Why Should People With Prostate Cancer Share Emotional Issues With Their Team?

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Why Should People With Prostate Cancer Share Emotional Issues With Their Team? from Patient Empowerment Network on Vimeo.

Prostate cancer expert Dr. Tanya Dorff explains common emotional issues that arise during treatment and monitoring, and why it’s important for patients to speak up about any feelings that may be causing distress.

Dr. Tanya Dorff is Associate Professor in the Department of Medical Oncology & Therapeutics Research at City of Hope. Learn more about Dr. Dorff.
 
 

Related Resources:

How Can Palliative Care Help People With Prostate Cancer?

 Strategies for Treating Advanced Prostate Cancer Symptoms

 What Is Personalized Prostate Cancer Medicine?

Transcript:

Katherine:

Beyond treatment, another large part of thriving with prostate cancer is dealing with the emotions that come along with the diagnosis, like fear and anxiety. Whether it’s the stress of being in active surveillance or worrying about progression, many patients need help coping emotionally. Why do you feel it’s so important for patients to share these emotions with their doctor or their healthcare team? 

Dr. Dorff:

I think it’s a conversation that’s not held enough between patients and their physicians, and if we don’t remember to ask our patients, we will just focus on the medical because that’s our main wheelhouse, that’s what we’re best at. So, if a patient brings forth that they’re having some emotions related to the cancer, it is helpful to us in remembering – we ought to do everything 100 percent all of the time, but let’s face it, we’re physicians with time pressures and certain areas of comfort and expertise. So, if a patient brings it up, that is super helpful because then we know someone’s needing assistance, which probably every patient is, whether they tell us or not, but that triggers us to then offer appropriate referrals. 

And also, it tells us they’re open to it. If we have to ask every patient, “Are you having any emotional distress?”, even if someone answers yes and then we make a referral, they may not have actually been ready for it or open to it. So, having the patient come forth and raise that, I think, is really helpful and important. 

How Can Palliative Care Help People With Prostate Cancer?

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How Can Palliative Care Help People With Prostate Cancer? from Patient Empowerment Network on Vimeo.

Some prostate cancer patients may receive palliative care, but how is it used exactly? Expert Dr. Tanya Dorff explains research studies about palliative care and how it can be used to improve quality of life for patients.

Dr. Tanya Dorff is Associate Professor in the Department of Medical Oncology & Therapeutics Research at City of Hope. Learn more about Dr. Dorff.
 

Related Resources:

Managing the Side Effects of Advanced Prostate Cancer Treatment

 Strategies for Treating Advanced Prostate Cancer Symptoms

 What Is Personalized Prostate Cancer Medicine?

Transcript:

Katherine:

What is palliative care, and how can it help men with prostate cancer? 

Dr. Dorff:

Palliative care is something that we think about more towards the end of life, where we’re focusing on cancer symptoms more than treating cancer. However, some studies have shown – very prominent studies – that early palliative care in some malignancies is associated actually with better survival, meaning that paying attention to the patient’s symptoms is actually a really important part of keeping them well and keeping them alive as we treat the cancer. 

So, more and more, we’re starting to integrate palliative care earlier in the disease.  

I think that can sometimes signal a little alarm for patients – “Oh, I’m being referred to palliative care, that means my doctor doesn’t really think they can treat my cancer anymore” – and it’s gonna take some education to really help people transform their thinking about palliative care as a strategy that’s not for the end, but something that really should be part of our treatment all along. 

So, our palliative care team, or what we call supportive medicine at City of Hope, uses treatments to manage pain. They have a broader spectrum, they’re more focused on all the different modalities to treat pain, so an oncologist or urologist can treat pain, but when we refer to palliative or supportive medicine, you get just that extra expertise, especially if people are having a lot of side effects from pain medicines, but our supportive medicine doctors aren’t only pain management doctors. 

They help with other symptoms, like nausea or constipation, to some extent urinary symptoms for my prostate cancer patients, although we rely heavily on urology for that, and also just the existential, or spiritual, or emotional components. 

Our supportive medicine team typically includes not only an MD, an advanced practice provider like an NP, but also someone from psychology, someone from social work, because dealing with cancer is really stressful and challenging, and in an ideal world, palliative care is not only taking care of the symptoms of the cancer that are physical, but also helping the whole being, the whole family unit that’s going through this experience have less emotional distress as well. 

Does Prostate Cancer Hormone Therapy Cause Cognitive Issues?

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Does Prostate Cancer Hormone Therapy Cause Cognitive Issues? from Patient Empowerment Network on Vimeo. 

Could hormone therapy for prostate cancer lead to cognitive issues? Expert Dr. Tanya Dorff discusses whether there’s a link and explains which treatments may be helpful for cognitive issues.

Dr. Tanya Dorff is Associate Professor in the Department of Medical Oncology & Therapeutics Research at City of Hope. Learn more about Dr. Dorff.
 

Related Resources:

Tools for Partnering in Your Prostate Cancer Care

 Thriving With Prostate Cancer: What You Should Know About Care and Treatment

 Managing the Side Effects of Advanced Prostate Cancer Treatment

Transcript:

Katherine:

We received some audience questions prior to today’s webinar, and I’d like to go through some of them with you. Bob asks, “Does androgen deprivation therapy (ADT) cause cognitive issues?” 

Dr. Dorff:

So, androgen deprivation therapy is another way of saying hormone therapy. We’re lowering testosterone, which is an androgen, and the question about cognitive issues is a good one. If you look in the literature, it’s not been well-documented, and part of that is because our patients tend to have age and other comorbidities that can lead to changes in cognition happening at the same time as they’re being treated for prostate cancer, but also because the tools just haven’t been very good. 

The tests where we measure how your brain is working have traditionally not been very good. There are some better tools that have been developed, and we’re hoping to be able to – with some ongoing studies – better define are there cognitive changes? If so, how severe are they, how common are they, are they more common with one drug versus another? Very basic questions. 

I will say in my own practice, after 15 years of treating prostate cancer, I do believe that some patients experience cognitive changes during ADT. They can be mild, like taking longer to remember someone’s name or walking into a room and forgetting why you’re there, which, frankly, happens to all of us when we’re not having our best days, but obviously, I do see that a little bit more with prostate cancer patients who are receiving hormonal therapy.  

For some of my really high-functioning patients, it can be helpful to use a drug that treats attention because some of the cognitive dysfunction actually ends up being an issue with attention. So, we use drugs like methylphenidate (Ritalin) or dextroamphetamine mixed salts (Adderall) to support patients who need to be really focused, and I’ve had many patients tell me that that has made a huge difference for them, so it’s not going to solve the overall changes that may happen in the brain on the basis of the hormonal deprivation, which we know happens from animal models, but it can help in the short term so that men can continue to function at a high cognitive level, despite ADT, when needed. 

Strategies for Treating Advanced Prostate Cancer Symptoms

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Strategies for Treating Advanced Prostate Cancer Symptoms from Patient Empowerment Network on Vimeo.

What are strategies for treating advanced prostate cancer symptoms? Expert Dr. Tanya Dorff reviews approaches to protect bones and options for managing sexual dysfunction symptoms.

Dr. Tanya Dorff is Associate Professor in the Department of Medical Oncology & Therapeutics Research at City of Hope. Learn more about Dr. Dorff.
 

Related Resources:

What Is Advanced Prostate Cancer?

 Understanding Advanced Prostate Cancer Treatment Approaches

 Managing the Side Effects of Advanced Prostate Cancer Treatment

Transcript:

Katherine:

That’s really promising. What about treating symptoms of the disease itself, like bone pain?  

Dr. Dorff:

Bone metastases are the predominant pattern of spread, and so, what really drives the story for a lot of our prostate cancer patients during their journey with cancer has to do with bone complications – not always pain, but unfortunately, there can be pain pretty frequently. 

So, we start by trying to protect the bones early on. We know that when we use our hormonal therapies, osteoporosis can develop, so we want to avoid that. I’ve had patients where their cancer was well-controlled, but they had an osteoporosis fracture that they were miserable from, so it starts at the beginning, at protecting the bones, checking a bone density scan and/or using a bone-supportive agent like zoledronic acid (Zometa) or denosumab (Xgeva), and then, in the metastatic setting, as the disease progresses, we intensify that use of bone-supportive agents. 

We sometimes end up using radiation therapy, which is primarily external-beam traditional kind of radiation, but there is also the radiopharmaceutical Radium-223 (Xofigo), which delivers the radiation kind of more internally through the bloodstream to areas of the bone that are active from the prostate cancer, and sometimes we end up needing something even like surgery, but the bones are a major part of the story.  

Katherine:

Yeah. What about sexual dysfunction? Are there approaches that can help?  

Dr. Dorff:

So, this is generally an area that’s managed more by urology. There definitely are things that urologists do to help patients who have lost sexual function due to prostate cancer treatments. They can involve medicines, they can involve slightly more invasive things like a suppository or an intracavernosal injection. There are also more mechanical ways, like a pump device or a penile implant, but generally, anything beyond the first level, which is Viagra, will be handled more by a urologist than a medical oncologist. 

Tools for Partnering in Your Prostate Cancer Care

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

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

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

Related Resources:

What Is Personalized Prostate Cancer Medicine?

Tools for Choosing the Right Prostate Cancer Treatment Approach

Transcript:

Katherine Banwell:

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

Dr. Rana McKay:

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

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

Katherine Banwell:

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

Dr. Rana McKay:

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

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

Katherine Banwell:

Yeah. 

Dr. Rana McKay:

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

Katherine Banwell:

Yeah. How can patients find specialists near them? 

Dr. Rana McKay:

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

Managing the Side Effects of Advanced Prostate Cancer Treatment

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Managing the Side Effects of Advanced Prostate Cancer Treatment from Patient Empowerment Network on Vimeo.

Prostate cancer expert Dr. Rana McKay reviews potential prostate cancer treatment side effects and discusses strategies for managing these issues.

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

Related Resources:

What Is Personalized Prostate Cancer Medicine?

 When Should Advanced Prostate Cancer Patients Consider a Clinical Trial?

 Tools for Choosing the Right Prostate Cancer Treatment Approach

Transcript:

Katherine Banwell:

Dr. McKay, for these treatment classes, what can patients expect as far as side effects? 

Dr. Rana McKay:

Absolutely. So, I think side effects – discussing side effects is a really important part of the discussion for selecting any one given therapy and in general, I think when we talk about the hormonal therapies one of the side effects that people can get is largely fatigue.  

But a lot of the symptoms are related to low testosterone. And so, that may mean muscle loss, bone loss, you know, hot flashes, fatigue, decreased libido. So, you those are things to consider with hormonal therapies. With the chemotherapies, I think the big ones we worry about are fatigue, risk of infection, blood counts dropping a little bit, people getting tired, numbness and tingling in the hands and feet can occur, some swelling in the legs are common side effects for chemotherapy agents. With regards to the immunotherapy with the vaccine therapy, it actually tends to be a fairly well-tolerated treatment. Maybe some fatigue, rarely some dizziness or some lip – lip sensitivity, numbness with the – the process of kind of collecting the cells. But it actually tends to be fairly well-tolerated.  

The targeted therapies can cause fatigue. They can cause the blood counts to drop and can impact bone marrow function. There can be sometimes GI side effects. Nausea, rash, and then the immune therapy, the pembrolizumab (Keytruda), that is FDA-approved sometimes that can cause immune-related adverse events which is kind of overactivation of the immune system developing, you know, what I’d call it as the itises. Colitis or pneumonitis, which is inflammation of various organs and symptoms related to wherever that may be.  

How Does Stress Correlate With Your Prostate Cancer Diagnosis?

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How Does Stress Correlate With Your Prostate Cancer Diagnosis? from Patient Empowerment Network on Vimeo. 

How do stress and cortisol levels contribute to prostate cancer incidence and aggressiveness in Black men? Dr. Leanne Burnham explains her research studies where they looked specifically at the role of stress in prostate cancer, tumor aggressiveness, and Black men — and also shares research about cortisol levels in African American children.

See More From the Prostate Cancer TelemEDucation Empowerment Resource Center

Related Resources:

 

What Are Some Hereditary Factors Impacting Prostate Cancer Patients?

Top Tips and Advice for Prostate Cancer Patients and Caregivers Navigating Treatment

Should Prostate Cancer Screening Happen at an Earlier Age for Certain Patient Populations?
 

Transcript:

Dr. Leanne Burnham

I have a few publications that look at the role of stress and prostate cancer, tumor aggressiveness, and Black men. And so, I looked at Black men specifically, because I have wondered if Black men who maybe were exposed to more stressors in their lifetime if that had any correlation to Black men getting prostate cancer earlier in their life and getting a more aggressive disease. And so, there were very realistic ways that we were able to look at that in the lab and then also in collaboration with public health colleagues that I have. Because what we know there are studies that show that African American children experience more stress, and their cortisol levels in their bodies are effective much earlier than any other race, and their studies that show the distress begins in the daycare setting based on discrimination that they may have from the adults that are taking care of them in that setting. And so, imagine cumulatively how that looks, and so we have ways that there are validated scales to assess levels of stressors that people have been exposed to. So that could be…what are your finances looking like? Have you been affected by incarceration yourself or anyone in your family? Have you experienced the death of a loved one? Has your home been broken into recently?

There are all kinds of, there are hundreds and hundreds of questions, and we can get to the root of how much stress has somebody been exposed to. And we know that unfortunately, African Americans in this country are exposed to more of these stressors than other demographics, and so what we did was look at the elevated stress, we could look at the cellular level and see, now if we’re growing prostate cancer cells, so that’s what I did. I was growing cancer cells in the lab that were from Black patients and white patients, and I would expose them to stress hormones in the flask, or maybe you like to think of it as kind of like a petri dish, but in the flask where the prostate cancer cells were growing. I would treat them with stress hormones, and then I would look and see do the cells grow differently, do they express genes and proteins differently based on race? And what I found very surprisingly, disturbingly, whichever adverb you want to use, that the African American prostate cancer cells, when they were exposed to stress hormones, the tumor cells became more aggressive, and they up-regulated genes that we know prime a patient to resist therapy.

So, the genes that were up-regulated in these prostate cancer cells are genes that we know, let’s say if a patient were to get chemotherapy, that patient would be more likely to fail that chemotherapy early, which is a terminology we call chemo resistance. And so those are studies right now that have just sort of, they’re newer to the forefront looking at stress and tumor aggressiveness. But there are studies going on nationwide right now involving thousands of African American men participants, where we are looking at the role of stress and what that does in terms of prostate cancer, aggressiveness in Black men specifically, and seeing what we can do to address it. But first we have to acknowledge that the problem is even there, a lot of people don’t think the problem is there, but we are scientists, we think the problem is there. So, we have to get the data to show the public that the problem is there, and then we need to really address the systemic racism that leads to this elevated and chronic stress that other demographics don’t have to deal with, because it’s literally leading to increased disease and increased health disparities. And if that’s something that we can change at some very basic levels, then that will improve health overall.

Will Telemedicine Mitigate Financial Toxicity for Prostate Cancer Patients?

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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

Related Resources:

 

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.

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. 

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

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.

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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How Can a Prostate Cancer Social Worker Help You?

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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.

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

Related Resources

How Can a Prostate Cancer Social Worker Help You?

Why You Should Speak Up About Your Prostate Cancer Care

Caregiver Support: Taking Care of YOU

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.

What Do Prostate Cancer Patients Need to Know About COVID-19?

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What Do Prostate Cancer Patients Need to Know About COVID-19? from Patient Empowerment Network on Vimeo. 

Due to COVID-19, many patients with prostate cancer must follow new guidelines to receive care. Dr. Alicia Morgans, a hematology and oncology specialist, explains precautions patients should take and the role telemedicine plays in prostate cancer care.

Dr. Alicia Morgans is an Assistant Professor of Medicine at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University.

See more from The Pro-Active Prostate Cancer Patient Toolkit

Related Resources

 

Are You Prepared for Your Prostate Cancer Appointment? Expert Tips

Why You Should Speak Up About Your Prostate Cancer Care

Prostate Cancer Treatment Decisions: Which Path is Best for YOU?

 

Transcript:

Dr. Alicia Morgans:

Men with prostate cancer, like every patient with cancer, do need to take precautions because of COVID, but the degree of caution that they need to take really depends on a couple of factors. One is probably that individual’s age, with older people being more susceptible to having severe complications related to COVID, especially if they have other medical conditions like COPD or lung disease or heart disease with a history of things like heart attack or stents in the heart. Things like diabetes can even increase the risk of having complications, according to some studies, for people with cancer. So, these are things to think about. Comorbid illness and certainly advancing age.

The other thing that I always think about is what kind of therapy are you getting as a man with prostate cancer? Are you getting something that really is only affecting hormones, like lowering testosterone levels or blocking testosterone signaling? That’s the male hormone. Hormonal treatments don’t suppress a person’s immune system. So, they don’t change the way that an individual’s immune system can attack the COVID virus and protect them from that illness. And those kinds of treatments are not as dangerous to use in a pandemic like we’re experiencing now, because they don’t affect a person’s ability – their innate and normal ability – to fight off the disease.

Things like chemotherapy, on the other hand, do suppress the immune system. They make it difficult for the immune system to fight things like that SARS virus, SARS-CoV-2, that causes COVID-19, because it suppresses the immune system such that a patient can’t mount the normal response that he would have against that virus if it came into his body.

When we don’t have an immune system, we can be more susceptible to things like that SARS-CoV-2 virus that causes COVID-19, but we can be susceptible to things that we would find in our normal environment and sometimes even to infections from bacteria that live in our body all the time. So, things like chemotherapy can be challenging whenever you take them. They can be incredibly effective against cancer. And so, it’s always this trade-off.

And if it’s recommended to you, you can get it safely, but taking extra precautions with, of course, washing hands, wearing masks, but also, probably, really still socially distancing even though some of the restrictions in most of the United States have lessened. If you’re on chemotherapy, I would still recommend social distancing and staying out of public places, because you do not necessarily have the immune system that you would normally have to protect yourself from the virus.

Telemedicine has been great for men with prostate cancer when they don’t necessarily need to come in to be seen. This can be really helpful, especially between visits where people are getting injections that they get to lower testosterone as androgen deprivation therapy. If that injection is due every three months or four months, but your doctor wants to check in on you every six weeks or eight weeks, having a telemedicine visit at that interim visit can be really useful so you don’t have to come all the way into the clinic to see the provider.

They can even be useful if you do need to get the injection or you do need to get lab work, because you can get those procedures and then go home and still be safe not sitting in a waiting room, not sitting in a doctor room. And the doctor can usually call and have that telemedicine visit.

For men who have been treated and are simply having their PSA followed because they’ve had a prostate surgery or have had radiation to the prostate and are believed to be cured, as long as they can get that lab work done, the telemedicine visit gives them the opportunity to get the guidance of their doctor who has looked at their lab work, without actually going in to see that doctor in person and potentially put themselves at risk of getting an infection in the in the clinic or the hospital setting.

So, telemedicine is a way for us to really protect our patients and stay engaged while we’re not seeing them in person. But it is still important to do the telemedicine and not just say I’m not going to do anything. And it will be important at some points for many men with prostate cancer to come in at least to do lab work or to get their injections if that’s part of their treatment plan to make sure that they are still being monitored despite the pandemic.