Tag Archive for: patient empowerment

What Should You Know Before Participating in a Breast Cancer Clinical Trial?

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What Should You Know Before Participating in a Breast Cancer Clinical Trial? from Patient Empowerment Network on Vimeo.

Is there a point in a patient’s breast cancer care when a clinical trial should be considered? Breast cancer expert Dr. Bhuvaneswari Ramaswamy shares her perspective.

Dr. Bhuvaneswari Ramaswamy is the Section Chief of Breast Medical Oncology and the Director of the Medical Oncology Fellowship Program in Breast Cancer at The Ohio State College of Medicine. Learn more about Dr. Ramaswamy.

See More from Breast Cancer Clinical Trials 201

Related Resources:

When Should Breast Cancer Patients Consider a Clinical Trial?

 Hesitant to Join a Breast Cancer Clinical Trial? What You Should Know.

 Key Questions Patients Should Ask Before Participating in a Breast Cancer Clinical Trial

Transcript:

Katherine: 

Well, what questions should patients ask their team before they even begin a clinical trial? 

Dr. Ramaswamy:

I think most important thing, and in – and usually, a doctor would – should really explain this to you, particularly if it’s a little bit of a complex study with a paper and pen. They need to tell you if this is two arms, that you may be randomized into this arm versus this arm. So, what you need to understand is what are the drugs and what are the differences between these two arms? Whether you go into this arm or this arm, are you going to be compromised with your outcomes? And that is important to understand. And now certain arms may have a little bit more blood draws or scans. And so it’s important to understand what it means, what commitment of your time and other things that goes on with different treatments.   

So, again, these are important for you to understand. Also, it’s important for you to know what is that experimental drug? What is that new drug? Right? And what data do they have from the past about this drug? Has it been tried in humans before or is this the first in the human study? And what does a target, why is it used in my cancer? How do you think it’s going to work? And what are the side effects that comes with this experimental drug? Mm-hmm. I think for you, the most important thing is to understand what is your commitment because the commitment during clinical trials can increase a little bit. You may have to come in, stay a bit longer to kind of check the drug levels in your body, in your blood, or do more testings, blood draws, and things like that.  

Are you willing to do that? That’s something for you to answer. Don’t feel that you need to do this for some reason other than it fits your life and it fits your philosophy, okay? But also don’t push it away thinking that just because you don’t know enough and you’ve heard things from outside, it’s important for you to hear it from your providers and understand it clearly and then make a decision that’s right for you. 

When Should Breast Cancer Patients Consider a Clinical Trial?

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When Should Breast Cancer Patients Consider a Clinical Trial? from Patient Empowerment Network on Vimeo.

Is there a point in a patient’s breast cancer care when a clinical trial should be considered? Breast cancer expert Dr. Bhuvaneswari Ramaswamy shares her perspective.

Dr. Bhuvaneswari Ramaswamy is the Section Chief of Breast Medical Oncology and the Director of the Medical Oncology Fellowship Program in Breast Cancer at The Ohio State College of Medicine. Learn more about Dr. Ramaswamy.

See More from Breast Cancer Clinical Trials 201

Related Resources:

Key Questions Patients Should Ask Before Participating in a Breast Cancer Clinical Trial

 Should Breast Cancer Patients Consider a Clinical Trial?

 Hesitant to Join a Breast Cancer Clinical Trial? What You Should Know.

Transcript:

Katherine: 

Let’s talk about where clinical trials fit into a breast cancer treatment plan. When should someone with breast cancer consider a trial? 

Dr. Ramaswamy:

And the most important thing again here to understand is clinic – you should consider a clinical trial at all aspects, all parts of your journey through this whole diagnosis and whatever the outcomes that you are going to have. We all have a lot of misconstrued ideas about clinical trials. And one of the thing is we think clinical trials are only when standard of care is not needed like that is that – we don’t have other treatments. That you are coming to a point that you don’t have other treatments and now you should go to clinical trials. That is not true, right? Because the fact that you can have these treatments in your curative setting came because many of the patients before you were willing to go on the trial that compared standard of care, which may not have had that new drug with a competitor to the new drug with the standard of care.  

So, nobody gives – the important thing to understand is no one is going to give you a placebo alone for cancer treatment. Think about that. I mean, there’s no way a doctor whose oath is to cure you to help you is going to just give you placebo. So, it is important for you throughout your process to actually ask. In fact, we used to wear a badge to say ask your doctor about clinical trials. So, ask your doctor about it, even if they miss it. Just ask, is there a clinical trial that I could fit in? They’re supposed to look for it, but you don’t need to leave it at that.  

Ask at all aspects of your journey for a clinical trial option. If you are not suited for the trial, no provider is going to put you on that trial because everybody   has  the same goal that you need to get better. Your  chances of getting better is high. 

What Is Precision Oncology and What Does It Mean for Breast Cancer Patients?

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What Is Precision Oncology and What Does It Mean for Breast Cancer Patients? from Patient Empowerment Network on Vimeo.

Are we closer to personalizing breast cancer treatment? Dr. Bhuvaneswari Ramaswamy defines precision oncology and explains the progress being made to make it a reality.

Dr. Bhuvaneswari Ramaswamy is the Section Chief of Breast Medical Oncology and the Director of the Medical Oncology Fellowship Program in Breast Cancer at The Ohio State College of Medicine. Learn more about Dr. Ramaswamy.

See More From INSIST! Metastatic Breast Cancer

Related Resources:

Genetic Testing VS Biomarker Testing: What’s the Difference

Genetic Testing VS Biomarker Testing: What’s the Difference?

 How Do Biomarker Test Results Impact a Breast Cancer Patient’s Prognosis

How Do Biomarker Test Results Impact a Breast Cancer Patient’s Prognosis?

 How Do Genetic Mutations Impact Breast Cancer Risk, Prognosis and Treatment

How Do Genetic Mutations Impact Breast Cancer Risk, Prognosis, and Treatment?

Transcript:

Katherine: 

We often hear the term precision oncology. What exactly does that mean? 

Dr. Ramaswamy:

So, precision oncology is again, one of the ways that we are getting better, right? So, what we are trying to understand is that originally, we just understood cancer as just where all it is and how spread it is. Again, an anatomical. Now we are getting more and more into the biology. So, in the biology we were focusing more on the RNA. There are two things, the RNA and DNA. DNA is your code, and RNA is the one that comes from the DNA kind of the message that goes, makes the protein, which changes everything in your body. So, we were focusing on the RNA, which are the biomarkers, right? Because we – you that that’s what drives the cancer. Now we are focusing more on the DNA. What is changing within the core, that blueprint in the tumors that is causing resistance that is making cancer cells worse?  

Could we target those? And so that is what is precision oncology. They’re trying to understand the genetic core change within your tumor and maybe able to target that. You could have breast cancer, you could have a completely different cancer like lung cancer. But if you have the same genomic change or gene change within the tumor, could we just target that cells and be able to get a really good response? And those are the kind of ways we are going towards. And I can tell you it is as you hear this concept, it sounds like so bizarre. I’ll tell you, I felt the same too when it all started, even as a scientist and an oncologist. But it is truly becoming a reality. And in certainly in more some cancers more than the others, but it’s slowly becoming a reality for all cancers. So definitely, again, a positive and a tailored therapy to the patient. And so that’s what we want. 

How Do Biomarker Test Results Impact a Breast Cancer Patient’s Prognosis?

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How Do Biomarker Test Results Impact a Breast Cancer Patient’s Prognosis? from Patient Empowerment Network on Vimeo.

What role do biomarker test results play in a breast cancer patient’s prognosis? Dr. Bhuvaneswari Ramaswamy reviews important biomarkers, such as hormone receptor status, and how they affect care.

Dr. Bhuvaneswari Ramaswamy is the Section Chief of Breast Medical Oncology and the Director of the Medical Oncology Fellowship Program in Breast Cancer at The Ohio State College of Medicine. Learn more about Dr. Ramaswamy.

See More From INSIST! Metastatic Breast Cancer

Related Resources:

What Do You Need to Know About Metastatic Breast Cancer Genetic Testing?

What Do You Need to Know About Breast Cancer Genetic Testing?

 How Can Breast Cancer Genetic Testing Empower Women?

How Can Breast Cancer Genetic Testing Empower Women?

 How Do Genetic Mutations Impact Breast Cancer Risk, Prognosis and Treatment

How Do Genetic Mutations Impact Breast Cancer Risk, Prognosis, and Treatment?

Transcript:

Katherine: 

How do biomarker test results impact prognosis? 

Dr. Ramaswamy:

All of them do because it’s important to understand that that’s why this – these biomarkers carry a lot of weight. Biomarkers are good, are important, but when the most important biomarkers are that are going to impact outcomes. And then even more important is whether they’re going to predict the efficacy of a treatment, the outcomes used by the success of a treatment, right?  

So, in that way, if your tumor is estrogen and progesterone receptor- positive, then you generally tend to do a little bit better. And they are slightly better tumors for sure, and you know that the anti-estrogens would work. So, these – there’s two ways. They are prognostic and predictive. Now, the whole two positive tumors previously used to have a worse prognosis, but we have such wonderful anti HER2 therapies now that we can use. Now we know that if you use those therapies, the outcomes are better.   

So, it’s predictive again, that predictive of the treatment and prognostic. Now the triple negatives are usually a little bit more difficult to treat because as you can understand, they don’t have any of these targets for us to use targeted therapy at this point. There is definitely some improved outcomes using immunotherapy, but you know that we don’t have those proteins. So, slightly worse outcomes for sure, triple negative among all of these subtypes. And also there is no biomarkers.  

We do use immunotherapy, which is helping certain percentage of those patients, but we still need to understand why it’s not helping other people. So, yeah. 

Genetic Testing VS Biomarker Testing: What’s the Difference?

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Genetic Testing VS Biomarker Testing: What’s the Difference? from Patient Empowerment Network on Vimeo.

What do breast cancer patients need to know about the differences between genetic testing and biomarker testing? Dr. Bhuvaneswari Ramaswamy explains how the test types differ and discusses how the results may impact care.
 
Dr. Bhuvaneswari Ramaswamy is the Section Chief of Breast Medical Oncology and the Director of the Medical Oncology Fellowship Program in Breast Cancer at The Ohio State College of Medicine. Learn more about Dr. Ramaswamy.

See More From INSIST! Metastatic Breast Cancer

Related Resources:

What Do You Need to Know About Metastatic Breast Cancer Genetic Testing?

What Do You Need to Know About Breast Cancer Genetic Testing?

 How Can Breast Cancer Genetic Testing Empower Women?

How Can Breast Cancer Genetic Testing Empower Women?

 What is the Role of Genetic Testing in Breast Cancer

What Is the Role of Genetic Testing In Breast Cancer?

Transcript:

Katherine: 

Patients are often confused about the difference between hereditary genetic testing and biomarker testing. Would you explain the difference? 

Dr. Ramaswamy:

Absolutely. So, the hereditary genetic testing is what are the genes that you got from your parents? It could be mother or father. And we all think that because it’s breast cancer should be just from mother. It doesn’t matter. It can be from mom or dad. And that influences your breast cancer risk. So, if you have some mutations or some changes in certain genes that can increase your risk of breast cancer. And the well-known ones are the BRCA1, BRCA2, but we also now know a few more like the PALB, ATM and CHEK2 and other things.  

So, now when you do have a family history, or sometimes even based on your age and your oral history, we do test for this hereditary risk factors that you might have and that may influence your surgery and some type of treatments that we give as well.  

Now as far as biomarkers, biomarkers are more proteins that we check in your tumors. The breast cancer that you already have, and that we may do the biopsies. We look for these tumor proteins that influences the growth of your cancer cells. So, we can target these biomarkers and decrease the growth of your cancer cells. 

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 Prostate Cancer Patients Be Empowered?

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Why Should Prostate Cancer Patients Be Empowered? from Patient Empowerment Network on Vimeo.

Prostate cancer researcher Dr. Andrew Armstrong explains how he empowers his patients and describes the positive benefits of speaking up in your own care.

Dr. Andrew J. Armstrong is a medical oncologist and director of clinical research at the Duke Cancer Institute’s Center for Prostate and Urologic Cancers. For more information on Dr. Armstrong here.

See More from Engage Prostate Cancer

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Prostate Cancer Shared Decision-Making: How Does It Work?

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An Expert’s Perspective on Emerging Prostate Cancer Research

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Key Questions for Prostate Cancer Patients to Ask Before Joining a Clinical Trial

Transcript:

Katherine Banwell:

How do you empower patients? 

Dr. Armstrong:

Well, I empower patients by talking and listening. So, listening probably the most important part. Just getting to know somebody and their family is empowering them. You’re understanding their values, their preferences, understanding what side effects they’ve experienced in the past, what comorbidities or health conditions they’re facing, what their fears are. You know, what spiritual values they might bring, what support systems they might bring.  

Every patient is different, and part of a consultation is getting to know the person in front of you, and that empowers them to be honest. Empowers you to be transparent and get to know them so that you can help them sift through a complex decision. 

Giving information is really important, so I do a lot of talking as well as listening. 

But giving information back to the patient about risks and benefits of treatment A, B, or C or no treatment is critical. And then there is a lot of then listening to that shared decision about what might be right for that patient and navigating it. 

Katherine Banwell:

Why is it important for patients to be empowered? 

Dr. Armstrong:

It’s important for patients to be empowered, because this can often be a life-threatening decision. It’s important because this is ultimately their decision for their body, and making this decision can have major consequences that patients have to live with. Doctors empower patients to make the right decisions so they’re comfortable and don’t have regrets looking back on life and these important decisions. Whether this is picking surgery or radiation, or picking initial surveillance, or enrolling on a trial, or starting hormonal therapy. 

I think each decision sometimes is reversible, but sometimes is a big decision that can’t be taken back, and making sure that that patient feels empowered, that they don’t have regrets later, that they’ve gotten all the information to make an informed decision is really critical. 

A DLBCL Expert Debunks Common Patient Misconceptions

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A DLBCL Expert Debunks Common Patient Misconceptions from Patient Empowerment Network on Vimeo.

Dr. Kami Maddocks responds to common diffuse large B-cell lymphoma (DLBCL) patient questions and misconceptions. Dr. Maddocks encourages patients to feel empowered in their care so they can partner with their healthcare team. 

Dr. Kami Maddocks is a hematologist who specializes in treating patients with B-cell malignancies at the The Ohio State University Comprehensive Cancer Center – The James. Learn more about Dr. Maddocks.

See More From The Pro-Active DLBCL Patient Toolkit

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Transcript:

Katherine:

It’s not always easy for patients to speak up. So, I’d like to debunk some common misconceptions that patients have, that may be holding them back. First one is, “I’m bothering my doctor with all my questions.” Is that true?  

Dr. Maddocks:

That is not true at all. So, the best thing is an informed patient. So, I want to answer all their questions. “What is the disease or diagnosis?” “What are the treatment options?” “What do we know now?” “What are we learning?” I need to know what’s going on. I always tell my patients that I can’t help them with what I don’t know. So, if somebody shows up, they get once cycle of treatment and they show up for a second cycle and they’ve had all these problems and never called or notified me, first of all, we weren’t able to help them. There’s a lot of things we can do to help them and if we don’t know what’s going on, we can’t help.  

And second, that might impact that second treatment, whereas knowing and knowing that sooner, we can plan to make changes.  

Katherine:

Yeah. That’s really good advice. Here’s another one. “My doctor’s feelings will get hurt if I get a second opinion.”  

Dr. Maddocks:

Not at all. So, I always encourage patients that they should get a second opinion, third opinion, whatever they need. Number one, I think it’s important that a patient feels comfortable with their diagnosis and their treatment plan, because I really think that things go better if they understand that and they’re comfortable. If they’re always doubting what’s going on, it’s really hard to develop that trusting relationship. And I think it’s very important that a patient has a trusting relationship with their care team.  

I think most of the time, when you get a second opinion, you’re probably going to hear or get the same advice. And so, that helps a patient to feel comfortable. Sometimes, there may be clinical trials out there that your doctor didn’t know about, that are options, and a doctor’s always going to be happy if there’s something out there available, that might make the patient outcome better, that they didn’t know about.   

And lastly, I would say there are a lot of doctors who treat all types of cancer, and there are some doctors that specialize in certain types of cancer. And so, if you were seeing a doctor who treats multiple different kinds, but want to see a doctor who specializes in a particular kind, they may be aware of a recent trial or a recent development that your doctor doesn’t know. Not because there’s anything wrong with that doctor, it’s just that there is so much data to keep up with these days, in cancer, that a specialist might be able to provide a point of view that somebody else doesn’t know.  

Katherine:

Yeah. Another question or comment is, “There isn’t anything that could be done about my symptoms or treatment side effects. So, why should I even say anything?”  

Dr. Maddocks:

Yeah. That’s a great question but the thing is, a lot of times there are things. So, the one thing is, some of the treatments we use for some of our cancers, including lymphoma, have been around for a really long time. But some of the things that have changed, are our supportive care or our ability to treat patient side effects. So, I think that it’s always important that patients let us know if they’re having side effects because maybe nausea – so, we give medication to prevent that.  

Usually, I send patients home with two different types of nausea medication. But if that’s not helping, I have more than two in my toolbox, I just don’t know to prescribe them if the typical things aren’t helping. So, a lot of times, there are things that we can do. Sometimes you have to tweak the dosing of the chemo, but really, the only way you can help with symptom management is if you know somebody’s having symptoms.  

Katherine:

Right. So, when somebody starts to have side effects from the treatment, should they contact their care team right away?  

Dr. Maddocks:

Yes. They should contact their care team right away. There are certain side effects, like having a fever during chemo, where they really need to go to the emergency room to be evaluated, to make sure it’s nothing. Because an infection can be very serious when you’re getting chemotherapy. Other side effects that are less emergent but, yes. Most of the time there’s a patient number that patients can call, where they can seek, like a nurse help line, where they can seek assistance, and that call can be escalated depending on the symptoms and what needs to be helped.  

But I think, again, it’s important that we know what’s going on so we can help patients. And then, if something needs to be further investigated – because occasionally there will be something that’ll make us think, “Oh, we really need to evaluate this patient because what if it’s more than what it seems?”   

Katherine:

Right. Are there any other misconceptions that you hear about from patients?  

Dr. Maddocks:

I think, just in general, thinking about the patient taking care of themselves. So, a lot of times there can be resources that patients have questions on. Things like exercise. Things like nutrition. Things in the environment that they can be exposed to. Just different things. I think it’s always important that you ask your care team if there’s any question, because they’re going to best be able to tell you versus just assuming something.  

There’s a lot of good information that patients can get from educational sites. There’s a lot of good information on the internet but there’s also a lot of bad information, or inaccurate information on the internet. So, I think it’s great for patients to use resources and educate themselves but I think that it’s always good to confirm with your care team. Myths versus facts.  

Expert Advice for Newly Diagnosed Advanced Non-Melanoma Skin Cancer Patients

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Expert Advice for Newly Diagnosed Advanced Non-Melanoma Skin Cancer Patients from Patient Empowerment Network on Vimeo.

Dr. Anna Pavlick provides three key pieces of advice for newly diagnosed advanced non-melanoma skin cancer patients to help them feel empowered in their care and treatment decisions.

Dr. Anna Pavlick is a medical oncologist with over 20 years of experience treating patients with skin cancer and is the founding Director of the Cutaneous Oncology Program at Weill Cornell Medicine and NewYork-Presbyterian. To learn more about Dr. Pavlick, visit here. 
 

Katherine:

What three key pieces of advice would you have for a patient who has just been diagnosed with advanced non-melanoma skin cancer?  

Dr. Pavlick:

I think the first one is number one: do your homework. Don’t just take anything for face value. You know, I tell my patients, “This is your life. If you go and do research about what appliance you’re going to put in your kitchen, I think you should also do a little bit of research about what doctor you’re going to allow care for you.” And so I always tell everybody, “Did you do your homework? Are you sure you’re in a place that is going to be able to provide you with the care that you need? Are the physicians that you’re seeing experienced in the disease that you have?” Because they may be brilliant physicians, but they may not have any expertise in that particular area. And so I think it really behooves people to – I tease my patients, I ask them if they go to “Google Medical School.”  

And really, find out a little bit about our backgrounds, find out about the institution that you’re going to, and learn a little bit about the disease. I’m certainly not saying come in and tell us what you want to have done, because I would hope that it takes many years of training and expertise to know how to make a good decision. But I think the more that patients know about the physicians that they’re seeing, and their level of expertise, and their interest, the better the outcome’s going to be. So that’s number one, number two is consider clinical trial. If you are a candidate for a clinical trial, consider it.   

Because we are taking promising agents and looking for ways to make patients have better outcomes. And so, many times when we talk about clinical trials, we know about the drugs, we know about their side effects, we know their efficacy, but we’re looking to find ways to make those drugs work even better. And sometimes it may be adding radiation to one of the standard drugs we have. It may be adding a different type of targeted therapy to the medicines that we have. Sometimes it’s actually taking a research medicine that looks really, really good and very promising, and adding that extra research drug to a standard drug to see if we can’t do better.  

So that I think is really – my second point of advice is really consider participating in a clinical trial if it’s applicable.  

Katherine:

Mm-hmm. 

Dr. Pavlick:

And so what’s my third one? My third one is to really make sure that you can communicate with your team, that you trust your team, and you feel comfortable with your team. You know, there are many of us who have the expertise, but we all have very different manners in which we communicate and talk to patients and speak with family members. If you’re not comfortable with the person that you’re seeing, there is absolutely nothing wrong with going to get a second opinion to find someone who has the same level of expertise who may just fit your personality better.  

You know, everybody’s different. You have to find the health care team that fits for you. And I think that’s so important, because you’re trusting us with your life. And if you don’t feel comfortable, then we shouldn’t be the ones taking care of you.  

Katherine:

Yeah. This is all about self-advocacy.  

Dr. Pavlick:

That’s right. 

Katherine:

The more you know, the better care you’re going to get, and the more comfortable I think you’ll feel with your treatment.  

Dr. Pavlick:

Correct. 

Katherine:

Yeah.  

Dr. Pavlick:

And again, I think treatment – yes, people come to us for our recommendations, but it really is a team effort. My feeling is the more that patients understand why we’re doing what we’re doing, and are part of that decision-making process, the smoother treatment goes.  

Katherine:

Sure.  

Dr. Pavlick:

I really think education is important – of the patient and the family.  

I think being able to ask your physician questions without feeling that you’re threatening – it’s something you should be able to do. And I think it just provides with better care.  

Katherine:

Dr. Pavlik, how do you empower patients? 

Dr. Pavlick:

You know, when I talk to patients I really do try to number one: educate them. I am big believer in bad artwork, because I’m a bad artist. And so I really try to draw out schematics to help patients understand how they therapy that I’m proposing is going to work, so they understand the mechanism. Patients will also go home with printed handouts so that they can go back and read about what we talked about, because many times patients absorb maybe one-quarter of what’s been said in a consult. 

I encourage people to bring their family members or friends so that they can hear; two sets of ears is always better than one. And I fully support them; if they want to go get a second opinion, my answer is, “Absolutely.” I do not get offended. I feel that if – because a lot of times the patient’s going to say, “I don’t want a second opinion, but my family does.” You’ve got to live with your family. Go get the second opinion. 99 percent of the time, experts who do this for a living all have the same answers. And so it just is going to solidify for your family that the right thing is being done, and then you can also decide where do you feel most comfortable?   

If Dr. A and Dr. B tell you the same thing, what environment do you feel most comfortable in, so in the event that you had questions, or you didn’t feel well, where do you want to go? So, I strongly encourage that. And if somebody comes back and says, “You know, I really think that this place fits me better,” my answer is, “That’s absolutely fine; thank you for letting me know. If there’s anything I can do, please reach out.” Because, again, bottom line is I just want the best outcome for the patient.  

Why Should Breast Cancer Patients Feel Empowered to Speak Up About Their Care?

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Why Should Breast Cancer Patients Feel Empowered to Speak Up About Their Care? from Patient Empowerment Network on Vimeo. 

Why is it important for breast cancer patients to speak up and have a voice in their care? Breast cancer expert Dr. Adrienne Waks shares her perspective encouraging patients to ask questions and understand their care.

Dr. Adrienne Waks is the Associate Director of Clinical Research at Dana-Farber Cancer Institute. To learn more about Dr. Waks click, here.

See More from Thrive Breast Cancer

Related Resources:

What Role Do Breast Cancer Patients Play in Care and Treatment Decisions?

 What Are the Treatment Options for Early Stage Breast Cancer?

 How Is Metastatic Breast Cancer Treated?

Transcript:

Katherine:

Why should patients feel empowered to speak up and ask questions? 

Dr. Waks:

Well, I think for all sorts of different reasons. I think in breast cancer there are times when there’s a very clear right answer and right path forward and then a variety of other options that are clearly not recommended, not standard of care inadvisable, dangerous whatever, so there’s plenty of circumstances where that’s the case. But there’s also lots of circumstances, probably the majority of decisions that a patient has to make over the course of her or his breast cancer treatment plan and a variety of circumstances where there’s actually a number of different reasonable paths forward. 

Again, I think that’s the physicians or the nurse practitioner, the infusion nurse, whatever healthcare practitioner is helping to guide the patient through that particular decision, it’s our role to help lay out those options. Ultimately, we will always look to the patient for the most important final decision, so in order to make that decision, a patient needs to ask questions and help us understand where is she or he coming from, and what are their values and what are their competing interests, competing priorities outside of their breast cancer diagnosis, what is the most important outcome, a thing they want to maximize most, a thing they don’t really care about. 

We’ll never be able to bring that perspective to the table. We always look to the patient to do that. 

And so, they’re only get there by asking questions. Obviously, we’re going to try our best to anticipate all of the questions and lay out the options as comprehensively as we can, but there will always be things we can’t anticipate and things that are important to the patient that we just simply could never know about. So, we understand, appreciate, expect, and hope that a patient will ask questions and even more so that their accompanying family member or friend will do the same. 

What Role Do Breast Cancer Patients Play in Care and Treatment Decisions?

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What Role Do Breast Cancer Patients Play in Care and Treatment Decisions? from Patient Empowerment Network on Vimeo. 

What is shared decision-making? Breast cancer expert Dr. Adrienne Waks outlines the shared decision-making process and explains how patients can play an active role in their care.

Dr. Adrienne Waks is the Associate Director of Clinical Research at Dana-Farber Cancer Institute. To learn more about Dr. Waks click, here.

See More from Thrive Breast Cancer

Related Resources:

Why Should Breast Cancer Patients Feel Empowered to Speak Up About Their Care?

 What Are the Treatment Options for Early Stage Breast Cancer?

 How Is Metastatic Breast Cancer Treated?

Transcript:

Katherine:

What is shared decision-making, and how does it work? 

Dr. Waks:

So, to me basically what that means is that patients and providers are working together to decide what are the best steps to take in a patient’s treatment plan, essentially. I see my role as the provider being to lay out the menu of options and try to, of course, offer some guidance about which might be the best, which are less preferred, why that is. But then, to guide the discussion and then have the subsequent conversation with the patient about how do they take in that information, what feels like the right fit to them and then incorporate their preferences into the actual plan we make in terms of how to go forward. 

Katherine:

Well, what role do patients play in the decision-making? 

Dr. Waks:

I think the patients play the most important role ultimately. You know, what I always say to patients is I’m always going to try to offer my opinion. Again, lay out a variety of different options and then offer my opinion because I think I would imagine it could be frustrating if you’re a patient and you go to a doctor and they say like here are five options, and you can just select between them. So, it’s definitely I think the physician’s role to try to put some value judgments or comparisons of the different options, but ultimately, basically every single decision is the patient’s, and I can tell them that’s what I would have done or that’s not what I would have done, but I understand where you’re coming from. 

Again, it’s not like your physician isn’t there to guide you and give feedback and try to tell you what the best choice is. But actually ultimately in breast cancer management and in a free medical issue, it is ultimately the patient’s decision, so their voice is the most important one.