The Confident Patient & Caregiver

The ConfidentPatient:A Guide to NavigatingProstate Cancer Care

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Managing your care

Whether you're living with prostate cancer or a caregiver who's supporting someone who is, you face tough treatment choices like active surveillance, surgery, or radiation. Everyone’s cancer is different – from your Gleason score to staging – so sharing what you notice at appointments is so important.

The questions you ask should reflect what you care about most, whether that's keeping your urinary function or improving your sexual health. This guide has tools to help you start conversations with your care team.

Caregiver support

As patients navigate appointments and treatment, a loved one often steps in to help. If you're that caregiver, it can be tough to figure out the best way to offer support. While help looks different for every patient, here are some common tasks that make a big difference:

Help organize tasks, schedules, and treatments
Take notes at appointments or record specific resources
Take care of yourself so you can be available and attentive during visits, acting as an extra set of eyes and ears for your loved one

Set a goal for every appointment

Go in with a goal, leave with a plan. Adopting this mindset will help you get the most out of your doctor’s appointments.

What does that look like? Let’s say your goal is to improve your quality of life. By tracking how symptoms affect you and asking your care team specific questions, you can walk away with an actionable plan for managing the issues that impact your daily life.

What’s your goal today? These questions may give you some ideas:

Goal: Understand the diagnosis

What exactly is my Gleason score and what does that mean for how my cancer might grow?
What does my PSA level indicate and how quickly has it risen over time?
What is the TNM stage of my cancer and has it spread beyond the prostate?

Goal: Explore treatment options

If we decide on this treatment, what is the goal (e.g., to control or monitor), and how will we know if it is working?
What is a typical timeline for starting this treatment?
Are there any clinical trials I should look into?
Are there any drug interactions I should be aware of?

Goal: Improve quality of life

How can I keep doing the things that matter to me while managing treatment?
What are the most common side effects of this treatment, and what can we do now to prepare for them so I can tolerate them better?
If I'm concerned about treatment costs or copays, who in your office handles those questions?
I've been feeling anxious or depressed – can you recommend a therapist or support group that specializes in prostate cancer?

Symptom Check-in

What have you noticed?

It's important to keep tabs on your symptoms between appointments. What you share with your doctor can help identify issues early and shine a light on what’s going on. Let’s see how you’ve been feeling lately.

In the last month, have you experienced a change in:

☐ Stiffness, slowness, or balance
☐ Pain
☐ Fatigue
☐ Difficulty sleeping
☐ Memory
☐ Bladder or bowel changes
☐ Depression or anxiety

Caregiver tip: You can help by jotting down changes you see or questions that come up between appointments.

The Check-up

Share your perspective

Symptoms can be hard to describe. Here are some ways to talk about your concerns and jumpstart the conversation.

For patients:

“I’ve noticed more pain in this area lately.”
“Here’s how treatment days are impacting my quality of life.”

For caregivers:

“What symptoms are urgent enough that we need to call the care team?”
“What caregiver resources or support groups are available?”

Remember: Managing the care plan is a team effort between you, your doctors, nurses, and specialists. Your input and experiences really matter.

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