Tag Archive for: anxiety

Anxious From CLL Watch & Wait? How to Cope.

Anxious From CLL Watch & Wait? How to Cope. from Patient Empowerment Network on Vimeo.

Many CLL patients who are put on “watch and wait” following a diagnosis. Dr. Catherine Coombs explains this approach and provides advice on how patients can cope with the emotional impact of waiting to treat their disease. 

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

See More from Thrive CLL

Related Resources:

CLL Treatment Approaches: What Are the Types?

Signs It Is Time to Treat Your CLL

Signs It Is Time to Treat Your CLL

Refractory vs Relapsed CLL: What’s the Difference?

Transcript:

Katherine:

What would you say to a patient who has a lot of anxiety about having to wait for treatment? 

Dr. Coombs:

The first thing I would say is that anxiety is normal. More often patients are anxious than not because it’s really hard to be told you have a leukemia and that we’re not going to do anything about it. I think that’s really hard to hear. The way that I try to counsel people is that my role as the doctor is to do no harm. If you have a leukemia and there’s no proven way to make you live longer by giving therapy early on, if you’re in that early stage of CLL where you’re asymptomatic, by offering therapy, all I could do is make you worse.  

I could give you a new side effect, I could add a new cost burden. Until I have data to prove that that’s going to make your life longer, which we do not have yet (maybe that will be different five to 10 years from now, but we do not have that yet), I could only hurt you. So, that’s not what I want to do. I want to have you live and thrive.  

The better thing to do, based on what we know now and what we know our therapies can and can’t do is to do the watchful waiting. But the anxiety is normal. Depending on how severe the anxiety is, I have had patients meet with – at least at UNC we have something called the Cancer Center Support Program, which is a group of psychiatrists, psychologists, therapists that can help talk over what it means to have a cancer diagnosis and not necessarily need therapy.  

Then I also provide education on the other health issues that can come up as part of being a CLL patient even on that watchful waiting program. The thing that we talk about the most is the increased risk for infections, which in the era of the COVID pandemic is a major concern. Luckily, we have a lot of ways to decrease the health risk for COVID, whether it’s due to the administration of vaccines, or monoclonal antibodies, which I think we’ll talk about more later.  

There’re a lot of ways that people can live with it. I do think the anxiety is normal. At least in my own practice, I’ve found that most of the time the anxiety lessens with time. Because it becomes a part of who you are. It doesn’t have to be all of who you are: people can live their lives largely the way they did before with a bit of extra knowledge about things that can come up in the future but may never come up at all.  

How Does Stress Correlate to Our Physical Ailments?

How Does Stress Correlate to Our Physical Ailments? from Patient Empowerment Network on Vimeo.

What are the effects of stress, anxiety, and depression on physical health? Dr. Nicole Rochester and Dr. Broderick Rodell discuss how personal experiences and environmental conditions can impact patient health and a prostate cancer study that examined prostate cancer cells in Black patients.

See More From Rx for Community Wellness

Related Resources:

Advice From Cancer Survivor to Better Whole Person Care

Why Is It Important to Address Whole Person Care?

Why Is It Important to Address Whole Person Care?


Transcript:

Dr. Nicole Rochester:

We know that stress and anxiety and depression and all of those things impact your physical health, and as I said earlier, I think traditionally, there’s been this ridiculous disconnection between our minds and our bodies, and we know a lot more now, in fact, there’s a study, there are many studies, but there’s a study specifically looking at prostate cancer by Dr. Burnham, a researcher. And what they found in this study is that they looked at prostate cancer cells from African American patients and white patients, and when they treated these cells with stress hormones, they saw that the Black patient’s prostate cells would begin to up-regulate the genes and the proteins that are known to make that cancer more resistant to therapy. And so it starts to look at the role of stress and stress hormones, and we know that there’s increased stress among minority communities, among… sorry, urban communities, those who are otherwise disenfranchised, so from your perspective, can you just share a little bit about the connection between stress and physical illness and maybe how you approach that in the work that you do?

Dr. Broderick Rodell:

So, these various patterns we don’t operate, we have a framework that we all operate from, and it’s beneath the surface of our conscious awareness. And so our subconscious mind operating system is there, but that operating system comes from our conditioning, we’re conditioned by our families, by our local communities, our societies. And so, the various structures that are in place are facilitating our conditioning and from our conditioning we…that our conditioning creates our perspective, the framework that we operate from, that’s determine…that’s going to determine how we relate to our experiences. And how we relate to our experiences can be gracefully, or it can be stressfully, just to put it in those two different terms, and so that stress that is created based on how we’re relating to our experiences has a historical perspective, and so we have to address those issues. We can address our familial issues that has a historical relationship and say that maybe the relationship that my mother and father or grandparents had towards their own health is not necessarily to be the most optimal way to do that. And they may have had those ways of relating to their experience, based on their conditioning, based on the suffering that they’ve experienced, environmental conditions that were conducive for that mental framework that they’re operating from, and so we have to work towards transforming that, and again, the place where we have the most power in ourselves, “How can I change myself?”

I have to advocate for myself, and so how do we increase that by increasing our education and learning about ourselves and learning about our mental models that we’re using to relate to our experiences and transforming those mental models to reduce unnecessary stress and tension? Because when we’re under unnecessary stress, we have our epinephrine cortisol, these hormones that are increasing in our body, that’s going to suppress our immune system. It’s going to cause damage in our blood vessels, organs are not going to function optimally, and I think that we’re going to keep finding out more and more about this. I was interested, as you hear that about the prostate, prostate cells in African Americans, why would that be the case? You’ve got generations of hyper-vigilance for historical reasons, cultural reasons, or social reasons. Then, of course, that’s going to get passed on from generation to generation, a sense of hyper-vigilance, a sense excessive amount of stress hormones was floating around in the bloodstream, and it’s going to have a significant influence on how the body is capable of dealing with various illnesses – be it cancer, be it cardiovascular disease, or any other disease that’s associated with, or probably all disease that’s associated with stress these days.

In particular, with cancer it’s very interesting, that relationship and why are these cells dividing and rapidly producing in the way that they’re doing, and how is that related to stress? I don’t think it’s…no, simple relationship there. You can’t just say, “Stress causes cancer.” I’m not saying that at all. But there is a correlation, there is a relationship, and if the thing that we can tackle, we can’t change our genes, but what we can do is change our relationship to our experience. Transform that to reduce the amount of stress or suffering and maximize well-being, and that’s the kind of work that I try to focus my attention on and what comes out of that is, “Okay, I need to work on how I relate to my experience,’ but also “How do I create favorable conditions in my internal system, in my body through the food, in through the exercise that I do, through the literature and I expose myself to, etcetera?”

MPN Patient Shares Importance of Understanding Benefits of Professional Therapy

MPN Patient Shares Importance of Understanding Benefits of Professional Therapy from Patient Empowerment Network on Vimeo.

Myelofibrosis patient Julia Olff shares her experience with seeing a professional therapist via telemedicine as part of her MPN care.

See More From the MPN TelemEDucation Resource Center

Related Resource:


Transcript:

Julia Olff:

When I was diagnosed with myelofibrosis, I learned how important it was to continue therapy, so I had already started to see a therapist several years before that for a set of long-term issues in my life. But what I found over time, and I continue to find is the therapy has really helped me cope with not just some of the parts of my personal life that I’m still working through, but really helps me having a chronic illness, and I know from attending patient conferences, reading about myelofibrosis that there is…for one, a significant population of folks who suffer from anxiety with myelofibrosis. And that’s true for other blood cancers and chronic cancers, where there’s this, that there are ups and downs where you’re going through a period of stressful treatments, possibly followed by periods of monitoring or less treatment, and there’s always that fear of or worry about what may happen next, when might I develop a more serious mutation that will affect my prognosis, could I progress any time? Or there’s a smaller percentage of folks with myelofibrosis who can develop acute myelogenous leukemia, that’s always there. And I think therapy really helps for those sorts of outlook, long-term mindfulness, living in the present and gaining perspective about some of those fears. And I think the other part of therapy that’s so beneficial as it relates to having myelofibrosis is kind of learning to cope on a day-to-day basis, learning to think about yourself and your self-esteem that can get lost when you are feeling unwell for long periods of time. I’ve had months where I was deeply fatigued in terrible pain and doing a lot less and having to say no to my kids, I can’t do that, I can’t go here.

I remember going to back-to-school nights for my kids when they’re in high school, and I’m moving so slowly that I’m getting a teacher asking me, “Are you okay, do you need help?” And that can affect your sense of self, especially as you give up activities or work. I’ve reduced my workload significantly, and all to say is there is this dynamic of who you are as a person, that therapy I’ve found can help me get through so that I don’t lose who I am that helps really sustain my mental outlook.

MPN Patient Q&A: How Did You Avoid Obstacles to Receiving the Best Myeloproliferative Neoplasm Care

MPN Patient Q&A: How Did You Avoid Obstacles to Receiving the Best Myeloproliferative Neoplasm Care from Patient Empowerment Network on Vimeo.

 In 1991, there were few myeloproliferative neoplasm (MPN) experts. Many MF, ET, and PV patients were misdiagnosed and often received dismissive care. MPN patient Nona Baker shares how her diagnosis with two MPNs – essential thrombocythemia (ET) and polycythemia vera (PV) changed her life.

This program provides one patient’s perspective. Please talk to your own doctor to make healthcare decisions that are right for you. 

See More from Best MPN Care No Matter Where You Live

Related Resources:

How Do I Best Communicate My Concerns Without Feeling Dismissed


Transcript:

Dr. Nicole Rochester:

Hello and welcome. I’m Dr. Nicole Rochester, I’m a physician, a health advocate, the CEO of your GPS Doc, and the host for today’s Patient Empowerment Network program. I’d like to start by thanking our partners, MPN Alliance Australia and MPN Voice for their support. Today we’ll be doing an MPN patient question and answer session, talking directly to a patient living with an MPN for over 30 years. The goal is to help learn how to avoid obstacles to the best MPN care. Following this program, you will receive a survey and we’d be delighted to get your feedback, this helps inform future programs that we produce, please remember that this program is not a substitute for seeking medical care, so please be sure to connect with your healthcare team on what the best options may be for your medical care. I am proud and honored to introduce Nona Baker. Nona was diagnosed in 1991 with essential thrombocythemia, also known as ET, and then in 2004 with polycythemia vera also known as PV. Nona is a staunch patient advocate and the co-chair of MPN Voice where she counsels MPN patients around the world on how to connect to the best care. We are so happy that you have tuned in to learn about Nona’s journey and tips that she has for you and your family as you face an MPN diagnosis as well as how to navigate your care and gain clarity on your path to empowerment. Thanks for joining us, Nona.

Nona Baker:

Thank you and thank you to Patient Empowerment Network for giving me this opportunity to share my experience and hope for other patients as they navigate their way through the MPN diagnosis and treatments.

Dr. Nicole Rochester:

Wonderful, so Nona in 1991, when you were first diagnosed, there were very few experts in MPN. Many MF, ET, and PV patients were misdiagnosed, and they often received dismissive care, because there were just so many unknowns at the time, and sadly, this was part of your journey and we’re going to learn a little bit more about that shortly. We received a number of questions about how you navigate treatment early in the course of your diagnosis, your initial diagnosis was actually more of an assumption, and I’d love for you to briefly speak more about that.

Nona Baker:

Thank you. It was a fairly scary time, I have to admit because so little was known about MPNs or MPDs in those days, myeloproliferative disorders, blood disorders, and my journey was very much a checkered journey, starting with being sent to an orthopedic surgeon, who I then had to go into physiotherapy for painful feet and insoles in my shoes. I was sent to a rheumatologist who took one look at my blood work and that’s when he said, I think you’ve got an alcohol problem. My husband actually was sitting beside me and he said to him, he said, I think you’ve got that wrong, she doesn’t really drink. And the doctor then turned around, they said, Well, maybe the machines have got it wrong, so that was quite a scary thing, it was…I knew there was something wrong, but I’d been what we call here around the hoses, and it wasn’t until I…the rheumatologist asked for a new set of blood work that he called me two days later that I’ve made an appointment for you to see a hematologist and his call was on a Saturday morning on Monday, two days later, and then I can tell you I was really scared.

Nona Baker:

Really, really scared. The other thing it did is I kind of didn’t trust what I was being told, the one thing I was told was there were only 12,000 known patients in the country, I’m not sure that gave me a great deal of confidence, but yeah, it wasn’t an easy start it was very scary.

Dr. Nicole Rochester:

Wow, I appreciate you sharing that, and I’m sure that many people with MPNs and other rare diagnoses can relate to that journey. Well, let’s take a look at your brief vignette that sheds a little more light on your unconventional path to care…let’s watch.

Wow, well, the good news is Nona, we have come a long way, but of course, we still have a ways to go. Would you agree with that?

Nona Baker:

I couldn’t agree with that more. I hear so many patients through my work with caring forums that we do from London, that go out around the world who go and don’t get the right information and get quite scared still by what’s going on, and I think things like we’re doing now today help empower people to know that they can actually claim ownership of their MPN and ask for and have a right… Well, certainly in this country to ask for a second opinion and get to the right care to meet their needs.

Dr. Nicole Rochester:

Absolutely, and you are speaking my language as a health advocate, I am always talking with people about the importance of using their voice, standing up for themselves and seeking information, and asking questions, so I love that you have opened our program with that. So with that, let’s go ahead and get our questions, the first question comes from Susan, and Susan asks, “After the initial shock of your diagnosis, were you worried about limited treatment options and specialists, and then what was your next step?”

Nona Baker:

Was I worried? Well, I was just generally anxious because it’s this thing of not being in control of one’s body and having to surrender that control to another person, so that’s the scary bit for me, and then I did something a little bit stupid in hindsight because it was the early days of the internet, man, I did Dr. Google, not a good plan, because particularly in the very early days, there was some really, really sort of dreadful prognosis is almost sort of go from right, you will…which, of course, here I am, 30 years on. And so, I think that I would be very cautious even now in using Dr. Google, I would go to safe sites where they are medically monitored because I think a little knowledge can be very dangerous.

Dr. Nicole Rochester:

That is so true. And I just want to highlight that because in medicine, we often kind of jokingly talk about Dr. Google, but it really is a phenomenon, and while there’s this balance of patients with rare diseases being able to find information and empower themselves, but then as you mentioned, known a lot of the information on the internet has not been vetted, some of it is not scientifically accurate, and it can literally have you pulling your hair out as you read these accounts and start to really create more worry as opposed to creating action stuff. So, I appreciate you sharing that.

Our next question is from Alice and Alice says, “I’ve noticed among women, minority groups and underserved communities, that there’s often a dismissive tone or atmosphere when you speak up and share your concerns,” and she wants to know, “Nona, do you feel that being a woman played a role in your initial diagnosis?” And she also like to understand how to communicate concerns with the care team when you feel that you’re being dismissed.

Nona Baker:

That’s an interesting question, I have to be honest and say I didn’t experience that, but I’m well aware of that. And it goes on, and it’s really disempowering to feel that, so I have huge empathy to hear that. I think if I had experienced it, which I obviously didn’t experience it, my key tip here would be when going for an appointment with a clinician, take a notebook and a pen and write down what you want to ask them, and write down their answers, and preferably if you can take somebody with you, because then you have that opportunity afterwards to digest what you’ve been told, and that in itself is empowering because you can then make further choices.

Dr. Nicole Rochester:

I love that, Nona. Also, advice that I always give to clients, and you’re right, having someone with you and writing things down is so important, especially in these situations where you’re getting a diagnosis, there’s a lot of uncertainty. We know that a lot of the information that’s shared in medical appointments goes in one ear and out of the other, particularly if we’re anxious or concerned or worried, so having that second person in the room is so incredibly important. I appreciate that advice. All right, our next question comes from Charles. He says, some patients living with two MPNs have said that they’re living with two cancers,” and he goes on to say that he’s been confused as to whether MPNs are cancers or blood disorders. Do you feel comfortable speaking to that and setting the record straight based on how you counsel other advocates in this space, he also mentions that his wife is living with ET and PV as well, and that sometimes the language can be very confusing.

Nona Baker:

I absolutely agree. And interestingly, we did a virtual forum for…at the weekend and one of the research projects, there has been only impacting on families, and it’s very interesting that the language can be very…again, disempowering the word cancer, I think the conventional word cancer is almost…it’s a deaf nail, but actually, when I challenged on the medication, I had the word cancer was used, I went to my primary GP physician, and I asked him,” nobody’s told me I’ve got cancer. What’s this?” Because at the time, it was a blood disorder and it said cancer, and he said,” Do you know what cancer means, Nona?” He said, “It means a proliferation of cells, but these are confined to the bone marrow.” But what happened for us as patients, as we started off, or certainly I did with a blood disorder, and then the World Health Organization, because of this perforation of cells re-classified that as a neoplasm, a neoplasm is just another word for cancer. So, it hasn’t changed since I was diagnosed, but the words have changed. And the scariest is in the word neoplasm suddenly here in the UK, it’s been an advantage, because we have access to much better drugs than we would have had if we’ve just been a disorder. I can’t speak for other health authorities or other countries, because each country is different, but I think it’s just simplifying it.  Simplifying the language. That’s empowering in itself.

Dr. Nicole Rochester:

I agree, and language is everything, and I think the key is what you said, that while there is a proliferation and while some may use the word cancer that it is confined, and I think that that provides a lot of clarity. Alright, we also have a question from Julie. Julie says, “I was given the run-around early on in my journey and wasted valuable time,” and she wants to know, what are some questions or actions to take at the outset when ruling out MPNs?”

Nona Baker:

That’s a difficult question because I think everybody is different and every health service is different. I think if you’re in an area where the clinicians don’t necessarily know too much about MPNs, that can be problematic. We’re a small country here and we have access to some really good hospitals that specialize in MPNs. I think, again, it’s going back with your piece of paper saying, can we rule out that I’ve got an MPN and I’ve read about MPNs, I have the symptoms, whether it’s fatigue or whether it’s itch for PV or whatever the symptoms are, and I’ve seen that that can be a symptom of an MPN. And again, take a piece of paper, and say can we rule that out? You know, I think that’s empowering.

Dr. Nicole Rochester:

I agree. Nona and I think when counseling patients who have had misdiagnosis or long road to accurate diagnoses, what you just said is key, and a lot of times it’s a matter of opening up the minds of your physicians and your healthcare team, and like you said, if they’re not familiar with MPNs, then they may go down a path of giving you a different diagnosis, but if you’ve done a little research or if you have some concerns, just saying, could it be this…I know that you think I have this condition, but based on what I’ve read, based on what I’ve learned, could it be an MPN? And a lot of times just that suggestion is enough to kind of shift the conversation, so I think that’s wonderful advice. Alright, our next question comes from Edna. And Edna says that in your in yet you stated that you were diagnosed at 41 and that you are a busy mom and that you were working, and she wants to know, “How did you share this diagnosis with your children and how did it impact your work in your career?”

Nona Baker:

It’s a very interesting question, and I think my children, because I had sort of my mom’s painful feet and I have packets of mushy peas that used to be put on my feet because they were painful because of the obviously thick blood, and my younger son has done a lot of fundraising for MPN Voice, and he talked about how as an 8-year-old, he’d grown up with me having these symptoms that I haven’t done much about, and I know I’ve always taken the view for me, and this is only for me, that I don’t let my MPN define who I am. You know, I think it’s part of my life. It isn’t my life, because my fear would be after that initial anxiety and fear that if I allowed it to take over my life, it would actually really impact my younger…my young children…in terms of my work, I only work part-time. You know, the other thing is, yes, I got a lot of fatigue, but I think what I’ve learned over the years is to put your hands up and say, you know, I’ve hit a wall whereas I just take five minutes.

Nona Baker:

Just take that time. Whereas sometimes it’s difficult when you’re a mom with young children, and I think now, people tend to explain it a bit to their young children, when mom’s tired, it’s not because it’s anything you’ve done it, because I remember patients describing it to have children is…it’s like a car, when the oil in the car gets too thick, the car slows down and sometimes the car needs to stop, and she equated her blood as the oil in the car that sometimes it just slows down and then has to stop gets a bit of refueling, I thought that was a good definition for young children.

Dr. Nicole Rochester:

I love that, I love that, and I’m a pediatrician by training, so I love putting things in clear terms for kids, and I think that’s really important to just make it simple for them. I also really like what you said, Nona about the self-care part, I think that can be really difficult sometimes for even women who may not have chronic diseases, but certainly for women and moms who have chronic diseases and feeling that, feeling guilty when they take time for themselves, even if it’s in the context of their illness, and so needing to rest and explaining that and normalizing that mom needs to take a nap, I think is incredible, and I love that your son is involved in the advocacy work that you do for MPN. All right, we have a question from James. James says, “Are there specific lifestyle changes that you may, following your diagnosis that brought relief to any symptoms that you were having?”

Nona Baker:

Well, the first change I had to make was I used to smoke, and then my hematologist said to me that affects the red cell count, and that was the incentive to absolutely give up smoking there, and then that was my first lifestyle change, and I haven’t regretted it for a single day. Other lifestyle changes, not really, other than just becoming aware that you know to fight fatigue doesn’t help, sometimes you have to surrender to it, but definitely give up smoking and I… you know, I think that…well, nowadays people don’t smoke, but we’re talking 30 years ago, so…yeah, 30 years is pretty well since I’ve had a cigarette…

Dr. Nicole Rochester:

Well, kudos to you for giving up smoking that…that is a challenge. So that’s wonderful. All right, we have a question from Janet. Janet says, I have noticed that many MPN patients develop a second MPN over time, and she wants to know. She wants to know, “Were you surprised about your PV diagnosis over a decade after your first diagnosis, or is this something that you were perhaps prepared for by your medical team?”

Nona Baker:

Well, my second diagnosis came by chance because I had a problem with fibroids, which necessitated having a hysterectomy, which so, the natural venesection was taken away, and then it evolved to a… I don’t know whether that’s the reason, but then I was diagnosed with PV, which means that I have PV with high platelets now is I think the way in my hematologist describes it, but it’s certainly under control with the medication and with venesection from time to time. So, was I surprised? I don’t think after my journey, I don’t think anything surprised me really, I sort of…I think, again, I took ownership of it and just got on with it, really.

Dr. Nicole Rochester:

Excellent, thank you, Nona. As we prepare to close, is there one tip or one piece of advice that you would like to give to individuals with MPN?

Nona Baker:

Don’t be afraid to ask a question, because I think living with a fear of something is really not good for one’s general health because fear and anxiety can, I think, impact a physical illness if you’re living with a lot of fear in a lot of anxiety, and I know this is easy for me to say because I’ve had a relatively easy journey, and I’ve met patients who’ve had a really, really tough time and I know through Pan-voice, people that were diagnosed either shortly after me or some before who had a bone marrow transplant, you know, their life is obviously better, but my goodness…what they went through to get where they are now. But I think the whole thing that we’ve been talking about really is just find that voice, and even if it’s not with the clinician, share it with a friend, you don’t sit on fear, share it with a friend, have a body, have an ally, and one of the things we do at MPN Voice, which actually I think has helped enormously, is we have a buddy program there where you would be…you will be matched with somebody who has been diagnosed for at least two years that can buddy you along emotionally, because I don’t underestimate the emotional impact that that affects a lot of us.

Nona Baker:

And I think we need to have that voice to say, yes, it is a bit of a shock, but I’m not going to let it define me and wreck my life. If you can do that, I think life will be easier.

Dr. Nicole Rochester:

That is awesome. Don’t sit on fear. I’m going to carry that with me. Nona, I appreciate that. Well, that’s all the time that we have for questions. Nona, I want to thank you for taking this time to share your story with me and for everyone watching, and just to recap, we’ve learned that avoiding obstacles to the best MPN care means remembering that everyone’s journey is going to be different. We learned the importance of not allowing your disease to consume your life, and we’ve also learned the importance of using your voice because we are truly our own best advocates, it’s these actions that are key to staying on your path to empowerment. Thank you so much again for joining us, Nona, this has been amazing.

Nona Baker:

Thank you for giving me the time to speak to the patient community.

Dr. Nicole Rochester:

I’m Dr. Nicole Rochester, thank you again for joining this Patient Empowerment Network program. 

MPN Patient Q&A: How Do I Best Communicate My Concerns Without Feeling Dismissed?

MPN Patient Q&A: How Do I Best Communicate My Concerns Without Feeling Dismissed? from Patient Empowerment Network on Vimeo.

What can myeloproliferative neoplasm (MPN) patients do to improve communication when the feel like their concerns aren’t being heard? Watch as MPN patient Nona shares her advice for preparing for appointments, and health advocate Dr. Nicole Rochester offers advice on how to help calm anxiety at appointments.

This program provides one patient’s perspective. Please talk to your own doctor to make healthcare decisions that are right for you. 

See More from Best MPN Care No Matter Where You Live

Related Resources:

 


Transcript:

Dr. Nicole Rochester:

Our next question is from Alice and Alice says, “I’ve noticed among women, minority groups and underserved communities, that there’s often a dismissive tone or atmosphere when you speak up and share your concerns,” and she wants to know, “Nona, do you feel that being a woman played a role in your initial diagnosis?” And she also likes to understand how to communicate concerns with the care team when you feel that you’re being dismissed.

Nona Baker:

That’s an interesting question, I have to be honest and say I didn’t experience that, but I’m well aware of that. And it goes on, and it’s really disempowering to feel that, so I have huge empathy to hear that. I think if I had experienced it, which I obviously didn’t experience it, my key tip here would be when going for an appointment with a clinician, take a notebook and a pen and write down what you want to ask them and write down their answers. And preferably if you can take somebody with you, because then you have that opportunity afterwards to digest what you’ve been told, and that in itself is empowering because you can then make further choices.

Dr. Nicole Rochester:

I love that, Nona. Also, advice that I always give to clients, and you’re right, having someone with you and writing things down is so important, especially in these situations where you’re getting a diagnosis, there’s a lot of uncertainty. We know that a lot of the information that’s shared in medical appointments goes in one ear and out of the other, particularly if we’re anxious or concerned or worried, so having that second person in the room is so incredibly important. I appreciate that advice.  

How to Regain Self-Esteem and Body Confidence After Cancer Treatment

Getting through cancer treatment is a huge accomplishment. The moment you’re finished with your final session, it can feel like you’re on cloud nine. You’ve done something incredible.

Unfortunately, it may not take long for those positive feelings to waver.

Cancer treatments are often intense and can cause noticeable changes to your body. While those changes are necessary to fight back against the disease, many can linger once treatment is done. That can leave you with low self-esteem. You might even start to struggle with mental health conditions like depression or anxiety1.

Whether it’s healing from major surgery, dealing with hair loss, weight fluctuations, or a change in your sex drive, it’s not uncommon for the after-effects of cancer treatment to make you see yourself differently.

So, how can you regain confidence in your body after your treatment journey is over?

Common Body Image Issues

Going through cancer treatment can make you feel strong on the inside, but lose confidence in your external appearance. Because both the disease and treatment can cause your body to change, it’s not uncommon for your physical appearance to affect your self-esteem.

If you’re feeling “off” after your treatment or you’re struggling with your self-confidence, it could be the result of how you see yourself when you look in the mirror. Some of the most common signs of body image issues are:

  • Your feelings about your body are affecting other areas of your life
  • You speak negatively/harshly about your image
  • You avoid seeing your own image as much as possible
  • You obsessively try to change your image with makeup/grooming

Unfortunately, we’re currently living in a period that makes it harder than ever to avoid your own image. If you’re working remotely, for example, you might be one of the 300 million people logging into Zoom meetings every day2.

The current remote culture has created some self-esteem issues of its own. Working from home can be beneficial for patients going through treatment or those in recovery. But, it’s not without its potential drawbacks.

Problems like Zoom fatigue and Zoom dysmorphia have come to the forefront for many people. Zoom dysmorphia, for example, is a condition that causes someone to develop self-image issues from looking at themselves on a screen. When you’re on Zoom meetings all day, it’s easy to start nitpicking your flaws or seeing things that others wouldn’t even notice. If you’ve recently gone through cancer treatment and are already dealing with body image issues, seeing a pixelated version of yourself on a screen can make matters worse.

So, what can you do if you’re struggling with any of these problems?

Explore Your Emotions

You might feel negative about having a negative image of yourself. After all, you just went through something life-changing and came out on the other side. But, one of the biggest mistakes you can make is ignoring how you really feel. By shoving your feelings aside, you’re putting yourself at risk for them to “bubble up” and explode later.

Instead, accept how you’re feeling. Accept the loss you’ve experienced when it comes to the way you used to look. It’s okay to feel sad or frustrated. It’s okay to grieve.

Once you’ve worked through those feelings, you can attempt to shift your mindset. Focus on the things you’ve been through and how they have made you stronger. What have you gained from this experience, and how have you changed positively?

If you’re having a difficult time focusing on the brighter side, lean on your support system. That can include:

  • Family members
  • Friends
  • Doctors
  • Support groups
  • Online forums

You can even talk to other cancer patients for advice about self-image3. The important thing is to remember you’re not alone. You undoubtedly had support with you throughout your treatment. That doesn’t just disappear because you’re cancer-free. Keep leaning on that support for help with your mental health and advice on how to keep moving forward.

Focus On What You Can Change

When it comes to your physical appearance, there are things you can and can’t control.  For example, if you lost your hair during treatment, you can’t make it grow back any faster. But, you can opt for a wig, or choose to wear hats when out in public. If your skin became dull and dry, you can’t change it overnight. But, you can use creams and lotions to bring back hydration and elasticity. If you experienced weight loss, you can purchase clothes that fit better for now, and work on slowly regaining the weight over time.

By focusing on the things you can control, you’re less likely to get frustrated. Most image issues you’ll face after cancer treatment are temporary. It may take a long time to get back to normal. But, you can take comfort in knowing most of them aren’t permanent.

When it comes to physical issues like surgery scars, they will typically fade over time, too. You can help that process with different creams and body butter. But, it’s okay to accept the fact that you may always have a scar or two. Instead of looking at those scars as something “ugly” or embarrassing, consider the fact that you get to stand there and see them. You made it through something that not everyone else gets to. A surgery scar is a sign of strength and victory.

In addition to changing what you can and accepting what you can’t, regaining confidence can come from leading a healthy life. Practice self-care every day. Develop healthy habits that make you feel good about yourself, inside and out. Get enough sleep, work out if you feel strong enough, and take time to relax each day.

Your body has been through a lot. While it’s understandable to feel self-conscious at first, realizing what it’s done for you can make you more accepting and willing to love yourself again.


Sources:

  1. Cancer patients left to cope with mental health problems alone
  2. Zoom User Stats: How Many People Use Zoom in 2021?
  3. Self-Image, Sexuality, and Cancer

Ways to Stay Connected with Loved Ones During Hospital Stays

The COVID-19 pandemic has changed so many things about the healthcare industry, including the way patients, providers, and visiting loved ones stay safe. Luckily, since January 2021, hospital admissions due to COVID-19 have decreased by 67%1.

But, for people with cancer who often deal with a weakened immune system and longer-term hospital stays, the threat of COVID is still very real, very scary, and very dangerous. Whether you’re in a long-term care facility or you’re able to be at home with the help of a caretaker, it’s crucial to be vigilant when it comes to keeping yourself safe and social distancing.

Unfortunately, that can lead to issues with your emotional and mental health. Isolation and loneliness have become real problems throughout this pandemic, and isolation has been shown to negatively affect the immune system and can cause mental health issues like depression or anxiety. A lack of interaction can even negatively impact how you respond to treatment in the hospital2.

So, what can you do to socialize with your loved ones while keeping yourself safe and socially distanced?

Take Advantage of Technology

While the pandemic hasn’t been easy on anyone, there is one silver lining to the fact that it came in 2020 — we have highly advanced technology to help us through it. Thanks to that technology, it’s easier than ever to stay connected virtually to the people you love.

Everything from scheduling daily FaceTime calls with your family members to having larger Zoom gatherings once in a while can help you feel more connected with everyone you care about. While video chatting isn’t the same as being with someone in person, it’s the next best thing. Thankfully, it still allows you to see expressions and feel a sense of “belonging” when you’re talking.

Technology also gives you the power to send text messages, make phone calls, and even find unique ways to connect with loved ones. You can play games together online, chat in messaging apps, or even watch a movie together, thanks to platforms like Teleparty.

By getting creative with your technology use, you can make the most of what you’re given and find unique ways to stay in touch, even when you can’t be together.

Be a Part of Big Events

Life goes on, whether you’re dealing with an extended hospital stay or you’re in a care facility that is unsafe to leave right now. Unfortunately, that might mean you have to miss out on some major events with your family and friends.

Again, technology comes to the rescue to make sure you can still be a part of big family moments. For example, if you want to go to your young relative’s birthday party but you can’t leave the hospital, consider talking with their parents about a virtual party. If your child is the one fighting cancer and has to stay in the hospital, a virtual party is an even better idea. It allows them to be celebrated while staying safe. Just make sure to:

  • Plan ahead
  • Choose a digital platform
  • Install the right software
  • Pick a theme
  • Send out invitations
  • Create a fun schedule

Other life moments shouldn’t be missed just because you’re in the hospital. Many couples have held “virtual weddings” or vow renewals over the last year, allowing family members and friends to “tune in” to their special event. Encourage your loved ones to utilize technology as much as possible, especially when they have an event planned. It will allow you to remain involved and be a part of everything while staying safe and healthy.

Seek Support

If you’re feeling lost and alone because you can’t be with your loved ones in person, it’s important to know that you’re certainly not alone in how you feel. But, letting stress and anxiety overwhelm you due to loneliness will only make matters worse. Additionally, it can impact your treatment and change your outlook in a negative way.

One of the best things you can try to do for yourself in times of isolation is to reduce your stress levels. Find things that relax you or utilize practices that are known to reduce anxiety, like:

  • Breathing exercises
  • Getting enough sleep
  • Exercising
  • Practicing mindfulness

Once you’re better able to manage your stress, don’t be afraid to seek out support in different or unique ways. Talk to your doctors and nurses that you see on a daily basis. Connect with other patients you might regularly see. If you’re in a care facility, take part in different activities that are offered.

You can also take advantage of technology once more by considering teletherapy3. If you’re truly struggling with loneliness and isolation, talking with a mental health professional can help. Telehealth has become increasingly popular throughout the pandemic, and online therapy is no exception. You can connect with a therapist from anywhere in the country without having to leave your bed. Or, consider joining an online support group for cancer patients. It’s a convenient and effective way to manage your mental health and combat feelings of loneliness while understanding that this pandemic won’t last forever.  Already, there is a light at the end of the tunnel. Take comfort in knowing that it may not be long before you can see your loved ones face-to-face again. Until then, keep these ideas in mind to stay connected and to fight back against isolation.


Sources

  1. https://www.cdc.gov/coronavirus/2019-ncov/covid-data/covidview/index.html
  2. https://www.nih.gov/news-events/news-releases/social-interaction-affects-cancer-patients-response-treatment
  3. https://www.apa.org/monitor/2017/02/online-therapy

Newly Diagnosed with Prostate Cancer? Consider These Key Steps

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

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

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

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?

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

How Can You Insist on Better Prostate Cancer Care?


Transcript:

Jim Schraidt:

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

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

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

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

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

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

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

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

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

See more from The Pro-Active Prostate Cancer Patient Toolkit

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

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

Newly Diagnosed with Prostate Cancer? Consider These Key Steps

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.

Will Telemedicine Improve My Quality of Life with CLL?

Will Telemedicine Improve My Quality of Life with CLL? from Patient Empowerment Network on Vimeo.

How do chronic lymphocytic leukemia (CLL) patients and care partners feel about the impact of telemedicine on quality of life? Watch as a CLL patient and care partner, Bob and Susan, discuss how easier access to blood test results affects patient emotions before and during remote office visits.

See More From the CLL TelemEDucation Empowerment Resource Center

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Transcript:

Susan Bottega: 

The role of telemed in terms of survivorship I think is a very, very interesting subject. CLL patients are living a very long life these days with the onset of the novel agents that are coming out. Quality of life becomes a very, very important subject for CLL patients. So much of their quality of life is diminished by the visits that they have to make into doctors’ offices.

The anguish that they spend the day before, the sleepless night that accompanies the doctor’s visit. I think that this is extremely important. You’re looking very possibly of at least two days taken out of your life, and if you’re making these visits on a monthly basis or bi-monthly basis or even tri-monthly basis, that’s a long period of time to take out of the span of your lifetime. And as we’re living longer, this becomes more and more important.

You want to have that quality of life, you want to be able to go on vacations. Your vacations can’t be postponed because you have a doctor’s appointment looming in the future. You can take your computer right along on vacation with you and share your vacation with your doctor.

Bob Bottega:

I like that.

Susan Bottega:

I think the anguish that you feel about blood tests is diminished by it. You don’t have to wait to get the results of your blood tests, your blood tests pop right up on your patient portal. You don’t have to sit there and wait in a doctor’s office until you see those results.

Once you see your doctor, you’ve already got your results and you’re calm about it, you’re relaxed because you know what the results are and you can discuss them without having to deal with the anxiety that comes with hearing, “Okay, my white blood cell count has gone up considerably, so how do I calm myself down to discuss this intelligently at this point in time when I’m emotionally so upset over it?” I think these are very, very important things about the quality of your life. How about you, Bob?

Bob Bottega:

I think you said it all.

Susan Bottega:

Don’t I always? (laughter)

Caregiver Support: Taking Care of YOU

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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Why You Should Speak Up About Your Prostate Cancer Care

Tools for Managing Prostate Cancer Fear and Anxiety


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

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

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?

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.

Is Laughter Really the Best Medicine? One Woman’s Mission to Help Others with MPNs

Is Laughter Really the Best Medicine? One Woman’s Mission to Help Others with MPNs from Patient Empowerment Network on Vimeo.

Could laugher really be the best medicine? Patient advocate Summer Golden explains how she uses comedy to cope with her myelofibrosis (MF) diagnosis and shares her mission to inspire others.

Summer Golden and Jeff Bushnell have been married for over 20 years. When Summer was diagnosed with myelofibrosis (MF), Jeff took on the role of care partner and advocate. Summer uses her years of theatre training and comedy to cope with her condition and help others, while maintaining positivity about the future.

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Transcript:

Summer:

When I was initially diagnosed after some other false starts with an MPN, I was kind of shocked because I’ve never really been sick, and I don’t take medications, but I didn’t think about it – that sounds crazy; I can’t explain it. I just figured I’d be okay, and the main thing – I didn’t wanna give up this theater.

You know how when you’re my age, people talk about nothing but their illness sometimes? I just never been into that, so it wasn’t part of my personality.

I started doing comedy two years ago because a friend of mine was taking a comedy class, and I went to her showcase, and I thought, “I should try that, even though I’ll never be funny, I have no jokes, and I don’t know what I would say.” But, I went, and I did comedy in clubs for a while, and then I didn’t – I don’t really like drinking and dirty jokes, so I kind of got away from it off and on, and then, when I got into doing it about my myelofibrosis, then I saw a purpose in it, so I went back to it.

I was thinking about whether my life was gonna be changed, how this was gonna change me, so I emailed my comedy teacher in the middle of the night, and I said, “Do comedians ever talk about cancer, having it?” And, he said, “Only if they have it.” So, I emailed him back and I said, “I’m coming back to your class,” so I did. He assigned everyone to be in a showcase. I was gonna do mine about cancer. It was six weeks, so I had to find humor. I don’t know how I find it. I just kind of see things.

I was shocked because I thought people were gonna hate it, and I was gonna quit, and then I’d invited my doctor and two friends, so I thought I’d better not just not show up. But, people came up and said they were inspired. I was just amazed because I mainly –I don’t go out of my way to think of – I do think of things that are funny, but it’s just – it’s a real thing. I try to keep my comedy real.

It’s helped me by being in control. I don’t pay much attention to the symptoms because I’m kind of over them.

Just helped me feel like I’m doing what I can do, and so far, it seems to be working, as long as I get enough sleep.

How do I think comedy could help other people who have health problems? I can tell you one way I thought to help somebody. I wanna start a class for people, but so far, there hasn’t been a lot of interest, but I think I could really help people doing that because I know how to write comedy.

If they really wanna do that, they would be a type of person that has humor, and they could do it, but you’ve gotta realize sometimes, people get a lot out of being sick. There are a lot of rewards, and so, they might prefer to have those rewards. For my way of thinking, if they wanna do humor, it’ll make a big difference, and if somebody wants to do it, they could call me, and I’ll help them.