Tag Archive for: urologist

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. 

Why Should Bladder Cancer Patients See a Specialist?

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Why Should Bladder Cancer Patients See a Specialist?  from Patient Empowerment Network on Vimeo.

Dr. Fern Anari from Fox Chase Cancer Center reviews the benefits of seeing a specialist for a consultation following a bladder cancer diagnosis.

Dr. Fern M. Anari is a genitourinary medical oncologist and assistant professor in the Department of Hematology/Oncology at Fox Chase Cancer Center. Learn more about Dr. Anari, here.

See More From The Pro-Active Bladder Cancer Patient Toolkit

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 Who Should Be on Your Bladder Cancer Care Team_

Who Should Be on Your Bladder Cancer Team?

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The Importance of Self-Advocacy in Bladder Cancer Treatment

Transcript:

Katherine Banwell:

Why should patients consider seeing a bladder cancer specialist? And how can they find a specialist?   

Dr. Anari:

So, I think, always, you can speak with your primary care doctor or your local urologist. They’ll know the bladder cancer specialist in the area. I think it’s important to see a bladder cancer specialist, because the field of oncology is always changing. So, you want to be treated by someone who really is the most up to date on treating bladder cancer. 

Bladder cancer specialists may also have access to cutting-edge clinical trials, which you may be interested in. So, it’s nice to know what both the standard options are but also the clinical trial options to see what the best fit is for you.  

Katherine Banwell:

What advice do you have for patients that may feel like they are hurting their doctor’s feelings by seeking a second opinion?  

Dr. Anari:

So, if my patient is interested in getting a second opinion, I always encourage it. And I actually give them recommendations on people to see. I think very few providers will feel offended or upset by one of their patients requesting a second opinion. At the end of the day, each person’s cancer journey is different. And each person needs to feel comfortable with their own treatment plan. 

And by getting a second opinion, they may have treatment options available to them that weren’t otherwise available. So, it’s always nice to know what’s out there.  

Who Should Be on Your Bladder Cancer Care Team?

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Who Should Be on Your Bladder Cancer Care Team? from Patient Empowerment Network on Vimeo.

Dr. Shilpa Gupta of Cleveland Clinic provides an overview of the multidisciplinary bladder cancer care team and discusses the key role of the patient on the team. 

Dr. Shilpa Gupta is the Director of the Genitourinary Medical Oncology at Taussig Cancer Institute and Co-Leader of the Genitourinary Oncology Program at Cleveland Clinic. Dr. Gupta’s research interests are novel drug development and understanding biomarkers of response and resistance to therapies in bladder cancer. Learn more about Dr. Gupta, here.

See More From The Pro-Active Bladder Cancer Patient Toolkit

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What Are Treatment Goals for Bladder Cancer?

What Are Treatment Goals for Bladder Cancer?

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The Importance of Patient Self-Advocacy in Bladder Cancer Treatment

Transcript:

Katherine:                  

You’ve spoken about a multidisciplinary care team for bladder cancer patients. Who are the members of that team?

Dr. Gupta:                  

So, the multidisciplinary care team are all the key players who participate in patient’s care.

The urologist who, for the most part, diagnoses patients. Because patients are, let’s say, having blood in the urine, they see a urologist, bladder mass.

Then it’s the medical oncologist like us who are kind of the neutral folks where even if the patient is undergoing surgery, we offer some treatment. If a patient is undergoing radiation, we offer some treatment. If a patient is metastatic disease, then sometimes, they just see us, unless they have some complications or if they have a new spot in the bone where we want them to get radiated then we include that.

Then there’s the radiation oncologist, whose role comes for patients with localized disease. So that a patient, when they are diagnosed with bladder cancer and have localized disease, they should know all their options. That surgery is one option. 

Radiation can be another option, and they have options to preserve their bladder too. I think that’s what a multidisciplinary clinic comprises.

How to Locate Prostate Cancer Clinical Trials and Improve Awareness

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How to Locate Prostate Cancer Clinical Trials and Improve Awareness from Patient Empowerment Network on Vimeo.

 How is prostate cancer impact different for some populations? Watch as experts Dr. Yaw Nyame and Sherea Cary share the benefits of clinical trials, reliable clinical trial resources, and how clinical trial participation rates can be improved for better care.

See More From Best Prostate Cancer Care No Matter Where You Live

Related Resources:

Transcript:

Sherea Cary: 

What advice do you have for prostate cancer patients about locating a clinical trial? Where can you find one? 

Dr. Nyame: 

Clinical trials tend to happen at the big cancer centers and the big academic university centers, although many of those programs will have affiliate partners out in the community. The easiest way to learn about clinical trials is to start by asking the physician that’s treating you for your prostate cancer, oftentimes, they’ll have resources and connections to the trials directly or are the people who are administering them. However, other great sources are going to be patient advocacy networks, and there are many of them for prostate cancer, there’s one…there are several. I’ll start naming a few. They have the Prostate Cancer Foundation, you have Us TOO, you have Zero Cancer, you have a PHEN, Prostate Health Education Network, which is an advocacy group for Black men with prostate cancer. So, these are all great sources of finding out what clinical trials exist, and in addition, you can just get on the Internet and Google if that’s something you have access to. The trick is navigating all the information, and I think knowing what trials are available for you, whether you qualify, that kind of thing can be difficult, and that’s ultimately where finding a provider, whether it’s your direct urologists or radiation oncologist or whoever is helping treat your prostate cancer, either them directly or sometimes seeking a second opinion, and going to a place where you might find someone who has some expertise in trials, if that’s something that you’re interested in. 

Sherea Cary: 

My father participated in a clinical trial, it was going on, I think the time of his treatment, and it was offered to us, and he was at a big facility here in Houston that offered…ask him if he wanted to participate. We did a lot of research. We said we’d try it. And we were glad to be able to participate. I participated in clinical trials also for different health conditions, because I believe it’s important that we have to participate in order for our people to gather the information that’s necessary. So, thank you for that. 

Dr. Nyame: 

Absolutely, you know I think there are a lot of reasons that we think that our Black community, for instance, may not participate in a clinical trial given the history of medical experimentation and various forms of abuse that have existed in our history. But what I recently heard from our partner of our community partners at PHEN, when they surveyed Black men about prostate cancer clinical trials, was that although there was some concern about trust in the history, that the overwhelming majority of the men wanted to participate, but they never were asked. And that’s really stuck with me, and I think that Black men are under-represented in clinical trials, and we have to find ways to be more inclusive and understand what barriers might exist into participation so that we can have that data to care better for the population. 

Why Is Prostate Cancer Often Referred to As a Couples’ Disease?

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Why Is Prostate Cancer Often Referred to As a Couples’ Disease? from Patient Empowerment Network on Vimeo.

Prostate cancer is often referred to as a disease of couples, but why is that? Watch as expert Dr. Yaw Nyame shares the impact of social support on prostate cancer outcomes and ways that family and friends can help with prostate cancer care.

See More From Best Prostate Cancer Care No Matter Where You Live

Related Resources:

Transcript:

Sherea Cary: 

So, some people may consider prostate cancer a couples’ disease. What advice would you give to a care partner? My father was a prostate cancer survivor, my mother was very supportive of him, but I took much of the lead as far as being his caregiver and coordinating things between my father, his doctors’ appointments, and with my siblings. 

Do you believe that support people, caregivers, such as children, are able to also assist in receiving care? 

Dr. Nyame: 

Absolutely. The data is overwhelming in this scenario, patients who are partnered or have strong social support do better, and I always say that the patients who have the best outcomes when it comes to cancer, have someone like you, Sherea in their life. It’s not surprising, given the burden of cancer treatment, that having someone that can help navigate all the aspects of your care and be there to support you leads to better outcomes and better satisfaction with the treatments that you choose. A cancer diagnosis, especially prostate cancer diagnosis, a disease that has a very high cure rate, has a very long-life span, but has really life-altering potential consequences of the treatments you received, has an impact on what we return for survivorship. So how do you live with your cancer, and so the individuals that are there to support you through that journey are absolutely critical.  

How Can a Multi-Disciplinary Team Benefit Prostate Cancer Patients?

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How Can a Multi-Disciplinary Team Benefit Prostate Cancer Patients? from Patient Empowerment Network on Vimeo.

 A prostate cancer multi-disciplinary team can benefit patient care. Watch as expert Dr. Yaw Nyame explains the typical steps taken through prostate cancer care and how the team members can vary for localized prostate cancer versus advanced prostate cancer. 

See More From Best Prostate Cancer Care No Matter Where You Live

Related Resources:

How Has the Onset of Prostate Cancer Evolved?

Transcript:

Sherea Cary: 

What does a multi-discipline approach to prostate cancer look like?  

Dr. Nyame: 

Well, when you think about prostate cancer and how it’s diagnosed and how it’s treated, you’re talking about a process that involves a team, the process often starts with your primary care physician, he or she may order a PSA test, which will prompt a biopsy if it’s positive. So that’s the step one is that relationship you have with your primary care physician. Step two is going to be your urologist, that’s the person that’s going to do your biopsy, and if you are diagnosed with prostate cancer that person in conjunction with your primary care physician is then going to be leading this process of do we actively watch your cancer because it’s a low risk, or do we seek treatment because it’s localized, meaning it’s in the prostate and we can still get your treatment with curative intent as we call it, or has it spread? And in that case, your options for a doctor are different on the watch side, you’re probably looking at a urologist who’s watching closely, on the localized side, you’re going to talk to maybe a radiation specialist or a urologist, because both treatments are equal and their effectiveness from cancer treatment.  

But they have different side effects. And I think to get good information about what treatment is best for you, you should see both, and then on the advanced side, you’re talking about a medical oncologist that’s going to help navigate all of the various treatments that we have now for stage IV prostate cancer, and even in that setting, you might still find yourself considering a clinical trial with someone like a urologist or getting radiation treatment, which can be standard of care in select patients that have stage IV cancer. So, as you can see, it is a very wide range of individuals that are helping take care of your cancer, and that’s just on the treatment side, that’s not talking about any of the other supportive services that you may need that may exist either in your community or in your health systems where you’re getting treated. And those can include patient navigators, social workers, the various nursing services, nutritionists, there are a lot of people that you may want to put on your team as you’re considering your care.  

Armia’s Story

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Armia’s Story | Renal Medullary Carcinoma from Patient Empowerment Network on Vimeo.

Renal medullary carcinoma (RMC) patient Armia Austin was diagnosed at age 21. Watch as she shares details about her diagnosis and treatment journey, advice to others for sickle cell trait testing, and hopes and goals for the future.

Transcript:

Armia Austin:

I was diagnosed with RMC back in May of 2020. I was 21 years old when I was diagnosed and I was at college when I started getting symptoms. The timing couldn’t have been better because I had symptoms and then it was spring break and then the pandemic hit. So, I was able to come home, be with my family, and be able to attend all these doctors’ visits, ’cause I had to get CT scans, MRI all that kind of stuff. So, the timing was good because I was able to come home from college and get the testing that I needed to see exactly what was going on. Finding a doctor was very simple, because I went through my primary care doctor, and then I was referred to a doctor for my urinary tract, so I saw someone to get a CT scan on my bladder and all that stuff, and then they saw a tumor on my right kidney, so they didn’t know what it was, and they didn’t care if it was cancerous or not, I’d see a neurologist for that, so they didn’t care if it was cancerous or not, they just wanted me to remove the kidney all together as soon as possible because of the size of my tumor. So, in May, I got the kidney removed, my right kidney removed, and then I followed up with the doctor who removed my kidney, my urologist, and they noticed that it was called renal medullary carcinoma, that was the type of tumor it was, and they followed up with an oncologist that I was able to meet with immediately because they wanted me to be watched regardless if it has spread or not.

So, my treatment path was, it was a pretty easy transition because I was able to have a urologist set up right away. So it was actually, I’d say after three months of not having or, of getting my right kidney removed, I was set up for a CT scan three months, fast forward three months from the surgery, but I started getting symptoms probably three weeks after my kidney surgery. I had a very rough chest pain, it was very heavy on my chest, I had issues breathing, so I… fast forward, I got another CT scan and there was fluid, they were fluid all over my chest in the CT, it filled my entire right lung, so it went from my right kidney all the way up to my right lung and it filled the entire lung, so I was breathing off of one lung at the time, and I would have anxiety attacks, panic attacks, everything because it was so hard to breathe on its own, so it would freak me out, but then I was able to get tapped in my back, so they would numb my back and then drain the fluid so it would release the tension in my lung area, but then I was able to get on chemotherapy by August, I had an event where my friends came over and they all shaved their heads for me, so that was really nice.

So talking to friends and family was definitely a huge benefit for me because people were always praying, leaving me messages, checking in on me, making sure I was okay, and when you are a cancer patient, it’s really hard to understand or wrap your head around the fact that you actually are

sick in a sense of like it’s very different from anything, any kind of sickness you have encountered before, so it was hard, but definitely talking to friends and family made the difference. My advice to others is definitely get tested for the sickle cell trait as soon as possible. I think that is the most important thing because that’s where it all starts. So even if you have the sickle cell trait, it doesn’t necessarily mean that you will be prone to this cancer, but it’s definitely good to get the test so that if it were to come up in the future, you would know how to handle it sooner.

So, my hope for the future, I’ve been on chemo for about six months now, and it’s been going very well for me. I’m still a college student, I never took time off from classes, so I never took not even a summer off when I was diagnosed, I was still in summer classes, finished fall semester, and now I’m in Spring, so I will be scheduled to graduate this May, May of 21, and then eventually I plan to go to medical school and become a doctor myself. Because I love the idea of helping other people who are unable to help themselves, and I feel like if we have more leaders in the healthcare field who can relate to a perspective, then we’ll have a lot more better doctors in the world because of the relationship and the perspective of being on the opposite end of the spectrum.

Never take life for granted because you never know what will come out of it. And I can say that from my experience, cancer isn’t what I planned for myself. I never thought I would be diagnosed at 21 years old, but it really shaped me as an individual as far as how important and how crucial life is, and how important is to stay on top of your health and you know just life is very important and whoever is going through something, just be grateful that you have the chance to get the help you need and that it’s not too late to get help from any type of medical professional because everyone’s life is important, everyone’s life is crucial.

And renal medullary carcinoma should not go unnoticed because it’s a crazy and it’s a crazy cancer, but with more research and more help and people who are more informed because of the cancer, I feel like we’ll be able to stop a lot of cases in the future.