How Speaking Up About Symptoms Can Improve Quality of Life

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Topics include: Living Well

Fatigue. Stress incontinence. Erectile dysfunction. Bone pain. The symptom burden from prostate cancer can be embarrassing and uncomfortable at times to talk about, but can avoiding the conversation be harmful to your health? Are there solutions your healthcare team can provide? Our team of prostate cancer experts, including Elizabeth Harris and Dr. Celestia Higano from the Seattle Cancer Care Alliance, discuss how open communication about symptoms can help improve quality of life. 

This is a Patient Empowerment Network program produced by Patient Power in partnership with Seattle Cancer Care Alliance. We thank Astellas and Sanofi for their support.

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Transcript

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you. 

Jeff Folloder:

I’m going to point this question at Elizabeth right now. We’re talking about symptoms, and since prostate cancer is a male disease—we discussed this earlier—it’s a generalization, but men tend to brush everything off as far as symptoms go, at least in the beginning. So you have a patient in your practice, and you ask them, “How are you doing?” And what do they say?

Elizabeth Harris:               

“I’m fine.” “I’m okay.” 

Jeff Folloder:     

But do they have symptoms?

Elizabeth Harris:               

Later on, you will find out that maybe they have stress incontinence, or they have pain, or they have fatigue, they have nausea, they have loss of appetite.

And, sometimes, they don’t always share that. Sometimes, I think it’s better to talk to their caregiver like their wife.

Jeff Folloder:     

So you are recommending that that person show up to the appointment?

Elizabeth Harris:               

Yes.

Jeff Folloder:     

Okay. These symptoms can be embarrassing. 

Elizabeth Harris:               

Yes.

Jeff Folloder:     

And we’ve all carefully avoided the one symptom that probably bothers people the most, and that would be sexual issues.

Elizabeth Harris:               

Yes.

Jeff Folloder:     

In general, it’s difficult for a man to admit the sexual thing is not working. “I’m experiencing a lack of appetite, stress incontinence, fatigue.” These are things that men typically don’t share. Is that a fair statement? 

Elizabeth Harris:               

Yes.

Jeff Folloder:     

Okay. Let’s look at fatigue for just a second. When I say the word “fatigue,” most people probably think I’m tired, I want to take a nap. That’s not really what we’re talking about, is it?

Elizabeth Harris:               

Well, it could be also lack of energy and your ability not to do your everyday tasks, or your activities of daily living is diminished. You don’t have any initiative to do maybe even go to work or do your exercise, do housework, do the things that you normally do.

Jeff Folloder:     

So if your energy level – your fatigue level—is interfering with your ability to live your life, that’s the fatigue that we’re talking about. It’s okay, when you put the golf match on TV, to take a nap for an hour. That’s not what we’re talking about. I wanted to make sure people understood the difference. 

These can be a heavy burden for a lot of people. The symptom load is not nominal. How do we take care of these symptoms? Are there things that we can do in the medical practice to address the fatigue, to address the incontinence, to address the sexual performance issues? I’ll start with you.

Dr. Higano:          

Well, Elizabeth—one of her jobs is to actually go down a very specific list. So, we don’t necessarily leave it to the patient’s imagination to tell us if something is bothering them. We pointedly ask them these questions—not only the embarrassing one, but maybe the more mundane things. And so, that’s the first thing. That guides me in my discussions with the patient. So, if we go into every visit thinking, “Well, what is affecting this person’s quality of life?”, based on the answers to the questions plus whatever dialogue we have in the visit, that’s what we do.

Now, anybody who’s ever seen me as a patient knows that the first thing I’m going to tell them that will help them feel better is to exercise. 

Jeff Folloder:     

Mm-hmm, and it’s counterintuitive. If I’m tired all the time, why go exert more energy? 

Dr. Higano:          

It absolutely is very counterintuitive, and that’s probably what stops a lot of people from doing it, but I can only say that many patients have told me, “I’m glad you kicked my butt to get moving, because I feel so much better now.” So, we can’t underestimate the importance of exercise in not only dealing with fatigue, but many of the other side effects of hormone therapy that these patients are on.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you. 

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Page last updated on February 7, 2018