Tools for Becoming an Educated and Empowered Prostate Cancer Patient

/in , , , , , , , , , , /by

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

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

Download Resource Guide

See More From Shared Decision Making: Navigating Prostate Cancer Care

Related Resources:

Building a Relationship With Your Prostate Cancer Healthcare Team

You Have a Role in Your Prostate Cancer Care Decision

Transcript: 

Niki: 

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

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

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

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

[Patient experience depicted in this video is fictional.]

Anthony: 

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

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

Niki: 

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

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

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

Anthony: 

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

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

Niki: 

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

Anthony: 

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

Why Should Prostate Cancer Patients Be Empowered?

/in , , , , , , , , , , /by

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

Related Resources

Prostate Cancer Shared Decision-Making_ How Does It Work

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

An Expert’s Perspective on Emerging Prostate Cancer Research

An Expert’s Perspective on Emerging Prostate Cancer Research

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

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. 

PSA vs Gleason Score | What’s the Difference?

/in , , , , , , , , , , , , /by

PSA vs Gleason Score | What’s the Difference? from Patient Empowerment Network on Vimeo.

Prostate cancer expert, Dr. Rana McKay, explains the difference between PSA blood levels and a Gleason score and discusses how these measurements impact prostate cancer care.

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:

Managing the Side Effects of Advanced Prostate Cancer Treatment

Tools for Choosing the Right Prostate Cancer Treatment Approach

Transcript:

Katherine Banwell:

We received a patient question prior to the program. What is the difference between my PSA level and Gleason score?  

Dr. Rana McKay:

Yeah. So, very good question. So, Gleason score is something that is determined based off a pathologic assessment. So, it’s basically, you know, a biopsy is done from the prostate or the – the surgical specimen from the removal of the prostate is looked at under the microscope and a Gleason score is based off what something looks like underneath a microscope and ideally, a Gleason score is given really only for the prostate – for tissue derived from the prostate.  

So, if somebody has a bone biopsy for example or a lymph node biopsy, they’re not going to necessarily get a glycine score per se. It’s been – been validated from the prostate itself and ideally, also, an untreated prostate. So, if somebody has you know had radiation therapy and then has a biopsy, the Gleason score there is – there should not necessarily be a notation of what a Gleason score is. It’s really an untreated prostate. Now PSA is prostate-specific antigen, and it’s a protein that’s made from the prostate gland, and it’s found in circulation. PSA doesn’t hurt any – the actual, you know, molecule itself is – is innocuous. It doesn’t hurt anything. It’s just a marker of, sometimes can be a marker of burden of disease in prostate cancer, and I think sometimes we as clinicians do, you know, you know a disservice to some patients because I think we fixate – we can fixate a lot on PSA. 

But PSA is not the whole story, and it’s one factor of several factors that we take into account in determining whether someone needs treatment or whether a treatment is working or not working. 

What Is the PROMISE Study for Prostate Cancer Patients?

/in , , , , , , , , , , , , /by

What Is the PROMISE Study for Prostate Cancer Patients? from Patient Empowerment Network on Vimeo.

Prostate cancer patients may have access to participate in prostate cancer studies. Dr. Heather Cheng from Seattle Cancer Care Alliance shares information about the PROMISE Study that she’s involved with and what the study examined in prostate cancer genetics.

See More from Prostate Cancer TelemEDucation

Related Programs:

How Is Genetic Information Used for Prostate Cancer Treatment_

How Is Genetic Information Used for Prostate Cancer Treatment?

 Prostate Cancer Treatment Tools and Advancements

Prostate Cancer Treatment Tools and Advancements

 Why Is Specialized Care Important in Prostate Cancer?

Why Is Specialized Care Important in Prostate Cancer? 

Transcript:

Dr. Heather Cheng:

The PROMISE Study is a study that I’m conducting in partnership with my colleague, Dr. Paller at the Johns Hopkins and other collaborators throughout the United States, and it’s a study to help men with prostate cancer understand their genetics. We know that there are many people who have prostate cancer who have genetic risks of prostate cancer, maybe they inherited a risk factor, but they don’t know about it, and this is important to know because now we have targeted or precision treatment options on additional toolboxes, treatments exciting treatments for those patients, but they may not be aware of it if they don’t know about their genetics. And so one is, it’s increasing the knowledge, and then also it may have important implications for the relative, so sometimes those genetic factors are shared and that information can also be life-saving. So the study is really easy, actually, patients who are interested or people that are interested who had a diagnosis of prostate cancer, go to the website, which is www.prostate cancer promise.org, and then they can read about the study and they can enroll on the web or by the Internet, and then they are mailed a saliva test or kit, and then they spit into the kit and then mail it back, and then they get a medical-grade genetic testing report back that test 30 genes that are associated with cancer risk. 

So some of those are prostate cancer, but then men who have certain mutations that we’re particularly interested in will be invited for long-term more…more long-term follow-up in all patients who participate can get a newsletter where we sort of inform them about the newest, latest, greatest things and prostate cancer. And so I think it’s really exciting because it’s increasing the ability and access of patients to genetic testing, but then also leveraging our web-based information platforms, just like this one, is to advance education and make sure we’re getting all of that excitement and opportunities out to patients even if they live far away from some of the biggest cancer centers, we want to make sure all patients have access to that knowledge.

Prostate Cancer Genetic Testing and Family Testing Guidelines

/in , , , , , , , , , , , , /by

Prostate Cancer Genetic Testing and Family Testing Guidelines from Patient Empowerment Network on Vimeo.

What do patients need to know about prostate cancer genetic testing? Dr. Heather Cheng from Seattle Cancer Care Alliance shares information about genetic testing, testing guidelines for those with a family history of prostate cancer, genetic counseling, and when it’s important to share family medical history.

See More from Prostate Cancer TelemEDucation

Related Programs:

Prostate Cancer Genetic Testing and Family Testing Guidelines

How Is Genetic Information Used for Prostate Cancer Treatment?

 Understanding New Targeted Therapies for Prostate Cancer

Understanding New Targeted Therapies for Prostate Cancer 

Are Mobile-Optimized Tools Making an Impact in Prostate Cancer?

Transcript:

Sherea Cary:

Is it easy to get the genetic testing, and if you have a first-degree relative, if you had a father who had prostate cancer and your son, is it easy for them to get the testing, and do you recommend it?

Dr. Heather Cheng:

Yeah, I think that’s a question that I think it’s becoming easier, it is something that I think it’s important for people to understand what it can and cannot do, so if there is a strong family history of prostate cancer, for example, it is best to start with the person in the family who has cancer, if we were talking about genetic testing, if that’s possible. If it’s possible, testing that person, because if they have that marker, then we’re more confident that that’s important for the family, it’s sort of…if that person doesn’t have it, then it’s much less likely that the children or the relatives who don’t have cancer will have it. So I guess thinking about the person who has cancer and then also sharing with the family, sharing what the doctor is a family history of cancer.

But I guess one of the things that’s really interesting and I would guess, I would say challenging but exciting in the field, is that historically, we’ve had a reliance, or we’ve needed to do genetic testing through genetic counselors. And genetic counselors are professionally trained individuals who can answer questions about genetics, and sometimes patients or persons, people have a lot of questions, maybe they are not sure they want to do it, and so if they’re not sure that it’s important to get them the information so they can understand what the testing is about and then feel good about proceeding with testing. I think there’s a lot of value to knowing about somebody’s genetics, but there can be questions and concerns, and so we want to make sure every person has the chance to do that.

We have studies, and more and more, I think there is availability of genetic testing and people can do genetic testing through blood test or a saliva test, and the other thing that’s really important to understand is that there’s kind of two major classes of genetic testing, I would say, one is what I would call recreational for fun, and those are tests like 23andMe or Ancestry.com, where you’re trying to maybe you pay some amount of money and you want to know where in the world your relatives are from. That’s more for fun, it’s not really useful for medical purposes, if you’re thinking about genetic testing for how to manage your medical care, you might want to talk to your doctor about it, but there’s a different set of tests that are really medical-grade, and they shouldn’t be confused with each other because they have really different purposes. One is more recreational and one is, we need the quality to be much higher because we’re gonna use this information for your care, and we want to make sure is the sort of standards are a lot higher, and so for example, I have a study with my colleague, Dr. Paller at Johns Hopkins, where we were offering then we’ve met any type of prostate cancer, so any history of prostate cancer, and they don’t necessarily have to have a family history of cancer, but we would ask them about that, and if they’re interested in participating, then they get mailed, they can enroll at prostate cancer promise dot org, and then they are mailed us a Levite, and that test is a medical grade test that’s not one of the recreational tests, that one is, it is covered free of cost, so there’s no cost to the patient, and then there’s also an email and informational hotline if there’s more questions and somebody wants to, you know, learn more about it before they proceed. So that’s one way that we’re trying to expand the access of genetic testing to patients and their families.

Sherea Cary:

I have one more question. When we talk about family history, does that mean we have to have one or two generations or just one generation, how many generations qualify for a family history?

Dr. Heather Cheng:

Yeah, that’s a great question. I think a couple of important points. So, family history is really the available information that you have, and sometimes people have a lot of information about multiple generations, and sometimes they don’t, and I think whatever you have is important, and if you don’t have all of it…that’s okay, but the important things to think about are, do you know about any family history of prostate cancer, but…that should be on both sides of the family. Sometimes people will think, “Oh, if it’s only on my father’s side, should I only think about it on my father’s side because it’s prostate cancer” which is a male cancer. But actually, it’s really important to ask about both sides, because maybe your mom’s dad had prostate cancer, or maybe your mom’s brother had prostate cancer, that’s also really important to know about, and then some of the other cancers are also really important, such as is their breast cancer and the family, and is it on the mom’s side or the dad’s side? And if it’s known, kinda how old was the person when they had that cancer, where they’re in their 50s or where are they’re in their 80s.

So those kinds of things, if it’s known and many people don’t know all of these details, then that’s okay, but if you do know it, then it’s important to share it. And I think sometimes there are relatives who are a little less comfortable talking about their health. But if you think if there’s a culture of saying, “This information might help my kids or my grandkids to share that with their doctors and then think about their own cancer screening more proactively,” then maybe that will be an incentive to sort of open up those dialogues, I know sometimes it’s hard to talk about cancer diagnosis, but it can be life-saving.

How Is Genetic Information Used for Prostate Cancer Treatment?

/in , , , , , , , , , , , , /by

How Is Genetic Information Used for Prostate Cancer Treatment? from Patient Empowerment Network on Vimeo.

Prostate cancer can impact patients differently depending on their risk group. Dr. Heather Cheng from Seattle Cancer Care Alliance explains how genetic information is used in prostate cancer treatment and other factors that can impact patient outcomes.

See More from Prostate Cancer TelemEDucation

Related Programs:

Prostate Cancer Genetic Testing and Family Testing Guidelines

Prostate Cancer Genetic Testing and Family Testing Guidelines 

 Telemonitoring and How It Benefits Prostate Cancer Patients

Telemonitoring and How It Benefits Prostate Cancer Patients 

 What Is the PROMISE Study for Prostate Cancer Patients?

What Is the PROMISE Study for Prostate Cancer Patients?

Transcript:

Sherea Cary:

Can you speak to how you and your colleagues are using genetic information to help with the treatment and understanding prostate cancer for different risk groups?

Dr. Heather Cheng:

Yeah, thank you that…that’s something that I think is following the lines of this idea of precision oncology or tailoring. Tailoring people’s management, either if they don’t have cancer and we’re worried about the risk of cancer, we can use genetic markers that we can test from saliva or blood to help understand that person’s risk of prostate cancer better, and in some cases, there are some families where there are markers or genes that run in the families that might increase the risk of developing prostate cancer, but also sometimes the same genes are increased the risk of breast cancer and ovarian cancer, and if they’re present, then it’s important to think about knowing that, getting that information, because then there are strategies that we can use to find it earlier and to treat it more aggressively and hopefully have much better outcomes in a much better likelihood of curing prostate cancer. But then also the other related cancer, so for men, this is really important because we haven’t previously been thinking about it in the same way, but that’s one example of how genetics can affect the thinking about the risk of prostate cancer. We know that Black men have a higher risk of prostate cancer to begin with, and we were beginning to understand why that might be.

Some of it may be genetic, some of it may be access to healthcare and knowledge, which we’re trying to help disseminate the knowledge here, and then sometimes it’s care delivery, so we want to focus on all of those things, but genetics are part of that.

What Are PSA and PSMA?

/in , , , , , , , , , , , , /by

What Are PSA and PSMA? from Patient Empowerment Network on Vimeo.

Prostate cancer experts use PSA and PSMA tests in different ways in diagnosis and treatment.  Dr. Heather Cheng from Seattle Cancer Care Alliance explains what PSA and PSMA measure and how the tests are used in prostate cancer care.

See More from Prostate Cancer TelemEDucation

Related Programs:

What Is the PROMISE Study for Prostate Cancer Patients?

What Is the PROMISE Study for Prostate Cancer Patients?

 Prostate Cancer Treatment Tools and Advancements

Prostate Cancer Treatment Tools and Advancements

Are Mobile-Optimized Tools Making an Impact in Prostate Cancer?

Transcript:

Sherea Cary:

What’s the prostate-specific antigen?

Dr. Heather Cheng:

Yes, that’s a great question. So the prostate-specific antigen is basically a protein marker or something that is detected in the blood that is made by the prostate and can help us figure out if it’s too high, whether somebody might have prostate cancer actually. It can be useful to figure out who has prostate cancer, who doesn’t, but it’s more useful in helping when somebody has a prostate cancer diagnosis to help monitor what is going on with the disease, is the treatment working, is the treatment not working, and in that situation, it’s especially useful, it can be a little tricky, and the distinguishing between who has cancer, who doesn’t it kind of gets a B-, it’s the better than what we have, but it sort of is a little tricky.

Sherea Cary:

Okay. So…what is prostate-specific membrane antigen?

Dr. Heather Cheng:

Yeah, so prostate-specific membrane antigen is similar to prostate-specific antigen, except for that it sits on the outside of cells that are prostate-related, or prostate cancer cells, or prostate, sometimes normal prostate cells, but it’s really useful now when people have had treatment for their prostate such as surgery to remove their prostate, but maybe their PSA or that prostate-specific member and antigen test and their blood is starting to go up, and that makes us concern that there is more cancer there, and so then we can do scans to see where is the…where in the body are the cells that express prostate-specific membrane antigen. So, kind of think about it as like a tag on the outside of the cell that says, “Hey, I’m kind of prostate-related, and so we can look in the body for cells that have that marker, the other reason it’s important is because we now have treatments that are targeted, they’re kind of smart bonds where they deliver radiation to cells that have that marker…that prostate-specific membrane antigen. So, it’s exciting for two reasons, one is to find out where the cancer might be, and the second is, if we know where it is, can we deliver treatment just to those areas and not to the healthy cells.

Could Genetic Mutations Impact Your Prostate Cancer Treatment Options?

/in , , , , , , , , , , , , , , /by

Could Genetic Mutations Impact Your Prostate Cancer Treatment Options? from Patient Empowerment Network on Vimeo.

Can prostate cancer treatment options be impacted by a patient’s genetic mutations? Expert Dr. Tomasz Beer defines precision oncology and explains how DNA repair and mutations can affect treatment options.

Dr. Tomasz Beer is Deputy Director at OHSU Knight Cancer Institute. Learn more here: https://www.ohsu.edu/people/tomasz-m-beer-md-facp.

See More From INSIST! Prostate Cancer

Related Resources

Why Should You Ask Your Doctor About Prostate Cancer Genetic Testing?

Why Should You Ask Your Doctor About Prostate Cancer Genetic Testing?

The Link Between Prostate Cancer and Genetic Mutations

The Link Between Prostate Cancer and Genetic Mutations

 Prostate Cancer Treatment Decisions: How Do Genetic Test Results Impact Your Options?

Prostate Cancer Treatment Decisions: How Do Genetic Test Results Impact Your Options?

Transcript:

Katherine:

Are there genetic mutations that affect the choices for prostate cancer treatment?

Dr. Beer:                     

Increasingly so. So, this is an exciting era in terms of those kinds of approaches. You may have heard the term “precision oncology” or “personalized oncology.” The ideas behind precision oncology is that each individual patient’s tumor is analyzed in detail for their biologic differences, and for the most part, those are mutations; although, it can be other. And that treatments may be available that work particularly well for patients whose cancers have a particular mutation. And so, today, there are a couple of categories of treatments that are FDA-approved and that can be used in prostate cancer treatment if the right mutations are present.

And one of those is a class of drugs called PARP inhibitors and those are indicated in patients with advanced prostate cancer who received some of our most commonly used routine treatments and who harbor mutations in a series of genes that are responsible for DNA repair. BRCA-2 or BRCA-2 is the most common of those, and that may be a gene that is familiar to people because it’s also a significant gene in terms of conferring risk of breast and ovarian cancer.

So, that’s the same gene we’ve been thinking about for breast cancer is also important in prostate cancer. There are other DNA repair genes as well that may sensitize a cancer to PARP inhibitors. Another area is something called microsatellite instability, which is a measure of how mutation prone a cancer is.

And cancers that acquire a large number of mutations are more likely to respond to immune therapies. And one might ask why that is, and it’s an interesting question. We believe it’s because, as a large number of mutations accumulate, we see more and more abnormal proteins that are made from those mutated genes, and those abnormal proteins, some of them are different enough from our native proteins, to cause the immune system to recognize them. And when we have an immune system that actually recognizes our cancer as foreign, we’re often able to amplify that immune signal and turn it into a potent anticancer weapon.

So, those are the two categories of mutations that we use in the clinic today, DNA repair and this microsatellite instability, but others are coming as we develop more targeted, specific agents designed for people with specific cancers who have specific mutations.

Katherine:                  

Dr. Beer, why should prostate cancer patients ask their doctor about genetic testing?

Dr. Beer:                     

Well, there are a couple main reasons for that. One is, of course, to examine their cancer and determine if they’re eligible for one of these targeted therapies. If we find those mutations, those patients have an extra treatment available to them. They can still be treated with all the hormonal therapies, chemotherapy, radiation-based treatments, but in addition to those, they have an additional targeted option. And so, that’s a real advantage for those patients who harbor those mutations. So, that’s really reason number one reason, number two is to potentially protect their families.

So, if a germline mutation is identified, that mutation can be passed on to kids. It may also be in other family members, brothers and sisters, and potentially be passed onto their kids. Important to understand that these mutations, as I alluded to earlier, are not just prostate cancer mutations. They can be passed through the mother. They can predispose folks to bre  ast cancer. So, a germline mutation may be something the family would benefit from knowing about. It’s a complicated area, learning about inherited cancer mutation in the family, could be very stressful and frightening.

So, I wouldn’t say this lightly. I think it needs to be done within the context of genetic counseling and good advice about how to communicate things like that and what to do with them. We want to be able to help people reduce their risk of cancer without taking an emotional toll on multiple members of the family.

So, it’s important, and it’s also important to do it thoughtfully and carefully.  

 

                  

 

What Do Prostate Cancer Patients Need to Know About Genetic Testing?

/in , , , , , , , , , , , , , , /by

What Do Prostate Cancer Patients Need to Know About Genetic Testing? from Patient Empowerment Network on Vimeo.

 What should men with prostate cancer know about genetic testing? Expert Dr. Tomasz Beer explains inherited mutations versus cancer-specific mutations and discusses the roles they can play in the development of prostate cancer.

Dr. Tomasz Beer is Deputy Director at OHSU Knight Cancer Institute. Learn more here: https://www.ohsu.edu/people/tomasz-m-beer-md-facp.

See More From INSIST! Prostate Cancer

Related Resources

Why Should You Ask Your Doctor About Prostate Cancer Genetic Testing?

Why Should You Ask Your Doctor About Prostate Cancer Genetic Testing?

The Link Between Prostate Cancer and Genetic Mutations

The Link Between Prostate Cancer and Genetic Mutations

 Prostate Cancer Treatment Decisions: How Do Genetic Test Results Impact Your Options?

Prostate Cancer Treatment Decisions: How Do Genetic Test Results Impact Your Options?

Transcript:

Katherine:

Excellent. Let’s talk a bit about genetic testing and the role it plays in prostate cancer. I’d like to start by defining a few terms that are often confusing for patients. First of all, what is a somatic mutation?

Dr. Beer:                     

Well, so let’s first start with what is a mutation. So, we all have DNA that is the code of life in every cell in our body in the nucleus of the cell, and that is where all of the encoding for all the genes that then identify the proteins that make up our cells in our body exist. A mutation is a change in the sequence of that gene of that DNA, a missing letter, or a letter that’s been replaced by another letter, that can lead to a faulty protein being made. Sometimes, a mutation can cause a protein to be activated inappropriately.

Otherwise, we can see situations where the protein is silenced and inactive when it’s needed. So, those are mutations. Now, somatic mutations occur in a cancer. The person does not carry those mutations in their genome. They’re not passed along to their children or inherited from their parents. They happen in the cancer itself, and that’s the nature of cancer. Many cancers have a propensity to accumulate mutations, and so, a somatic mutation represents a cancer-specific mutation.

Katherine:                  

What then is the difference between somatic and a germline mutation?

Dr. Beer:                     

Yeah. So, germline is an inherited mutation. That is a mutation that is in the genetic code that that individual is born with, almost always inherited from their parents.

And I say almost always because in rare circumstances, a new mutation emerges in the fetus and becomes a germline mutation, but almost always this is a mutation that’s inherited.

And an important thing to understand about those is that because it’s in the germline, in the parent DNA, that mutation is present in every cell in the body of that human being, including the eggs and sperm, and that’s how it’s then transmitted to the next generation. Those germline mutations, they predispose people to cancer, can turn out to be deleterious and can lead to the development of cancer, typically when an additional mutation develops, and the two together team up to begin the process of cancer development.

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

/in , , , , , , , , , , , , /by

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

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

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

Related Resources:

Transcript:

Sherea Cary: 

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

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

Dr. Nyame: 

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

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

/in , , , , , , , , , , , , /by

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

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

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

Related Resources:

How Has the Onset of Prostate Cancer Evolved?

Transcript:

Sherea Cary: 

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

Dr. Nyame: 

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

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

How Effective Is Early Screening in Prostate Cancer?

/in , , , , , , , , , , , , /by

How Effective Is Early Screening in Prostate Cancer? from Patient Empowerment Network on Vimeo.

Can prostate cancer early screening be effective? Watch as expert Dr. Yaw Nyame from the University of Washington shares information about those who are at higher risk of prostate cancer and recommended ages to start screening in these higher-risk groups for proactive care. 

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

Related Resources:

Ask the Prostate Cancer Expert: How Is Prostate Cancer Diagnosis and Treatment Evolving?

Transcript:

Sherea Cary: 

What screening test or risk-reducing care would you suggest for men who have a family history of prostate cancer, and at what age should screening begin for specific populations? 

Dr. Nyame: 

Unfortunately, there is no data, rigorous data to help answer this question, but we know that men that have a high risk of developing prostate cancer benefit from earlier testing with PSA. We know this from a variety of studies, including some modeling studies, which we have done here at the Fred Hutch Cancer Center at the University of Washington. When I talk about high-risk groups, it really falls into two categories, men who have a strong family history and a strong family history means a first-degree relative, father, brother, grandfather that has prostate cancer. 

But when we look at the genetics of prostate cancer it’s not just about prostate cancer itself, what we have found is that things that lead to family histories of breast cancer, ovarian cancer, colon cancer also increase your risk of prostate cancer, for instance, the BRCA gene, which is a breast cancer gene is associated with a marked increased risk of prostate cancer. So, knowing your family history matters and knowing it beyond prostate cancer is important. The other high-risk group as men of African descent or ancestry, we know our Black men have a much higher risk of developing prostate cancer in their lifetime, it’s about a one in six or one in seven risk compared to one in nine in the general population. So, the recommendation I make for these two groups is to consider screening earlier and to do it more frequently. On average, PSA screening happens for men between the ages of 55 and 70 or 74, and it’s usually every two years, if you look at the population level data, I would suggest that you consider screening at age 45 or 40 and doing it every year, however, you’ve got to turn the screening off at some point. So, if your PSA stays low and is non-concerning into your early 70s, then I think you can be reassured that your risk of having a fatal or aggressive cancer is low, and you could safely stop screening. 

Sherea Cary: 

So for someone who has a first-degree relative such as a father who had prostate cancer and maybe even an aggressive form of prostate cancer, it will be important for them to get screened at 40 to start at least having a baseline number to be able to watch it?  

Dr. Nyame:

Absolutely. The baseline number is really a topic of discussion in the urologic community because we know that if you get a PSA at age 40 and it’s above one or above the median for your age group, that you’re at a lifetime risk of having what we call significant cancer, so that’s a cancer that might have the potential to be fatal in your lifetime is higher. And so theoretically, you could get that one-time PSA at 40 and use that as a basis for how intense your screening practice would be. I’ve talked about PSA testing, but screening also involves the digital rectal exam, and it’s important that men understand that both those things together is what leads to a thorough and good clinical evaluation, when it comes to prostate cancer risk.

How Has the Onset of Prostate Cancer Evolved?

/in , , , , , , , , , , , , /by

How Has the Onset of Prostate Cancer Evolved? from Patient Empowerment Network on Vimeo.

Prostate cancer diagnostic testing has evolved over time. Watch as expert Dr. Yaw Nyame from the University of Washington shares insight about how prostate cancer diagnostic tests – and, in turn, treatment versus active monitoring are used for patient care.

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

Related Resources:

Ask the Prostate Cancer Expert: How Is Prostate Cancer Diagnosis and Treatment Evolving?

Transcript:

Sherea Cary: 

Dr. Nyame, how has prostate cancer evolved over the last decade regarding the onset of the disease, the population in which it impacts the care and the treatment? 

Dr. Nyame: 

You know, prostate cancer is the most common cancer in men that is in a solid organ. It affects about one in nine men over their lifetime, and probably the biggest advance or change we’ve seen in the disease occurred in the late ‘80s with the introduction of the PSA test. What that allows us to do is detect cancers very early in their natural life history, if you will, and that gives us the opportunity really to provide treatment when there’s…with an opportunity for cure. The downside to that is not all prostate cancers are the same, we know that some prostate cancers are diseases that men will die with and not from…meaning that some of these cancers that we detect don’t need any treatment or intervention. This means that a lot of research that has occurred in the last decade or two has been focused on helping us determine which cancers deserve treatment and which ones we can watch safely and so some of the biggest advances have been diagnostic tests such as radiology imaging, so we’ve seen things like MRI really come into the mainstay of prostate cancer diagnosis and treatment up front. We have very exciting nuclear medicine scans. 

So, you might hear the term PSM-A as a new test that’s really going to disrupt and change the way the prostate cancer diagnosis and treatment is made. We also have genetic testing that we can do on blood samples, urine samples, and tissue, that might give us some very exciting information about one’s risk of dying from prostate cancer, which ultimately is what we want to know when we’re offering treatment to someone. 

Why Should You Ask Your Doctor About Prostate Cancer Genetic Testing?

/in , , , , , , , , , , , , , , /by

Why Should You Ask Your Doctor About Prostate Cancer Genetic Testing? from Patient Empowerment Network on Vimeo.

Why is it genetic testing important when it comes to prostate cancer care? Learn how test results could reveal more about YOUR prostate cancer and may indicate that one treatment may be more effective than another.

See More From INSIST! Prostate Cancer

Related Resources

How Does Genetic Testing Impact Prostate Cancer Care?

Treatment Options for Advanced Prostate Cancer

What Is a Prostate Cancer Genetic Mutation?

Transcript:

Why should you ask your doctor about genetic testing?

The test results may predict how your prostate cancer will behave and could indicate that one type of treatment may be more effective than another type.

Genetic testing identifies specific gene mutations, proteins, chromosomal abnormalities, and/or other molecular changes that are unique to YOU and YOUR prostate cancer.

There are two main types of genetic tests used in prostate cancer:

  • Germline or hereditary genetic testing, which is conducted via blood or saliva and identifies inherited gene mutations in the body. Germline mutations are present from birth and can be shared among family members and passed on to subsequent generations. Results can identify whether you could be at risk for another type of cancer or if your family members may need genetic counseling and testing to guide their own cancer risk.
  • The second is somatic or tumor genetic testing, which is performed through testing tumor tissue or by testing cancer cells/DNA extracted from blood to identify gene mutations that are unique to the cancer itself. It is also commonly referred to as genomic testing, biomarker testing, or molecular profiling. Somatic mutations are NOT inherited and are NOT passed on to subsequent generations or shared among family members.
  • Depending on your history, your doctor may order one–or both–of these types of tests.

So why do the test results matter?

Both germline and somatic mutation testing can identify the presence of certain genetic mutations that may help to guide your treatment plan, and germline testing specifically can inform cancer risk for you and, potentially, family members.

  • In some cases, mutations can indicate that a newer approach, such as targeted therapy or immunotherapy, may work better for you.
  • Results of these tests may also help you to find a clinical trial that may be appropriate for your particular cancer.
  • And, genetic testing results could also show that your cancer has a mutation or marker that may prevent a certain therapy from being effective, sparing you from getting a treatment that won’t work well for you.

How can make sure you have had essential biomarker testing?

  • First, always speak up and ask questions. Remember, you have a voice in YOUR prostate cancer care.
  • Ask your doctor if you have had or will receive genetic testing, including germline and somatic testing, and how the results may impact your care and treatment plan.
  • Ask whether your family members should meet with a genetic counselor or undergo testing to help gauge their risk of developing prostate cancer.
  • And, finally, bring a friend or a loved one to your appointments to help you process and recall information.

To learn more about your prostate cancer and to access tools for self-advocacy, visit powerfulpatients.org/prostatecancer. 

Understanding Prostate Cancer Staging and Progression

/in , , , , , , , , , , , , /by

Understanding Prostate Cancer Staging and Progression from Patient Empowerment Network on Vimeo.

What are the stages of prostate cancer? Expert Dr. Maha Hussain provides an overview of prostate cancer stages and progression – and explains scans that detect disease to aid in optimal care.

Dr. Maha Hussain is the Deputy Director of the Robert H. Lurie Comprehensive Cancer Center of Northwestern University. Learn more about this expert here.

See More From INSIST! Prostate Cancer

Related Resources

How Does Genetic Testing Impact Prostate Cancer Care?

Treatment Options for Advanced Prostate Cancer

Expert Perspective on the Future of Prostate Cancer Treatment and Research

Transcript:

Katherine:

Dr. Hussain, we’re going to spend most of this conversation talking about advanced prostate cancer. But before we move on, would you give us a brief overview of the stages of prostate cancer?

Dr. Hussain:

Absolutely. So, with any cancer, we count sort of like four stages. But I would say in prostate cancer the biggest thing is when the cancer is newly diagnosed, which could be confined to the prostate or locally advanced, meaning the cancer has gotten outside the capsule of the prostate but still within that pelvic region.

There is the group of patients who have pelvic lymph nodes at time of diagnosis. And of course, that is the patients who have systemic disease, which would be technically stage four. Now, the systemic disease implies any abnormality that is found on scans that is beyond the public region. So, that could be lymph nodes in the back of the belly. That could be thoracic lymph nodes. That could be neck nodes. That could be lung lesions, of course, or bone, or liver.

Now, the most common area where the cancer goes to is really – when we talk about metastatic disease – is the bone. And then lymph is another area where the cancer goes to. Prostate cancer that is confined to the prostate is curable in the vast majority of patients. There is a category of men who undergo surgery or radiation, and then their PSA begins to go up afterwards.

And this is what we call biochemical relapse. And this is a situation where we know that, in all likelihood obviously, especially of the patients who have had their prostate out, that the cancer has spread. With the current imagine, a good chunk of times, we do not find anything because we’re able to pick up PSA that goes from undetectable to 0.2 to 0.3, but there’s not enough cancer to show up on the scans. We’re hoping, obviously, the better scans, the PET Axumin scan, the PSMA scans are going to help us to identify sites of metastases.

But this is a group of men where if there is no cancer visible and the only thing we’re dealing with is PSA that’s going up, if they’ve had surgery, then

there’s room for what we call salvage therapy with radiation and hormonal treatment. The case is a bit different if there’s only just the prostate – if radiation was given previously. And of course, we talked about metastatic disease.

Katherine:

Once someone has been diagnosed, what tests are used to help understand the aggressiveness of their disease and their overall prognosis?

Dr. Hussain:

Well, I think there is different basic things, as in, what was the extent of the cancer? How did it look under the microscope? And what is the PSA levels? So, these are the general things. There are different sort of genomic panels that the urologist will use to kind of decipher and other things to kind of help with figuring out aggressiveness and things like that. What I would say is this, is a patient who is diagnosed and has a cancer, and at a minimum has what we consider a Gleason 7 prostate cancer – so, that’s the scoring system that is done with the original Gleason score, or the new patterns where it’s talking about intermediate risk to high risk – to me, this is a cancer that needs to be treated.

And again, that’s all to do with if a person has other comorbidities, they have some other terminal condition that’s a separate story. But talking generically, that would be when we would recommend. And these are the patients that are generally not seen by the medical oncologist. They’re seen by the urologist, and then they can refer them to radiation oncology also for consultation.