Tag Archive for: emotional support

More Than Medicine | Breaking Barriers in Bladder Cancer Care

Dr. Randy Vince shares how the loss of his grandmother to kidney cancer shaped his perspective and approach to patient care. Drawing from his lived experience, he discusses the critical importance of addressing systemic barriers and ensuring patients, especially those who delay care, feel supported, informed, and empowered. Dr. Randy Vince

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What Are Common Bladder Cancer Myths and Resolutions for Underrepresented Patients?

Bladder Cancer Diagnosis and Treatment: Barriers to Timely Response

Bladder Cancer Diagnosis and Treatment: Barriers to Timely Response


Transcript:

Lisa Hatfield:

Dr. Vince, your grandmother’s experience with kidney cancer profoundly influenced your career path. And I’m sorry about that loss. I’m sorry to hear that.

Dr. Randy Vince:

Thank you. I appreciate it.

Lisa Hatfield:

How does that personal loss inform your approach to working with bladder cancer patients who may have delayed seeking care due to similar systemic barriers?

Dr. Randy Vince:

Yeah. So I’ll start by saying the experience of losing my grandmother, and if it’s okay, I just want to give a little bit of background to why she was so important to me is, you know, at a time when I was a teenager, you know, growing up, there were a lot of influences that at any given time, if I would have made a wrong decision, I would…I would have lost my life or spent the majority of my life in prison.

And this was, you know, both of my grandmothers, but specifically the one grandmother I lost to kidney cancer. Losing her again, kind of it started to shape my perspective in terms of how I would want to deliver health care as a physician. And it was because she was so influential, so influential in my life. And oftentimes, when I didn’t always do the right thing, she would be that person that would kind of bring me back and love on me and care for me. And so, it was very tragic losing her. And so, that experience shaped me in so many different ways that extend far beyond my career. However, when it comes to my approach as a physician, as a surgeon who treats cancer patients, I started to view my role in different lenses.

And so, I almost think of it as I have to have, I have different jobs when it comes down to helping patients navigate that cancer journey, right. So, we’re starting off, and I told you, I look at it as a spectrum in terms of, you know, screening, diagnosis, treatment and outcomes, or, you know, survivorship.  And so, the first job is just really as an educator, because I want my patients. I know the receipt of a cancer diagnosis is devastating, but I want my patients to understand everything about their diagnosis when they leave my office. I want them to be able to explain things to their family members and their loved ones and feel confident and knowledgeable when they explain these things about their diagnosis to their family members and loved ones.

So, first as an educator, second, as a consoler, you know, during these appointments, which may run longer than, you know, the typical doctor’s time frame that we’re supposed to take with appointments. And that’s fine. I don’t care about the time, I care about the patients. I take time to empathize with my patients. I want them to know that they’re not in this fight alone and that I’m here with them and that I will do everything in my power to help them along this journey, and that, again, I’m in this fight with them.

And the other thing is, oftentimes when we think of cancer, the psychological impact it has is it takes us right to, oh, my gosh, how much longer do I have to live? And for the vast majority of cases, a cancer diagnosis is not a death sentence. So, I want them to know that I’m empathizing with them, But I also want them to know that just because you have a cancer diagnosis does not mean that you only have six months left to live, which is what we traditionally think of, because a lot of people who we knew have cancers of different types had stage IV cancer, and that was the reason why their livelihood was cut short.

And then thirdly, that I’m a healer. I walk through all of the steps of the treatment journey with my patients and just try to make sure that they understand every step of that process. I always coordinate that care with my colleagues. So everything is done with a team approach. And all of the members of the team are dedicated to their well-being. And if it’s a patient that’s primarily my patient, I always let them know, you got a team of people who are here ready to care for you, and I’m going to be the quarterback for you.

So, I’m going to be the one who makes sure that everyone runs the play correctly and that there are no obstacles that stand in your way in terms of defeating this cancer and that nothing falls through the cracks. So, I think by wearing these different hats, you start to build a strong relationship with patients, which is most important to me, and then guiding them with support, knowledge, and compassion. So, that’s how that experience of my lived experiences, especially the experience of living with my grandmother, has influenced me when it comes to caring for patients.

Lisa Hatfield:

Dr. Vince, thank you so much for sharing that story. It’s important for the entire cancer community and for patients like myself to hear that. It clearly gives you a unique perspective and connection to your patients. Hearing that story and hearing the words consoler and healer as part of your, as one of your roles or two of your roles as a physician taking care of that patient. We all need a Dr. Vince on our cancer care team. So patients, when you hear that, just know that your physician is part of your cancer care team and they want to be your quarterback. And if you sense that that’s not the case, find a Dr. Vince.

Dr. Randy Vince:

Yeah. Thank you.

Small Cell Lung Cancer Care: Striking a Balance With Urgency and Shared Decision-Making

How can experts strike a balance between urgency and shared decision-making? Dr. Jacob Sands and Nurse Practitioner Stephanie McDonald of Dana-Farber share how they navigate the urgency of starting treatment while prioritizing shared decision-making in small cell lung cancer care. They explore the importance of open communication, normalizing patient overwhelm, and building trust through collaborative care. 

English Guide|Spanish Guide

See More from EPEP SCLC

Related Resources:

Enhancing Collaborative Decision-Making in Small Cell Lung Cancer Care
Enhancing Collaborative Decision-Making in Small Cell Lung Cancer Care
Turning the Tide: Clinical Insights Into a New Era of Small Cell Lung Cancer Treatment
Turning the Tide: Clinical Insights Into a New Era of Small Cell Lung Cancer Treatment

Helping Patients Navigate SCLC Treatment: Tools, Transparency, and Supportive Care

Transcript:

Dr. Nicole Rochester:

Staying where you just left with this degree of urgency, how do you balance the urgency of starting treatment with this shared decision-making? And are there any tools or any tactics that you can share with the audience?

Stephanie McDonald: 

So first of all, I think being honest and having transparency with our patients, I always really try to aim to provide really clear, open communication about their diagnosis and or summarizing their treatment options that were reviewed with them. I think, you know, I’m sensitive, but I want to be really honest in explaining kind of the nature of their illness and really that urgency to start treatment. But like I said, I also want to give space to be able to ask questions and express concerns.

I’m also open about the, you know, the advances in treatment associated with small cell lung cancer with, you know, improved response rates and a variety of clinical trial options. I know Dr. Sands could probably speak to that even more. But I really do think it’s important that we have these discussions with their patients, because it really is a different field now than it was even 5, 10 years ago when patients are diagnosed with small cell lung cancer. And so I think it’s really important to have a conversation with these patients about balancing treatment with their goals of care and really understanding what their goals are, what they find as kind of important to them, what’s important to their family.

But to be able to just speak with patients, it’s not always like a tool but just having a listening ear and letting patients ask questions and being with them to be able to answer all their questions that they have.I feel like that builds a very trusting relationship from the get-go, which I think is crucial, especially with this diagnosis, when things can change pretty rapidly.

Dr. Nicole Rochester::

Thank you so much. Yes, Dr. Sands.

Dr. Jacob Sands:

Oh, I mean, to that point, the two visits can be very, very helpful, where when I’m talking with patients, I will often call out. I mean, frequently I can tell, like, hey, someone. They lost the whole information we’re discussing. Like, they went into their own head. It’s natural. The situation often just feels surreal with people. They were fine, and now all of a sudden, they’re in an oncologist’s office talking about having small cell lung cancer. It’s disorienting. And I’ll often acknowledge that for people, I’ll say to them, hey, I usually find that people just feel the room spinning around them in the middle of a discussion like this. And if you feel that way, it’s totally natural. And I’ll often say that when I can see that someone has lost me, or it doesn’t seem like they’re tracking everything I’m saying. And usually people say, yeah, I don’t know what you said, but I think in doing that one, my goal is to essentially relieve any pressure. Like, hey, if you’re not catching everything I’m saying, it’s okay. We’re going to come back to it, because you’re at the center of all of this.

And I’ll call that out. Sometimes when discussing treatment options as well, I’ll call out common misconceptions. Oh, people usually come in here thinking that if they get chemotherapy, that means they’re going to be laid up in bed vomiting without hair. And almost always people go, doesn’t it? And thankfully, nausea is not nearly the problem. It used to be the first-line regimen for small cell lung cancer. People do lose their hair. And I try to really be very up-front about the things I expect, but also being very up-front about the things I don’t expect. Yes, they can happen, but I don’t expect that.

People often come in thinking the worst of everything, that a lung cancer diagnosis means that at any moment they can just drop dead, and any treatment is just going to cause a whole bunch of toxicity. And thankfully, that’s not actually the equation. And if that were the equation, then being an oncologist would essentially be torturing people, and that’s a horrible job, and we wouldn’t do that. But the goal in all of this from the beginning, most people want to be very clear their goal is prolonged quality of life. And so I will frame the discussion around that goal and make sure that we’re on the same page about the reason that we’re doing any of this, the reason we’re discussing it, and also making it very clear that they have a choice in all of this.

Dr. Jacob Sands:

But I think some of that is also framing it in a way that feels right where it can be hard sometimes to make a decision. And I’ll say it’s normal to not be sure what to do sometimes, because there is not an option here that’s appealing. There is no option that’s like, oh, that sounds great. We’re choosing between two things we don’t want. So let’s kind of anchor around what is going to drive those decisions. Usually for the first treatment, that’s not such a dilemma. I mean, this is an aggressive cancer that the first treatment often works great, and it has the real potential of working for a very long time. This is wonderful. Our first-line treatment really is very effective.

And it’s exciting that we do also now have other often effective treatments that we can discuss. And so I know we’ll kind of get to that a little further down the line. But essentially what I’m highlighting is anchoring around what the patient is emotionally experiencing, because we all know it’s tough. Like, we work in an intellectual space, but we all live our lives in an emotional space. And so that’s where there can really be a big disconnect.

If we’re just talking, like, computer. But people are living their lives emotionally. You flip the script, and all of a sudden the healthcare practitioner is the one that’s disoriented. If it’s like our own lives, that someone else is interacting with us. So we have to be attentive to that and kind of, what are the beliefs coming in? Okay, what is the reality of those? And how much of a factor and how much do we really expect in all of this as a way of balancing this out? Now, that being said, even with all that effort, the room spins around people.

And so for them to then have a separate visit with Stephanie where she’s going to go through things in a different way, and then that ends up being another way. Like, okay, they got all that. They’ve maybe processed some of that. It’s impossible to process everything but some of that. And now they’re meeting fresh again and going to go through things in a different way then I think people retain quite a bit more. It’s also really important because Ms. McDonald and them are going to interact a lot as well. We’re a care team and so I often say to them, hey, I really want you to meet her, because she’s an important part of the team too. And that way she knows you. You know her because we work together.

Dr. Nicole Rochester:

I  really appreciate how both of you really focused on humanizing the patient and normalizing the overwhelm and the confusion and all of the emotions that go along with a new cancer diagnosis.


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Empowering Patients with Small Cell Lung Cancer: A Team Approach to Tough Conversations

Dr. Jacob Sands and Nurse Practitioner Stephanie McDonald of Dana-Farber discuss the communication challenges of treating small cell lung cancer, often diagnosed at advanced stages. Moderated by Dr. Nicole Rochester, the conversation highlights the importance of patient education, reducing stigma, emotional support, and team-based care to empower patients and improve outcomes.

English Guide|Spanish Guide

See More from EPEP SCLC

Related Resources:

Small Cell Lung Cancer Care: Striking a Balance With Urgency and Shared Decision-Making
Small Cell Lung Cancer Care: Striking a Balance With Urgency and Shared Decision-Making
Turning the Tide: Clinical Insights Into a New Era of Small Cell Lung Cancer Treatment
Turning the Tide: Clinical Insights Into a New Era of Small Cell Lung Cancer Treatment

Helping Patients Navigate SCLC Treatment: Tools, Transparency, and Supportive Care

Transcript:

Dr. Nicole Rochester:

There is a lot to unpack given small cell lung cancer is often diagnosed at advanced stages, often requiring rapid decision-making due to its aggressive nature and limiting the time for in-depth discussions. Can you speak to some of the unique obstacles you faced in your own practice around patient-provider communication and shared decision-making?

Dr. Jacob Sands:

Well, I think this is something that’s applicable across all tumor types. Although then I’ll get to the fact that I think to some of the things that I think are more common when in the small cell lung cancer space. First of all, we now live in an era where information is out there, and patients will go looking for information. They’ll come in with an array of things and varying levels of confidence in what they’ve read about online as well. And I do not discourage that.

I think I’m different than some other providers and I say, great, you want to read about things, read about them. If there’s something that’s really compelling to you, bring it in and let’s talk about it. Now, if there are things where you’re like, gosh, that doesn’t sound right, but I’m going to ask about it, then ask about it. Let’s make sure we go over everything that you want to discuss. And I really make an effort to address every question that patients have. Now a lot of times, there are things we can’t know the answer to, But I don’t discourage them asking. And I also will say to them, I am going to try as best as I can to really directly address any question that you have.

And sometimes there’s not a solid kind of short answer. And so we’ll talk about how it’s hard to predict that. But I encourage people to ask questions. I want to make sure that patients know everything that they want to know, and I want to make sure that they’re engaged in their own care and that they feel empowered around everything within their care. Sometimes I think it can be easier for patients to feel lost within the system or kind of feel like they don’t have enough. But if people feel pressured in time or limited in what they can ask, then they just don’t know as much of what’s going on.

So I encourage it. I directly answer everything that I can. Now within small cell lung cancer specifically, with this being such a high smoking prevalence cancer where we know that cigaretteor any kind of smoking essentiallyincreases the risk within this population, within the lung cancer space, especially where there is this direct correlation that is widely known, I think that stigma can get in the way for a lot of people. And I’ll say off the bat that I know of patients who tell people publicly that they have breast cancer instead of lung cancer so that they don’t get the questions about, oh, did you smoke? Of course, we know that there’s a large population of individuals with lung cancer who never smoked.

And it’s often very surprising for people to hear that, that anyone with lungs can get lung cancer, as we often say, but small cell lung cancer is far more common in a population of patients with a heavy smoking history. That’s not 100 percent.I know patients who never smoked, they got small cell but overwhelmingly. And so a lot of the communication in small cell lung cancer, I try to gauge from the start how much is this kind of impacting their mental space around it and how do I do the best that I can to like, remove that guilt. And hey, we’re starting from here. Let’s take this going forward.

Now, for some people, it is a big space. For others, you know, that’s just not in their mindset, or it’s just hard to tell. So I try to gauge that oftentimes there can be kind of family conflict around this or someone still smokes. And I really try to remove guilt of still smoking as well. Because if people with decades of smoking history feel guilt, they’re actually more inclined to keep smoking, because that’s how that then helps them handle those feelings, those like, negative feelings. And so I think that is tied into this discussion in the small cell space that it’s not in all tumor types.

Dr. Nicole Rochester:

Thank you so much for sharing that. Dr. Sands. You said three of my favorite E words, which are educate, engage, and empower. I really appreciate you sharing your approach. I’m going to go to you, Ms. McDonald. What’s your perspective as a nurse practitioner, and what are the primary obstacles that you face regarding shared decision-making and communication in small cell lung cancer care?

Stephanie McDonald:

I often think that small cell lung cancer is diagnosed in advanced stages, and treatment decisions sometimes need to be made pretty quickly. So from the time that a patient has their initial consult with their medical oncologist, they may be starting their first-line therapy within a week, sometimes a couple of days. So I think it limits the opportunity for a really thorough or in-depth conversation with patients and families that you do. They do happen in the initial consult, but I think these patients really need, you know, follow-up visits and frequent check-ins to be able to fully digest the information that they’ve been receiving.

I think there are also kind of obstacles in patients’ emotional response to their diagnosis. I mean, given the aggressive nature of small cell lung cancer, I think many patients and their family members tend to be overwhelmed by the news, and this can really impede their ability to engage in decision-making fully. I think that patients’ ability to proces and understand details in this scenario may be limited, and often the first visits tend to be pretty overwhelming. And I think that patients don’t always remember what was discussed in great detail with their provider.

So I think it’s a great opportunity for advanced practice providers to be able to implement or provide a different setting, separate from their initial consult with their medical oncologist in a slowed down setting, separate from going over all that initial information to really reflect on what was reviewed with the patient, go over what their care plan is and answer any questions that them and their…both the patient and their family have. I think that is super important.

Dr. Nicole Rochester:

I appreciate you sharing that. I can only imagine how emotional this must be for families and like you said, they’re going to need that time to process. So this team-based approach sounds phenomenal. 


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HCP Roundtable: Optimizing Shared Decision-Making and Communication in Small Cell Lung Cancer Care

How can healthcare providers cultivate meaningful communication and support shared decision-making in small cell lung cancer (SCLC) care? Dr. Jacob Sands, Associate Chair of Thoracic Oncology at Dana-Farber Cancer Institute and Assistant Professor of Medicine at Harvard Medical School, joins Nurse Practitioner Stephanie McDonald of Dana-Farber to discuss practical strategies for strengthening patient-provider relationships, fostering collaboration, and advancing patient-centered care to improve outcomes for those living with SCLC. 

English Guide|Spanish Guide

See More from EPEP SCLC

Related Resources:

Outdated Small Cell Lung Cancer Clinical Approaches: Addressing Gaps in Patient Management

Outdated Small Cell Lung Cancer Clinical Approaches: Addressing Gaps in Patient Management

Expert Perspective on Small Cell Lung Cancer Treatment Barriers

Expert Perspective on Small Cell Lung Cancer Treatment Barriers

What Small Cell Lung Cancer Strategies and Innovations Can Improve Survival Outcomes?

What Small Cell Lung Cancer Strategies and Innovations Can Improve Survival Outcomes?

Transcript:

Dr. Nicole Rochester:

Welcome to this Empowering Providers to Empower Patients EPEP program. I’m Dr. Nicole Rochester, founder and CEO of Your GPS Doc, and the host for today’s program. EPEP is a Patient Empowerment Network program that serves as a secure space for healthcare providers to learn techniques for improving physician-patient communication and to overcome practice barriers.

Today, we are discussing optimizing shared decision-making and communication in small cell lung cancer care. We’re going to discuss how healthcare providers can foster shared decision-making and improve physician patient communication in the management of small cell lung cancer, as well as strategies that healthcare providers can implement to enhance patient-centric care and drive better outcomes in SCLC treatment. 

It is my privilege to be joined today by Dr. Jacob Sands of Dana-Farber Institute. Dr. Sands is the Associate Chair of Thoracic Oncology at Dana-Farber Cancer Institute and an Assistant professor of medicine at Harvard Medical School. Dr. Sands conducts clinical trials with novel treatment options with a particular focus on small cell lung cancer and antibody drug conjugates. Thank you so much for joining today’s EPEP program. Dr. Sands.

Dr. Jacob Sands:

Thank you so much for having me happy to be here.

Dr. Nicole Rochester:

It is also my pleasure to be joined by Ms. Stephanie McDonald, a nurse practitioner in the thoracic oncology program at Dana-Farber Cancer Institute in Boston, Massachusetts. Ms. McDonald’s clinical interests include targeted therapy for lung cancer, immune checkpoint inhibitor toxicity management and streamlining chemotherapy, education for patients and families, providing an individualized plan for support, guidance, and education to prepare patients and families for their cancer journey. Thank you so much for joining me today, Ms. McDonald.

Stephanie McDonald:

Thank you so much for having me. It’s a pleasure to be here.

Dr. Nicole Rochester:

So let’s start our discussion today by looking at the obstacles that surround provider-patient communication and shared decision-making in small cell lung cancer care. Let’s start with some facts that might help frame our discussion. And I’m going to start with you, Dr. Sands. There is a lot to unpack given small cell lung cancer is often diagnosed at advanced stages, often requiring rapid decision-making due to its aggressive nature and limiting the time for in-depth discussions. Can you speak to some of the unique obstacles you faced in your own practice around patient-provider communication and shared decision-making?

Dr. Jacob Sands:

Well, I think this is something that’s applicable across all tumor types. Although then I’ll get to the fact that I think to some of the things that I think are more common when in the small cell lung cancer space. First of all, we now live in an era where information is out there, and patients will go looking for information. They’ll come in with an array of things and varying levels of confidence in what they’ve read about online as well. And I do not discourage that. I think I’m different than some other providers and I say, great, you want to read about things, read about them. If there’s something that’s really compelling to you, bring it in and let’s talk about it.

Now, if there are things where you’re like, gosh, that doesn’t sound right, but I’m going to ask about it, then ask about it. Let’s make sure we go over everything that you want to discuss. And I really make an effort to address every question that patients have. Now a lot of times, there are things we can’t know the answer to, But I don’t discourage them asking. And I also will say to them, I am going to try as best as I can to really directly address any question that you have.

And sometimes there’s not a solid kind of short answer. And so we’ll talk about how it’s hard to predict that. But I encourage people to ask questions. I want to make sure that patients know everything that they want to know, and I want to make sure that they’re engaged in their own care and that they feel empowered around everything within their care. Sometimes I think it can be easier for patients to feel lost within the system or kind of feel like they don’t have enough. But if people feel pressured in time or limited in what they can ask, then they just don’t know as much of what’s going on. So I encourage it. I directly answer everything that I can.

Now within small cell lung cancer specifically, with this being such a high smoking prevalence cancer where we know that cigaretteor any kind of smoking essentiallyincreases the risk within this population, within the lung cancer space, especially where there is this direct correlation that is widely known, I think that stigma can get in the way for a lot of people. And I’ll say off the bat that I know of patients who tell people publicly that they have breast cancer instead of lung cancer so that they don’t get the questions about, oh, did you smoke? Of course, we know that there’s a large population of individuals with lung cancer who never smoked.

And it’s often very surprising for people to hear that, that anyone with lungs can get lung cancer, as we often say, but small cell lung cancer is far more common in a population of patients with a heavy smoking history. That’s not 100 percent. I know patients who never smoked, they got small cell but overwhelmingly. And so a lot of the communication in small cell lung cancer, I try to gauge from the start how much is this kind of impacting their mental space around it and how do I do the best that I can to like, remove that guilt.

And hey, we’re starting from here. Let’s take this going forward. Now, for some people, it is a big space. For others, you know, that’s just not in their mindset, or it’s just hard to tell. So I try to gauge that oftentimes there can be kind of family conflict around this or someone still smokes. And I really try to remove guilt of still smoking as well. Because if people with decades of smoking history feel guilt, they’re actually more inclined to keep smoking, because that’s how that then helps them handle those feelings, those like, negative feelings. And so I think that is tied into this discussion in the small cell space that it’s not in all tumor types.

Dr. Nicole Rochester:

Thank you so much for sharing that. Dr. Sands. You said three of my favorite E words, which are educate, engage, and empower. I really appreciate you sharing your approach. I’m going to go to you, Ms. McDonald. What’s your perspective as a nurse practitioner, and what are the primary obstacles that you face regarding shared decision-making and communication in small cell lung cancer care?

Stephanie McDonald:

I often think that small cell lung cancer is diagnosed in advanced stages, and treatment decisions sometimes need to be made pretty quickly. So from the time that a patient has their initial consult with their medical oncologist, they may be starting their first-line therapy within a week, sometimes a couple of days. So I think it limits the opportunity for a really thorough or in-depth conversation with patients and families that you do. They do happen in the initial consult, but I think these patients really need, you know, follow-up visits and frequent check-ins to be able to fully digest the information that they’ve been receiving.

I think there are also kind of obstacles in patients’ emotional response to their diagnosis. I mean, given the aggressive nature of small cell lung cancer, I think many patients and their family members tend to be overwhelmed by the news, and this can really impede their ability to engage in decision-making fully. I think that patients’ ability to process and understand details in this scenario may be limited, and often the first visits tend to be pretty overwhelming. And I think that patients don’t always remember what was discussed in great detail with their provider.

So I think it’s a great opportunity for advanced practice providers to be able to implement or provide a different setting, separate from their initial consult with their medical oncologist in a slowed down setting, separate from going over all that initial information to really reflect on what was reviewed with the patient, go over what their care plan is and answer any questions that them and their…both the patient and their family have. I think that is super important.

Dr. Nicole Rochester:

I appreciate you sharing that. I can only imagine how emotional this must be for families and like you said, they’re going to need that time to process. So this team-based approach sounds phenomenal. Staying where you just left with this degree of urgency, how do you balance the urgency of starting treatment with this shared decision-making? And are there any tools or any tactics that you can share with the audience?

Stephanie McDonald:

So first of all, I think being honest and having transparency with our patients, I always really try to aim to provide really clear, open communication about their diagnosis and or summarizing their treatment options that were reviewed with them. I think, you know, I’m sensitive, but I want to be really honest in explaining kind of the nature of their illness and really that urgency to start treatment. But like I said, I also want to give space to be able to ask questions and express concerns.

I’m also open about the, you know, the advances in treatment associated with small cell lung cancer with, you know, improved response rates and a variety of clinical trial options. I know Dr. Sands could probably speak to that even more. But I really do think it’s important that we have these discussions with their patients, because it really is a different field now than it was even 5, 10 years ago when patients are diagnosed with small cell lung cancer. And so I think it’s really important to have a conversation with these patients about balancing treatment with their goals of care and really understanding what their goals are, what they find as kind of important to them, and what’s important to their family.

But to be able to just speak with patients, it’s not always like a tool but just having a listening ear and letting patients ask questions and being with them to be able to answer all their questions that they have. I feel like that builds a very trusting relationship from the get-go, which I think is crucial, especially with this diagnosis, when things can change pretty rapidly.

Dr. Nicole Rochester:

Thank you so much. Yes, Dr. Sands.

Dr. Jacob Sands:

Oh, I mean, to that point, the two visits can be very, very helpful, where when I’m talking with patients, I will often call out. I mean, frequently I can tell, like, hey, someone. They lost the whole information we’re discussing. Like, they went into their own head. It’s natural. The situation often just feels surreal with people. They were fine, and now all of a sudden, they’re in an oncologist’s office talking about having small cell lung cancer. It’s disorienting.

And I’ll often acknowledge that for people, I’ll say to them, hey, I usually find that people just feel the room spinning around them in the middle of a discussion like this. And if you feel that way, it’s totally natural. And I’ll often say that when I can see that someone has lost me, or it doesn’t seem like they’re tracking everything I’m saying. And usually people say, yeah, I don’t know what you said, but I think in doing that one, my goal is to essentially relieve any pressure. Like, hey, if you’re not catching everything I’m saying, it’s okay. We’re going to come back to it, because you’re at the center of all of this.

And I’ll call that out. Sometimes when discussing treatment options as well, I’ll call out common misconceptions. Oh, people usually come in here thinking that if they get chemotherapy, that means they’re going to be laid up in bed vomiting without hair. And almost always people go, doesn’t it? And thankfully, nausea is not nearly the problem. It used to be the first-line regimen for small cell lung cancer. People do lose their hair. And I try to really be very up-front about the things I expect, but also being very up-front about the things I don’t expect. Yes, they can happen, but I don’t expect that.

People often come in thinking the worst of everything, that a lung cancer diagnosis means that at any moment they can just drop dead, and any treatment is just going to cause a whole bunch of toxicity. And thankfully, that’s not actually the equation. And if that were the equation, then being an oncologist would essentially be torturing people, and that’s a horrible job, and we wouldn’t do that. But the goal in all of this from the beginning, most people want to be very clear their goal is prolonged quality of life. And so I will frame the discussion around that goal and make sure that we’re on the same page about the reason that we’re doing any of this, the reason we’re discussing it, and also making it very clear that they have a choice in all of this.

But I think some of that is also framing it in a way that feels right where it can be hard sometimes to make a decision. And I’ll say it’s normal to not be sure what to do sometimes, because there is not an option here that’s appealing. There is no option that’s like, oh, that sounds great. We’re choosing between two things we don’t want. So let’s kind of anchor around what is going to drive those decisions. Usually for the first treatment, that’s not such a dilemma.

I mean, this is an aggressive cancer that the first treatment often works great, and it has the real potential of working for a very long time. This is wonderful. Our first-line treatment really is very effective. And it’s exciting that we do also now have other often effective treatments that we can discuss. And so I know we’ll kind of get to that a little further down the line. But essentially what I’m highlighting is anchoring around what the patient is emotionally experiencing, because we all know it’s tough. Like, we work in an intellectual space, but we all live our lives in an emotional space. And so that’s where there can really be a big disconnect.

If we’re just talking, like, computer. But people are living their lives emotionally. You flip the script, and all of a sudden the healthcare practitioner is the one that’s disoriented. If it’s like our own lives, that someone else is interacting with us. So we have to be attentive to that and kind of, what are the beliefs coming in? Okay, what is the reality of those? And how much of a factor and how much do we really expect in all of this as a way of balancing this out?

Now, that being said, even with all that effort, the room spins around people. And so for them to then have a separate visit with Stephanie where she’s going to go through things in a different way, and then that ends up being another way. Like, okay, they got all that. They’ve maybe processed some of that. It’s impossible to process everything but some of that. And now they’re meeting fresh again and going to go through things in a different way then I think people retain quite a bit more. It’s also really important because Ms. McDonald and them are going to interact a lot as well. We’re a care team and so I often say to them, hey, I really want you to meet her, because she’s an important part of the team too. And that way she knows you. You know her because we work together.

Dr. Nicole Rochester:

I really appreciate how both of you really focused on humanizing the patient and normalizing the overwhelm and the confusion and all of the emotions that go along with a new cancer diagnosis. Well, we’re going to shift to practical tools and resources to empower patients and enhance long term outcomes in small cell lung cancer. As you both have discussed, there are some challenges with survival outcomes, particularly for extensive stage small cell lung cancer. Dr. Sands, I’m going to start with you. What are the most significant advances in the current treatment landscape for small cell lung cancer? Five years. And how are they impacting patient outcomes?

Dr. Jacob Sands:

Well, thankfully, you know, there’s a lot to talk about in this space, especially if we’re including current clinical trials, because there are a lot of drugs in development that have shown really exciting results. But aside from that, I’m going to stretch a little more than five years, because it’s so meaningful. Is the immunotherapy drugs that are now part of our first-line treatment. These are drugs that, unfortunately, probably work well for maybe 20 percent of individuals. But amongst those in whom these work, they can work amazingly well. We have patients that are more than five years out from their initial diagnosis with widespread small cell lung cancer that have never gotten another treatment. They got chemotherapy and immunotherapy and that’s it.

They’ve not yet had another treatment. Their disease is controlled. Now this is an, unfortunately, smaller subset of patients that this is working like this for. But I mean, I’m stretching to say that we might actually be curing some people of their incurable disease with the incorporation of these immunotherapy drugs. So first-line setting chemo plus immunotherapy has been the standard of care. Now more recently we’ve seen the ADRIATIC trial. This was a trial in limited stage after chemo-radiation that now uses durvalumab (Imfinzi), one of those immunotherapy drugs after chemo-immuno it actually had a pretty impressive impact on survival on the time to the disease occurring as well as overall survival of patients made a really quite a big difference.

So that’s now the standard of care after chemo radiation for limited stage to then get immunotherapy for two years. But five years ago, also saw lurbinectedin (Zepzelca). This is another chemo agent, got a publication from that study that led to approval. This was 105 patient cohort within a basket trial. So single arm. That led to FDA approval of a new drug for small cell lung cancer. Lurbinectedin is a once every three week drug. It’s pretty well-tolerated. I think as far as chemotherapy drugs work, it does not have a lot of the toxicities that people worry about.

There are some things to monitor, but generally it is a manageable side effect profile as a new drug. More recently, we have tarlatamab (Imdelltra). This has made big headlines and it was a trial that enrolled in the third line and beyond. But the data was so good it got approved in the second line. So, you know, I often quote that about half of patients that get the drug benefit from the drug. It’s 40 percent that have a response–response meaning that it shrank by more than 30 percent. And amongst those individuals, 43 percent of patients were still on the treatment at the time of the last data kit.

And that’s beyond a year of ongoing treatment and some quite a bit more. So we don’t yet know the ceiling as far as how long this drug can work for. When it’s working. I mentioned about half of patients benefiting, but the response rate being 40 percent. That’s because even with stable disease, meaning that it could have shrank by less than 30 percent or grown by less than 20 percent. But in that range we see disease control and some portion of that out beyond six months, which I think is meaningful in the third-line and beyond setting.

Now, of course, what patients want and what we want for them is for something to work for years, not just for months now, you know. But if something works for six months even, and then you have something else that works and then something else that works and something else, then you can string that out to a much longer timeframe. But it’s exciting to see potentially years of benefit from another immunotherapy drug. Now, with that being said, there’s a lot going on in clinical trials that’s quite exciting too. And I’d say one of the benefits at Dana-Farber as well as some of the other bigger academic centers is that we have multiple trials for small cell lung cancer.

One right now is CAR T. So this is essentially collecting the immune cells from patients. We send those off and process them so that they are trained essentially to recognize small cell lung cancer cells. And then we infuse those back into patients. So patients get their own cells back, but now are essentially trained to find small cell lung cancer cells and kill them. So the treatment is essentially training someone’s own immune system to do the work. And it’s exciting. We’ve enrolled patients on that now and to see that technology now coming into the space on top of multiple drugs, which we call targeted chemotherapy.

These are essentially chemo that is bound to an antibody, so that goes and finds a certain receptor on the surface of cells where it then pulls that compound into the cell. And so the chemotherapy is delivered into the cancer cells instead of just going everywhere. And that’s another whole class of technology that’s happening in clinical trials. Now, that’s a bit of scratching the surface as far as clinical trials. There are multiple other things that I could go into, but trials options, I think, are a really important consideration in the small cell space.

I’d say, at this point, especially if you combine what I just said about the past five years now with what’s going on in available clinical trials, there is more happening in the small cell space of novel, effective treatment options than the history of everything up to this point. And so it’s really exciting to see that as an option for patients and to see people do well for such extended periods of time.

Dr. Nicole Rochester:

Wow, that is extremely exciting. When you talked about curing an incurable disease, that’s when you really got my attention. So, Ms. McDonald, I want to go to you, because Dr. Sands just described some very exciting treatments with very promising results. And I can only imagine that this information, while great, is also overwhelming to patients when they’re presented with all of these options? So are there specific decision aids or tools that you use when you’re talking with patients and families to help them understand the risks and the benefits of the different treatment options as they’re making decisions?

Stephanie McDonald:

So, yes, there are a lot of different treatment options. And with that, you know, we need to be aware of the potential toxicity associated with the treatment that patients are getting, which don’t come without risks. Right. Most patients do pretty well on immunotherapy, but there definitely are toxicities, you know, as far as, like, colitis or pneumonitis and rashes. There are things that are going to be education points that need to be made with patients to know what to look out for depending on what treatment they’re getting.

So I think it is incredibly important not only to provide education sheets to patients to reinforce these discussions, but like I spoke to earlier, I have a separate visit with the patients to be able to spend at least an hour the first time they are given a treatment plan, to be able to feed through all of the potential side effects. And I don’t want to overwhelm patients because you could be a bad, you know, commercial going over every single side effect. But we do need to be realistic with patients about what to be on the lookout for, what might come up, when to call if something does occur.

So I think the most important thing is breaking it down for patients to really easy-to-understand information and you can really gauge. I prefer to see patients in-person or at least have a virtual encounter with them over like a telephone encounter, because you can really gauge how a person might be responding to what you’re teaching them.If someone’s a deer in headlights and they’re overwhelmed by the information that you’re sharing, you need to be able to stop, take a few steps back, and break it down to easy-to-understand information for not only them but for their family members.

I think it’s really important that we also care for the family member as well. IWhen you walk into the room, you’re not just taking care of the patient, you’re taking care of every single person that is in their life. Like they have supportive families who are coming to these appointments who are equally as overwhelmed, or maybe there’s a shift in their role. And now that maybe somebody was a primary caretaker, very active and matriarch, or a patriarch in the household, and now there’s a shift in a whole role and dynamic for how these patients are going forward along their journey.

So we need to be able to spend time to unpack all of that to really understand how we can best support these patients. So besides just education tools, which I think just help reinforce the information that we go over with them as far as breaking down what are the side effects of treatment, how often will you be coming into clinic? People want to know simple things like what do you dress comfortably to come into clinic? What does the infusion room look like? It’s things that maybe as providers we don’t take a moment, because it’s second nature up to us to know kind of the…what the logistics are to somebody’s day in an infusion center.

But this is brand new information for most patients, and that can be incredibly crippling and overwhelming. So on top of providing concrete information as far as what side effects to expect, I also want to be doing a real time evaluation about what their supports are, what their needs are, are they losing weight, are they coming in and need help right off the bat with a dietitian? Are we assessing for their nutritional needs? Are we assessing their psychological needs? Because we know that anxiety, depression, fear of the unknown are very common emotions as a part of a cancer diagnosis and especially one as significant as small cell lung cancer.

So we really want to be talking to patients about the resources that we can encourage them to tap into or think about and talk with their family if they think they would benefit from these. I think one referral that I think often goes later in offering to patients is referrals to palliative care. And I think I just want to make a quick point, and Dr. Sands can talk to it as well, is the importance of implementing palliative care along a patient’s journey early.

And there is data to support that when you implement palliative care services early, patients are living actually longer. Jennifer Temple put out a study probably several years ago, Jacob, you could probably quote me on the date of that. But it’s shown that patients are living longer with improved quality when resources such as palliative care are implemented earlier. And I think it’s very difficult for patients when they hear the word palliative care. They already have this notion in their head that they don’t understand actually what it is. I think a lot of patients think that it’s hospice. They think I’m dying, you, you’re sending me to hospice. There are no more treatment options.

But I implement palliative care as an understanding of supportive oncology. How can we support you to improve your quality of life from the get-go of when you come in and start your journey? And, I make these referrals early. I do it in a non-threatening way and just lay it out as an additional support to help improve their quality of life and really balance the treatment that we’re giving them with again improving their quality of life over the long term. So I do think that referrals to palliative care should be considered and implemented early in a patient’s course in treatment.

Dr. Nicole Rochester:

Dr. Sands?

Dr. Jacob Sands:

Yeah, I agree. Supportive oncology is such an important component, and they often can play a role in helping with controlling symptoms like pain. I mean, of course, I want to know about pain. Of course, we can manage pain as well and I’m happy to add that into office visits. I also find though that for patients sometimes having visits where they’re talking more about those symptoms and others where they’re talking more about the cancer, actually for some patients works better for them. I am happy to help manage pain and do other kinds of medications around symptom management.

So, you know, that can also happen within our clinic as well. But like I said, I think for some patients, it works better for them having these two different teams that they’re interacting with and kind of sharing their story a bit more. It also allows them to really share that story in the way that they want to talk about it. And sometimes those are two different ways that they want to talk about it. You know, also related to the whole shared decision-making and discussion of toxicity profile versus benefits and stuff, I think I’ve often heard patients come in, you know, I see a lot of second opinions and such.

And so they’ll come in and say, well, this doctor told me all of these horrible things that are going to happen with the treatment. And so why would I even want to do that? And, you know, this is…I never actually know what was said to somebody, right? Because people are telling me what they heard, and I’ve heard patients come back or, you know, they get admitted to the hospital and what they tell the inpatient team about my discussion with them. I’m like, oh, I would never say something like what you just said.

So again, patients are experiencing all of this in an emotional way, and I think we have to be attentive to that. So the way that I’ll often talk about this is not just a matter of it’s not. I want to highlight what it’s not first. It is not saying, oh, all of these terrible things could happen. Because that way, if it does, I told you that was a possibility. Okay, that’s not necessarily the transparency we’re going for. The transparency we’re going for is kind of the overall context. Like, hey, this is the overall risk. Yes, here are some things, but here’s the likelihood of those things.

And so what I’ll often do for patients is I’ll often use the analogy. I often talk in analogies. I think that makes it more accessible. For this one, I’ll commonly say, if I were to ask you what could happen on my drive home, then you’re probably going to say, oh, you might hit some traffic, but you’ll be fine. And if I say, well, what are all the things that could happen? Now, that becomes this long, scary list.

Now I often say off the bat, like, a drive home is nothing like having cancer. I’m not saying that these are comparable, but just talking about it in a way in this analogy, so we can give more context so when I talk about, oh, the risk of immunotherapy, okay, you can end up with type 1 diabetes. You can have inflammation and problems with your heart. Okay, these sound like really severe, scary things. The likelihood of this kind of a thing happening is like on the scale of a bad car accident. Yes, it can happen, but this shouldn’t drive your decision-making. That’s very different than just listing out all the different things that can happen.

And I really encourage other providers to talk with their patients in some kind of a way that provides that. We’ll say, okay, here’s the long list of all the things that can happen. More realistically, what I expect is this.

Dr. Nicole Rochester:

Yeah. Thank you for highlighting that. Thank you for highlighting that balanced approach. I love the analogy with the ride home. I think that’s great advice for providers. Both of you have spoken as we wrap up. You’ve talked about collaborative decision-making. You have clearly highlighted how you all collaborate at Dana-Farber Cancer Institute and the importance of having these multiple visits. What about other members of the care team? How do you utilize social workers or patient navigators or other members in fostering collaborative decision-making in small cell lung cancer care?

Dr. Jacob Sands:

Well, they’re instrumental. I mean, this really is a shared team approach. Ms. McDonald and I are at the core of that. But then around us, the social worker, really important. You know, rides can often be a real barrier to getting care. And so having a social worker involved in that, that’s one aspect that’s kind of a more obvious one. Even the emotional support as well, and logistics, drug availability and programs for assisted pay, all of these types of things.

We have whole teams that help with that. Nurse navigator is another core member, though. We meet weekly with an administrative support and administrative assistant and with a nurse navigator to go over any patients that are complex and say, okay, this is what’s going on. How can we assist them better? What’s coming up? The administrative assistant knowing, oh, this person’s going to get a scan next week, but then is coming in the next day, we need those results available. Sometimes the outside hospital hasn’t even read the scan yet. They don’t have a radiology report. But we’ll review it with our radiologist as well. Because we have that scan available now. We’ll often do scans the same day.

Patients will come in, they’ll get a scan and then they come right to clinic. And we will review the scan with our radiologist. But of course, radiology, thoracic surgery, radiation, oncology, you know, the whole multidisciplinary team is a part of that. But there are also all of these other supportive members of that team and these weekly meetings, Ms. McDonald really was at the heart of that process and saying, hey, you’ve had these complicated patients. Let’s pull together a team meeting.

That has been a gift. That’s been wonderful, because then weekly we go through this and then everything is organized, and it really reduces the number of other emails or things that could potentially slip through the cracks in the process.Now, on top of that, if you go to tarlatamab, which is an inpatient dosing, which we just don’t have that in small cell lung cancer up to this point as something that requires inpatient monitoring. And as McDonald has really been part of that core of then connecting across to the inpatient team as well, and to all the nurses to then make sure we’re all on the same page.

A colleague of ours, Dr. Rotow, who’s our clinical director, of course, was quite instrumental in the implementation of these things as well. Just to say it goes out beyond our team, specifically in the small cell space. But it’s really important to be connected in all of these ways that really helps provide patients with all the resources that are available to them as well.

Dr. Nicole Rochester:

Truly a team-based approach for sure. Well, it’s time to wrap up our roundtable. I have really enjoyed this conversation. I have learned a lot. And as we close, I wanted to get closing thoughts from each of you. So I’ll start with you, Ms. McDonald. What is the most important takeaway message that you want to leave other healthcare professionals who may be listening, watching regarding how we can optimize shared decision-making and communication in small cell lung cancer care?

Stephanie McDonald:

I really just think the key to optimizing shared-decision making is empathy. I think we need to take the time to really truly understand what our patients’ needs are, what their values are, and their preferences so we can be able to help align the treatment plans and the care that we give with what their goals are. And we really want to make sure that patients and their families are feeling supported and they are playing an active role in this decision-making process because at the core of it, they are what I call the captain of the ship. 

Dr. Nicole Rochester:

Thank you so much, Ms. McDonald. And what about you, Dr. Sands? What’s your final takeaway message for the audience?

Dr. Jacob Sands:

Well, I go that and thinking about when you’re talking about side effect profiles and counseling patients is what the experience is for them and coming at it as if you’re talking to your own parents. But, you know, I can go more in depth in that, but maybe more so focus on everyone who’s listening. I mean, it is hard being a healthcare provider. There is more information coming out faster and faster, and this is wonderful for patients.

There’s also a whole new era of patients really being at the center of their care. And I hear older docs talk about how, oh, this is so much slower. You’re not taking care of as many patients in the hospital as I did. Like, okay, but back in the day, it was a whole different experience. And so I think current physicians and nurse practitioners and healthcare providers are under an immense amount of pressure that is increasing day by day, year by year, in a way that isn’t fully appreciated within the system. And so just to acknowledge for everyone who’s listening, who feels like you’ve been in a crunch, I know you have. And I think part of this is then how to navigate that.

How do you go into someone’s room and emotionally actually engage and be there with them in a tough space sometimes, you know, being challenged for stuff that you shouldn’t be challenged for? It’s just people are going through an emotional experience, and they sometimes even lash out. And then how do you engage with that? And then right after that, walk into someone else’s room and start fresh and don’t carry that? And a lot of this is personal practice too. It’s like, how do we kind of shed everything at the end of an experience and not carry that forward without building a wall that keeps us from being able to engage in that space? And I will tell you, I don’t have a great answer. There is not a magical answer to that.

And so if you are feeling challenges of that, I think that is totally valid, too, as we all work to. I think this is… It is personally a lot of work to work in this space, and we always talk about the patients and what to do and what you should do and all this stuff. But how do we care for ourselves in that process and learn to let go of these things and start afresh with each person? I guess the best I can offer is validation that I know that that’s a challenging thing. And I see that, and I appreciate that, too.

Dr. Nicole Rochester:

Well, thank you both so much. There’s so much that was shared today, and I think the overarching message regarding shared decision-making and patient care in this space that I heard from both of you is empathy and meeting patients and families where they are. And I love the aspect of humanization of both the patient and of the doctor and the provider. So I really want to thank you both for being here today and thank you for tuning into this Empowering Providers to Empower Patients Patient Empowerment Network program. I’m your host, Dr. Nicole Rochester. Thank you so much for watching.


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Follicular Lymphoma Expert Q&A: Coping with Relapse and Managing Treatment Side Effects

Follicular lymphoma expert Dr. Kami Maddocks from The Ohio State University Comprehensive Cancer Center empowers patients and families with practical guidance on key aspects of managing follicular lymphoma. Dr. Maddocks covers effective strategies for managing treatment side effects, navigating the challenges of relapsed or refractory disease, and defining what survivorship means for both patients and their care partners.

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How Do Outcomes for Relapsed/Refractory Follicular Lymphoma Vary?

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Addressing Vulnerabilities in Follicular Lymphoma

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What Are Common Follicular Lymphoma Treatment Side Effects?


Transcript:

Lisa Hatfield:

Welcome to this START HERE Patient Empowerment Network program. This program bridges the expert and patient voice, enabling patients and care partners to feel comfortable asking questions of their healthcare team. I’m Lisa Hatfield, a cancer survivor and also an Empowerment Lead at Patient Empowerment Network. Joining me today is hematologist-oncologist

Dr. Kami Maddocks, Professor of Clinical Internal Medicine in the Division of Hematology at The Ohio State University Wexner Medical Center. Dr. Maddocks specializes in treating patients with B-cell malignancies, including non-Hodgkin’s lymphoma, Hodgkin’s lymphoma, and chronic lymphocytic leukemia. Dr. Maddocks researches new therapies for these hematologic malignancies, largely through evaluating new targeted therapies in clinical trials. Thank you so much for joining us, Dr. Maddocks.

Dr. Kami Maddocks:

Thank you, Lisa. It’s a real pleasure to be here with everyone today and talking about follicular lymphoma, and I just really appreciate you having me.

Lisa Hatfield:

The world is complicated, but understanding your follicular lymphoma diagnosis and treatment options along your journey doesn’t have to be. The goal of START HERE is to create actionable pathways for getting the most out of your follicular lymphoma treatment and survivorship. Joining us are patients and care partners facing a follicular lymphoma diagnosis, some of which are newly diagnosed, in active treatment, watch and wait, and also living for years with their disease.

START HERE is designed to provide easy-to-understand, reliable, and digestible information to help you make informed decisions. I’m thrilled you’ve joined us. Please remember to download the program resource guide via the QR code. There is great information there that will be useful during this program and after. Okay, Dr. Maddocks, let’s start here. What is the latest in follicular lymphoma, and what are the most important highlights for patients and families?

Dr. Kami Maddocks:

When we look at some of the stuff that’s changed in follicular lymphoma, there has actually been some really exciting developments just in the last year in follicular lymphoma. So when you look at patients who have relapsed or refractory follicular lymphoma, we’ve actually seen the approval of three different new therapies just in the last year for relapsed/refractory follicular lymphoma. So one of those therapies, we saw a brand new approval, and that’s a therapy which combines an oral targeted therapy with a monoclonal antibody.

So the combination of the CD20 antibody, obinutuzumab (Gazyva), in combination with the BTK inhibitor zanubrutinib (Brukinsa) was approved in March of 2024 for patients with relapsed/refractory follicular lymphoma. And this was based on a study that compared that to the single agent anti-CD20 antibody. So while we have had CD20 antibodies approved in both original treatment for follicular lymphoma and relapsed disease, it was the first time that we’ve had a BTK inhibitor approved for the treatment of relapsed/refractory follicular lymphoma.

In May of 2024, we saw the approval of actually the third chimeric antigen receptor T cell or CAR T-cell therapy for relapsed/refractory follicular lymphoma. So previously, we’ve had two different CAR Ts that target the same antigen or protein CD19 on the cell. And the third therapy with the same target was approved in May of this year for relapsed/refractory follicular lymphoma. And then in June of 2024, we actually saw the approval of the second bispecific antibody for the treatment of relapsed and refractory follicular lymphoma.

So previously, we had one approved almost two years ago in December, and a second one, epcoritamab-bysp (Epkinly) was approved in June of this year for patients with relapsed/refractory follicular lymphoma. So three different treatments approved in this setting in the last year, which increases the options for patients. It also provides us with thinking about sequencing these agents. And there’s a lot of studies ongoing to decide or to think about what is the best way to sequence therapy, because there’s no right or wrong answer currently in which therapy did you choose and when in patients with relapsed/refractory follicular lymphoma.

And then thinking about managing when we’re choosing these therapies, what are the side effects of these therapies and managing these side effects? Right? Because chemotherapy is often used for patients with initial diagnosis, and there is very specific side effects to chemotherapy and ways to manage those side effects. But when we look at some of these newer therapies, we have to think about the different toxicity profiles that they have and how we manage those toxicities.

So when we’re thinking about the newer therapies, like bispecific antibodies and CAR T-cell therapies, there’s very specific toxicity with those therapies, including cytokine release or CRS. And then something called ICANS, which is immune effector cell-associated neurologic toxicities, which are neuro side effects of these therapies. And so how do we identify and manage those therapies and now even looking at ways to potentially prevent patients from having those specific toxicities.

Lisa Hatfield:

Okay, thank you. So regarding those toxicities, like the ICANS and the CRS, is there a difference in how you treat patients? For example, if a patient might experience those side effects, are they hospitalized for that type of treatment initially, or are all of these new treatments done on an outpatient basis?

Dr. Kami Maddocks:

Yeah, that’s a great question. So the answer can be variable depending on the specific product or the center where the patient’s receiving them, and then even the disease that they’re used in. So let’s just talk about bispecific antibodies to start. So the first bispecific antibody that was approved in follicular lymphoma was mosunetuzumab-axgb (Lunsumio). There’s no required hospitalization to administer that, but there is a recommendation that if patients have signs or symptoms of cytokine release.

So the primary symptom is fever. That’s the number one most common symptom that patients will get and how we define cytokine release. But patients can also have hypoxia or a drop in the oxygen or hypotension and a drop in their blood pressure. So if they have these, it’s generally recommended that they’re admitted for a period of observation to ensure that those toxicities don’t worsen or escalate and that they’re treated if they do.

Which treatment can include ruling out other causes. Some patients may need antibiotics if they have low blood counts and a fever. Some people will need fluids and oxygen. Then sometimes we use steroids like dexamethasone (Decadron) or even cytokine blockers to help manage those side effects, particularly if they’re what we call higher grade or more significant. The second bispecific antibody epcoritamab-bysp. That was previously approved in diffuse large B-cell lymphoma and there was a recommended hospitalization with a step-up dosing for that.

However, in follicular lymphoma, when they studied that, they gave an extra dose. So part of trying to prevent the cytokine release is giving a lower dose and then increasing the dose each week until you reach the maximum dose. So they added an extra kind of intermediate dosing in the follicular dosing and showed that that made a lower risk of…a lower number of patients had cytokine release. And that the majority of them had the lowest grade cytokine release.

So in follicular lymphoma, it’s actually with that increased one dose in there to get to the maximum dose. It’s actually not recommended, or it’s not required that patients are hospitalized for any of the doses. But, of course, if they would, same thing, if they would have side effects, then you would consider that. And then the same thing could be said for the CAR T-cell therapies. Some of them are given inpatient and then patients are monitored for a period of time, and then some are administered as an outpatient. And patients are seen daily for that to check on how they’re doing, monitor for side effects, have labs. And sometimes it just depends on the center administering the therapy, how they have a setup for patients to be monitored.

Lisa Hatfield:

So I have two follow-up questions to that overview. Are these newer approved therapies, are they available at some of the smaller cancer centers, or are they only available right now at the larger cancer centers or academic centers? Then my second question is, are they limited duration therapies or like bispecific antibodies, does that just continue until disease progression?

Dr. Kami Maddocks:

Yeah, those are great questions. So in general, if you look at the combination of the obinutuzumab and zanubrutinib that should be able to be administered anywhere, the therapy for the oral therapy is continued until progression. If you look at the bispecific antibodies, there’s both. There’s a time-limited therapy, and then there’s one continued until progression. I think in general, we’ve seen that initially these have been used at larger treatment centers, but now that they’ve been approved for a while, we have seen a lot of these being used at smaller cancer centers and in the community centers. Sometimes patients may receive their initial dosing at a larger center and then transition to a local center. But I think, like I said, now, especially the one that’s been approved for a while, we’re seeing that it can be started at many places.

Lisa Hatfield:

Thank you so much for that important overview, Dr. Maddocks. All right, it’s that time where we answer questions we’ve received from you. Remember, as patients, we should always feel empowered to ask our healthcare providers any and all questions we might have about our treatment and prognosis. Please remember, however, this program is not a substitute for medical care. Always consult with your own medical team. So before we dive into this Q&A, since this program centers on coping with relapse and managing treatment side effects, how do you approach these first-time conversations with patients and their care partners who are facing relapse and potentially dealing with a new set of side effects due to the changes in their treatment regimen?

Dr. Kami Maddocks:

I think that’s a great question, and I think there are a lot of things to consider. So I think the first thing that we want to think about when we’re talking about patients having relapsed or refractory follicular lymphoma is that just because patients have relapsed or refractory follicular lymphoma doesn’t always mean that they need treatment. So many patients, when they’re initially diagnosed with follicular lymphoma, are going to go through a period of observation or watch and wait where we know that they have follicular lymphoma, but they don’t have symptoms of their disease.

They don’t have a large number of lymph nodes involved, or their lymph nodes are not very large by the scans, and they don’t necessarily need to be treated until they become symptomatic or have certain concerns from their lymphoma that’s causing problems. So the same thing can happen probably more with relapse than necessarily refractory disease, but patients may…you may detect on scans that they have lymph nodes that are growing or that their disease has recurred, but they don’t always necessarily need to receive treatment.

Once you’ve identified that, yes, a patient requires treatment for their relapsed or refractory follicular lymphoma, the next thing to think about is that patient and their disease. So what age is the patient? What were they treated with initially? Because not all patients receive the same initial therapy. So the decision about what they’re going to receive when they relapse is going to be somewhat dependent on what they received for their initial therapy, what side effects they had from that therapy, and how they responded to that therapy.

The next thing is going to be that there is not just one option at relapse so really discussing the different options for those specific patients, and what are the options, what are the side effects of those options, what is the treatment schedule of those options? Because some treatments may have more toxicity, but they’re time-limited, whereas other therapies may be continued to help progression, they may have less toxicity, but over time that’s a toxicity that patients continue to experience on a daily basis.

So really talking to the patient about the options, what does the schedule of that treatment look like? Do they have to come in weekly? Do they have to come in once a month? And then again, the side effects and how that fits into side effects that they had with their initial therapy, how they tolerate that, are any of those side effects still there?  For example, if a patient has neuropathy from their therapy, that might be something that lasts and then considering all those things and making an informed decision with the patient.

Lisa Hatfield:

Okay, thank you. And these questions are in the perfect order, because we have a question from Lauren asking you, what is the difference between relapsed and refractory? 

Dr. Kami Maddocks:

Okay, this is another great question. I’m sure all these questions are great. When we think of relapsed disease, we think of a patient who’s had therapy, got in a response to that therapy, that response has lasted some time, and then their disease recurs. When we think of refractory, we think of that more as patients that have received a therapy, and they haven’t responded. Now, there is no standard definition of refractory. So we all agree that if a patient gets a treatment and their disease does not respond to that treatment, they’re refractory to that treatment.

But there’s no defined time for which if a patient has a treatment and responds to that treatment but has a short relapse, what’s really considered refractory. In general, a lot of studies that look at a therapy say that if you’ve had it, like if you’ve had rituximab (Rituxan) and you’ve relapsed within a six-month time frame, that that’s refractory. But some studies use three months instead of six months.

Lisa Hatfield:

Okay, thank you. Another patient, Jeff, is asking, Dr. Maddocks, I’m currently in an observation stage of non-Hodgkin lymphoma. I get blood work twice a year and scans once a year. I’m hoping it stays slow-growing. How long on average can a person live in observation mode before treatment must occur?

Dr. Kami Maddocks:

So this is another great question. And I’m going to provide kind of an overview that we’ll kind of set up, because there may be more questions like this. But in general follicular lymphoma is not one disease, which I’m sure since this is a program focused on relapsed/refractory follicular lymphoma, a lot of patients have heard this and know this. But it’s what we call it’s very heterogeneous, or it can behave very differently in patients, meaning that some patients will have very indolent disease, and then there’s a small portion of patients whose disease will be more aggressive.

We know that when we diagnose patients with follicular lymphoma there are some patients that are diagnosed and require treatment pretty quickly, whereas there are other patients that go many years, many, many years without requiring treatment. Some of that is because of the disease, and some of that is because of how we find a patient’s follicular lymphoma. Some patients, we don’t find it until they present with symptoms. Some patients find their own lymph nodes, and some patients are diagnosed because they have a baseline scan that for a totally different reason, maybe get into a car accident, have scans to make sure nothing’s broken, you find an enlarged lymph node, you biopsy it, and you find this diagnosis.

All that said, there are some studies that have looked at patients who are on observation or watch and wait and looked at treating patients who have what we call low tumor burden, or not a lot of lymph nodes, or not very large lymph nodes, but have what’s called advanced stage disease. So lymph nodes on both sides of the diaphragm, not large enough to necessarily require more aggressive treatment, they don’t have symptoms. But we’ve treated, we’ve looked at studies treating those patients with observation or watch and wait or single agent rituximab (Rituxan) therapy. And when you look at the patients in those trials, the median time to needing treatment for patients from observation was three years.

However, there were 30 percent of patients, so one out of three patients who were still being observed at 10 years without requiring any therapy. So there are patients, that’s almost a third of patients at 10 years who’ve been observed, not required therapy in that population of patients. And certainly I have been practicing for a while where I’ve seen patients, I do have some patients who’ve gone longer than that without needing therapy.

Lisa Hatfield:

Okay, thank you. And there you go, Jeff, we hope that you’re in that third. 

Okay, thank you for explaining that. Next question, I’m not sure if it’s Jeff Run or Jeffrey is asking about the most common side effects that are associated with bispecific antibodies, and what precautions can be taken to reduce the risk of infection?

Dr. Kami Maddocks:

Yeah, another great question. There are two different bispecific antibodies that are now approved for relapsed/refractory follicular lymphoma. And I will take this time to also say that some of the exciting ongoing work is looking at those agents in clinical trials, in the frontline setting, in combination with other therapies particularly non chemotherapies.In general, I would say similar side effect profile. The most common side effect between them is the cytokine release or the CRS. So that is the most common side effect. Again, this can be defined in different ways. The most common side effects that you see from that define CRS are fever, hypotension or low blood pressure, hypoxia or low oxygen, shortness of breath, chills, tachycardia or higher heart rate. 

We have talked a lot about CRS and what it entails and how it is defined and presents. But management, it depends on what we call grading. So for patients who just, who have a fever, oftentimes, number one, you want to make sure that it is CRS and that there’s not an underlying cause. So ruling out infection or coexisting infection, if a patient is neutropenic or has a low neutrophil count and is at high risk for infection, you may treat them with antibiotics with a fever while you rule out infection.

But oftentimes, if they have a fever, you can manage symptomatically anti-fever medications like acetaminophen (Tylenol). If a patient has worsening CRS and has other symptoms associated with it, such as the hypoxia, low oxygen, or hypotension, low blood pressure, then that’s when we escalate therapy. So one you direct treatment towards that. So if they need fluid, if they need oxygen, but then that’s when you’re thinking about starting medications such as the steroid medication. So we give intravenous dexamethasone, or there are certain cytokine blockers such as tocilizumab (Actemra) that can be given to help treat the side effects of the cytokine release.

Other common side effects or that we’re seeing in more patients in the clinical trials, fatigue, rash, and then infections including upper respiratory infections, and then COVID-19 infection as well. So part of treatment of these side effects is early recognition of the side effects. So patients are monitored closely and that you’re dealing with the side effects to help them from worsening. I think infection prevention is very important with these. So it’s recommended to consider prophylaxis for certain infections. So antiviral medication to prevent viral, such as shingles reactivation, medication to prevent a specific type of pneumonia, PJP pneumonia, and then consideration I think of just making sure that patients are up to date on vaccination. And if patients do have infection while they’re getting treated, potentially delaying treatment or taking a break in order for them to recover from treatment.

Lisa Hatfield:

Okay, thank you. And this person did not give their name but is asking, Dr. Maddocks, I wanted to know how to travel as safely as possible. Is it advisable to get certain vaccines for travel like yellow fever? I plan to travel to Europe via plane and cruise. They say that there’s stage III non-Hodgkin’s follicular lymphoma getting treatment every eight weeks.

Dr. Kami Maddocks:

So this is a great question, and I’m probably going to answer this a little bit more generically, because I think that it can depend a little bit as far as what specific vaccines. But when thinking about travel, I think that it’s a good idea to look at where you’re traveling because both, where you’re traveling time of year you’re traveling and what you’re going to do when you’re somewhere can depend on what vaccines are recommended. I usually advise patients to consider looking at the CDC guidelines for recommendations for what should be received in that area, travel that time of year, what they’re going to be doing.

And then sometimes there are places that will actually have a travel clinic. Once I know what vaccines are recommended, the patient knows what vaccines are recommended, then I usually work with them and pharmacy to decide what vaccines, if they can receive all those vaccines or if there were certain ones that we may not recommend. In general, it can depend on a patient, what treatments they’ve received or if they’re actively receiving treatments. But in general, we like to avoid live virus vaccines in our patients. So I take into all those factors and then would recommend discussing the specifics with your physician.

Lisa Hatfield:

Luca is asking what are the long-term side effects of bispecific antibody treatment, and how will I be monitored for them after treatment ends?

Dr. Kami Maddocks:

So another great question. I think, when we think about the side effects in general, the bispecific antibodies in the CAR T both have those unique toxicity, cytokine release being the most common. And then you also have worry about the neurological toxicity. The difference is that, depending on the specific, bispecific or CAR T that you use, but we usually, typically see these occur in lower grade or not as severe with a bispecific antibody than you can see with a CAR T-cell therapy.

You can still have cytopenias and infection risk with these therapies. Whereas in chemotherapy, we think of that as more generalized toxicities, with the cytopenias, with the risk of infection with the GI toxicities. When we think about long-term side effects, so I think one of the important things to recognize is that bispecific antibodies have not been around that long in the scheme of things, though we can’t say, the risk of 20 years, what do we see or even 10 years.

But when we think about what we have seen, we’ve seen things like the cytokine release, the infections, the cytopenias, but what we haven’t seen is things like the secondary malignancies that we worry about when we think about chemotherapy or even maybe immunomodulatory therapy or secondary cancers that patients can develop. I think for long-term monitoring, right now, at least the biggest thing you want to think about is that these therapies do deplete the lymphocytes, for a prolonged time. And so the risk of viral infections or reactivation of infections, and making sure that’s being considered.

Lisa Hatfield:

Okay, thank you. That’s an important question. So another may possibly be a care partner, Marilyn. How can I best support my loved one during relapse and what should I do if I notice my husband with new or worsening symptoms?

Dr. Kami Maddocks:

So another great question. I think it’s first of all important to ask the physician about what symptoms to watch for. So you know, are there certain worsening new symptoms or worsening symptoms that seem more likely to be related to follicular lymphoma versus something else. I think it’s always important to encourage your loved one if they are experiencing new symptoms to reach out to the physician so that they can be evaluated. Because follicular lymphoma is a disease that many people live with and many people live with it for many years. We know that patients can experience other things.

Not everything is going to be just because of the follicular lymphoma. So it’s important to be evaluated, and recognize what is going on and what is attributed to the follicular lymphoma. I think being supportive, thinking of questions to ask and making sure that those questions are answered. I think thinking about, are there resources available? I think educating yourself is one of the most important things that people can do. So knowledge is power. So just participating in things like this I think can be very helpful, because learning about what’s out there, knowing that there are many options, I think being supportive and having a positive attitude, are all helpful things.

Lisa Hatfield:

Okay, thank you. So we have another big and important question from Aubrey. How can I live a full life with follicular lymphoma while managing the emotional toll of knowing the disease may relapse? And what lifestyle changes or habits should I focus on to maintain my health during remission?

Dr. Kami Maddocks:

Yeah, so this is another great question, and I think there’s probably lots of different ways to answer this or lots of different things to consider. So I think in general, as we’ve talked about follicular lymphoma is something that people live with for a long time. So thinking about just your general health and general disposition. So, we want to think about incorporating exercise, incorporating a healthy lifestyle, thinking about exercise, and being physically active.

Thinking about particularly diet and not saying that there’s any food that you need to avoid or any specific thing, but I think eating healthy is important. I think sleep hygiene is, can be very critical for patients. I think finding, and then just general health, it’s good to have a PCP so that you’re getting good routine health maintenance. We have to think about making sure that we’re managing other medical things like blood pressure, glucose, looking, doing other routine cancer screenings, depending, if somebody’s male or female, but the screening that’s recommended for that.

Now when we’re thinking about managing this does take an emotional toll because a lot of times, when somebody’s initially diagnosed, if they don’t need treatment, the question is always like, well, how long am I, is it going to be before I’m going to need treatment? How am I going to tolerate that treatment? How long is that treatment going to last? And then that resets once a patient’s had treatment. Well, how long will I stay in remission for this treatment? What’s going to be next?

I think things that can help with that are, sometimes I think involving like psychosocial oncology, I think support groups, I think that it’s very beneficial for many patients to talk to people, whether it be through a u look at the median age at diagnosis is in the 60s, and median overall survival is greater than 20 years. So many patients are going to live with this more like a chronic disease. And so learning to kind of knowing basic facts on what it is, what are the treatments that are available, what do those treatments look like, what are the reasons that you need those treatments? And that you are able many times in those periods of not needing treatment to live a very normal lifestyle and do things. I think making sure that, I think it’s important.

One thing that I think can be helpful is you’ll continuously follow up with your physician. So thinking about questions and concerns that you have throughout the period of time, writing them down that gets them out of your mind on paper. And then when you go to see your doctor next, you have that list of questions. Because I think, sometimes we think about things, and then we worry, worry, worry. But putting them down on paper or even sending them through like a secure MyChart email message and then talking them out, because a lot of times if you don’t do that, then when you go to see your physician you think, oh, I don’t really have any questions.

And then you leave and you’re like, oh, I should have asked these 10 different things. So again, I think asking for resources. So there are many different patient friendly resources out there. I think reading material that’s been written or vetted by medical professionals as opposed to just any random material can be very helpful for patients. And then again sometimes seeking out kind of peer support.

Lisa Hatfield:

Okay, great, thank you. Sean is saying that he was diagnosed with follicular lymphoma in 2022 and in an active treatment. What advice do you have for someone transitioning from patient to survivor? I am eager and fearful.

Dr. Kami Maddocks:

Awww. Well, another good question. And I think one thing I want to recognize is that somebody with cancer is defined as a survivor from the time they’re diagnosed moving forward. So you’re already a survivor. But when you, I do think, and I tell patients this, even when we’re talking about starting treatment, I do think that being aware of kind of where patients are at mentally is important.

Because when you go through, when a patient goes through treatment, they’re very focused on next steps and next steps when you’re going through treatment are, when’s my next treatment going to happen? When’s my next scan going to happen? When you get to that point, when you’re done with treatment, you no longer have those small milestones that you’re reaching the next treatment, the next scan. You now are like, oh my gosh, I had this treatment and now, how long is it going to last?

What’s going to happen to me? What else can happen to me? And there can be a lot of fear and anxiety. I would first tell you that’s totally normal. That is a normal feeling to have at this point. So I think one, recognizing that you have them is important. I think considering things like we’ve talked about, is there a survivorship clinic, is there psychosocial oncology? Is there something that might help in talking those things out? I think setting up milestones, what is the next thing? I’m going to have a three-month appointment, I’m going to have labs.

These are the things I need to be thinking about, but if I’m not noticing these also, what things can I do to return to the things I like to do. I think also I would go back to saying, I think this is where just thinking about getting good sleep, getting exercise, eating a healthy, balanced diet, and then socializing and making sure that you’re involving friends and family.

Lisa Hatfield:

Okay. Thank you. And, Sean, you’re already a survivor, Dr. Maddocks said so. So good luck, Sean. All right, Dr. Maddocks, thank you so much for being part of this Patient Empowerment Network START HERE program. It’s these conversations that help patients truly empower themselves along their treatment journey. On behalf of patients like myself and those watching, thank you so much for joining us, Dr. Maddocks.

Dr. Kami Maddocks:

Well, Lisa, thank you so much for having me. It’s been a real pleasure, and I hope everybody has a great day.

Lisa Hatfield:  

Thank you. I’m Lisa Hatfield. Thank you for joining this Patient Empowerment Network program.


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How to Create a Cancer Survivorship Care Plan

 

What is a cancer survivorship care plan? This animated explainer video provides an overview of the key components of a survivorship care plan, advice for collaborating with your healthcare team when preparing for life beyond cancer, and the overall benefits of planning for survivorship.

 

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What Does Cancer Survivorship Mean?

What Does Cancer Survivorship Mean?


Transcript:

Whether you’ve just finished treatment or are years out from your diagnosis, a Cancer Survivorship Care Plan can help you, your loved ones, and your healthcare team manage your overall health. 

So, what exactly is a Survivorship Care Plan? This plan is your roadmap for the next phase of your cancer journey. It includes information about your diagnosis, prior treatments, follow-up care, and it helps you and your healthcare team monitor your long-term health. 

So, what should your Survivorship Care Plan include? Here are the key components: 

  • It starts with a treatment summary, which lists the types of therapy you received, the dates of treatment, and any complications that arose. This information allows your future healthcare providers to better understand your medical history. 
  • The plan also includes a follow-up care schedule that details regular check-ups, screenings, and tests. These appointments monitor for cancer recurrence and ensure any side effects are managed effectively. 
  • Potential long-term side effects of your treatment are also noted in a survivorship care plan. Having this information can allow you to be more aware, so you can communicate any physical changes with your team.  
  • Tips and guidelines for maintaining a healthy lifestyle are also added to the plan and may include advice on diet, exercise, and mental health support, which can all support your quality of life as a survivor. 
  • Another key component is contact information for your healthcare providers, including your oncologist, primary care physician, and any specialists you see regularly. This makes it easy to reach out when you need assistance or have questions. 

Creating a Survivorship Care Plan is a collaborative effort. Schedule a meeting with your oncologist and primary care physician to develop your plan. Here are some questions to guide your discussion: 

  • What specific follow-up tests do I need? 
  • How often should I see my healthcare team? 
  • What symptoms should I watch for that might indicate a recurrence or new cancer? 
  • What steps can I take to manage any long-term side effects? 
  • Are there specific lifestyle changes I should make to improve my health? 

Once your plan is in place, it’s time to take action. Follow your healthcare team’s recommendations and attend all appointments. So, what other steps can you take to stay proactive in your survivorship? 

  • Regularly update your plan and review it with your doctor or care team. 
  • Set health goals with your healthcare team and plan for potential challenges. 
  • You should also seek counseling to address your emotional and mental health when necessary. Keeping a journal may be helpful too. 
  • And, seek out support and resources from advocacy organizations like the Patient Empowerment Network and Cancer Support Community. 
  • It’s also a good idea to consider financial and legal aspects: Understand insurance, explore financial aid, and prepare legal documents as appropriate. 
  • Maintain a healthy diet, engage in regular physical activity and incorporate enjoyable exercises into your daily routine. 
  • Take good care of yourself – Lean on friends, family, and support groups for emotional and practical support. 

Remember, you are not alone on this journey. By creating and following a Survivorship Care Plan, you’re taking an important step toward living well after cancer. To learn more about cancer survivorship and access support resources, visit powerfulpatients.org.  

Peer Insights | The Power of Patient-Centered Care

What’s important to know about patient-centered care? PEN’s Aïcha Diallo discusses key aspects and benefits of patient-centered care, the impact of patients engaging in shared decision-making, and treatment adherence in relation to cultural factors. 

See More from EPEP CLL

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Peer Insights | Recognizing Implicit Bias and Respecting Patients’ Choices

Transcript:

Dr. Nicole Rochester:

Every one of us wants to receive care that addresses our individual needs. It seems like a given, but unfortunately, this is not the same story for everyone. I’m fortunate to be joined today by Patient Empowerment Network’s Vice President of Programs, Aicha Diallo, to discuss this important topic. Aïcha, what are the key aspects of patient-centered care? And why is this an important area for providers to focus on?

Aïcha Diallo:

The key aspects of patient-centered care include respecting your patients’ preferences, hearing them out, and really understanding where they’re coming from and what they want. Coordination and integration of care is also very, very important. Providing patients the information and the education that you can provide to them. And if those resources are not available, it’s important to seek the resources and be able to connect them with even additional external resources that they may benefit from.

It’s also providing them the access to care that they need. It’s physical comfort. It’s providing emotional support. It’s that continuity and transition and that involvement of family and friends. It’s making them a part of the patient, a part of them being present, about them making the decision to either engage in a specific treatment option or coming up with the best treatment option for them. And why this is important for healthcare professionals to be aware of is because it allows them to meet their patients and their families exactly where they are and be able to provide them with the equitable care and the services that they need.

Dr. Nicole Rochester:

Thank you so much, Aïcha. Can you speak to the importance of involving patients in decision-making processes at the outset of care?

Aïcha Diallo:

Absolutely. Involving your patient in general and shared decision-making is key. I would say it’s important to be able to speak to your patients and speak with your patients as opposed to speaking at them. It’s about respecting where they’re coming from and what their needs and their wants are. It’s about opening up the door for them to share what their goals are, so they could be involved in their care. It’s about giving them that platform, the autonomy to make their own decisions and to be at the driver’s seat of their care.

Dr. Nicole Rochester:

Thank you. And lastly, Aïcha, we know that cultural factors can sometimes impact treatment adherence. So given PEN’s strong presence in the cancer community, I’d love for you to talk about treatment adherence and its connection to various cultural needs and differences.

Aïcha Diallo:

Adherence is really important. Without shared decision-making I feel that it’s very difficult to obtain as a healthcare professional adherence from your patients. One thing that is important for healthcare professionals to understand is that adherence is an active choice that is made by the patient to follow a daily regimen, whether that is taking their medications or exercising every day or even honoring their doctors’ appointments. And while this may have been a conversation with their patient or even prescribed by the healthcare teams, one thing to keep in mind is that the patient is taking the responsibility for their own well-being and is making those actions, not because they were told, but because they fully understand what needs to be done in order for them to achieve their goals.

And without great communication and without the ability to engage your patients in their care, some patients may feel or may be compliant while they’re not necessarily adherent. So that may create a confusion, but what you really need is both. Some of your patients may not feel entirely comfortable asking you questions that could even benefit them because maybe culturally speaking, they don’t want to question their healthcare professional, they don’t want to question their authority. So they will do as they’re told, but it’s important for patients to be adherent and compliant. It’s important to give them that platform to make them feel comfortable and present in their care, so they could be entirely engaged and empowered.

Dr. Nicole Rochester: 

Absolutely. Thank you so much, Aicha. Another wonderful discussion and thank you for your expertise.

Aïcha Diallo:

Absolutely. Thank you very much.


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Empowered Care: A Patient’s Guide to Navigating Endometrial Cancer

Empowered Care: A Patient’s Guide to Navigating Endometrial Cancer from Patient Empowerment Network on Vimeo.

Meet Sharon, a 61-year-old endometrial cancer survivor who knows firsthand the importance of being an active participant in her healthcare. After a two-year struggle with misdiagnosed symptoms and a dismissive doctor, she took charge and found the right medical support, leading to a diagnosis of endometrial cancer.

Sharon’s journey, from diagnosis to treatment and recovery, highlights the vital role of self-advocacy and patient activation. Her story is a beacon for others, especially women of color facing similar challenges, emphasizing the power of being informed, asking questions, and seeking support.

Download Guide | Descargar Guía en Español

See More from [ACT]IVATED Endometrial Cancer

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How Can Gynecologic Oncology Racial Disparities Be Addressed

How Can Gynecologic Oncology Racial Disparities Be Addressed

Transcript:

Being activated is a critical part of endometrial cancer care, especially for patients like me. 

My name is Sharon, I’m 61, and my diagnosis came after a two-year struggle with unidentified symptoms. Sharing my experience is my way of reaching out, hoping it might provide guidance to others facing similar challenges.

My symptoms began with abnormal vaginal bleeding, but my periods had ended over 10 years ago. That had me worried, and my sister encouraged me to see a doctor after I told her about the bleeding. I scheduled an appointment, but my doctor dismissed my symptoms. I felt like he wasn’t really listening to me and decided to find a doctor who looks more like me and would be more likely to listen to me. I found a Black female doctor who was concerned about my symptoms, which had worsened by then. I was also feeling pelvic pain. My new doctor scheduled an endometrial biopsy, and I was diagnosed with papillary serous carcinoma shortly afterward.

With an aggressive type of cancer, my oncologist scheduled a laparoscopic hysterectomy to remove my uterus along with my ovaries, fallopian tubes, and sentinel lymph nodes. I had the surgery within a few days, which was quickly followed by radiation to help ensure any remaining cancer cells were wiped out. My recovery went smoothly, and I continue to live a full life while getting regular scans to ensure I remain cancer-free.

After my cancer experience, I want to educate other women about what I’ve learned about endometrial cancer. Black women have nearly twice the death rate from endometrial cancer compared to white women. Hispanic, Black, and Asian women are not represented in clinical trials at equal rates to white women. And Black women are also diagnosed more frequently with rare but aggressive endometrial cancer forms. Remember that you shouldn’t have to suffer with your pain, and you can advocate for yourself and ask about patient advocates to advocate on your behalf.

Here are my activation tips for patients facing an endometrial cancer diagnosis:

  1. Ask your care team questions to learn about the status of your endometrial cancer, treatment options, and what to expect during and after treatment.
  2. Join a patient support group to offer and receive emotional support.
  3. Last but not least, inquire if a clinical trial may be a potential treatment option for your endometrial cancer.

Remember, stay activated by being informed, empowered, and engaged in your cancer care.


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Cancer Survivorship | An Expert and a Survivor Share Inspiration and Advice

Cancer Survivorship | An Expert and a Survivor Share Inspiration and Advice from Patient Empowerment Network on Vimeo.

How is survivorship defined, and what can one expect after cancer treatment is complete? Dr. Kathleen Ashton, a clinical health psychologist, shares key advice about what to expect in follow-up care and the importance of planning for the future. Dr. Ashton is joined by Erica Watson, a breast cancer survivor, who provides her personal perspective on navigating life with cancer, discusses the impact of peer support, and shares why she’s passionate about patient advocacy.
 
Dr. Kathleen Ashton is a board-certified clinical health psychologist in the Breast Center, Digestive Disease and Surgery Institute at Cleveland Clinic. Learn more about Dr. Ashton.
 
Erica Watson is a breast cancer survivor and patient advocate.
 

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Non-Melanoma Skin Cancer Staging | What Patients Should Know

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Transcript:

Katherine Banwell:

Welcome and thank you for joining us. With us today is Dr. Kathleen Ashton. Dr. Ashton, welcome. Would you please introduce yourself?  

Dr. Ashton:

I’m Kathleen Ashton. I’m a board-certified clinical health psychologist, and I specialize in working with patients with breast cancer and those with hereditary risk for breast cancer.   

Katherine Banwell:

Erica, would you introduce yourself?  

Erica Watson:

Sure. I am Erica Watson, wife, mother, grandmother, neighbor, friend, employee, sister, aunt, all those in addition to a, I’m going to say six-month breast cancer survivor.  

Katherine Banwell:

Congratulations. 

Erica Watson:

So, thank you.  

Katherine Banwell:

Well, welcome to both of you. We really appreciate you taking the time to join us. Erica, I’d like to start with you. When were you diagnosed with breast cancer?  

Erica Watson:

So, I got the official I have cancer, or you have cancer call on the 28th of February 2023. So, a little over a year ago.  

Katherine Banwell:

And how did you work with your team to decide on a treatment plan once you were diagnosed?  

Erica Watson:

Initially I went into my first appointment just automatically knowing that I was going to have a double mastectomy, because I just could not imagine having to go through any part of this process ever again. But then I settled, I listened to my medical team, we settled on doing chemotherapy first and then I made the decision on what type of surgery to have about a month-and-a-half to two months later.  

They allowed me to make the decision. And so, I didn’t feel any pressure or anything like that from them. So, it was really me listening to my medical team.  

Katherine Banwell:

Okay. And how are you feeling today?  

Erica Watson:

I’m good. I had my three-month appointment with my oncologist yesterday. I got a gold star on my blood work, it’s looking great. I’m good, I’m good.  

Katherine Banwell:

That’s such great news.  

Erica Watson:

Thank you. 

Katherine Banwell:

Dr. Ashton, I’d like to start with a definition. If you would tell us what the difference is and the importance of survivor versus survivorship?  

Erica Watson:

Sure. So, people define being a breast cancer survivor at different points along the way, and even different oncologists really think about it, dating it from different times. So, some people date it from when they were diagnosed. Other people will date survivorship from after they had their surgery or after they completed chemotherapy.  

So, everyone looks at it a little bit differently. But survivorship is really more of that process throughout someone’s life after breast cancer; taking care of surveillance, working with their doctors, ongoing lifestyle changes that they may be undergoing after breast cancer.  

Katherine Banwell:

And, Erica, what does survivorship mean to you?  

Erica Watson:

I am just living with a purpose now, I guess. I have not defined where my survivorship term starts or ends or starts actually. So, I’m intentional about laughing more and doing things that bring me joy and sharing my story.  

I try not to pay attention to the small things in life that used to get me all stressed out. I talk to my medical team, I ask questions, I dance in the mirror when I hear good music. I mean, I’m just trying to get the most out of life that I can at this point. And I wake up every day with gratitude, and I just go.  

Katherine Banwell:

Yeah. Do you feel like you’ve had to adjust to a new normal?  

Erica Watson:

Oh my gosh, yes. I tend to, I guess I’ll say question things a little bit more than I did in the past, and specifically as far as my medical team; I’ll ask if I can do a thing or another with traveling, whether or not I can exercise or sit in the sun.  

I have to pay more attention to my body. I have to pay more attention to the things that I eat, those kinds of things. Which I really didn’t pay too much attention to in the beginning, but breast cancer is a part of my life and will be a part of my life. It does not define my life, but it is a part of it, and I have to pay attention to that.  

Katherine Banwell:

Dr. Ashton, the next question goes to you. We often hear about the importance of creating a survivorship care plan. What is that exactly, and where do you and a patient start when you’re creating such a plan?  

Dr. Ashton:

That survivorship care plan is such an important part of the process. I think for many patients it really helps relieve a lot of anxiety. When you’re finished with your active treatment, there’s really a thought of what next, right?  

You’ve just gone through surgery or chemotherapy, radiation; you’ve been actively treating the cancer, and then you’re kind of left like, what is this new normal? So, one of the things we do at the Cleveland Clinic is patients have a survivorship visit.

So, it’s either with their oncologist or with a nurse practitioner, and they spend an hour with the patient and go through what are all the treatments you’ve done? What’s your plan for the next five years? How often do you come in to see your doctor? What kinds of tests are you going to get, what kind of scans? What you need to be looking for? What would be a sign of something to be concerned about? And then a big part of that plan is also the lifestyle changes that occur in survivorship. So, eating a healthy diet, exercising regularly, stress management, getting enough sleep. And that’s where as a psychologist a lot of times I come in.  

We have a group called Breast Cancer STAR (Survivorship Tools and Resources), so it’s a five-week program for our survivors to work on changes with lifestyle, stress management, all of those changes in their life moving forward.  

And that’s a virtual group program where survivors can talk to each other about that survivorship plan as well as learn some skills to take with them.  

Katherine Banwell:

It’s great to have that support. We know that this varies by cancer, but what is the typical follow-up that occurs when monitoring for recurrence?  

Dr. Ashton:

So, I usually would probably leave that question to the oncologist, and so many different kinds of breast cancer are going to have different kinds of monitoring. But very often that first year patients will check in with their oncologist every three months. They’ll have a breast exam at many of those visits. If they still have breast tissue, then they would have mammograms or possibly MRI’s. So, there’s some scans that go along with that. And many patients are also on ongoing medications or treatments that go for sometimes several years after their initial breast cancer diagnosis.  

So, they would be checking in with their oncologist on those medications at each visit as well.  

Katherine Banwell:

Erica, the follow-up care that goes along with being a survivor can be anxiety-inducing, or cause some call it scan-anxiety. What advice do you have for coping with these types of emotions as a survivor?  

Erica Watson:

As a survivor I will have my first scan next month, but I would just encourage survivors to just be okay with the process, ask questions, as many questions as they possibly can, take someone with them, which was suggested to me.  

I don’t have anxiety necessarily about the scans. My breast cancer was detected by pain or through pain, so I experienced anxiety with that, any kind of breast pain that I experienced from surgery or radiation therapy. And I also would just advise the patient or survivor to just experience the process, allow themselves to be afraid, talk through the reality of what’s really going on, talk through the fact that they had all the treatments, they did everything that was in their control as far as going to the appointments, getting all the care, to stop the reoccurrence.  

Katherine Banwell:

Right. Dr. Ashton, what can you tell us about the importance of peer-to-peer support in cancer care and survivorship?  

Dr. Ashton:

I think peer-to-peer support is so important for survivors.  

It really gives survivors the chance to talk with other people who really understand what it’s like going through this process. So, as a professional, I can tell patients the science and give them tools and what works, and their oncologists can tell them what’s important for them to do, but the lived experience is so important. So, in our group program they get some of that peer-to-peer support. And when Erica says, “Hey, it really helped me to bring someone with me to my scan,” a patient really hears that in a different way than when your professional tells them.  

So, it’s just that much more meaningful. There’s another program at the Cleveland Clinic called Fourth Angel, and it’s a national program that any patient can take advantage of, and it matches you with a peer mentor.  

And they often check in by phone with each other, someone who’s been through a very similar experience, and patients often find that incredibly helpful. And many patients that move into survivorship, then they become a mentor, and they’re able to help another patient.  

And that really feels good to be able to give back in that way.  

Katherine Banwell:

Yeah, that’s wonderful. Erica, you have a family history of breast cancer, so you’ve been really vigilant in your care over the years. What advice do you have for other patients and family members facing a cancer diagnosis? Where do you find your strength?  

Erica Watson:

Well, I got it from a handful of sources. I learned a lot on my faith. I talked to my family members who were diagnosed with breast cancer and that are currently living. I was not afraid to ask questions. I cried a lot. I just really leaned heavily on my medical team.  

I feel like it is so important as Dr. Ashton was saying to be able to reach out or connect with someone that has actually lived the experience, because I was one of those women. I heard it from the medical team, but they were leaning on science, and I needed someone that actually went through what I was going through. That allowed me to understand and to trust what they were telling me. Not that I didn’t trust my medical team, but the family members or anyone else that I leaned on to support actually lived the life that I was getting ready to live, experienced what I was getting ready to experience. So, that really helped me a lot.  

Katherine Banwell:

Yeah. As you navigated care, were there any obstacles or hurdles that you faced?  

Erica Watson:

Well, the main one that sticks out to me today was as an African American woman, I didn’t feel as if I had a lot of resources that were catered to me and my needs. And so, that kind of stifled my search for research or for resources, because I didn’t have an experience with women that looked like me, that talked like me, that lived like me, that would have experienced the hair loss like I experienced, my skin changes with the sun.  

So, those were the obstacles that I faced, and it was tough. Of course, I had my family to lean on, I have my aunt, my sister, but there are so many women out there that don’t have family members that have gone through breast cancer, and I feel so like it’s necessary for us to be able to see and to experience the diversity in that area. 

We make up a huge demographic, but we are just not represented the way that I feel like we should.  

Katherine Banwell:

Yeah, I absolutely agree. And I know that the medical community is trying to reverse this issue; they’re trying to make it easier and more supportive for people of all colors and races. Why do you think it’s important for survivors to actually be an advocate and help other people as they navigate cancer?  

Erica Watson:

I believe the most important reason is just so that they know that they’re not alone. We can, as a breast cancer survivor, I know it was – my first response was to just go into a shell and hide.  

I didn’t want to share it with anyone. Of course, my family did not, they would not have understood, and this was before reaching out to my sister and my aunt. But yeah, just so that we’re not alone, to know that there are other women out there that are experiencing and feeling the exact same thing that we are experiencing and feeling; the questions, the concern, the guilt, the fear, we just need to be able to know and connect in that way. So, I just – yeah, I’m so passionate about that, and that’s it.  

Katherine Banwell:

Yeah. It’s so helpful to know you’re not alone in how you’re feeling, in some of the symptoms you’re having, to know that other people have experienced the same thing is vital.  

Dr. Ashton, primary and preventative care continues to be essential regardless of someone’s diagnosis. What tips do you have for keeping up with overall health and well-being?  

Dr. Ashton:

Yeah, I think as women we often put ourselves last in the priority list. And for breast cancer survivors, well-being is incredibly important. And I tell patients it’s not an optional thing or something that you’re being selfish by doing, it’s actually part of your prescription as a survivor. So, the time that you take for stress management, whether it’s meditation or being outdoors or whatever brings you joy, is really part of your prescription for wellness in survivorship. Exercise is incredibly important. They recommend for survivors 150 minutes of exercise a week and two days of weight training, keeping your weight normal.  

So, all of the healthy eating, healthy habits are actually what’s going to help prevent recurrence. And they’re things that are in patients’ control, so that feels good too to be able to take that time and recognize that it’s an essential part of their health, not an optional part.  

Katherine Banwell:

Erica, what advice would you give to someone who is newly diagnosed with cancer?  

Erica Watson:

I would tell them to process, take some time, slow down, trust family members and friends, listen to their medical team, know and realize that they are not alone, seek resources, and just to know that it’s not their fault, because I dealt with a little, a smidgen of that in the very beginning of my diagnosis. And to understand that there is, that today’s breast cancer is not yesterday’s breast cancer; it looks different, it feels different, and that they can do it.  

That is something that is vital. I believe that we – I know when I was first diagnosed, I remember looking in the pamphlets and hearing stories, and I just knew that there was no way that I was going to make it. I couldn’t do the sickness, I didn’t want to deal with the hair loss, all the things; I didn’t want to do with the pain, all the things that came along with a breast cancer diagnosis and treatment from chemotherapy, radiation, or surgery, but it’s not like that today. And so, I just would encourage the survivor or the patient to just be aware, do research, but don’t Google as much research, because it’s not a lot of good information on Google; it will definitely scare you.  

Katherine Banwell:

No, that can be dangerous.  

Erica Watson:

Yes, it will, it will scare you. But most of all, lean on family members and friends, ask for help, which is something that I did not do initially, because I am a woman and I can do it all on my own, and that didn’t work out well for me in the beginning. But just seek guidance, just reach out to someone that they know, advocate, any kind of mental health resources that are offered through the hospital or even in the community through nonprofit organizations, to do all those things. And Dr. Ashton has really encouraged me and pushed me to think of myself, to put myself first and understand that breast cancer or cancer in itself is a disease.  

It’s sickness, it needs to be treated properly, and that’s what I would give them.  

Katherine Banwell:

Yeah. I want to thank both of you so much for joining us. And do you have anything else to add?  

Erica Watson:

Well, I’m very excited to hear Erica’s point of view as she goes through this process, and excited for her to share her experience as an African American woman. I think absolutely as healthcare providers in the system we need to do better, and I know her reaching out in this way is going to make a difference for someone listening to her story who is thinking about getting a mammogram or is starting to go through treatment. So, I just appreciate her today.  

Katherine Banwell:

Yeah. Erica, do you have anything to add?  

Erica Watson:

I just want to thank Dr. Ashton. I want to thank you. I just want to thank – I’m grateful and honored for the opportunity to be able to share my story. I am a true believer, and if it helps one person then that’s mission accomplished.  

And I believe in locking arms and let’s just, accomplishing the goal and fighting this fight together.  

Katherine Banwell:

That’s a great way to end the interview. Thank you both again so much, it’s been a pleasure.  

Erica Watson:

Thank you.  

Dr. Ashton:

Thank you.

What Is the Role of a Care Partner in Bispecific Antibody Therapy?

What Is the Role of a Care Partner in Bispecific Antibody Therapy? from Patient Empowerment Network on Vimeo.

How can a myeloma care partner support a bispecific antibody therapy patient? Nurse practitioner Alexandra Distaso from Dana-Farber Cancer Institute explains ways that care partners can offer logistical and emotional support and shares tips for staying well-informed and organized during the treatment journey.

Alexandra Distaso, MSN, FNP-BC is on the Multiple Myeloma Nursing Team at Dana-Farber Cancer Institute.

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Transcript:

Katherine:

As I mentioned, Alexandra, this program is aimed at helping care partners understand the process and how they can support their loved ones. What do you feel is the care partner’s role?  

Alexandra:

I feel like the best way for care partners to support patients is to kind of take the time to learn about the myeloma and the therapy and try to do the best they can to just be there for not just moral and emotional support, but the other little things that they may need. Coordinating rides, if it’s a family member, asking friends for help.  

And then other things like insurance phone calls can be incredibly time-consuming and taxing. Or waiting at the pharmacy to pick up medications. Any, even little things like that, I think take a huge load off the patients who are doing this day in and day out.  

Katherine:

Yeah. Are there key questions that care partners should ask as they begin the process?  

Alexandra:

I think the best thing that patients and caregivers can do is if they have questions prior to the visit is to make a list. ‘Cause, I’m guilty of this myself, as soon as I show up at my doctor’s office, I completely forget what I wanted to say. So, making a list prior to the appointment, I think, is hugely beneficial. And then I don’t think that it’s ever a bad thing to ask for the doctor or nurse practitioner or pharmacist, whoever you’re meeting with, to see if they can repeat themselves. We’re putting a lot of information into a very short period of time.  

And to try and keep track of, again, schedule, supportive care medication, when you’re going to need to be in the hospital, how long, what your follow-up will be, taking notes during the visit or asking to hear it again is always helpful. Not even just for the caregiver, but sometimes for the patient who’s still trying to wrap their head around some of the change in therapy.  

Katherine:

Right. Yeah. That’s really good advice. As we’ve covered, it’s not always easy being a care partner. What would be your best advice for those who are caring for someone undergoing bispecific antibody treatment?  

Alexandra:

I would say it’s hard to put out how important care members are to the entire care team. Again, not just for the logistical, getting the patients to appointments, getting their medication, but really having someone the patient feels comfortable to be able to lean on. And again, they may say, “I’m so overwhelmed in these visits, and I really need some help.  

Could you ask these things?” Helping them keep track of all these medication changes and appointments and visits and any sort of even small things like grabbing them a water so that they’re staying hydrated. Those little things make such a difference to people. And I think doing those things, no matter how small they feel, really helps support the patients through these changes in therapy. 

The Value of Myeloma Support Groups and How to Join

The Value of Myeloma Support Groups and How to Join from Patient Empowerment Network on Vimeo.

How might joining a support group benefit you when coping with a myeloma diagnosis? Yu Mee Song, an oncology social worker, discusses the value in peer-to-peer connection and shares tips and resources for finding a support group.

Yu Mee Song, LCSW, OSW-C is a Social Work Program Coordinator at the Center of Excellence for Multiple Myeloma Program at Mount Sinai Hospital. Learn more about Yu Mee Song.

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Transcript:

Katherine Banwell:

Yu Mee, what is the value of myeloma support groups? And how would you encourage someone to join if they’re hesitant? 

Yu Mee Song:

So, it’s – it’s – it’s not for everyone. And you may need to try more than one support group to find the one that’s a good fit for you. But it does provide a sense of belonging and the decreased feeling of isolation, like you’re going through this alone, to be in a group with others who – who kind of – who get you. And I’ve had a lot of people say, you know, it’s really , really hard to talk about this – what I’m going through – with my friends or family they just don’t get it. And it’s so good to see – and  we facilitate some groups here for newcomers to join. And as soon as they, you know, speak about something and the whole group chimes in and, yes, we know what you’re going through and give their – share their story and their experience. And it’s so inspiring and encouraging for them. 

Katherine Banwell:

Yeah. It’s incredibly valuable.  

Yu Mee Song:

They share all sorts of tips on things like side effects and – or how to – how to talk to your doctor about something if you’re uncomfortable bringing it up or, um, even asking for help about, um, you know, for counseling or more emotional support that you may be embarrassed to ask about.  

Katherine Banwell:

How would a newly diagnosed myeloma patient find out about something like a peer-group session or peer support? 

Yu Mee Song:

There may be some local. But now there are many national organizations that you can tap into. I would start, again, like, ask – speaking with your oncology social worker. But I would start with some of the national organizations like Multiple Myeloma Research Foundation, International Myeloma Foundation, The Leukemia & Lymphoma Society, platforms like this the Patient Empowerment Network, or HealthTree.  

So, if you start with any of the big myeloma organizations, they can help guide you. There are patient navigators that can kind of guide to your – provide guidance to what you’re looking for, whether it’s peer-to-peer support, support group, or other resources.  

Advice for Myeloma Patients Undergoing CAR T-Cell Therapy

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How can patients undergoing CAR T-cell therapy be prepared? Yu Mee Song, an oncology social worker, shares three key pieces of advice for patients and care partners getting ready for CAR T-cell therapy.

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Transcript:

Katherine Banwell:

For patients who are considering CAR T-cell therapy, what three key pieces of advice would you have for them?  

Yu Mee Song:

I think it’s really important to have someone accompany you to maybe the initial consultation.  

Or if they can’t physically be with you to have them available by phone or to listen in on a conference call because there’s so much information that’s provided. It’s – it’s a multi-step, complicated process, so it’s good to have a – another set of ears helping you to stay organized, take notes maybe, keep a calendar.  

Another thing is to plan ahead. Plan for time away from work. You may need to apply for FMLA. If you are a caregiver of young children or older parents, make arrangements for that. Especially if you live a distance from the treatment center, you may need to stay  close to the hospital for a couple of weeks after your discharge for your CAR T-cell infusion.  

Katherine Banwell:

Yeah.  

Yu Mee Song:

And then I would say another tip is to stay connected to home, so there are many online forums that you can use to – for – for your friends and family to provide support in that way and for you to share information. And maybe bring pictures or something cozy from home to remind you of home because you will be – be away for some time.  

360 Myeloma Care | How Can a Social Worker Help?

360 Myeloma Care | How Can a Social Worker Help? from Patient Empowerment Network on Vimeo.

When coping with a myeloma diagnosis, how can a social worker support you in your care? Yu Mee Song provides an overview of the role of a social worker in myeloma care and discusses the importance of speaking up about emotional issues and beyond.

Yu Mee Song, LCSW, OSW-C is a Social Work Program Coordinator at the Center of Excellence for Multiple Myeloma Program at Mount Sinai Hospital. Learn more about Yu Mee Song.

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Transcript:

Yu Mee Song:

My name is Yu Mee Song. I am, a social work program coordinator in the Multiple Myeloma Program at Mount Sinai Hospital.  

Katherine Banwell:

Excellent.  

Yu Mee Song:

Thank you for having me.  

Katherine Banwell:

Thank you for joining us. Can you tell us more about the role of a social worker as it relates to myeloma care?  

Yu Mee Song:

First of all, I feel very, very fortunate to be working in the myeloma program amongst world-renowned myeloma specialists with a team of nurse practitioners, nurses, transplant and CAR T coordinators, patient navigators.  

And our social work team is a team of five. And we can receive referrals from any of these team members at any point in a patient’s journey, from the moment of diagnosis throughout their treatment trajectory in both the inpatient and the outpatient settings for emotional needs and support to practical needs. 

Katherine Banwell:

Yu Mee, when a myeloma patient comes to see you for the first time, what are some common concerns they might be having? 

Yu Mee Song:

That really depends on the – on the patient and – and where they are in their life situation when they’re diagnosed. You know, if they’re working, they may have considerations about reducing work or not working or not being able to. A lot of practical concerns, maybe the first issue that they have to deal with such as transportation and getting to and from the cancer center now three times a week, or navigating the healthcare system for the first time in their life, and insurance or just coping with the fact that you’re now dealing with the diagnosis of myeloma and what does that mean and how are you adjusting to this? So, it really varies.  

Katherine Banwell:

If patients are facing emotional issues, why is important for them to speak about it? And – and what support is available for them? 

Yu Mee Song:

That’s – that’s a great question that I always like to stress the importance of to the patients and also the caregivers because they’re usually the ones that first notice any changes, maybe in their mood or the emotional state.  

If you’re holding things in, you’re, you know, feeling like you’re alone in this fight or your fears of what might happen, that can increase your anxiety, it might lead to depression.  

So, it’s really important to speak about it, ask your care team about it. It may be as simple as, you know, that’s a side effect of a medication that you’re on, and maybe we can reduce the dose or maybe we can tell you to take it at a different time of day. 

And that’s so helpful to know that.  

There may be help for you. You may be referred to a mental health professional, support groups, and would also improve your – your relationships within your family because obviously your emotional state it’s – it, you know, myeloma is just not impacting you but all of the loved – people around you.  

Katherine Banwell:

That leads us into the next question. Some patients don’t have a partner to help them go through this – this journey with their myeloma. So, do you have any suggestions for how myeloma patients can find support and where? 

Yu Mee Song:

I would say, first start with asking your care team or ask – speaking with an oncology social worker. Support doesn’t necessarily mean your – your partner. It can be in the form of support groups that are either in-person, there are many groups online.  

It could be a peer – one-on-one peer support. Someone who’s gone through what you’ve gone through.   

How Are Common Breast Cancer Concerns Addressed?

How Are Common Breast Cancer Concerns Addressed? from Patient Empowerment Network on Vimeo.

How can common breast cancer concerns be addressed? Expert Dr. Bhuvaneswari Ramaswamy explains issues that can arise during a patient’s breast cancer journey and discusses how they can be managed.

Dr. Bhuvaneswari Ramaswamy is the Section Chief of Breast Medical Oncology and the Director of the Medical Oncology Fellowship Program in Breast Cancer at The Ohio State College of Medicine. Learn more about this expert here.

See More from Thrive Breast Cancer

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Transcript:

Katherine:

When discussing cancer treatments with a patient, they have worries, obviously. What are some common concerns that patients typically have, and how do you counsel them?

Dr. Ramaswamy:          

I think the most common concern that they have is that their whole life has changed now. And that they’re going – this cancer is going to come back and when it comes back, they’re going to die. So, I mean, the death and the fear of recurrence is probably the most common concern. And I think the second common concern is the treatment-related toxicities that we talked about a little bit, particularly the hair loss or other things that’s going to change their lives forever after that. So, I think what is important to discuss to me, the most important thing to discuss is to clearly state to the patient there’s chances of cure. Meaning to say, your probability of being cured of this cancer, if you do this, this, and this is this high.

But there is, of course, a chance of 10 percent, 15 percent, 20 percent, 25 percent depending on the subtype of cancer they have  and the staging and their age and all of that, of this coming back. If you, even if you do the treatments, but if you don’t do the treatments, the chances of coming back is this much higher, okay?

So, I think it’s important for them to know it is still very difficult because it doesn’t really reflect what is going to happen to them. It reflects what’s going to happen to 100 people with similar cancer. So, again, that is important to explain, but what you can explain to them is if you pull out 100 out of the 100 pellets in a box if you pull out 90 pellets, they’re all going to be cured. There’s only going to be 10 pellets   that could have a recurrence. So, some ways to make them understand statistics. Not everybody comes with a good understanding of all of this. So, I think that’s important. And I think that also it’s important to talk about the treatments and how it effects – and how long it can affect them.

That they can get back and the goal of every provider is to really, the way I explain to them, you’re going to take a diversion in your life, but my goal is the diversion meets the main traffic at some point. That is the goal. And then you just go on smooth sailing. Of course, nobody knows the future, anything could happen, but we are here. And I think  the other thing that’s important, yes, we could have metastatic disease, but you are not going to, I mean,  I’m not saying nobody would, but most people with metastatic breast cancer live for several years.

And there are several treatments and new treatments  coming like I said, every year. So, having that positive approach, even if it comes back is so important for them. So, I think those are the ways; educating, answering their question, providing emotional support, and if they need counseling, addressing that. I think those are very important.

MPN Patient Shares Survivorship Tips, Recognizing Social Media Toxicity

MPN Patient Shares Survivorship Tips, Recognizing Social Media Toxicity from Patient Empowerment Network on Vimeo.

 Myeloproliferative neoplasm (MPN) patient Julia Olff has experienced the positive and negative aspects of online information and social media in her search for support. Watch as she shares her support journey with what she found helpful and what became toxic in her efforts to gain MPN information and emotional support.

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Transcript:

Julia Olff:

So, I think social media has many advantages, especially when you have a rarer illness like myelofibrosis. I was diagnosed with myelofibrosis in 2008, and there really was not a lot of good information yet about the illness online, and I had not met anyone who had my myelofibrosis, so I really appreciated being able to go to places like Facebook in their earlier days, with my illness, to find organizations to find other people with the illness, I think learning from other people in terms of their strategies for coping with her illness, tips for dealing with side effects, and other people can answer questions about the physicians and nurses just can’t because they don’t experience it directly, how something feels sort of setting your expectations for a treatment can be really helpful, and I think that’s where social media really shines, is creating community and connecting it to others and learning from peers. The downsides though, I think, are the amount of opinion, unfounded opinion, not sourced opinion that exists that I saw on social media, and then the angry vitriol or kind of disagreement that I found really harmful to my mental health.

I’m always trying to balance how I feel with my mindset, and there are times that that’s easier to do, and times that that’s harder to do, so when I’ve been particularly unwell or just had a hospitalization, I feel like I have…I’m more vulnerable, I have less of a threshold for negativity and angry commentary, and that you can find that on social media, unfortunately, and then, of course, there’s… what I find troubling or not helpful are the opinions of other people who relay people who don’t necessarily have the depth of credible information about a treatment study, what’s right or wrong as it relates to the latest in myelofibrosis treatment, and treatment advances. So it’s helpful to hear about what it was like to have a stem cell transplant from someone with myelofibrosis, but yet I can’t rely on an individual for credible scientific medically sound information. So I think for me, I actually deleted my Facebook account in 2020, but I did keep my Twitter account because there I follow physicians’ epidemiologists, and of course, MPN organizations so that I can know about upcoming webinars or patient events, or new treatments. So that’s been really helpful.