Tag Archive for: patient empowerment

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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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

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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

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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. 

Tools for Partnering in Your Prostate Cancer Care

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Tools for Partnering in Your Prostate Cancer Care from Patient Empowerment Network on Vimeo.

Why is it important to partner with your doctor in your prostate cancer care? Dr. Rana McKay shares advice to help patients speak up and play an active role in their care plan.

Dr. Rana McKay is a medical oncologist at UC San Diego Health and an associate professor in the Department of Medicine at the UC San Diego School of Medicine. Learn more about Dr. McKay, here.
 
 

Related Resources:

What Is Personalized Prostate Cancer Medicine?

Tools for Choosing the Right Prostate Cancer Treatment Approach

Transcript:

Katherine Banwell:

Why should patients feel confident using their voice in partnering in their care? Do you have any advice? 

Dr. Rana McKay:

It’s absolutely important for patients to share their perspective and for there to be shared decision-making at every single juncture along the way. Even around decisions to not treat. So, you know, I think it’s a lot of – there’s a lot of grays in prostate cancer and a lot of art in deciding what treatment to do and at what specific time and for any given patient given the values that that patient brings to the table, they may come back with a different decision compared to another patient. So, without the patient you know, voicing what their values are it’s impossible to make a treatment decision. 

So, it is so critically important to have that open communication with your clinician. 

Katherine Banwell:

So, in addition to that – in conjunction with that, should men diagnosed with advanced prostate cancer consider a second opinion or consulting with a specialist? 

Dr. Rana McKay:

I think it’s always a great idea to get a second opinion. You know, I think that, you know, it will only empower individuals when they seek sort of a second opinion to either confirm what their physician has already told them. And then they have reassurance that they’re on the right path or maybe provide some new novel insights that they can take into consideration and just think about how that could be applied to them. So, you know, I think that a second opinion is always really valuable.   

I will balance that by saying sometimes it can be detrimental if there’s lots of opinions, because I will say that coming to a consensus when there’s lots of different specialists that are involved, and everybody makes the soup a little bit differently – 

Katherine Banwell:

Yeah. 

Dr. Rana McKay:

Sometimes that I think that can actually hurt patients in being able to actually come to a decision because then they’re like, “I don’t know what decision to make. This person said do this. This person said do that. This person said do that.” And so that can sometimes be detrimental. But a second opinion, I do always encourage it. I do always value it. But I always want the patient to bring it back to me so I can share with them and discuss, “Okay. I understand. This is why x said X-Y-Z. This still aligns. This still doesn’t.” They need a quarterback like you know, it’s one thing to sort of get second opinions. But I think every man with prostate cancer should have a quarterback that’s driving their care and advocating for them.  

Katherine Banwell:

Yeah. How can patients find specialists near them? 

Dr. Rana McKay:

So, I will say that they are national comprehensive cancer institutes. They’re all across the country in rural areas and not. I think, you know, finding the closest NCI-designated comprehensive cancer center close to you is probably a good place to start and identifying who is seeing patients with genetic urinary malignancies or prostate cancer at that facility is a good place. I think the Prostate Cancer Foundation is an excellent advocacy group for patients with prostate cancer. They have a tremendous amount of resources to help connect patients with clinicians, and other resources in their journey with cancer.   

Why Should Follicular Lymphoma Patients Seek a Second Opinion?

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Why Should Follicular Lymphoma Patients Seek a Second Opinion? from Patient Empowerment Network on Vimeo.

Lymphoma expert Dr. Matthew Matasar encourages patients to take an active role in their care and explains why they should feel comfortable seeking a second opinion.

Dr. Matthew Matasar is a lymphoma expert at Memorial Sloan Kettering Cancer Center and Chief of Medical Oncology at Memorial Sloan Kettering Bergen. To learn more about Dr. Matasar, visit here.

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Transcript:

Katherine Banwell:

What is your advice to patients who may feel like they’re hurting feelings by seeking a specialist or a second opinion? Any advice for self-advocacy?  

Dr. Matasar:

I would say there is this. Any doctor who is taking care of you and doesn’t want you to have the best information and the best options is not a very good doctor. This is never about the doctor. It’s not about me. It’s about you. And if a doctor’s ego is getting in the way of a patient getting the best care, the best options, the most modern and up-to-date available information around their illness and around how best to take care of it, that doctor better check themselves.  

Similarly, the patient should understand that it’s about you. It’s not about me or your other doctors, or anything. It’s about you getting what you deserve, which is the clearest insight and the most appropriate treatment options available. And you should have no reservations in seeking that out, and honestly most oncologists are happy to have you get a second opinion, because they’ll feel more supported in your care. It’s stressful to be an oncologist sometimes too. And for you to get a second opinion from an expert and the expert says, “You know what? Yeah, your oncologist is spot-on.” 

That can be very validating and reassuring. And then, that expert oncologist is a resource to your local oncologist, and they can work together in your care. Everybody works better as a team. It’s just as true for oncologists as for anybody.  

Three Key Steps for Newly Diagnosed Follicular Lymphoma Patients

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Three Key Steps for Newly Diagnosed Follicular Lymphoma Patients from Patient Empowerment Network on Vimeo.

Once a patient has been diagnosed with follicular lymphoma, what’s next? Lymphoma expert Dr. Matthew Matasar shares his expert advice on key next steps for newly diagnosed patients.

Dr. Matthew Matasar is a lymphoma expert at Memorial Sloan Kettering Cancer Center and Chief of Medical Oncology at Memorial Sloan Kettering Bergen. To learn more about Dr. Matasar, visit here.

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Transcript:

Katherine Banwell:

What three key pieces of advice would you have for a patient who has just been diagnosed with follicular lymphoma?  

Dr. Matasar:

The first thing I would say is that everybody should have access to a second opinion pathology review.  

This is independent of what the doctors are giving you advice in taking care of the illness, but just making sure that the diagnosis itself is correct. We know that the diagnosis of lymphoma is a tricky one for pathologists, particularly if they’re not pathologists that are seeing lymphoma under the microscope every day of the week. And when you go for a second opinion pathology review by having the slides sent to a major academic center, there’s a possibility that the diagnosis will be changed or revised in a way that’s meaningful meaning that it would lead to different recommendations for how to take care of your illness.  

The second is that you’re entitled to a second opinion medical review as well and going to see an expert in lymphoma if your first opinion was with a community oncologist or somebody referred by your primary care doctor who may not have singular expertise in these illnesses, can be helpful. It can be reassuring if that doctor says, “You know what? I agree with your local oncologist, and I’m happy to collaborate with their care.” 

Or they may say, “You know, we have a different perspective. There’s newer data. There’s newer options. There’s clinical trials. There’s other resources to bring to bear,” and maybe your choices are broader than you may have originally believed.  

And the third is just to be that advocate for yourself, to take charge, and to participate in your care. Let your doctors know who you are, how you view things, how you like to receive your healthcare information. Are you a big picture or a detail person, and what are your priorities so that they can best match their recommendations to who you are as an individual, as a person, as a member of a family in the community so that they can give you the most personalized and appropriate recommendations possible.  

Katherine Banwell:

Why should patients consider seeing a follicular lymphoma specialist?  

Dr. Matasar:

I think that it’s increasingly important when you’re looking at a diagnosis of follicular lymphoma to consider seeking an expert second opinion from a lymphoma specialist. And this is because our understanding of this disease is changing very rapidly. The therapeutic armamentarium is changing very rapidly with new treatments becoming available every year. And sometimes a community oncologist who is required to be expert in many different diseases may not have access to the same body of information or the same insights that somebody who specializes in this disease may have at their fingertips.  

Why Should You Consider Seeing a DLBCL Specialist?

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Why Should You Consider Seeing a DLBCL Specialist? from Patient Empowerment Network on Vimeo.

Lymphoma expert Dr. Matthew Matasar explains the benefits of seeing a diffuse large B-cell lymphoma (DLBCL) specialist and encourages patients to be partners in their own care.

Dr. Matthew Matasar is a lymphoma expert at Memorial Sloan Kettering Cancer Center and Chief of Medical Oncology at Memorial Sloan Kettering Bergen. To learn more about Dr. Matasar, visit here.

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Transcript:

Katherine Banwell:

Why should DLBCL patients consider seeing a specialist? What are the benefits? 

Dr. Matasar:

The benefits of a specialist in the treatment of diffuse large B-cell lymphoma is that this field is changing rapidly. Treatments like this R-CHP-pola regimen, we understand that these data are very new reported only months ago but perhaps academic centers may have a greater sophistication or comfort with using these newer data to support the care of our patients.  

The second is that there are many important and highly relevant clinical trials that are ongoing as we continue to try to improve outcomes for patients with diffuse large B-cell lymphoma either receiving their first treatment or for those patients who, unfortunately, suffer relapse. Some of these treatments may only be available at academic centers of excellence and understanding that your options for treatment may be different under the care of an expert in this disease is an important thing to consider when trying weigh how best to approach receiving care.  

Expert Perspective | The Value of Empowering Patients

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Expert Perspective | The Value of Empowering Patients from Patient Empowerment Network on Vimeo.

Lung cancer specialist Dr. Tejas Patil, of University of Colorado Cancer Center, explains why it’s important for lung cancer patients to feel empowered and discusses the advice he shares with patients to encourage self-advocacy.

Dr. Tejas Patil is an academic thoracic oncologist at the University of Colorado Cancer Center focused on targeted therapies and novel biomarkers in lung cancer. Learn more about Dr. Patil, here.

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Transcript:

Katherine:

Dr. Patil, how do you empower patients? 

Dr. Patil:

Well, I think transparency is key. So, I tell patients what I know. I tell patients what I don’t know. I help patients ask the questions that they may want to ask, but not sure how to.  

And I think for patients it’s really important to know that ultimately my role as a provider is to be a coach and a guide. And patients really have autonomy over their bodies and their choices. Sometimes I disagree with what patients choose to do, sometimes I agree. But I will think that as long as patients are aware of the risks and benefits of any decision they’re making and do it with information, that that’s a way of empowering patients. 

Katherine:

Why is it so important for patients to be empowered? 

Dr. Patil:

I think an empowered patient is actually a patient that can make meaningful decisions, and not make emotional decisions. I think that cancer diagnoses inherently are scary.  

They come with a lot of existential concerns and patients oftentimes feel like they’re cornered. And when patients are empowered, they can feel those emotions, but also make decisions that are based more on science and some on the facts that actually affect their care. 

Katherine:

Yeah. The more information we have, the more in control we feel. 

Dr. Patil:

The more in control you are actually. 

Katherine:

Yeah. Yeah. Very true.  

What Do You Need To Know About Bladder Cancer? 

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What Do You Need To Know About Bladder Cancer?  from Patient Empowerment Network on Vimeo.

What should you or your loved ones know following a bladder cancer diagnosis? This animated video reviews the diagnosis and types of bladder cancer, current treatment options, and key advice for taking an active role in your care.

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Transcript:

What do you need to know if you or a loved one has been diagnosed with bladder cancer? 

Bladder cancer occurs when cells in the urinary bladder grow out of control. As more cancer cells develop, they can form a tumor. And, over time, may spread to other parts of the body.  

The most common type of bladder cancer is transitional cell carcinoma or T.C.C.. This may also be referred to as urothelial carcinoma. Other subtypes include: Squamous cell carcinoma, adenocarcinoma, small cell bladder cancer and, sarcomatoid carcinoma. 

How bladder cancer is treated depends on the stage. The stages of bladder cancer include: Stage 1, which indicates that the cancer is growing in the inner lining layer of the bladder only.  Stage 2 occurs when the cancer is growing into the inner or outer muscle layer of the bladder wall. Stage 3 means that the cancer has grown beyond the muscle layer and into fatty tissue that surrounds the bladder. And, Stage 4 indicates that the cancer is growing outside of the pelvic region and has spread to distant sites, such as the lung, liver, or bones. When cancer has spread to other organs in the body, it is considered metastatic cancer. 

When making a treatment choice, your doctor may also consider age, any comorbidities, potential side effects, and the results of biomarker testing, as well as that patient’s preference. 

So, what are the treatment options for bladder cancer? For early stage, or non-muscle-invasive, bladder cancer patients, doctors may use a form of immunotherapy instilled in the bladder called B.C.G. which stands for Bacillus Calmette-Guerin. B.C.G. is used to inhibit the cancer’s growth and prevent recurrence.  

If patients do not respond or recur after B.C.G., a radical cystectomy – a surgical procedure to remove the bladder, is offered.  In select patients, pembrolizumab, a form of immunotherapy, can be used as an alternative. 

For localized bladder cancer invading the muscle, treatment is typically chemotherapy, followed by surgery. Tri-modality treatment using chemotherapy along with radiation is an option for patients who are not candidates for surgery – or refuse surgery – and who meet criteria for bladder preservation.   

Surgery, including a urostomy where the bladder is removed and replaced with a stoma outside of their bodies, is a major procedure reserved for patients who are very fit with low comorbidities. 

Now that you understand a little more about your bladder cancer and treatment options, how can you take an active role in your care? 

First, continue to educate yourself about your condition. Ask your doctor for patient resources or visit powerfulpatients.org/bladdercancer for more information.  

Understand the goals of your treatment and ask whether a clinical trial might be right for you.  

You should also consider a second opinion or consult with a specialist following a diagnosis.  

Try to write down your questions before and during your appointments.  And bring a friend or loved one to your appointments to help you recall information and to keep track of important details.  

Finally, remember that you have a voice in your care. Don’t hesitate to ask questions and to share your concerns. You are your own best advocate. 

To learn more about bladder cancer and to access tools for self-advocacy, visit powerfulpatients.org/bladdercancer.  

Be Empowered in Your Care

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Be Empowered in Your Care  from Patient Empowerment Network on Vimeo.

When patients are empowered, they feel informed and confident when talking to their healthcare team about their care. Bladder cancer expert Dr. Fern Anari describes how she empowers her patients.

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.

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Transcript:

Katherine Banwell:

When patients are empowered, they feel informed and confident when talking to their healthcare team about their care. As an oncologist treating bladder cancer, how do you empower your patients?  

Dr. Anari:

There are great online references that will help. Often, doctors will tell their patients not to Google. But that’s not always the right thing. I just think you just have to provide them with the right resources. So, through our cancer center and through many cancer centers, there’s patient advocacy groups. There are support groups. So, those are great places to get information.  

There’s also something called the Bladder Cancer Advocacy Network, which has great information for both physicians and for patients and really helps guide people through their journey and give them a little bit more information that then helps guide questions when they do see their doctors.  

Expert Advice for CLL Self-Advocacy

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Expert Advice for CLL Self-Advocacy from Patient Empowerment Network on Vimeo.

Some CLL patients struggle to find the confidence to speak up in their care. Dr. Catherine Coombs encourages patients to discuss their treatment and lifestyle goals with their CLL teams and provides advice for being proactive in their care.

Dr. Catherine Coombs is an Assistant Professor of Medicine in the Division of Hematology at The UNC Lineberger Comprehensive Cancer Center. Learn more about Dr. Coombs here.

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Transcript:

Katherine:

Dr. Coombs, why should patients feel confident in speaking up and being a partner in their care? Do you have any advice for helping them find their voice? 

Dr. Coombs:

Great question. I think a patient is their own best advocate. We as their physicians always try to advocate for them, but we often don’t know what their wishes and desires are. I think through speaking to what’s important to you, that can help me know a little more about what path we should take. There’s not always one right path.  

I’ve talked about these two great treatment options we have. I had one patient who loved fishing and he just didn’t want to be in the infusion center. That’s the person that should go on the oral drug, where he doesn’t have to come to and from as often.  

If you tell us about your goals and your desires, that helps us also be your top advocate because then we have a little more background for what’s important to you. I think that’s my main thought. We’re here for you, but we need to know what you value the most. We don’t always know that.  

Katherine:

When should a patient consider a second opinion or a consultation with a specialist? 

Dr. Coombs:

I never discourage a second option. I’m a CLL specialist, but I’ve had patients ask for a second opinion. I’m always enthusiastic about it. If a patient feels that they need another set of eyes on their case, I’ve learned some things from some of my patients who have seen specialists in different areas of the country or locally. We have Duke down the street. Sometimes different providers just have different perspectives.   

Or, sometimes the patient just needs to hear something again if it doesn’t sound right to them. I’ve had patients for example who are one watchful waiting who really just had trouble believing. “I have leukemia, and you’re really telling me to do nothing.” But then they hear it from someone else and it just helps it sink in. I’d say the answer is anytime. Anytime you think you need another set of eyes on the case.  

But I would say especially for people in the community. I do think there’s a lot of value in seeing a CLL specialist once if it’s something that you’re interested in and your insurance pays. I think the community docs have one of the hardest jobs, and I don’t think I could do it. There are so many different cancers that they have to know about. I think, if anything, I have the easy job; I have one tiny slice of the pie that I know a ton about. Not to say they don’t do great jobs; I’m actually phenomenally impressed with most of the community.  

However, they have so much to know, often you can maybe get a little more of a unique view on CLL by seeing a CLL expert. If that’s in your interest but certainly not mandatory, especially if your goal is to stay away from doctors.