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Your prostate cancer diagnosis is just a starting point. Even though the path ahead may seem unclear or even insurmountable, armed with knowledge you can take control.

Let us help you become empowered to understand your diagnosis, to confidently ask questions, and to identify providers that are the best fit for you.

More resources for Prostate Cancer Newly Diagnosed from Patient Empowerment Network.

What You Need to Know Before Choosing a Cancer Treatment

What You Need to Know Before Choosing a Cancer Treatment from Patient Empowerment Network on Vimeo.

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What steps could help you and your doctor decide on the best treatment path for your specific cancer? This animated video explains how identification of unique features of a specific cancer through biomarker testing could impact prognosis, treatment decisions and enable patients to get the best, most personalized cancer care.


If you are viewing this from outside of the US, please be aware that availability of personalized care and therapy may differ in each country. Please consult with your local healthcare provider for more information.


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TRANSCRIPT:

Dr. Jones:

Hi! I’m Dr. Jones and I’m an oncologist and researcher. I specialize in the care and treatment of patients with cancer. 

Today we’re going to talk about the steps to accessing personalized care and the best therapy for YOUR specific cancer. And that begins with something called biomarker testing.

Before we start, I want to remind you that this video is intended to help educate cancer patients and their loved ones and shouldn’t be a replacement for advice from your doctor.

Let’s start with the basics–just like no two fingerprints are exactly alike, no two patients’ cancers are exactly the same. For instance, let’s meet Louis and another patient of mine, Ben. They both have the same type of cancer and were diagnosed around the same time–but when looked at up close, their cancers look very different.  And, therefore, should be treated differently.

We can look more closely at the cancer type using biomarker testing, which checks for specific gene mutations, proteins, chromosomal abnormalities and/or other molecular changes that are unique to an individual’s disease.

Sometimes called molecular testing or genomic testing, biomarker testing can be administered in a number of ways, such as via a blood test or biopsy. The way testing is administered will depend on YOUR specific situation.

The results could help your healthcare team understand how your cancer may behave and to help plan treatment. And, it may indicate whether targeted therapy might be right for you. When deciding whether biomarker testing is necessary, your doctor will also take into consideration the stage of your cancer at diagnosis.

Louis:

Right! My biomarker testing results showed that I had a specific gene mutation and that my cancer may respond well to targeted therapy.

Dr. Jones, Can you explain how targeted therapy is different than chemo?

Dr. Jones:

Great question! Over the past several years, research has advanced quickly in developing targeted therapies, which has led to more effective options and better outcomes for patients.

Chemotherapy is still an important tool for cancer treatment, and it works by affecting a cancer cell’s ability to divide and grow. And, since cancer cells typically grow faster than normal cells, chemotherapy is more likely to kill cancer cells.

Targeted therapy, on the other hand, works by blocking specific mutations and preventing cancer cells from growing and dividing.

These newer therapies are currently being used to treat many blood cancers as well as solid tumor cancers.  As you consider treatments, it’s important to have all of the information about your diagnosis, including biomarker testing results, so that you can discuss your treatment options and goals WITH your healthcare team.

Louis:

Exactly–Dr. Jones made me feel that I had a voice in my treatment decision. We discussed things like potential side effects, what the course of treatment looks like and how it may affect my lifestyle.

When meeting with your healthcare team, insist that all of your questions are answered. Remember, this is YOUR life and it’s important that you feel comfortable and included when making care decisions. 

Dr. Jones:

And, if you don’t feel your voice is being heard, it may be time to consider a second—or third—opinion from a doctor who specializes in the type of cancer you have. 

So how can you use this information to access personalized treatment?

First, remember, no two cancers are the same. What might be right for someone else’s cancer may not work for you.

Next! Be sure to ask if biomarker testing is appropriate for your diagnosis. Then, discuss all test results with your provider before making a treatment decision. And ask whether testing will need to be repeated over time to identify additional biomarkers.

Your treatment choice should be a shared decision with your healthcare team. Discuss what your options and treatment goals are with your doctor.

And, last, but not least, it’s important to inquire about whether a targeted therapy, or a clinical trial, might be appropriate for you. Clinical trials may provide access to promising new treatments.

Louis:

All great points, Dr. Jones! We hope you can put this information to work for you. Visit powerfulpatients.org to learn more tips for advocating for yourself.

Dr. Jones:

Thanks for joining us today. 


This program is supported by Blueprint Medicines, and through generous donations from people like you.

Telemedicine Tips and Facts for Prostate Cancer Patients

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Dr. Leanne Burnham’s Top Tips for Your Prostate Cancer Telemedicine Visit

Dr. Leanne Burnham’s Top Tips for Your Prostate Cancer Telemedicine Visit from Patient Empowerment Network on Vimeo

What are some ways that prostate cancer patients can prepare for telemedicine visits? Dr. Leanne Burnham shares her top tips for ensuring success and for getting the most out of televisit appointments.

See More From the Prostate Cancer TelemEDucation Empowerment Resource Center

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What Prostate Cancer Populations Will Benefit Most From Telemedicine?

How Will Telemedicine Impact Prostate Cancer Clinical Trials?

What Are the Benefits of Telemedicine for Prostate Cancer Patients?

 

Transcript:

Dr. Leanne Burnham

Okay, my top three tips to prepare for a telemedicine visit is if you would usually have an advocate come with you to your in-person doctor’s appointment, try to make that happen for your televisit appointment as well. And explain to your physician when you get on the call say, “Hey, this is my wife, this is my husband, and they’re going to be joining the call if they have a few questions too, and I would like to have them be involved as part of the conversation.” The other thing is to have your questions prepared ahead of time, you know, and a lot of people have questions prepared ahead of time for in-person visits, but they might be nervous, they might keep their questions tucked away, well, this way your questions can be on the table next to you. Your doctor doesn’t even know, you still get to ask those questions though, and then the third tip that I would have is to allow for technology to mess up. So, for your visits, a lot of times your physician may give you a window where they say, “We’re going to call you between such and such time,” such as such time, you just sitting there waiting for them to call. But I say give yourself even more time than that in case you know something’s going on with your Internet or you are just not able to log into the app well, because I did have that happen to me personally, one time with the physician, and they were trying to get ahold of me, and I was having trouble connecting, and then he emailed me later saying, “You missed our appointment.”

I really wasn’t trying to miss the appointment, so just give yourself that extra time to get your technology together.

How Will Telemedicine Impact Prostate Cancer Clinical Trials?

How Will Telemedicine Impact Prostate Cancer Clinical Trials? from Patient Empowerment Network on Vimeo

How will prostate cancer clinical trials be changed by the addition of telemedicine to the treatment toolbox? Expert Dr. Leanne Burnham details patients who can benefit from telemedicine visits — and explains some of the history of discrimination in medical care for BIPOC patients and treatment response of African American men with prostate cancer

See More From the Prostate Cancer TelemEDucation Empowerment Resource Center

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Will Telemedicine Mitigate Financial Toxicity for Prostate Cancer Patients?

What Are the Limitations of Telemedicine for Prostate Cancer Patients?

Dr. Leanne Burnham’s Top Tips for Your Prostate Cancer Telemedicine Visit

 

Transcript:

Dr. Leanne Burnham

So clinical trials, the whole concept of clinical trials has really come to the forefront of the media right now with everything that’s happened in 2020 and currently with COVID.

And so a lot of people, if they were not aware of discrimination in medical care or clinical trials in the history of the U.S., then now they’re starting to become well-versed in it. So now people are hearing, “Oh, Tuskegee syphilis experiment,” where those of us who are in science, in medicine study health series research is, this is not new to us, so we’re grateful that it’s coming to the forefront. People are learning about it, but there is a justifiable medical mistrust by many Black and Brown people, but African Americans in particular, because of what has been done and not done in terms of medical treatment in the past 400 years. And so, because of this medical mistrust, that leads to sometimes a hesitancy to participate in clinical trials, because there’s an idea of, I don’t want to be a guinea pig, so that’s just one aspect that leads to less enrollment in clinical trials. There’s the whole other side of things, right? There’s the fact that a lot of African American patients are not asked to be in a clinical trial, they’re not explained what the clinical trial entails, a lot of people don’t realize that clinical trial patients have access to what I call what I consider to be VIP access to what is cutting-edge, and it doesn’t mean that it’s not new, that it hasn’t been tested extensively. It’s just now that it’s available to a patient at a particular disease stage that we might be looking at, and we have a lot of reason to believe that it will help that patient.

So a patient that’s enrolling in a clinical trial has access to the VIP treatment. And then as an added bonus, they actually have extra engagement with providers, extra touchpoints with their providers that patients that are receiving standard of care and not enrolled in a clinical trial don’t have as much access to. That being said, in addition to that, for us to really forward medicine in what we call precision medicine, which is able to have medication that’s tailored to an individual person based on their DNA makeup, based on how their body would individually respond to a drug. It’s super important, highly important that we have diversity in patients that are enrolled in clinical trials. For example, if you don’t have enough African American men enrolled in the clinical trial for prostate cancer, then you don’t really know if that medication would work worse or even better in that patient. And what we’re actually seeing is there has been a development of race-stratified clinical trials in the past less than 10 years, really around five years, where we’ve looked at chemotherapy, we looked at hormone therapy, and we looked at immunotherapy, where we include enough African American men in the trials, and we look at how the drug responds in African American men versus other men. And we see that African American men actually have a better treatment response than other races, so how amazing is that? Where you have a demographic that is more likely to get aggressive prostate cancer and die much younger, and we’re seeing that if they’re given the new treatments that are really tailored to target the disease in ways that we weren’t able to do it before, that they’re responding better and having longer survival and better outcomes. And so it’s really important for all those reasons I described to increase African American participation in clinical trials.

Now, I say all that to get to this point, which is, enrollment is not easy when you don’t live near a clinical trial center or a hospital that’s offering whatever treatment you’re interested in trying out as part of a trial. And so we know that race in this country is tied to geographic location, it’s tied to socio-economic status, and so what telemedicine provides is in previous instances where maybe a patient lives out the way 60 miles or more from an institution that has a clinical trial that they would want to be involved in, now they don’t have to drive to that center. They can have a telemedicine visit, they can conduct labs where they’re at near their home, see if they qualify to participate in the clinical trial based on their own body’s physiology and how their blood work comes out and how their imaging comes out, see if they qualify. And then they can enroll in that clinical trial, and so telemedicine in that aspect really opens the door to people who may have been interested who live out of the way, maybe even in a rural setting where the institutions that they have nearby, don’t have what they are interested in using or what may be best for their treatment plan personally, and so telemedicine opens a whole new world to patients such as those.

What Prostate Cancer Populations Will Benefit Most From Telemedicine?

What Prostate Cancer Population Will Benefit Most From Telemedicine? from Patient Empowerment Network on Vimeo

With a lack of staging in prostate cancer, which patients can benefit the most from telemedicine visits? Dr. Leanne Burnham maps out factors that may make some patients lower risk and situations that may warrant other patients to be seen in person to receive optimal prostate cancer care.

See More From the Prostate Cancer TelemEDucation Empowerment Resource Center

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How Will Telemedicine Impact Prostate Cancer Clinical Trials?

What Are the Limitations of Telemedicine for Prostate Cancer Patients?

Will Telemedicine Mitigate Financial Toxicity for Prostate Cancer Patients?

 

Transcript:

Dr. Leanne Burnham

So, prostate cancer is a very diverse disease. It presents itself differently in the clinic in each individual patient, so who is considered low risk, who is considered high risk is really a personal conversation that you have with your physician one-on-one, and it’s based on a lot of different factors. It’s not as cut and dry as some other cancers where you may break the disease down by just stage, simply stage I, stage II, stage III, stage IV. There’s a lot that goes into determining how aggressive someone’s prostate cancer tumors are. That being said, if you are considered to be low risk, you may be undergoing active surveillance by your physician or watchful waiting and in that situation, telemedicine would probably be a perfect approach where you get your labs done every few months or whatever your physician decides. And they can track your PSA velocity or doubling time and seeing if your PSA is growing, by growing I mean increasing in circulation or if it’s not which would be ideal. If you are more high risk, then you may need to increase your telemedicine visits. And, of course, if you are taking therapies that cannot be done from home, then you would need to go to a clinical setting, so that would include radiation of course, and chemotherapy, immunotherapy, perhaps. If you’re enrolled in a clinical trial where you need to go on-site to receive the medication, then that’s something that cannot just be done by telemedicine, you would have to go in-person.

Will Telemedicine Mitigate Financial Toxicity for Prostate Cancer Patients?

Will Telemedicine Mitigate Financial Toxicity for Prostate Cancer Patients? from Patient Empowerment Network on Vimeo

Prostate cancer patients often have financial costs associated with their care. Expert Dr. Leanne Burnham details ways that telemedicine reduces financial toxicity for prostate cancer care — and shares some of her own experience as a cancer patient when she was a doctoral student.

See More From the Prostate Cancer TelemEDucation Empowerment Resource Center

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What Are the Benefits of Telemedicine for Prostate Cancer Patients?

What Are the Limitations of Telemedicine for Prostate Cancer Patients?

Dr. Leanne Burnham’s Top Tips for Your Prostate Cancer Telemedicine Visit

 

Transcript:

Dr. Leanne Burnham

So speaking about financial toxicity, let’s just talk about it when it comes to medical treatment in general. Financial toxicity comes in many forms, and I can speak to this a little bit on a personal level, I myself was a cancer patient when I was a doctoral student, and I had to take nine months off of school and do chemo and surgeries, and the whole nine yards and the strain that puts financially on a family depends on what kind of safety guard you have in place ahead of time. When you’re not expecting to get cancer when you’re a young person, it can throw a monkey wrench for sure. And so in my own personal situation, my husband owns a barbershop, and he doesn’t have sick days, right, so if he doesn’t go to work, leave and he doesn’t come home with money. So that time that I was sick, that was stressful on us, because he didn’t necessarily want to call off, but he wanted to call off so that he could be with me, and he’s very concerned after I’m having my treatment, but at the same time, he needs to go to work. And so the stress that that creates for the patient, for the caregiver, that doesn’t necessarily lend itself to the healing process, because what we know is that stress kills literally, quite literally, and I’ve published on that topic before. As it pertains to prostate cancer, we know that chronic stress, cumulative stress spread out over time dysregulates your hormone function and leads to all kinds of disease, metabolic diseases, cancer down the road.

So financial toxicity is a real thing, and there are ways that telemedicine can help to mitigate some of that financial toxicity. So, for example, when you don’t have to call off work, let’s say to make your televisit, then that’s a really great thing. When you don’t have to try to find child care so that you can go to your appointments because now at the hospital setting or the doctors’ offices, you can’t bring your kids with you like you used to be able to just…okay, come sit in the waiting room, or come in the room. It’s not like that you can’t even enter the building most of the time, and so a lot of people have to try to find child care if they were going to go to the doctor in-person. But the benefit of telemedicine is you don’t have to do that, so that’s a saved cost. I know myself; I’ve taken televisit appointments during my lunch break while I’m in lab, and that just works out a lot better, it’s not a day that I have to call off work in order to make that happen. The other way that telemedicine can help reduce cost is there can be reduced visits to, let’s say, urgent care or the emergency room.

I can think of a few situations during this quarantine era with my kids even where certain symptoms come up and I think, “Oh, I really need to take him to urgent care,” but I schedule a video appointment with their doctor, the doctor goes over a symptom checklist and says, “You know what, you don’t need to actually bring them in for an appointment, just bring them in and have them do this lab work real quick and just be in and out, and then we’ll let you know if there needs to be a follow-up.” And then most of the time, there doesn’t need to be a follow-up, or there’s just a prescription that’s needed, and you avoid the extra cost of what going to urgent care would have been, going to the emergency room would have been. And you’re reducing your exposure to COVID, which is not a financial toxicity question, but that’s a benefit that telemedicine has as well.

What Are the Limitations of Telemedicine for Prostate Cancer Patients?

What Are the Limitations of Telemedicine for Prostate Cancer Patients? from Patient Empowerment Network on Vimeo

For prostate cancer care, what are some differences that patients experience with telemedicine visits rather than in-person visits? Dr. Leanne Burnham details some telehealth limitations that she has noticed in care for her patients.

See More From the Prostate Cancer TelemEDucation Empowerment Resource Center

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What Are the Benefits of Telemedicine for Prostate Cancer Patients?

What Prostate Cancer Populations Will Benefit Most From Telemedicine?

Will Telemedicine Mitigate Financial Toxicity for Prostate Cancer Patients?

 

Transcript:

Dr. Leanne Burnham

Well, some limitations that we’re seeing with telemedicine use, I can speak to, not only as a scientist, but also as an advocate for my loved ones, and seeing how telemedicine works in real time. It’s a little bit different when you can’t have your spouse or your parent or your sibling come with you into an office visit. Having your advocate sitting next to you on a virtual visit can come across a little bit more differently than when it’s in-person, and so that some of the personal effects are lost, I feel at times with the telemedicine approach. Then there’s also the idea of a telemedicine appointment often being like a double appointment, so let’s say, for example, if I were to go to a doctor in-person and I need to have some lab work done, you kind of can get it done at the same time. You go to your appointment, and then you go around the corner to get your labs done. Whereas now it may be that you have a telemedicine visit, and now it’s like, okay, you need to go get those labs, so you still have to find other time where you have to go and get that done, so it can tend to spread the experience out for some people.

What Are the Benefits of Telemedicine for Prostate Cancer Patients?

What Are the Benefits of Telemedicine for Prostate Cancer Patients? from Patient Empowerment Network on Vimeo

What are some of the telemedicine benefits that prostate cancer patients can experience beyond the most obvious ones? Expert Dr. Leanne Burnham shares patient safety, logistical, and care option benefits that she has seen with telehealth for her patients — and also shares the percentage of prostate cancer patients who prefer virtual visits

See More From the Prostate Cancer TelemEDucation Empowerment Resource Center

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Dr. Leanne Burnham’s Top Tips for Your Prostate Cancer Telemedicine Visit

What Prostate Cancer Populations Will Benefit Most From Telemedicine?

How Will Telemedicine Impact Prostate Cancer Clinical Trials?

 

Transcript:

Dr. Leanne Burnham

So telemedicine is presenting all kinds of new opportunities for any patient, but in terms of prostate cancer patients they fall into that category as well. What we’re seeing is that actually, the majority of patients prefer telemedicine upwards of 75 percent prefer to have that option, and adding virtual care has a few benefits including you don’t have to travel to the doctor, and you have access to maybe more options, more physician options, more institutional options. Maybe there’s a setting where they have a treatment that the location that you previously have gone to, doesn’t have. You have an option to network outside of your usual team to speak with other specialists, maybe get a second opinion. So that is something that patients are really saying that they like in the time of COVID that we are right now, where telemedicine is definitely increasing.

Should You Have Prostate Cancer Genetic Testing?

Should You Have Prostate Cancer Genetic Testing? from Patient Empowerment Network on Vimeo.

Should you ask for prostate cancer genetic testing? Dr. Nima Sharifi discusses prostate cancer genetics and shares his perspective on how testing can help ensure the best care for a patient.

Dr. Nima Sharifi is Director of the Genitourinary (GU) Malignancies Research Center at the Cleveland Clinic. Learn more here.

See more from The Pro-Active Prostate Cancer Patient Toolkit

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

Targeted Prostate Cancer Therapies vs. Chemotherapy: What’s the Difference?

Prostate Cancer Staging: What Patients Should Know

 


Transcript:

Dr. Sharifi:

I think it’s okay when you’re speaking with your physician to say that you’re concerned about the genetics of prostate cancer. You can ask about personalized medicine treatment options, and whether genetic testing would make a difference for treatments.

 

And you can also bring up the concern about family members, and that there may be an inherited or heritable component of cancer that could be passed down, for example, from one generation to the next and that could be shared among siblings. I think there’s nothing wrong with bringing that up. And I would suggest that if that’s a concern, that a man does bring that up with their physician.                                   

 

So, it turns out that there are certain germline mutations that can predispose to several different types of cancers.

 

For example, these BRCA mutations can predispose to developing prostate and perhaps more aggressive prostate cancer, but they can also predispose to developing breast cancer. So, if you look, for example, at members of a family who are related, you may see that certain cancers may develop in multiple family members. So, if you see that that – If you look at your family history and you see that that is the case, then you may want to think about genetic testing and perhaps to see a genetic counselor to talk about getting tested.

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

Prostate Cancer Treatment Decisions: How Do Genetic Test Results Impact Your Options? from Patient Empowerment Network on Vimeo.

How do genetic test results impact prostate cancer treatment options? Dr. Nima Sharifi explains BRCA mutations, germline genes, and somatic mutations—and discusses when treatment with PARP inhibitors may be appropriate.

Dr. Nima Sharifi is Director of the Genitourinary (GU) Malignancies Research Center at the Cleveland Clinic. Learn more here.

See More From INSIST! Prostate Cancer

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Should You Have Prostate Cancer Genetic Testing?

Targeted Prostate Cancer Therapies vs. Chemotherapy: What’s the Difference?

Prostate Cancer Staging: What Patients Should Know

 


Transcript:

Dr. Sharifi:        

There are several types of mutations that occur in prostate cancer. We know about a lot of them. We’re beginning to understand the function of many of them, and the role of just a few of them has become a bit clearer in treatment of prostate cancer. So, the one that I think has the clearest implications is something called BRCA mutations.

So, you can get mutations in genes that regulate DNA damage. This can occur in either inherited genes, or these are mutations that can occur in the cancer itself. And this will allow for tumors to become the developed – actually, greater DNA damage. The implications of using this information, genetic testing for these BRCA mutations, are actually several. One is that it may – if it comes in through the germline, then it tells us something about the hereditary or familial component of it.

So, that has implications not only for the patient but also potentially family members. And then the second set of implications has to do with treatment, and specifically treatment that in more advanced cases where there are now two FDA-approved agents that are used specifically for patients who have mutations in these genes.

And we’re still learning a lot about what these genes mean, or mutations of these genes mean for patients in their clinical course. And we’re learning much more information about other mutations which may occur in prostate cancer as well.

So, we should draw a distinction between two different types of genes. One is germline. Germline has to do with the DNA or the genes that you inherit from your parents. And the second category is somatic mutations, or somatic genetics. And this, specifically, has to do with mutations that occur in the cancer cell itself, but that are not inherited from one’s parents.

It’s a very active area of research. So, again, for the vast majority of mutations that we recognize in prostate cancer, we don’t use that to make clinical decisions. There are a few, such as the DNA damage repair genes or BRCA genes – which tell us something about the potential for a more aggressive disease course or a more aggressive disease – and also the potential appropriateness of using agents called PARP inhibitors, which seem to specifically work in patients who have mutations in the BRCA family of genes.

So, in terms of the treatment options, the major genetic tests that allow us to figure out whether systemic or drug treatment option is appropriate or not, is in DNA damage repair genes such as BRCA.

So, for example, in the case of metastatic disease that’s resistant to hormonal therapy and has already been treated with other therapies, if there is a mutation in BRCA or one of the closely related gene members, then use of a drug called a PARP inhibitor may be appropriate, and that could benefit patients.

How Can You Insist on Better Prostate Cancer Care?

How Can You Insist on Better Prostate Cancer Care? from Patient Empowerment Network on Vimeo

How can prostate cancer patients access the best care in an evolving treatment landscape? Prostate cancer survivor Jim Schraidt shares his advice for staying up-to-date about treatment developments and for accessing support and resources

Jim Schraidt is a prostate cancer survivor and Chairman of the Board of Directors for Us TOO International. Learn more about Jim Schraidt here.

See More From INSIST! Prostate Cancer

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How Does Us TOO International Support Prostate Cancer Patients and Their Loved Ones?

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Newly Diagnosed with Prostate Cancer? Consider These Key Steps

Newly Diagnosed with Prostate Cancer? Consider These Key Steps

 


Transcript:

Jim Schraidt:              

The really great news is that sort of across the board, from early stage disease through metastatic prostate cancer patients, there are advances that are occurring very rapidly at this point, so rapidly that practitioners have difficulty keeping up with them.

And, honestly, those of us who do some patients support likewise have difficulty keeping up with them. I think, once again, these support groups can serve a useful function in that you have specific questions, you hear about it, you bring together a group of individuals, and somebody in that group may know something about it.

And they can tell you, they can give you information, or they can give you direct Internet links where you can find more information. The other source of information is some of the Us TOO publications, our monthly hot sheet, as well as the website.

There are a couple other websites that I personally regard as excellent. The first would be the Prostate Cancer Foundation. The second would be Prostate Cancer Research Institute. And then finally, ZERO. So, I think if you attend a support group, and talk to other guys, and look at some of these websites, I think that’s a very good starting point for research and trying to get the best and most up-to-date information possible.

There’s a lot of progress being made across the disease spectrum, and it’s very exciting. I mean, for many years, all we had was surgery, radiation, and hormone therapy. But new things are coming online all the time. There are immunotherapies that are frequently genetically based. And there’s new knowledge about the disease itself and making active surveillance available to more patients.

And this is extremely critical because many men can go on with prostate cancer, with low-grade disease, really for their entire lives, and avoid the side effects of treatment.

And even if they don’t, if they delay definitive treatment for a period of years, there may be something new that comes down the pike that is both effective and has a better side-effect profile. This is the kind of research that is a part of what Prostate Cancer Foundation is funding.

So, there’s a lot out there. There’s a lot that’s happening. And I think that should give encouragement to prostate cancer patients. In terms of somebody who is later in the process and having difficulty coping with side effects or disease progression, I think the encouragement is that there are people out there that you can talk to about it, that you’re really not alone, and there are people out there that are anxious to help you, to hear from you, and provide assistance.

For those of us who have been at it a while, we find that helping others enhances our own healing. And so, don’t be reticent about asking for help. Because it’s out there, and it can really make a difference.

Newly Diagnosed with Prostate Cancer? Consider These Key Steps

Newly Diagnosed with Prostate Cancer? Consider These Key Steps from Patient Empowerment Network on Vimeo.

For those who are newly diagnosed with prostate cancer, figuring out what to do next can be overwhelming. Prostate cancer survivor Jim Schraidt outlines advice for patients to encourage self-advocacy and to access resources and support.

Jim Schraidt is a prostate cancer survivor and Chairman of the Board of Directors for Us TOO International. Learn more about Jim Schraidt here.

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How Does Us TOO International Support Prostate Cancer Patients and Their Loved Ones?

How Does Us TOO International Support Prostate Cancer Patients and Their Loved Ones?

How Could You Benefit from Joining a Prostate Cancer Support Group?

How Can You Insist on Better Prostate Cancer Care?


Transcript:

Jim Schraidt:

If you’re newly diagnosed, get a second opinion on your biopsy slides. Because reading those slides is as much an art as it is a science. And we’ve had people who will come to our support groups who then went on to have their slides reviewed on a secondary basis. And it’s changed their diagnosis. In one case, a guy discovered that he actually did not have prostate cancer.

And in other cases, it’s changed the grading of the cancer that’s identified in the biopsy, which of course then impacts treatment decisions, whether it’s active surveillance, surgery, radiation, or systemic therapy. So, that would be the first thing. I think the other thing, and I that think this is true for most medical issues, is to get a second opinion, take the time to get a second opinion.

And in the case of prostate cancer, try to do it at a medical center that takes a multi-disciplinary approach to the disease. So, you would be meeting at the outset with a urologist, a radiation specialist, and perhaps a medical oncologist who can really take you through the options, the treatment options for your situation.

And then I guess the final of three items that I would say is find a support group. And even if you want to just join one of the virtual groups and listen and learn, that’s perfectly fine. But learn about the disease you have, and learn about the treatment options, and learn the things that you need to ask your medical practitioners to help you get the best outcome.

Because the happy patient is going to be the one that knows what he’s getting into and makes and accepts that as part of his decision and can focus after treatment on healing and not on treatment regret.

How Could You Benefit from Joining a Prostate Cancer Support Group?

How Could You Benefit from Joining a Prostate Cancer Support Group? from Patient Empowerment Network on Vimeo.

What are some of the benefits provided by prostate cancer support groups? Prostate cancer survivor Jim Schraidt shares his perspective on how support groups can help patients with the emotional aspects of the disease as well as serve as a resource for information sharing.

Jim Schraidt is a prostate cancer survivor and Chairman of the Board of Directors for Us TOO International. Learn more about Jim Schraidt here.

See more from The Pro-Active Prostate Cancer Patient Toolkit

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How Does Us TOO International Support Prostate Cancer Patients and Their Loved Ones?

How Does Us TOO International Support Prostate Cancer Patients and Their Loved Ones?

Newly Diagnosed with Prostate Cancer? Consider These Key Steps

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Transcript:

Jim Schraidt:              

I think there are two primary ways that support groups are helpful. In the best case, a man will come to a support group as a newly diagnosed patient. And we’re actually working with a pilot project at Northwestern in Chicago where we have a support group that’s been in existence for a little over a year at this point.

But one of things that we’re working with the urology department there on is to get the urologists to refer newly diagnosed patients to the support group. And I think the primary benefits to a newly diagnosed patient are first, sort of removing some of the anxiety by talking to people who have been through the process and reminding them that in 90 percent of the cases they have some time to do some research, talk to people, and make a good decision that they can live with.

Because all of the treatments for prostate cancer, with the possible exception of active surveillance, come with side effects that a person undergoing this kind of treatment is going to have to live with for the rest of this life.

So, it’s a decision that’s very important. And to have the best possible outcome for a patient, they need to know what those side effects are. And they need to hear from men who have actually been through it.

I think the second important function of support groups is just support; after treatment, or if a patient is unfortunate enough to have recurrence or progression of his disease. And we’re not practitioners. We’re not medical practitioners. We don’t give medical advice. But there are lots of tricks of the trade, if you will, that men who have been coping with side effects can share with other men and help them get through it.

And part of that is just having a place to talk about what they’re going through, whether it’s things that they’re embarrassed to talk with their friends about, or things where they’re having difficulty communicating with their partner. I know from experience also that anger is a big thing that many patients experience, anger, and depression, post-treatment. And for me, one of the huge benefits of a support group was finding a place where that anger could go.

Because, I mean, even the best and most well-intentioned spouse, partner, or whatever, is going to grow tired of an angry patient partner.

And that can impact communication and can isolate a patient. So, it’s really important to have a place where some of that can go. And that’s part of the second piece, as far as I’m concerned.

The whole mental health piece really is under-emphasized, under-discussed by practitioners, but is very real for a lot of men undergoing this treatment. And the good news is that, that there is help available, and you can get through this. But many, many, many times you can’t do it on your own.

And you can’t do it solely with the help of your partner many times. So, this is one way you can talk to other people who have been through it, and they may have suggestions about therapy or talking to mental health practitioners.

How Does Us TOO International Support Prostate Cancer Patients and Their Loved Ones?

How Does Us TOO International Support Prostate Cancer Patients and Their Loved Ones? from Patient Empowerment Network on Vimeo.

What are the ways that Us TOO International can help prostate cancer patients and their loved ones? Jim Schraidt, a prostate cancer survivor and chairman of Us TOO’s board of directors shares how his involvement with support groups evolved after his diagnosis and how Us TOO is working to improve support for both patients and care partners.

Jim Schraidt is a prostate cancer survivor and Chairman of the Board of Directors for Us TOO International. Learn more about Jim Schraidt here.

See more from The Pro-Active Prostate Cancer Patient Toolkit

Related Resources

How Could You Benefit from Joining a Prostate Cancer Support Group?

Newly Diagnosed with Prostate Cancer? Consider These Key Steps

How Can You Insist on Better Prostate Cancer Care?


Transcript:

Jim Schraidt:              

My name is Jim Schraidt. I am now a 10-year, almost 11-year prostate cancer survivor. I was diagnosed in January of 2010 and had surgery in March of that year. Since then I’ve been involved in various support groups and some of those activities.

I found my way to a support group probably about three or four months after I was treated. And I was very active in that support group for a number of years. They helped me with a number of issues I was having at the time. And eventually I went on to become the facilitator of that group, and I’ve been in that role now for about five years.

Us TOO helped me find my initial support group. And we currently sponsor a network, a nationwide network of about 200 support groups. I became very interested in the work that Us TOO was doing, and I ran for Board, their Board of Directors. And I was elected, and I’m now finishing my sixth year on the Board and my second year as Chairman of that Board.

So, we’ve been very active in looking at the entire prostate cancer community and trying to develop new and better ways to serve patients. One of the things that we’ve accomplished in the last couple years is a partnership with a prostate cancer foundation, with is the leading private-research funder of prostate cancer research. So, we’ve worked with them to help make education about clinical trials available, for example. And they are contributing to our monthly newsletter with research news that’s actually put in laymen’s language so that people can understand it.

We’ve collaborated with other prostate cancer organizations, and we believe that this is critically important, that by working together we can amplify the patient voice and develop the best possible educational materials. So, in addition to the support groups, we have that going on. We also have a website that has a great deal of information about prostate cancer, support groups, and that sort of thing.

We are the prostate cancer sponsor for the Inspire site, which is an online community where prostate cancer patients can type in a question and have that question answered by other prostate cancer patients, or people who are knowledgeable in the field.

We actually have some practitioners that occasionally check in on that. So, then I think the final thing is that we have a couple of dial-in support groups that are for subspecialty types of patients and caregivers.

The first is called A Forum for Her, and it’s exclusively for women partners and caregivers. It gives them a separate and safe place to go and talk about the disease from a woman’s perspective. And then the second, newer dial-in support group we have is for gay men. And this is a group of men that for various reasons are less comfortable than they need to be in a broader kind of support group.

So, we’re working on that as well. One of our key initiatives as we look to celebrating our 30th year next year is support group leader education. And the goal here is to teach support group leaders best practices and make resources available to them so that they can either direct patients where to find information, or they can go back and find information and give that to patients directly.

So, the goal, once again, is to bring some standardization to the support group experience, and make sure that men are getting the best possible support and information.

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