Tools for Accessing Quality Prostate Cancer Care

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Tools for Accessing Quality Prostate Cancer Care from Patient Empowerment Network on Vimeo.

What factors could impact a prostate cancer patients access to quality, affordable care? This animated video reviews common obstacles and provides tools and resources to help address barriers to care.

Download Resource Guide

See More From Shared Decision Making: Navigating Prostate Cancer Care

Related Resources:

Living With Prostate Cancer

What You Should Know About Clinical Trials

What You Should Know About Clinical Trials

 Prostate Cancer Care Partners: Getting the Support You Need

Prostate Cancer Care Partners: Getting the Support You Need

Transcript: 

Anthony: 

Hi! I’m Anthony, and I’m living with advanced prostate cancer. This is Niki, my nurse.  

Just like prostate cancer doesn’t behave the same way in every patient, each prostate cancer patient has different factors that could impact their access to quality, affordable care. 

Niki: 

Exactly, Anthony. There are obstacles that may affect their potential to manage their cancer.    

These barriers, which are also called health disparities1, are complex and may include things like:  

  • Not having health insurance – or having limited insurance. 
  • Experiencing racism and discrimination. 
  • Language barriers if English is not the language you are most comfortable with2. 
  • Cultural barriers. 
  • Experiencing financial constraints. 
  • A lack of sick time or paid time off in the workplace. 
  • Living in a remote or rural area with limited access to care. 
  • Or, a lack of education or health literacy. 

Anthony: 

And overcoming or addressing these barriers is the goal of health equity.  

Niki: 

Right! EVERYONE should have the access to quality care. And while it isn’t possible to solve these problems overnight, there are resources and support services to help people with prostate cancer. It is important to identify and to discuss your barriers with your healthcare team as they are unique to each individual patient. 

Anthony: 

First and foremost, as we’ve mentioned in prior videos – don’t hesitate to speak up if you feel you are receiving unequal care. You can consider changing doctors if you don’t feel you’re receiving fair treatment, or if you’re not comfortable with your team. 

But the burden to access better care shouldn’t fall on you. Your team is there to help, right, Niki? 

Niki: 

That’s what they are there for! And the best place to start is by reaching out to a nurse navigator or social worker on your team. They may work with you and identify any challenges in your way and offer support resources to guide you in the right direction.  

Anthony: 

Exactly – my social worker helped me find an organization that provided transportation to and from my treatment appointments.  

Niki, are there other services that a nurse navigator or social worker help you connect with? 

Niki: 

Absolutely – let’s walk through some examples: 

  • There are resources that can help with the financial strain of cancer care. Patient assistance programs are in place for people who don’t have health insurance or who are underinsured. They are managed by government agencies, pharmaceutical companies, and advocacy groups; and, in some cases, these programs can help cover the cost of medications or provide them at a discounted rate.
  • Team members who provide emotional support are available to help you such as a social worker, counselor, therapist, or psychologist. 
  • If language is a barrier, translators can be made available to join appointments with you, so you can actively participate in your care discussions and decisions.  And you can ask for materials in the language you are most comfortable with. 
  • And if your job is affecting your ability to get care, many advocacy groups have resources that can support you in advocating for your rights in the workplace. 

Anthony: 

Those are all wonderful support services, Niki. 

I also want to add that if you are having trouble understanding your disease, advocacy groups have excellent materials in patient-friendly language. Download the guide that accompanies this video for a list of recommended organizations. 

Niki: 

That’s right. And, many medical centers have patient advocates available to help you communicate with your team, so you can get the care you need and feel confident in your decisions. Remember, you are not alone! 

We hope this video helped you feel more empowered to ask for resources. Thanks for joining us! 

Anthony: 

And visit powerfulpatients.org/pc to access more videos with Niki and me. 

Prostate Cancer Care Partners: Getting the Support You Need

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Prostate Cancer Care Partners: Getting the Support You Need from Patient Empowerment Network on Vimeo.

 What do care partners need to know to help care for their loved one AND themselves? This animated video reviews the role of a care partner, discusses steps for supporting a loved one and provides tips for maintaining self-care.

Download Resource Guide

See More From Shared Decision Making: Navigating Prostate Cancer Care

Related Resources:

Living With Prostate Cancer

Collaborating With Your Doctor on Your Prostate Cancer Care Plan

Collaborating With Your Doctor on Your Prostate Cancer Care Plan

 Tools for Accessing Quality Prostate Cancer Care

Transcript: 

Anthony: 

Hi! I’m Anthony, and I am living with advanced prostate cancer. This is my nurse, Niki.  

And this is my wife, Jane. She’s not just my wife, she’s also my care partner. From helping with my appointment schedule to communicating with my healthcare team, she works with me to manage my prostate cancer. 

Jane: 

And many of you may be care partners like me. The goal of this video is to help you understand your role and to gain tools to help you support your loved one in their cancer journey. And that includes prioritizing your own self-care.  

Niki, we’ve talked about some of the things I do to help Anthony, but how would you describe the role of a care partner?  

Niki: 

A care partner is someone who works with their loved one on their care every step of the way – from diagnosis to survivorship.  

It’s important to mention that anyone can play this role – friend, family member, or loved one – whomever you trust with supporting your health.  

Jane: 

And there isn’t a single way be a care partner. You can provide support in a way that feels comfortable and natural to you. 

Niki, what are some of the ways a care partner can help?   

Niki: 

Yes – let’s review a few steps. Care partners can assist by: 

  • Learning about your loved one’s prostate cancer, so you can feel confident in participating in conversations and decisions. You can ask their healthcare team for educational resources. 
  • And participating in doctors’ appointments by taking notes and requesting post-visit summaries so that you can review the information presented. 
  • Next, helping your loved one access and use their patient portal and maintaining schedules and organizing medical records. 
  • Listening to your loved one and assist in weighing the pros and cons of care decisions. 
  • And monitoring your loved one’s emotional health. 

Jane: 

That’s a great point, Niki. Sometimes a care partner will notice that their loved one is feeling low or acting differently before they notice anything themselves. Care partners can help communicate these issues to the healthcare team, and can even reach out to a mental health professional or social worker to help.  

Niki: 

And that leads me to the next important step that many care partners often overlook: Taking care of yourself.  

Anthony: 

Right – and as we experienced firsthand, this is essential. Jane struggled with making time for herself after I was diagnosed, and it negatively impacted her health.  

Jane: 

I was totally drained. But adding time for myself on the calendar and keeping up with my self-care appointments made me feel better. What else can you do? 

  • First, prioritize your health by scheduling and keeping your OWN health care appointment. 
  • Continue doing the activities that you enjoy – there are ways to make time in the schedule, even if it doesn’t seem like it.   
  • Find and use strategies that work for you to manage stress, like exercise, reading a book, or anything you find relaxing. Even a short walk with a friend can have a big impact. 
  • And make a list of tasks you can pass off to friends and family members who offer to help.  

Niki: 

That’s great advice, Jane. I’ll also add that caring for a loved one can be challenging – it’s normal to feel a range of emotions. If you’re feeling overwhelmed, talking with someone about how you’re feeling can make a difference. And speaking candidly and openly with other care partners in a support group setting can also provide comfort and peace of mind. 

Just like Anthony sought the advice of a counselor and social worker, it’s important that Jane find that support SHE needs as a care partner. 

Jane: 

We hope this video helped you gain tools and strategies for helping support a loved one – and yourself. 

Anthony: 

Download the guide that goes with this video to review what you learned.  

And visit powerfulpatients.org/pc to access more videos with Niki and me. 

Living With Prostate Cancer

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Living With Prostate Cancer from Patient Empowerment Network on Vimeo.

What follow-up care is important for people with prostate cancer? This animated video discusses support and tools for managing life with prostate cancer.

Download Resource Guide

See More From Shared Decision Making: Navigating Prostate Cancer Care

Related Resources:

What You Should Know About Clinical Trials

What You Should Know About Clinical Trials

 Collaborating With Your Doctor on Your Prostate Cancer Care Plan

Collaborating With Your Doctor on Your Prostate Cancer Care Plan

 Tools for Accessing Quality Prostate Cancer Care

Transcript: 

Niki: 

Hi! I’m Niki and I’m a nurse practitioner. And here with me is Anthony, who is living with advanced prostate cancer. 

Anthony: 

Thanks for joining us!  

In this video, we’re going to discuss tools for managing life with prostate cancer.  

Niki:  

Living with prostate cancer means that patients will be monitored for signs that the cancer may be progressing, and assess if it is time to treat the cancer or consider a different treatment plan.   

Anthony:  

But for all patients, an important part of living with prostate cancer is follow-up care. This may include:  

  • Disease monitoring and managing symptoms and side effects, 
  • As well as emotional support. 
  • And, in some cases, creating a survivorship plan with your team.  

Niki:  

Let’s start with disease monitoring: This may include regular exams and testing to keep an eye on your disease progression or recovery. And your individual situation and risk will determine the frequency of your appointments. 

Anthony: 

And for patients like me who have had treatment, managing short and long-term side effects is an essential part of living with prostate cancer.  

One issue that can be challenging for some prostate cancer patients is the impact of treatment on a patient’s sexual function and self-image.  

Niki: 

That’s right, Anthony. It’s important to note that there ARE options that may help manage certain side effects, but you have to talk about them with your healthcare team. While bringing up sexual side effects or bladder control issues to your provider may be difficult, it’s the only way your team can assist you.  

Anthony: 

In my case, I found it easier to communicate my sexual issues in writing, using the patient portal. Plus – don’t forget that care partners can be a resource to help bring up difficult topics. 

Niki: 

Exactly – utilize your resources and communicate in a way that you feel most comfortable! 

And, as we mentioned, there can also be emotional side effects for men living with prostate cancer. Patients may feel stressed about their diagnosis or anxious about their cancer returning or progressing. Working with a health professional like a social worker, counselor, therapist, or psychologist may help reduce anxiety and worry.  

Anthony: 

Right – the other approach that really helped me emotionally was participating in a support group. 

Support groups allow men to meet and interact with others who are living with prostate cancer and provide a platform to share experiences and information. In a support group setting, it may be easier for men to share details that they don’t necessarily want to share with loved ones.  

Niki: 

That’s a great point, Anthony. Studies show that participating in a support group can help cancer patients cope with anxiety and depression.  

Anthony: 

It certainly encourages me to know that other men are facing similar challenges. While my support group meets in person, there are online options for people who prefer to connect in a virtual setting.   

Niki: 

But as much as it can be reassuring, the support group format isn’t for everyone. Talk to your social worker or counselor about additional support options to find an approach that feels most comfortable to you.  

Anthony: 

Now that we’ve walked through disease monitoring and resources for emotional support, let’s talk about survivorship. Niki, what is a survivorship care plan?  

Niki: 

Sure. A survivorship care plan organizes your follow-up care. It may include: 

  • Information about the treatment you received. 
  • A follow-up schedule for exams and tests. 
  • A list of potential symptoms and side effects. 
  • And lifestyle recommendations to establish and to maintain healthy habits.  

Your healthcare team, along with a care partner, can help you develop and stick to a plan. 

Anthony: 

That’s great advice, Niki. Now that we have learned some tips for living with prostate cancer, what can you do to participate in your follow-up care?  

Niki: 

  • Make sure to schedule and keep regular visits with your team – including your general practitioner – so that all aspects of your health can be monitored.  
  • Report any new symptoms that you experience – no matter how small. 
  • Next, don’t hesitate to speak up about lingering side effects – including bladder and sexual side effects – so your team can identify solutions. 
  • And ask for emotional support and resources. 
  • Finally, if it’s right for you, talk with your doctor about a survivorship care plan. 

Anthony: 

Thanks for joining us! Be sure to download the guide that goes with this video to access the information we discussed.  

And visit powerfulpatients.org/pc to access more videos with Niki and me. 

What You Should Know About Clinical Trials

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What You Should Know About Clinical Trials from Patient Empowerment Network on Vimeo.

What do you need to know about prostate cancer clinical trials? This animated video reviews the clinical trial process and provides questions to ask your healthcare team about trial participation.

Download Resource Guide

See More From Shared Decision Making: Navigating Prostate Cancer Care

Related Resources:

Collaborating With Your Doctor on Your Prostate Cancer Care Plan

Collaborating With Your Doctor on Your Prostate Cancer Care Plan

 Tools for Accessing Quality Prostate Cancer Care

 Prostate Cancer Care Partners: Getting the Support You Need

Prostate Cancer Care Partners: Getting the Support You Need

Transcript: 

Anthony: 

Hi, I’m Anthony, and I’m living with advanced prostate cancer. And this is my nurse practitioner, Niki.  

Niki: 

Thanks for joining us! 

Without medical research, advances in prostate cancer treatment can’t move forward. Throughout this video, Anthony and I are going to discuss a key part of research: clinical trials. We’ll review what they are and how they work.  

Anthony: 

Niki, what is a clinical trial exactly? 

Niki: 

Excellent question, Anthony. Clinical trials are research studies in people who have a specific condition, or are healthy volunteers, to help find new ways to treat diseases – like prostate cancer.  

Most clinical trials examine the safety and efficacy of medicines, vaccines, and other medical treatments. 

And clinical trials are the main path for cancer treatments to be approved. The U.S. Food and Drug Administration – also known as the FDA – requires that all new medicines and treatments go through the clinical trial process before they are approved. 

So, why would someone consider participating in a trial? Some people choose to participate to access a potential new medicine or treatment that’s not yet approved to see if it helps their condition. And some people want to help move research forward to help others with the same condition – while other people participate for both reasons. 

Anthony: 

That’s right – advancing research through participation is an important path to new options for treating prostate cancer.   

So, Niki – can you explain how clinical trials are designed to answer key questions? 

Niki: 

Yes, of course. Most importantly, each clinical trial has a protocol, which is a document that sets guidelines that define and outline the activities of the clinical trial as well as who may be eligible to participate. 

The early phase trials determine the safety of the treatment, and the latter phases typically examine if the potential therapy is effective. 

All along the way, the study clinic staff  – including nurses, researchers, and study doctors  –check clinical trial participants regularly to monitor for any safety concerns.  

Anthony: 

But to be successful, clinical trials require people to volunteer. And people interested in participating will have to meet the trial criteria to participate, correct? 

Niki: 

Yes, that’s correct, and this can include things like a person’s age, disease stage, prior treatments, and overall health. Remember that everyone’s situation is unique. 

Anthony: 

And people often have misconceptions about clinical trials that prevent them from considering participation. Let’s run through a few common concerns. 

For instance, some people worry that they will receive placebo – which is a non-active medicine  –  if they participate in a clinical trial. Niki, is this true? 

Niki:  

A cancer patient would never receive only the placebo without the current standard-of-care and will always be told that the trial will contain a placebo in advance of their participation. 

Anthony: 

OK, that makes sense. Some people also wonder about the risks and safety of a clinical trial.  Niki, can you share some information about this?  

Niki:  

Great question. Most importantly, research must meet ethical standards to ensure that participants are protected. There is a strict screening and testing process that occurs before a person can participate.  

And, clinical trials are voluntary  – participants have the right to leave the trial at any time.  

Additionally, there is an informed consent process, which ensures that people are fully informed about all potential risks and benefits and helps people understand their rights before taking part.  

Anthony: 

Ok. Thank you for clearing that up. Niki, what about the misconception that clinical trials are just a last-resort treatment option?  

Niki: 

They are not just a last-resort option at all, Anthony. No matter when a patient was diagnosed with prostate cancer, or where they are in their care, clinical trial participation may be an option.  

Anthony: 

So, if someone is interested in participating in a clinical trial or learning more about clinical research – where do they start?  

Niki:  

Your doctor is the best source of information. You can ask your doctor: 

  • What trials are available to me? 
  • Is there a clinical trial that you would recommend for me? Why? 
  • What are the possible risks and advantages of participating in this clinical trial? 
  • Are there costs associated with the trial, and will my health insurance help cover costs? And if not, is there financial assistance available?  
  • Where is the trial being conducted? Is there a clinical trial available to me in my local community? If the trial isn’t nearby or convenient, is there transportation and/or housing assistance? 
  • Finally, if you want to learn more about ongoing prostate cancer research and clinical trials, ask your doctor for a list of credible resources. 

Anthony:  

Be sure to download the guide that accompanies this video to access a list of these questions and to help you review what you learned. 

Niki: 

Thanks for joining us! And visit powerfulpatients.org/pc to access more videos with Anthony and me. 

Collaborating With Your Doctor on Your Prostate Cancer Care Plan

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Collaborating With Your Doctor on Your Prostate Cancer Care Plan from Patient Empowerment Network on Vimeo.

How can you engage in your prostate cancer care? In this animated video, you will learn about factors that may impact a prostate cancer care plan and tools for partnering with your healthcare team on treatment decisions.

Download Resource Guide

See More From Shared Decision Making: Navigating Prostate Cancer Care

Related Resources:

What You Should Know About Clinical Trials

What You Should Know About Clinical Trials

 Living With Prostate Cancer

Prostate Cancer Care Partners: Getting the Support You Need

Prostate Cancer Care Partners: Getting the Support You Need

Transcript: 

Niki: 

Hi, thanks for joining us! I’m Niki, and I’m a prostate cancer nurse practitioner. And here with me is Anthony, who is living with advanced prostate cancer.   

Anthony: 

Throughout this video, Niki and I are going to discuss factors that may impact a patient’s prostate cancer care plan.  

And as we’ve mentioned in previous videos, it’s important to set goals with your team and understand all of your options before deciding on an approach.  

Niki: 

Right, Anthony. So, what could impact a treatment plan decision? Factors may include: 

  • Your age and overall health, including any existing conditions that you may have.
  • Disease-related symptoms may also affect your options.
  • The stage and grade of your prostate cancer and whether you need to be treated right away.
  • Test results, including genomic testing, which identifies the presence of genetic mutations in the cancer and may inform how your cancer will behave. 
  • Possible side effects, both short term and long term, may also affect your choices. 

Anthony: 

And, of course, your personal preference should guide the decision as well as how the option may impact your lifestyle. Be open with your care team about what’s important to you and be clear with your goals, including life plans and personal commitments.   

Here are some tips to take a more proactive role in your care: 

  • Talk with close family members and friends about your options. 
  • Consider a second opinion to help confirm your approach. 
  • Talk to your healthcare team about your condition and care options. And ask them for resources available to you, including financial help and emotional support, when making decisions.​ 
  • You can also visit advocacy group websites that have information about prostate cancer, treatment options, and support groups, to help you understand what’s available.​ 

Niki: 

Those are great tips! It’s also a good idea to ask your doctor what they feel is the best approach for you and why. Remember, there is no one-size-fits all approach, and what works for one person may not work for you. 

Anthony: 

Thanks for joining us! Be sure to download the guide that accompanies this video to help you review what you learned.  

And visit powerfulpatients.org/pc to access more videos with Niki and me. 

What Questions Should You Consider Asking Your Prostate Cancer Care Team?

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What Questions Should You Consider Asking Your Prostate Cancer Care Team? from Patient Empowerment Network on Vimeo.

How can prostate cancer patients have engaged conversations with their healthcare team? This animated video reviews key questions patients can ask to help them navigate their treatment and care decisions.

Download Resource Guide

See More From Shared Decision Making: Navigating Prostate Cancer Care

Related Resources:

Building a Relationship With Your Prostate Cancer Healthcare Team

You Have a Role in Your Prostate Cancer Care Decision

Transcript: 

Niki: 

Hi, I’m Niki, and I’m a prostate cancer nurse practitioner. And this is Anthony, who is living with advanced prostate cancer.  

[Disclaimer on screen: Patient experience depicted in this video is fictional.] 

Anthony: 

Thanks for joining us! In this video, Niki and I are going to walk you through key questions to ask your prostate cancer team as you navigate your care decisions. 

First of all, it’s helpful to ask your physician how much experience they have treating prostate cancer patients. If appropriate, you may want to consider a second opinion. 

Niki: 

And it’s important to also have a deeper understanding of your disease by asking: 

  • What stage and grade is the prostate cancer? Has it spread beyond the prostate? 
  • Are there additional tests that you should undergo to provide a fuller picture of your disease? 
  • What educational resources are recommended to learn more about prostate cancer? 

Anthony: 

Once you understand more about your diagnosis and disease, then it’s time to really understand what steps could be next.  

And, if – and when – your disease does need to be treated, you should feel engaged in deciding on your treatment plan.  

Niki: 

That’s right. You can start by asking if treatment needs to begin right away or if you will be monitored for any changes. 

  • Then, establish the goals of your treatment plan. Based on your diagnosis and stage of disease, is the goal to try to cure the cancer or to manage the disease symptoms?  
  • Ask what treatment options are available to you and which approach is recommended for YOUR disease? 
  • And inquire if there is a clinical trial that could be right for you.  
  • Finally, ask what your options are if the initial treatment doesn’t appear to be effective or if your disease progresses. 

Once you know your options, ask about the potential short term and long-term side effects of each approach and how they may be managed. 

Anthony: 

You should also find out how your lifestyle may be impacted. For instance: 

  • Find out how each approach could impact your daily life, including your sex life, and for how long. 
  • You may also inquire about how treatment may impact fertility and if you should speak with a fertility specialist. 
  • Ask about the financial implications of each approach and whether there are resources for financial assistance. 

Niki: 

That’s great advice, Anthony. We hope these questions give you a good starting point for engaged conversations with your team. Remember, you may have more questions related to your individual situation, these are just a starting point to help.

Anthony: 

Don’t forget to download the guide that accompanies this video. It will have a comprehensive list of the questions we have reviewed. 

And visit powerfulpatients.org/PC to access more videos with Niki and me. 

You Have a Role in Your Prostate Cancer Care Decisions

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You Have a Role in Your Prostate Cancer Care Decisions from Patient Empowerment Network on Vimeo.

What role do patients play in their prostate cancer care decisions? This animated video reviews the shared decision-making process and outlines steps for patients to engage in their care.

Download Resource Guide

See More From Shared Decision Making: Navigating Prostate Cancer Care

Related Resources:

Building a Relationship With Your Prostate Cancer Healthcare Team

What Questions Should You Consider Asking Your Prostate Cancer Care Team?

Transcript: 

Niki: 

Hi, I’m Niki, and I’m a prostate cancer nurse practitioner. And this is Anthony, who is living with advanced prostate cancer.   

[Disclaimer on screen: Patient experience depicted in this video is fictional.] 

Anthony: 

Thanks for joining us! In this video, we’re going explain why you should take an active role in your prostate cancer care and review steps to help you engage in the decisions that need to be made. 

Niki: 

That’s right, Anthony.  

Which leads me to the term “shared decision-making.” You may have heard of this term already – basically, it means that you and your healthcare team collaborate on care decisions and the goal is to have YOU be at the center of these decisions. 

Anthony: 

That’s right! For example, when it was time to discuss my care plan, my doctor walked me through the considerations of each approach and how each option could impact my lifestyle. I asked questions and shared my goals during the conversations. And I felt HEARD. 

Niki: 

Exactly – that’s shared decision-making in action. When you are living with cancer, often the risks and benefits need to be weighed to decide which course of action could be best for your individual disease. So why is it so vital to be an active participant? Studies show that patients who engage in their care may have better outcomes and experiences1. And it will help you learn more about your disease and move forward with confidence. 

Anthony: 

Now that you know what shared decision-making IS and why you should become a partner in your care, let’s review steps that will help you become more engaged: 

The first, and most important step, is to educate yourself about your disease.  

Niki: 

Your doctor’s office can be a great source of information and resources, so it’s a good place to start. And there are also several advocacy groups that provide educational materials, for instance: [links on screen as they are read]: 

  • Patient Empowerment Network, the creator of this video. 
  • The Prostate Cancer Foundation. 
  • The Prostate Cancer Research Institute. 
  • The Prostate Health Education Network, which focuses on services and support for Black men. 
  • And ZERO-The End of Prostate Cancer. 

Anthony: 

Once you learn more about your prostate cancer through resources like these, you will feel more empowered to voice your opinions. Remember, it’s important to speak up and ask questions at each stage. 

Niki: 

So, what else can you do to be a partner in your decisions? 

  • First, make sure you understand and communicate the goals of your care before making any decisions. 
  • Then, make sure you are informed about your options and ask for supporting materials if you need clarity. 
  • And ask how your lifestyle may be impacted by each approach. 
  • You should also discuss the risks and benefits of each option. 
  • Request resources to aid in decision-making and information that can help determine the best route for your individual disease. 
  • As always, bring a friend or family member and discuss your options with loved ones. 
  • Finally, remember YOU are at the center of your care. You should feel comfortable with any choice before you move forward. 

Anthony: 

Now that you’ve watched this video, make sure to download the guide that contains highlights of this discussion – and you can print it out or save it on your computer to reference in the future. 

Niki: 

Visit powerfulpatients.org/PC to access more videos with Anthony and me. Thanks for joining us! 

Building a Relationship With Your Prostate Cancer Healthcare Team

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Building a Relationship With Your Prostate Cancer Healthcare Team from Patient Empowerment Network on Vimeo.

Who are the potential members of your prostate cancer team? This animated video reviews the key providers who may be involved in your care and provides tools for confidently communicating with team members.

Download Resource Guide

See More From Shared Decision Making: Navigating Prostate Cancer Care

Related Resources:

Tools for Becoming an Educated and Empowered Prostate Cancer Patient

You Have a Role in Your Prostate Cancer Care Decision

Transcript: 

Niki: 

Hi, I’m Niki, and I’m a prostate cancer nurse practitioner. And this is Anthony, who is living with prostate cancer. Thanks for joining us! 

[Disclaimer on screen: Patient experience depicted in this video is fictional.] 

Anthony: 

In this video, we’re going to walk you through the members of your prostate cancer healthcare team – and share tips for building strong relationships and communicating more effectively. 

Niki: 

When it comes to prostate cancer, you need a team that collaborates on all aspects of your care. And it’s vital that you utilize ALL the members. After all, they are there to help you. 

So, who IS on your team? 

There are several different providers who may be involved with your prostate cancer diagnosis and care: 

  • Let’s start with a urologist. This is a doctor who specializes in the male reproductive organs and can perform prostate cancer surgery. Some are also trained oncologists – urologic oncologists – who are specially trained in cancer. 
  • Then there could be a radiation oncologist. This team member specializes in treating prostate cancer with radiation. 
  • Next, there may also be a medical oncologist. This is a physician who is trained in non-surgical prostate cancer approaches, such as hormonal therapy and chemotherapy. 
  • And, finally, your primary care physician should also be kept in the loop. 

Anthony: 

And beyond your doctors, there is a whole team of supportive professionals to help you along the way. For instance: 

  • A nurse like Niki can provide you with information to help with decisions and share advice for managing day-to-day issues, including symptoms and side effects. You may also want to work with a nurse navigator, who is specially trained to help guide you through your cancer care. 
  • A social worker can help you navigate the details of your care and suggest support resources for you and your family.  
  • And a palliative care specialist can work with you on helping to relieve symptoms, pain, and even stress-related issues like anxiety and depression. 

Niki: 

 There are several other team members you can rely upon, including: 

  • A pharmacist, who can dispense prescription medications and inform you of their use and potential side effects. 
  • A genetic counselor, who has special training in helping patients understand their genetic testing options and the potential impact of the results.  
  • And don’t forget mental health professionals. Treating your mental health is just as important as treating the prostate cancer itself.  

Anthony: 

Exactly. I struggled emotionally when I was diagnosed, so I reached out to the social worker, who connected me with a counselor and support groups. Seeing a professional and joining a group made feel less alone and more hopeful.  

Niki: 

And last, but not least, a care partner or loved one is another core member of your team.  

Anthony: 

Absolutely! Whether it’s a friend or family member, having someone with you at appointments or to talk about your options is beneficial. 

Now that you know who may be on your team, let’s talk about strengthening communication. By communicating effectively, you can learn about your disease and become an active partner in care decisions. Here are a few tips to help you: 

  • First, make sure everyone on your team is aware of your care goals. 
  • And bring someone to appointments to help you write down important information and make sure to request post-visit summaries to help you retain the information. 
  • Ensure you have access to your patient portal and use the messaging service to communicate directly with your team members. Ask follow-up questions about your appointment if necessary. 
  • Finally, it’s essential to speak up in appointments. Your team wants to hear your questions and know how you are doing. It could help them adjust your care plan. 

Niki: 

Thank you for joining us – we hope you feel more empowered! And remember to download the guide that accompanies this video to review what we discussed. 

Understanding Your Prostate Cancer Diagnosis

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Understanding Your Prostate Cancer Diagnosis from Patient Empowerment Network on Vimeo.

What do you need to know about your prostate cancer diagnosis? This animated video reviews the diagnosis process and provides steps for working with your healthcare team to understand your individual disease.

Download Resource Guide

See More From Shared Decision Making: Navigating Prostate Cancer Care

Related Resources:

Tools for Becoming an Educated and Empowered Prostate Cancer Patient

Building a Relationship With Your Prostate Cancer Healthcare Team

You Have a Role in Your Prostate Cancer Care Decision

Transcript: 

Niki: 

Hi! I’m Niki, and I’m a prostate cancer nurse practitioner. And this is Anthony, who is living with prostate cancer.  

[Disclaimer on screen: Patient experience depicted in this video is fictional.] 

Anthony: 

In this video, we’ll help you understand prostate cancer and how it is diagnosed and staged. 

Niki: 

So, what is prostate cancer exactly? It starts when cells in the prostate gland grow out of control, forming a cancerous tumor.  

It’s the second most common cancer in American men. And while it can be serious, there are options available for prostate cancer care.  

Anthony: 

And there are certain risk factors that may make you more likely to develop prostate cancer, such as: 

  • Your age. 
  • Your race and ethnic background. For instance, Black men are more likely to be diagnosed with prostate cancer than men of other races. 
  • Your family history and your genetics.  

Niki: 

That’s right, Anthony. Now that we have a better understanding of what prostate cancer is, let’s move on to how it is diagnosed.  

Your healthcare team will use a variety of tests to better understand your disease. 

For example, A PSA test [PSA: Prostate-Specific Antigen on screen] and a biopsy may be used to confirm a diagnosis. And imaging tests—like an MRI or CT scan—are used to find out if the cancer has spread. 

These test results also help your doctor stage your disease. Staging helps indicate the location of the cancer, whether it has spread beyond the prostate, and its impact on other areas of the body. It may also assist in guiding a patient’s treatment plan.  

When staging prostate cancer, doctors may consider: 

  • The size of the primary tumor and where it is located. 
  • They’ll also factor in if the cancer has spread to nearby lymph nodes or other parts of the body. 
  • The patient’s PSA level is also used in staging. This test measures the amount of prostate-specific antigen in the blood. 
  • And finally, the cancer’s grade, which is based on the Gleason score. A Gleason score measures how likely the cancer is to spread and whether it is aggressive. 

Anthony: 

Thanks for explaining that, Niki. So, what are the stages of prostate cancer?  

Niki:

Great question!  

  • Prostate cancer stages begin at stage I, which indicates a slower growing disease that is confined to the prostate. 
  • And stage II means the cancer is only in the prostate, but the disease may have an increased chance of growing or spreading.  
  • Stage III prostate cancer indicates that the tumor has spread to areas close to the prostate and may be considered locally advanced.  

Anthony:   

And I was diagnosed with stage IV prostate cancer, which means it has spread beyond the prostate and is considered advanced prostate cancer.  

Niki: 

That’s right. And because prostate cancer staging is complicated, it’s important to review test results with your doctor to understand your stage and grade. If you don’t understand your diagnosis, make sure to ask questions and request resources to help you.  

Anthony: 

Here are some additional steps you can take to feel more confident about understanding your diagnosis: 

  • First, ask about the stage of your prostate cancer and whether it is aggressive. 
  • And confirm that you have had all relevant testing to inform an accurate diagnosis, including genetic testing, if appropriate. 
  • Then, be sure to review the test results together with your team to make sure you understand how they impact your care and treatment options. 
  • Also, ask about your Gleason score and how it impacts your decisions.  

Niki:

And find out how experienced your physician is in treating your type of prostate cancer and consider seeking a second opinion with a prostate cancer specialist. 

Anthony: 

Finally, don’t hesitate to request support resources to help you cope emotionally with your diagnosis.  

Niki: 

Visit powerfulpatients.org/pc to view all the videos in this series and download the guide that accompanies this video to review what we’ve discussed.   

Anthony: 

Thanks for joining us! 

Tools for Becoming an Educated and Empowered Prostate Cancer Patient

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Tools for Becoming an Educated and Empowered Prostate Cancer Patient from Patient Empowerment Network on Vimeo.

What steps can you take to become an empowered prostate cancer patient? In this animated video, you’ll learn tools for self-education and self-advocacy to help you partner in your care decisions.

Download Resource Guide

See More From Shared Decision Making: Navigating Prostate Cancer Care

Related Resources:

Building a Relationship With Your Prostate Cancer Healthcare Team

You Have a Role in Your Prostate Cancer Care Decision

Transcript: 

Niki: 

Hi! I’m Niki, and I’m a prostate cancer nurse practitioner. And this is Anthony, who is living with advanced prostate cancer.  

Together, we’re going to guide you through a series of videos to help you learn more about prostate cancer and give you steps to play an active role in your care and treatment decisions. 

First, I want to introduce you to the organization responsible for this video—the Patient Empowerment Network—or “PEN.”  

PEN’s mission is simple. It’s to provide cancer patients and care partners with the knowledge and tools to boost their confidence, put them in control of their healthcare journey, and assist them in their goal of receiving the best, most personalized care available.  

[Patient experience depicted in this video is fictional.]

Anthony: 

So, what does it mean to be an empowered patient? The World Health Organization defines it as “a process through which people gain greater control over decisions and actions affecting their health.”1 

When I was first diagnosed with prostate cancer, I was overwhelmed, and I didn’t feel comfortable sharing my concerns and opinions. But through finding out more about my disease, working together with my team and learning to advocate for myself, I felt more in control and more confident speaking up. 

Niki: 

Exactly, Anthony. One of the first steps to becoming an empowered patient is to educate yourself about your disease. You can start learning about your prostate cancer by:  

  • Making sure you can access your online patient portal, if available, so you can view your medical records, communicate with your healthcare team, and access resources when you need them. If you don’t know how to use the patient portal, just ask your doctor’s office – they should have a set of instructions on hand. 
  • You can also visit credible prostate cancer advocacy groups to learn about your condition. These organizations are typically an excellent source of information and support. Ask your healthcare team for recommendations.  

Remember, online information is never a substitute for medical advice. You should always consult your doctor about what you’ve learned. This will become easier as you get a better understanding of your disease and feel more comfortable sharing with your healthcare team. 

Anthony: 

That’s right, Niki. But, as I learned firsthand, speaking up is not always easy. Here are some tips that helped me: 

  • Write down your questions before your appointments. Visit powerfulpatients.org/pc to access office visit planners to help you organize your notes. 
  • And, try to bring a friend or loved one to your appointments to help you remember information and to take notes for you. 
  • Another tip is to be honest about how you feel and share any treatment side effects or symptoms you may be having with your healthcare team. Your doctor wants to know how you are doing and may be able to help you if you are having issues.  
  • It’s also a good idea to consider a second opinion to help you feel confident in your care and to provide piece of mind. This is especially important if you feel like you are not being heard. 
  • And, lastly, you have a voice in your care decisions. Don’t hesitate to ask questions – YOU are your own best advocate.  

Niki: 

That’s great advice, Anthony! We’ve covered a lot. So don’t forget to download the guide that goes with this video—it can help you remember what we’ve discussed. 

Anthony: 

And visit powerfulpatients.org/PC to view more videos with Niki and me. Thank you for joining us!