practice, because it’s only through having this important communication that we can then best appreciate potential symptomatic progression which oftentimes would indicate a need for additional diagnostic testing, which can then also reveal the possibility for additional therapies that could improve efficacy of patient care, not only potentially with survival, but also with  prevention of symptomatic progression, and hopefully , maintaining or improving quality of life.

UroToday: The survey focused on the caregiver role in “shared management” of the man’s disease, especially when it comes to asking the tough questions. Can you give an example of how you see this enacted in your practice?

Across the board, with men, we see a delay in discussion of symptomatology. 

We see that the caregiver recognizes symptomatology and a change in performance status much earlier. In the International portion this was even more extreme in terms of the failure to communicate. 

Some patients with advanced disease still have very good performance status, so they may come in by themselves. I always try to encourage the caregiver to come in with the patient. I think this is true for all healthcare interactions, whether it’s a man with prostate cancer or a woman with advanced kidney cancer, bladder cancer….

It allows for [reassurance] that they will remember what I am discussing with them. And it also gives me an opportunity to talk to the caregiver—wife, daughter, son, sister, brother. I try to make sure as well that they have an opportunity, once we have completed our discussion, to then further speak with the nurse, who can then further inform me.

*At www.MenWhoSpeakUp.com, men with prostate cancer and their loved ones can download tools to help make symptoms easier to identify and doctors’ appointments more productive.

More on Men Who Speak Up, US results:

When Prostate Cancer Advances, Many Men Ignore Their Symptoms

Written By: Barbara Jones