Newly Diagnosed with Prostate Cancer? Consider These Key Steps

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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 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?

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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

Related Resources

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

How Can You Insist on Better Prostate Cancer Care?

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?

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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.

See more from The Pro-Active Prostate Cancer Patient Toolkit

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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.

Caregiver Support: Taking Care of YOU

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Caregiver Support: Taking Care of YOU from Patient Empowerment Network on Vimeo.

Prostate cancer caregivers support patients in many ways, but also need support for themselves. Social worker Linda Mathew details the role of caregivers and shares resources to help them maintain their own self-care.

Linda Mathew is a Senior Clinical Social Worker at Memorial Sloan Kettering Cancer Center. Learn more here.

See more from The Pro-Active Prostate Cancer Patient Toolkit

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Transcript:

Linda Mathew:

So, caregivers have a really important role in caring for their loved ones, so whether it’s their spouse, or a sibling, or a child, they – their role 1). Is to advocate as well for the patient in terms of saying, “Hey, you know what? Let me call the doctor’s office. This side effect was on the list, but I’ve noticed that it’s ongoing, so let me reach out to the office for you if you’re not feeling well.”

They are the eyes and ears for their patient or for their loved one in terms of just saying, “Something is not right. Let me call.” And, most of our nurse practitioners or nurse office practice nurses will say to the caregiver, “You are our eyes and ears when you’re at home. When the patient is here, we’re the eyes and ears for that person to assess what’s going on.”

But also, the caregiver really – sometimes, what happens is there’s a role reversal, so they become that emotional support for the loved one, the financial support, practical support, and also the spiritual support for their loved one, and we remind them that is your – that is a huge role to play, and there’s no handbook for it, but we have resources for you, so you’re not alone in that process.

And, the one thing we really stress is here at Memorial Sloan Kettering Cancer Center, we recognize the important role of our caregivers and how important they are to the loved one that they’re caring for. So, with that resource-wise, the social work department has a program called Reach for Caregivers, and it’s a hospital-wide program that we offer support groups as well as educational workshops.

And then, in November, being Caregiver Month, we put on a lot of different programs just for our caregivers to know we recognize you, we know you need the support, so here it is. So, in terms of support groups we offer, it’s all online because we know that sometimes, the caregiver is also working outside of the home, so to help meet them where they are, we’ve offered an online support group that they can tap into during their lunch hour, or even after work.

Why You Should Speak Up About Your Prostate Cancer Care

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Why You Should Speak Up About Your Prostate Cancer Care from Patient Empowerment Network on Vimeo.

What are the benefits of prostate cancer patients speaking up about their care? Linda Mathew discusses the impact of patients taking an active role in their care.

Linda Mathew is a Senior Clinical Social Worker at Memorial Sloan Kettering Cancer Center. Learn more here.

See more from The Pro-Active Prostate Cancer Patient Toolkit

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Transcript:

Linda Mathew:

Our medical team is really open about having discussions. So, 1). Our team is not blind to knowing that our patients may want a second opinion just to validate “Hey, is this – do I have all of the information laid out in front of me?”, and we always say it’s like – it’s always good to have that second opinion just to say, “Ah, what’s been told to me is correct, and it goes in line with what I’m reading on the different websites for these places that I’m going to for possible treatment.”

I always tell our patients also that you are your best advocate, so you know what your needs are, and if it means that you need more information before you make a final decision, then do it.

So, if it means talking to other people or going for a second opinion, then go ahead and do that, but I also tell our patients if you’re scared about asking a question, if you’re not – that’s a huge issue. If you’re scared to ask a question to your medical team, that means that, in itself, says, “Hey, is this the right fit?” So, I always encourage our patients, “Our team knows that you want to ask a question. Just go ahead and ask it. You’re not going to embarrass them; you’re not going to embarrass yourself. That’s what your physician and the nurse are there for.”

I think the one thing I would want to stress is that you, the patient, knows themselves. They know what their needs are more so than anybody else, so if that means that you feel like something is missing, then speak up, let us know, and if you don’t feel saying it to the nurse at the moment when you’re in a visit, you can always reach out to the social worker, who can help direct that question back to the team or help you find a way to ask that question either via the portal or an email to the medical team.

Tools for Managing Prostate Cancer Fear and Anxiety

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Tools for Managing Prostate Cancer Fear and Anxiety from Patient Empowerment Network on Vimeo.

Fear and anxiety are common feelings that arise while living with prostate cancer. Social worker Linda Mathew explains how she helps patients improve quality of life while living with prostate cancer.

Linda Mathew is a Senior Clinical Social Worker at Memorial Sloan Kettering Cancer Center. Learn more here.

See more from The Pro-Active Prostate Cancer Patient Toolkit

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Transcript:

Linda Mathew:

The common fears and worries that they have are – form the support group itself, the main ones that we always hear are the incontinence and erectile dysfunction. So, we really focus on what that means for them as men because it is their manhood, and their biggest concern is “No one told me I was going to have incontinence for this long. I thought it was going to end after a couple months of recuperation from surgery.”

And, we remind them your body has just gone through a shock in terms of having a prostatectomy, and so, it’s your body having to realign and remember what to do again in terms of taking care of itself. Just the same way as in erectile dysfunction, that is possible after having a prostate surgery – prostatectomy, so we remind them there are resources we have here to help address sexual health. So, I am obviously going to refer our patients to our men’s sexual health clinic, which is run by Dr. Mulhall and his team. So, those are the two areas that they really bring up, and it’s also in terms of “Can I have a relationship?” if they’re single, or “How do I let my significant other know that I’m having these issues?”

And, I always – I’m always encouraging our patients “Let’s talk about how to have that conversation if you’re scared of having it. What does that look like for you? What do you think is the worst thing that would be said to you? Let’s approach it from that end in terms of saying here’s some tools for you to have that discussion with your significant other.”

I start off with validating their feelings. I think that’s really important for our male population, is just that it’s okay to feel anxious, and anxiety is real, and with this population, PSA anxiety is very real. So, it’s going in for those three-month checkups to say, “How is my PSA doing? Am I in the right track?”, and just giving them that validation like, “It’s normal. What you’re feeling is normal.”

It relieves a lot of their anxiety because then, they’re thinking, “Okay, I’m not the crazy one here. Yes, what I’m going through – this uncertain journey that I’m on – everyone’s feeling this, no matter what the diagnosis is.” And then, I just – we talk about what it means for them, like what does this cancer diagnosis mean for them. Most of our men are always like – they want something that can be like there’s a solution-oriented process to it, and there’s no solution-oriented process to this, so it’s about how do you sit in that ambiguity, that uncertainty of this journey, and what can you do for yourself that you feel like you’re in control of?

So, for our prostate cancer patients, knowing that there are other people out there that they can talk to is a relief for them, that they’re able to know that there might be a group of men who can say, “Hey, I was there right where you were when I was initially diagnosed in terms of anxiety, in terms of not knowing how to make a decision about treatment plans or treatment options, but maybe my two cents can help you.”

A lot of patients that come to my support group, which is through the Resources for Life After Cancer program, really find that connection helpful because you’ve been given so much information, and you’re feeling overwhelmed by “How do I make this choice – a good choice – for myself?”, connecting with other men who’ve been given the same options, and made a decision, and see where they are now in treatment helps release – decrease the anxiety, but also gives them some relief in terms of not feeling like there’s pressure to how to choose the right answer, or the right recommendation, or the right treatment plan.

How Can a Prostate Cancer Social Worker Help You?

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How Can a Prostate Cancer Social Worker Help You? from Patient Empowerment Network on Vimeo.

How can a prostate cancer social worker help patients and their families? Linda Mathew, a senior social worker, shares how she provides support for patients and their loved ones after diagnosis, during treatment, and beyond.

Linda Mathew is a Senior Clinical Social Worker at Memorial Sloan Kettering Cancer Center. Learn more here.

See more from The Pro-Active Prostate Cancer Patient Toolkit

Related Resources

Tools for Managing Prostate Cancer Fear and Anxiety

Why You Should Speak Up About Your Prostate Cancer Care

Caregiver Support: Taking Care of YOU

 

Transcript:

Linda Mathew:

Hi, I’m Linda Mathew, and I am a senior social worker here at MSK. I am a supervisor in the Department of Social Work, but I also have a service, and I work with the urology service, so, both medicine and surgical patients.

 And, really, it’s just – I’m here as clinical support to our patients in terms of individual counseling, couples counseling, family counseling.

So, what we really do is we provide supportive counseling to our patients. So, in terms of when we say “supportive counseling,” if patients are anxious, or have some depression around the diagnosis, or have just fears around what that – what it means to have a cancer diagnosis and the uncertainty about what that journey will look like, they are referred to me to just process that out loud in terms of questions about themselves and how – how are they going to manage a diagnosis if they’re going to be on chemotherapy or questions about how to support their family around this diagnosis if they don’t even know how to have this conversation with their family.

Most times, if it’s a couple that come in, it’s around how do I support the patient as well as the caregiver through the trajectory of this patient’s treatment. So, the patient is dealing with their own diagnosis and treatment and what all that means, and the caregiver is also having a parallel process with this where they are caring for the loved one, but also have their own fears about “How do I navigate being a support to them? I don’t know what it means to be a caregiver for somebody who’s going through medical treatment.”

So, we help slow that down for them and say, “These are the things that you need to look out for. Just – you are their extra advocate. You are that person – their eyes, their ears – when they are not able to call the doctor’s office to be able to say, ‘I can call the doctor’s office with this information. Just tell me what you want me to say.’”

But, you’re also just there as a support, so it’s a really weird kind of…reminding our patients the tools that they already have, but because they feel like they’re in a crisis, they forget what those tools are.                

Please don’t feel like you have to figure this out on your own. Your medical team is here for you, social work is here for you, we have an ancillary service – like, services available in terms of the men’s sexual health clinic integrated medicine counseling venture, all in terms of supporting our patients. So, when in doubt – and, if you don’t know who to turn to, just turn to your social worker and ask them. Say, “I need help,” and we’ll guide you through it.

Why Prostate Cancer Patients Should Consider Participating in a Clinical Trial

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Why Prostate Cancer Patients Should Consider Participating in a Clinical Trial from Patient Empowerment Network on Vimeo.

Dr. Sumit Subudhi explains why prostate cancer patients should consider participating in clinical trials, the role they play in treatment options for prostate cancer and resources available to find trials. 

Dr. Sumit Subudhi is a Medical Oncologist at The University of Texas MD Anderson Cancer Center.

See More From INSIST! Prostate Cancer

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Transcript:

Katherine:                   

What would you say to patients who are nervous about participating in a clinical trial?

Dr. Subudhi:                 

Yeah. This is a common question that I deal with in clinic, because we tend to have a lot of trials at MD Anderson. And the first thing, for me, is to understand why they’re nervous, because there’s different reasons why people are nervous.

Some people have heard of placebo trials, where the experimental drug that they’re hoping to get is only given to a portion of the patients and not all. And so, patients are worried what if they get on the placebo arm. And so, what I tell patients in that case is that please note that you’re going to be monitored very closely – more than usual, and so I’ll be seeing you in clinic more often. And if there’s any signs of progression, I will take you off the study. But I also always have a back-up plan. So, I tell them this is the next drug I’m going to give you if you progress, so don’t worry, I’ve got a plan for you. So, that’s one thing.

The other thing that people get concerned about are experimental drugs – just the fact that they are experimental. And I have to remind them that all these standard therapies that we have for prostate cancer were all experimental at one point. And it was the courage of the other patients that went through clinical trials that helped bring it as standard of care. And then sometimes some people have issues with travel, and those are more logistical issues. And especially now with the COVID era, we have to think about that. And so, we’re also trying to find and use networks to see if there’s other trials that are more amenable for patients so they don’t have to travel far.

Katherine:                   

How can patients find out about clinical trials that may be right for them?

Dr. Subudhi:                 

Yeah. So, one way is using clinicaltrials.gov. And that’s a website that allows you to search for specific trials either by drug name or by disease type – so, for example, prostate cancer. So, that’s one resource. And the others are cancer societies like the American Cancer Society or ASCO or Prostate Cancer Foundation. They also have links to clinical trials that are exciting. 

Prostate Cancer: How to Know If Your Treatment Plan Is Working

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Prostate Cancer: How to Know If Your Treatment Plan Is Working from Patient Empowerment Network on Vimeo. 

How do you know if a prostate cancer treatment plan is effective? Dr. Sumit Subudhi, a Medical Oncologist, explains how a patient’s treatment response is monitored for its effectiveness.

Dr. Sumit Subudhi is a Medical Oncologist at The University of Texas MD Anderson Cancer Center.

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Transcript:

Katherine:                   

How can you tell if treatment is working?

Dr. Subudhi:                 

So, I actually use three criteria to figure this out. One is the patient’s self, their symptoms. So, some patients’ symptoms are related to the urinary tract system, such as they may have frequent urination, or they can have pelvic pain in that area or blood in the urine or problems with ejaculation.

Other patients have pain because they have metastasis to the bone, and so the bone pain can be a symptom. And when a treatment is working, these things will actually start resolving. And so, you’ll see that these symptoms start disappearing without pain medications or other things. So, symptoms is No. 1.

No. 2 is in prostate cancer, unlike many other cancers, we actually have a serum test, or blood tests, that we can follow, which is the PSA. And usually when that’s going down, that’s reassuring.

The third is scans – radiographic scans, such as CAT scans and bone scans, help us monitor the disease. In an ideal world, all three will be going in the same direction. Meaning if the treatments working, the patient’s symptoms have improved, if they had symptoms. The PSA is going down and third, the scans show that things are improving. But the truth is we don’t live in an ideal world.

And to me, the patient’s symptoms always trumps. And I’ll give you an example. Early on in my career, I had a patient that was getting hormonal therapy, and their PSA was zero. And he started having right hip pain. He had a traditional scan – a CAT scan and bone scan – done which showed that everything was stable. And remember, the PSA was zero. And so, I told him, I looked at your history carefully, and you had a right hip repair 10 years ago. I have a feeling that that’s probably what’s causing it.

So, he went to go see his orthopedic surgeon. And he comes back, and he says, no, the orthopedic surgeon says it’s your fault. So, I did an MRI, and the patient and the surgeon were absolutely right. So, I got tricked, because I fell in love with the PSA. And ever since then, the patient’s symptoms trumps everything else. It’s my job to figure out and rule out that this is not prostate cancer. So, my point is don’t fall in love with the PSA, because even if it’s zero, that doesn’t mean that you’re in the clear.

Katherine:                   

How long do you monitor a patient before you make the decision that the current treatment not working, let’s move on to something else?

Dr. Subudhi:                 

Yeah, good question. So, for each type of treatment and for each patient, I personalize how often I will see them.

For example, if someone is having significant pain, then I’m more likely to see them more often in clinic to make sure the pain is under control, but also to monitor how their treatment is going. And that means I’ll also scan them or do radiographic scans with the CAT scan and bone scan more frequently. Now, someone that’s more asymptomatic, you’ll see the intervals are longer. So, it’s really personalized for each patient. And the type of treatment they’re receiving, as well. So, it depends if they’re getting chemotherapy versus hormonal therapy versus a PARP inhibitor. So, all these play a factor, so it’s not a one-size-fits-all.

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

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Targeted Prostate Cancer Therapies vs. Chemotherapy: What’s the Difference? from Patient Empowerment Network on Vimeo. 

Targeted prostate cancer therapies and chemotherapy are both available options to treat patients with prostate cancer. Dr. Sumit Subudhi discusses the differences between these two forms of treatment, including their effectiveness and side effects.

Dr. Sumit Subudhi is a Medical Oncologist at The University of Texas MD Anderson Cancer Center.

See More From INSIST! Prostate Cancer

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Prostate Cancer: How to Know If Your Treatment Plan Is Working

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Transcript:

Katherine:                   

Let’s turn to targeted therapies. How exactly do they work?

Dr. Subudhi:      

Yeah. So, this is a form of personalized medicine. So, what you’re doing is you’re looking at the patient’s cancer, either their inheritable cause of genetic causes or the somatic. And then you’re saying, oh, wait, they have a genetic defect in a DNA machine. So, let’s use the PARP inhibitor, which also targets the DNA machinery.

And these are the cancer cells that are most likely to be susceptible to PARP inhibition. And actually, the cancer cells will die from it. Whereas if a patient has a normal DNA machinery, the PARP inhibitors will actually not have any effect on the cancer. 

They’re given, actually, orally twice a day. The two drugs are rucaparib and Olaparib that have been FDA approved for this indication.

Katherine:                   

How do these newer treatments differ from traditional chemotherapy?

Dr. Subudhi:                 

So, with chemotherapies, at least in prostate cancer, they’re given intravenously every three weeks. And the goal of the chemotherapies, they are actually designed to kill any actively dividing cell in the body.

And the problem is it’s not just cancer cells that are actively dividing in our body. For example, with the chemotherapy such as docetaxel or cabazitaxel, that’s used in prostate cancer – their brand names are Taxotere and Jevtana – these chemotherapies will also affect hair loss. Why? Because hair grows really fast. And in fact, I need a haircut every three to four weeks, which my wife has been helping me with.

So, the chemotherapies are targeting all actively dividing cells, and that’s why you also get nausea vomiting, because the cells of our GI tract are also affected by that. So, chemotherapies are not personalized. They’re there to kill actively dividing cells. Luckily prostate cancer divides a lot more quickly than any other cell in our body, and that’s why they’re susceptible to chemotherapy.

Katherine:                   

And as far as the targeted therapies, Dr. Subudhi, are there side effects with those?

Dr. Subudhi:                 

Yeah, there are. One of the most predominant side effect is actually anemia. And so, that’s when the red blood cells in our body are lower than usual. And so, that’s one of the major side effects for PARP inhibitors. But in addition, you can have nausea, vomiting, and diarrhea as other side effects with the PARP inhibitors.

The Link Between Prostate Cancer and Inherited Mutations

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The Link Between Prostate Cancer and Inherited Mutations from Patient Empowerment Network on Vimeo. 

How can inherited genetic mutations affect the course of your disease? Dr. Sumit Subudhi explains the link between inherited mutations and prostate cancer and how these mutations affect disease progression in patients with prostate cancer.

Dr. Sumit Subudhi is a Medical Oncologist at The University of Texas MD Anderson Cancer Center.

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Prostate Cancer Testing: What Tests Should You Advocate For?

How Can You Access Personalized Prostate Cancer Treatment? Resource Guide

How to Become a Partner in Your Own Prostate Cancer Care

 

Transcript:

Katherine:                   

Dr. Subudhi, what is the link between inherited mutations and prostate cancer?

Dr. Subudhi:                 

Yeah, so in approximately 10% to 15% of patients with prostate cancer, they have an inheritable cause for their cancer. And so, this predisposes them to not just having prostate cancer, but potentially to other cancers, but also their family members.

In regards to the inheritable causes, the BRCA mutations – BRCA2 and BRCA1 – are very common. In fact, BRCA2 is more common than prostate cancer than BRCA1. In addition, there’s CHEK2 and ATM which are common inheritable mutations. And the other ones are the mismatch repair genes. Again, all these play an important role in repairing DNA. So, if you’re mutated in these genes, then your ability to repair DNA has been significantly diminished, and you’re more likely to gain more mutations.

Katherine:                   

How do these mutations affect disease progression?

Dr. Subudhi:                 

Yeah. So, what they can do is they can lead to mutations that make the cancer grow more. And there’s two ways to do it. You can have a mutation in what we call an oncogene, a gene that when it’s active, it’s going to just promote the cancer.

And then we have other genes called tumor suppressor genes. Their normal function is to prevent the cancer from growing. But if the tumor suppressor gene gets mutated so it’s no longer functional, then the cancer can then take off, because it’s no longer suppressed. So, those are how these genes can actually affect the prostate cancer.

If you have either an inheritable mutation in these genes or a somatic mutation, then there’s a chance that the PARP inhibitors could actually work for you. And the PARP inhibitors, they actually target cancers where there’s a defect in the DNA repair pathway.

Now, there’s one thing that I want to point out that a lot of people sort of are missing, and it’s not a subtle point. Not all inheritable mutations are made the same – or even somatic mutations. Meaning, what we’re learning is the PARP inhibitors seem to be more active with the “Braca,” or BRCA, mutations and the ATM mutations. Whereas, they’re less active with other types of DNA repair mutations. So, the point is not all mutations are made the same.

Prostate Cancer Testing: What Tests Should You Advocate For?

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Prostate Cancer Testing: What Tests Should You Advocate For? from Patient Empowerment Network on Vimeo.

Genetic testing results can influence a prostate cancer patient’s treatment options and provide a more in-depth understanding into their disease. Dr. Sumit Subudhi reviews specific tests that prostate cancer patients should advocate for.

Dr. Sumit Subudhi is a Medical Oncologist at The University of Texas MD Anderson Cancer Center.

See More From INSIST! Prostate Cancer

Related Resources

Prostate Cancer Staging: What Patients Should Know

The Link Between Prostate Cancer and Inherited Mutations

How Can You Access Personalized Prostate Cancer Treatment? Resource Guide

 

Transcript:

Katherine:                   

What is the role of genetic testing in prostate cancer?

Dr. Subudhi:                 

That’s a great question, because this is something that wasn’t really available when I was training and understanding prostate cancer. But over the last few years, this has actually hit the mainstream, and it’s very important. And I see it having three roles. The first role is whether or not you can receive a certain type of targeted therapy or systemic therapy known as PARP inhibitors. So, if your genetic test is positive for certain markers – that I think we’ll cover later – then it can help give you more treatment options. The second is that generate testing can give you also risk of other cancers besides prostate cancer. For example, if you have the BRCA mutation, you’re 15% to 20% more likely to get breast cancer in men.

The third is that because the genetic testing is looking for inheritable mutations in your genes, that means you can pass it along to your kids. And this could have a tremendous impact on the screening strategies your children want to use in the future.

Katherine:                   

Would you mind going into that a little bit?

Dr. Subudhi:                 

Yeah.

Katherine:                   

For instance, my ex-husband had early prostate cancer. My 22-year-old son is worried now about also getting prostate cancer. His grandfather had prostate cancer.

Dr. Subudhi:                 

Yeah, great question. So, it’s not just about prostate cancer. So, prostate cancer, genetically, is linked to other cancers, as well.

So, in your case, you’re turning by your son. But if you have daughters or any female members in the family, consideration needs to be given to breast and ovarian cancer. And for both men and women, we also have to think about melanoma and pancreatic cancer. So, it’s not just prostate cancer that we’re thinking about when you have these genetic risks. And that’s very important, because each of these different cancers can have different screening modalities.

Katherine:                   

Oh. Well, how is the testing administered then?

Dr. Subudhi:                 

The testing is actually a blood test, so very simple.

Katherine:                   

Have there been any major advances in testing?

Dr. Subudhi:                 

Yeah, so when we’re talking about the inheritable testing, that’s just a simple blood test. And the reason why it can be done simply through the blood is because every cell in your body has it. So, when they collect the blood, they can just take any cell from there and do genetic analysis. And if that gene is mutated or missing, it will be captured.

Now, there’s another type of testing where they test your tumor tissue itself – so, your cancer tissue – whether you got it by biopsy or surgically removed. And so, that’s a different type of testing. That’s looking for what we call somatic mutations. These are not inherited mutations. These are mutations that are specific for your prostate cancer. Again, in contrast, the inheritable mutations are in every cell in your body – not just your prostate cancer cells, but every cell in your body. And the somatic, it’s just in your prostate tissue itself.

And so, sometimes with prostate cancer, it’s difficult to get the tissue. And what’s happened more recently – and to answer your question – is that the advances have been in what we call liquid biopsies, where they are able to use your blood and get the DNA from the tumors and actually genetically test the cancers that way. And so, that’s where the future is going.

Katherine:                   

Oh, that’s amazing. Are there specific tests that patients should ask their doctor for following the diagnosis?

Dr. Subudhi:                 

Yeah. So, if inpatients with high risk or metastatic prostate cancer, they should definitely be considering tests to see if they have mutations in what we call the DNA damage repair pathway or homologous recombination DNA pathway. And I know they’re fancy terms. What these genes are, they’re genes that help the body repair their DNA, and DNA is very important. And so, when there’s defects in the DNA repair pathway, then mutations occur. And these mutations can actually help the cancer grow.

 Now what’s happening is that what they’re looking for in these genetic tests – whether it’s the inheritable test or the somatic mutation test that’s looking just within the tumor itself – they’re looking to see if there’s any DNA damage machinery that’s defective. And if it is, then you’re more likely to benefit from PARP inhibitors, which are oral drugs that specifically target the DNA repair pathway.

How to Become a Partner in Your Own Prostate Cancer Care

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How to Become a Partner in Your Own Prostate Cancer Care from Patient Empowerment Network on Vimeo. 

Staying up-to-date about prostate cancer can help patients become partners in their own care. Dr. Sumit Subudhi explains how self-advocacy can play an essential role in helping patients become an active participant in their care decisions.

Dr. Sumit Subudhi is a Medical Oncologist at The University of Texas MD Anderson Cancer Center.

See More From INSIST! Prostate Cancer

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Prostate Cancer Staging: What Patients Should Know

Prostate Cancer Testing: What Tests Should You Advocate For?

The Link Between Prostate Cancer and Inherited Mutations

 

Transcript:

Katherine:

Dr. Subudhi, what advice do you have for patients who may be hesitant to speak up an advocate for themselves when it comes to their own care and treatment?

Dr. Subudhi:

Yeah, I’d say that it’s interesting because we all do this ourselves. And when it comes to our car – let’s say a car breaks down, or if we’re trying to buy furniture – we’ll get three, four different opinions. But for ourselves, for our own body, we don’t do that. And when you watch – we were talking earlier about Major League Baseball – and these players, when they get injured, they get the three best specialists in the world to evaluate them. And they’re seeing the best of the best.

And so, we owe it to ourselves and the patients owe it to themselves to actually get second opinions. I encourage it. I encourage my patients to get second opinions, even if I’m the first doctor they see, because I want them to feel comfortable with their decision.

And it’s important to understand that just because you’re seeing a doctor doesn’t mean that it’s a one-size-fits-all. You will get different opinions from different doctors, and you have to go with the one that makes you feel most comfortable.

Katherine:                   

We have a question from the audience, Dr. Subudhi. Amy is saying she’s the daughter of a prostate cancer patient. And she’s curious to know how she goes about getting genetic testing, and if her children should be tested, as well.

Dr. Subudhi:                 

Yeah. So, one of the things is that family history is very important in determining who should get genetically tested. So, if you’re a prostate cancer patient and you have metastatic disease, you should get genetically tested. And the reason for that is because we have a new set of drugs, the PARP inhibitors. But if you’re a family member that’s wanting to know whether you have a loved one has inheritable cancer that you may end up inheriting, that requires more understanding of the family history.

For example, did the grandfather have prostate cancer? Did the uncle have prostate cancer? And as I mentioned earlier, it’s not just prostate cancer. Is there a family member with breast cancer or ovarian cancer? These things play out in the decision-making of who should be genetically tested.

Prostate Cancer Staging: What Patients Should Know

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Prostate Cancer Staging: What Patients Should Know from Patient Empowerment Network on Vimeo. 

Dr. Sumit Subudhi provides a brief explanation of the stages of prostate cancer, the role of staging in determining a prostate cancer patient’s treatment path, and how patients can advocate for a precise diagnosis.

Dr. Sumit Subudhi is a Medical Oncologist at The University of Texas MD Anderson Cancer Center.

See More From INSIST! Prostate Cancer

Related Resources

Prostate Cancer Testing: What Tests Should You Advocate For?

How to Become a Partner in Your Own Prostate Cancer Care

How Can You Access Personalized Prostate Cancer Treatment? Resource Guide

 

Transcript:

Katherine:                   

Well, Dr. Subudhi, I’d like you to begin with a brief explanation of the stages of prostate cancer.

Dr. Subudhi:

We use stages, and there’s four – Stage I, II, III, and IV. And we use it to help us determine what treatments the patients need for their prostate cancer. In general, Stage I is localized prostate cancer, and it’s localized only to the prostate. And when we do a digital rectal exam, we cannot feel or palpate the prostate.

And the treatment for Stage I prostate cancer is either active surveillance, where you’re not trying to cure the cancer, you’re just actively watching it, and you’re using a PSA imaging studies, prostate biopsies, and digital rectal exams at regular intervals to follow the patients. But other patients with Stage I prostate cancer can actually get definitive treatment for curative intent with radiation therapy or surgery. Stage 2 prostate cancer is also localized, but on physical exam, we can actually palpate or feel the prostate cancer. And this also can receive definitive treatment for the prostate to cure it, and that, also, you can use radiation therapy and surgery.

Stage III is what I consider locally advance. This is where the prostate cancer is now starting to leave the prostate. And it still can be cured by radiation and surgery, but most likely needs a multidisciplinary approach, where you might need both or maybe even in addition of a systemic therapy. Stage IV is the last stage that I’ll talk about, and it has distant metastases. And here we’re not looking for a curative approach; we’re actually looking for palliation, which means that we’re trying to treat the prostate cancer as a chronic disease.

Katherine:

I understand that there are many types of prostate cancer that have been identified. How can patients advocate for a precise diagnosis?

Dr. Subudhi:

Yes, you’re absolutely right. There are many types. So, we have historically used histological classification. And when I say histological, that means when we look at the cancer under the microscope, we can look at the different structures within the prostate cancer and classify them.

And there are multiple types such as adenocarcinoma, neuroendocrine, small-cell, mucinous, etc. But more recently, with the advances in genetic and molecular testing, we now can look at the genes inside the prostate cancer, and that has also helped us better classify the cancer. Now many of these types of approaches are best done at major cancer centers, where they have experienced pathologists who actually evaluate both histologically and molecularly the cancer.

So, I recommend to my patients, or family and friends, that have been diagnosed with prostate cancer that they don’t necessarily have to go to the major cancer centers. They can have their local doctor send the tissue from the biopsy to the advanced cancer centers to get a second opinion.

Promising Prostate Cancer Treatment and Research News

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Promising Prostate Cancer Treatment and Research News from Patient Empowerment Network on Vimeo. 

Are there advances in prostate cancer treatment that patients should know about? Dr. Sumit Subudhi shares prostate cancer research news and discusses highlights from this year’s American Society of Clinical Oncology (ASCO) meeting.

Dr. Sumit Subudhi is a Medical Oncologist at The University of Texas MD Anderson Cancer Center.

See More From INSIST! Prostate Cancer

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Prostate Cancer Staging: What Patients Should Know

Prostate Cancer Testing: What Tests Should You Advocate For?

The Link Between Prostate Cancer and Inherited Mutations

 

Transcript:

Katherine:

As a researcher in the field doctor, Dr. Subudhi, what would you like to leave patients with? Are you hopeful?

Dr. Subudhi:

Yeah, I’m very hopeful. It’s a really interesting time, because with the technological advances and scientific advances – Traditionally, prostate cancer has always been treated just with hormonal therapies from the 1930s all the way to early 2000. Then in 2004, chemotherapy became the next thing. And then after chemotherapy, we’ve now got a dendritic cell vaccine; we’ve also got a radiopharmaceutical agent. And so, what the point is now we have a lot more different FDA-approved agents. And now, experimentally, the PARP inhibitors have now become a standard of care for those patients with mutations in the BRCA1, BRCA2, or ATM.

And then, in addition, we have many other types of technologies, such as BiTE and CAR T cells, that are coming out that are showing in early studies to be exciting. And so, I feel like that these therapies in combination may actually lead us to cure the cancer.

Katherine:                   

ASCO happened in June. Was there any news that patients should know about?

Dr. Subudhi:                 

Yeah, so the PARP inhibitors got a lot of press during ASCO, as they should, because this is a new class of drugs that is the first personalized version of medicine that we have in prostate cancer. Now, personalized medicine has been around for a long time in cancers such as breast and lung cancer. But for first time, we actually have it in prostate cancer.

Katherine:                   

Dr. Subudhi, I want to thank you so much for joining us today.

Dr. Subudhi:

Thank you for your time. I really appreciate it.

Katherine:

And thank you to all of our partners. To learn more about prostate cancer and to access tools to help you become a more proactive patient, visit powerfulpatients.org. I’m Katherine Banwell.