Five Ways the PEN Empowerment Lead Program Can Support Your Cancer Journey

Our Empowerment Lead program is here to support patients and families around important topics and to provide navigation for the path to empowerment. Our Empowerment Leads are highly passionate empowerment ambassadors volunteering from around the U.S., engaging with the PEN network of cancer patients and care partners, and serving as a direct channel of empowerment.  

1. Utilize the PEN Text-Line

By texting EMPOWER to +1-833-213-6657, you can meet someone with your same condition  and  receive personalized support from our Empowerment Leads. Whether you’re a cancer patient, or a  friend or loved one of a cancer patient, PEN’s Empowerment Leads will be here for you at every step of your journey.

2. Watch PEN Videos

Taking a proactive role in your well-being as a patient is of utmost importance for optimal health outcomes. And PEN videos are a trusted source when seeking out information from cancer experts, patients, care partners, and PEN Empowerment Leads. Whether you’re a newly diagnosed patient, care partner, long-time cancer patient, or other concerned patient advocate, PEN videos provide a valuable way to learn about cancer patient stories, testing information, questions to ask your cancer specialist, how to support and be supported as a care partner, ensuring that your patient voice is heard, and more.

3. Read PEN Blogs

Our PEN blogs are a rich source of support information on a wide range of topics for cancer patients and care partners. The blogs serve as another way to gain knowledge and advice for navigating and coping with your cancer journey. Some recent topics have included mental  health advice, financial support resources, nutrition and exercise tips, COVID-19 vaccine guidelines, patient stories, caregiver advice, genetic testing, and cancer news updates.

4. Download and Use Our Activity Guides

Initiated as a patient and care partner tool at the beginning of the COVID-19 pandemic, our PEN-Powered Activity Guides continue as a way to stay connected and to relieve stress during your cancer journey. Packed with information and support resources, the Activity Guides provide content including clinical trial information and experiences, patient stories and lessons learned, advice from care partners, healthy recipes, music playlists, coloring pages, and more. If you’re a busy cancer patient or care partner, the Activity Guides are easy to print to take with  you to read during travel and waiting room time for cancer care appointments.

5. Learn About Our PEN Empowerment Leads

If you don’t have time to watch a video or to read a blog right away, you can browse our list of PEN Empowerment Leads. You can easily see the community that each Empowerment Lead serves  and read a short bio about their experience as a cancer patient or care partner.

By taking advantage of our PEN Empowerment Lead resources, cancer patients and care partners can gain knowledge and confidence to navigate their own cancer journeys.

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How Can Healthcare Systems Better Approach Whole Person Care?

How Can Healthcare Systems Better Approach Whole Person Care? from Patient Empowerment Network on Vimeo.

Healthcare systems can take steps toward better whole person care. Dr. Nicole Rochester and Aswita Tan-McGrory share solutions that can help overcome trauma and lack of trust to work toward healing.

See More From Rx for Community Wellness

Related Resources:

Why Is It Important to Address Whole Person Care?

Why Is It Important to Address Whole Person Care?


Transcript:

Dr. Nicole Rochester:

So we’ve talked about all the things that need to happen in an ideal world, but as you described earlier, the system in which healthcare is provided in our country is dysfunctional, it’s broken, and so as someone with your background, what are some of the solutions? What are some of the things that healthcare systems and organizations can do with all these limitations that we’ve all been talking about today?

Aswita Tan-McGrory, MBA, MSPH:

This actually came from my colleague who’s a psychiatrist, and we did a webinar together, and she mentioned this, and I just really loved it as a solution which is talking as a pathway to healing, when we think about…a lot of what I heard today, the big thing is a lack of trust between a patient and a provider or a patient and a healthcare system, there was so much trauma in our communities that we don’t talk about, and so I would say that like…

One solution is, we as a system need to talk about these challenges more openly or more…I mean I have this sign behind me it says, “Get comfortable being uncomfortable to talk about racism.” But I think also within our own communities, we need to talk more about the challenges, the things that we just sort of tolerated that are not okay anymore, and getting mental health care, acknowledging that we are disproportionately attacked when we go out on the streets, all of those things, we need to more openly talk about, and that is a pathway to healing, which I think this country really could use. And so my solution is simple but difficult, but probably cheaper than any other solution that I would offer to fix the issues. I think we just need to start there, yes, we can do many things, but I think talking about this as a pathway to healing would go a long way.

Dr. Nicole Rochester:

Wow. Talking as a pathway to healing. That is powerful.

Advice From a Cancer Survivor for Better Whole Person Care

Advice from a Cancer Survivor for Better Whole Person Care from Patient Empowerment Network on Vimeo.

 How can better whole person care be achieved by patients and healthcare providers? Dr. Nicole Rochester and Sasha Tanori discuss ways that care can be improved to work toward optimal patient care.

See More From Rx for Community Wellness

Related Resources:

How Can Cultural Competency Play a Role in Your Care?


Transcript:

Dr. Nicole Rochester:

If you had some advice that you could give from a patient’s perspective, and maybe you’re talking to a policy maker or healthcare providers, but how can we do better in this area as it relates to whole person care, culturally competent care?

Sasha Tanori:

I would definitely say take your patients more seriously and not just like one-offs, okay, bye. A lot of the time, they just do a couple of tests and they’re like, “Oh well, we can’t find anything, so let’s just move along,” and there needs to be more conversation as well.

A lot of the doctors will come in and talk to you for like you said, 15 minutes, and then it’s like, “Okay, you know, well, we can’t find anything wrong, so just go.” And it’s like, “No, let me explain everything, let me explain how I’m mentally feeling, how I’m physically feeling, how stressed out feeling, how emotionally I’m feeling.” And there are just so many different layers to just one, if you come in and say, “Oh, well, my hip hurts.” Okay, but why I explain more to it, not just okay let’s do an x-ray and you leave. Like there needs to be a lot more conversation going on between the patient and the doctor, there needs to be a lot more understanding where it could also be stress as it relates to work, it could be stress related to family, to love the ones…to kids, to spouses, there are so many different things on top of that, that’s more than just, you know, “Hey, you know like, I just need a prescription,” and you can go. There’s so much more conversation needs to be have then I really wish that a lot more healthcare providers would have that conversation with them, I know they don’t always have the time, they’re busy, but at least a little bit more compassion, a little bit more understanding, going about when it comes to patients.

Dr. Nicole Rochester:

I appreciate that, and you’re right. The time is an issue. And I will tell you as a physician and as somebody who has tons of physician friends, it causes internal conflict within the doctors, because I don’t know any doctor that got into this for any reason, primarily, other than to help patients, and so to be placed in these situations where you know that you’re falling short of providing the care that your patients need is actually quite disturbing.

How Does Stress Correlate to Our Physical Ailments?

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

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

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Related Resources:

Advice From Cancer Survivor to Better Whole Person Care

Why Is It Important to Address Whole Person Care?

Why Is It Important to Address Whole Person Care?


Transcript:

Dr. Nicole Rochester:

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

Dr. Broderick Rodell:

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

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

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

How Can Cultural Competency Play a Role in Your Care?

How Can Cultural Competency Play a Role in Your Care? from Patient Empowerment Network on Vimeo.

Cultural competency, also known as cultural humility, can help provide better care. Dr. Nicole Rochester and Sasha Tanori discuss barriers to diagnosis and Sasha’s experience as a Mexican American patient in the healthcare system.

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Related Resources:

Advice From Cancer Survivor to Better Whole Person Care

How Does Stress Correlate to Our Physical Ailments?

How Does Stress Correlate to Our Physical Ailments?


Transcript:

Dr. Nicole Rochester:

Sasha, from your perspective, and you mentioned you’re a Mexican American, you mentioned that there were significant barriers for you in terms of getting a diagnosis, having to leave your community. So I love for you to share more about that, this idea of cultural humility, cultural sensitivity, and how that played out or maybe didn’t in your experiences with the healthcare system.

Sasha Tanori:

Yeah, I live in the lowest poverty line of California, so there’s not very much out there at all in my area. Just to get my diagnosis, like I said, I had to leave out of my community to go get the community…to go get the diagnosis. Sorry. And when I did that, it was…a lot of it had to also do with your…for me personally, it has to do with like generational. My father doesn’t believe in diagnosis, diagnoses, to him, it’s like every time I kept coming to him and complaining about this issue, he was just like, “Oh, you’re exaggerating.” Or it would be like the typical [passive], “You’ve got to go and put some Vicks on it, and you’re fine,” type of response, and I kept bugging him and bugging him, and he didn’t believe me, nobody believed me because it’s just such a…like I said, I live in a…what’s the word I’m thinking of, I’m sorry. I live in a community that they don’t take things like this seriously from Mexicans. If a white girl was to go to the hospital and say, “Hey, I’ve got bruises.” It’s like, “Okay, let’s do testing right away.” But I kept…and it is a lot of my generational, I think, trauma from my parents or from my dad mostly, that I didn’t even believe myself, it’s just like…

I kept putting it on the back burner. I kept thinking, “No, there’s nothing wrong. No, there’s nothing wrong. No, there’s nothing wrong.” And I wish that I would have advocated for myself a lot sooner. I wish that I would have taken my own problems more seriously because I didn’t…I didn’t think anything was wrong either. I just kept ignoring it, because that’s just how my mind was trained from my community, from my parents or my dad mostly, and finally, once I was able to… Once I started getting really, really serious, I still didn’t get the help, I needed it right away, it was now kept pushing it back on, “You need to lose weight,” or “You’re anemic,” or “You have this blood disorder, so take this medicine.’ Like nobody really took anything I was saying serious, because I also didn’t take it serious, my community doesn’t take it serious, my dad doesn’t take it serious, and that all just comes back to being Mexican. That’s just how it is when you’re Mexican, you don’t really take any of the serious issues serious, you go to work, and you take care of your family. And you put yourself on the back burner.

You put yourself last. And it was really hard. Yeah, but now that I’ve been through everything I’ve been through, I’m seriously, so passionate about making sure that people, especially Mexicans realize, “Hey, whatever you’re feeling, whatever you’re going through, whether it’s physical, emotional, mentally, it needs to come first, no matter what.”

What Is the Importance of Culturally Competent Care?

What Is the Importance of Culturally Competent Care? from Patient Empowerment Network on Vimeo.

Culturally competent care is another way to work toward health equity. Dr. Nicole Rochester and Aswita Tan-McGrory discuss barriers to providing culturally competent care and ways to address the issues.

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Related Resources:

Advice From Cancer Survivor to Better Whole Person Care

How Can Cultural Competency Play a Role in Your Care?

How Does Stress Correlate to Our Physical Ailments?

How Does Stress Correlate to Our Physical Ailments?


Transcript:

Dr. Nicole Rochester:

We know that due to structural racism, due to inequities, not everybody has access to fresh fruits and vegetables, healthy foods, not everyone has access to green spaces, nice parks where they can go outside and have safety and exercise, and that’s something that we’re being made increasingly aware of is how these social determinants of health impact healthcare. So I want to move and start to talk about the importance of culturally competent care, or I like to call it cultural humility, I don’t know that we can really ever be competent in someone else’s culture. But I want to talk about how those come together, this idea of being respectful and sensitive and aware of an individual’s culture and how that connects to some of the health inequities that we experience. So, Aswita, I know this is an area of expertise for you, so I’d love for you to chime in.

Aswita Tan-McGrory, MBA, MSPH:

Yeah, I mean, I would love it if every physician or nurse or PA started the conversation, what has been the biggest challenge for you in the last six months? If you ask that question, I mean, well the patient will be like, “Oh my God.” And not around just medical issues, they all align, right? If you don’t have housing, you’re going to have medical stress, like Broderick said. I’m just calm listening to you, so I’m going to guess that you have is really positive vibe that’s probably missing for many of us because we aren’t practicing the things that you encourage. And so I would just say that it’s really difficult in the system like I said, we set up, and we mentioned 15 minutes, doctors don’t feel like they have time to ask that question, but you’re doing it in other ways, we implement social determinants of health screening. Well, that’s really that question, right? But you formalize it because it’s not happening, so now it becomes like a screening question. And I will just say that we’re very narrow-minded in our view. I think I have seen a change in the very beginning when we started the work in our center in 2006, a lot of pushback was around thinking about what happens in the patient outside of our walls. It said,  “Well, I didn’t go to medical school to solve the problem of housing, I didn’t go to medical school to figure out how to get somebody on benefits.” And I think the healthcare system realized it doesn’t matter what you do in the hospital, it will be undone when they get home to a situation where they can’t maintain it, they can’t provide that support, they don’t…

They’re stressed out, they have mental health issues, so I think they’re finally getting there. But I think just acknowledging that the person in front of you has different experiences based on language, education, gender, ability, sexual orientation…I don’t think that’s a bad thing. I think you just need to own it, we’re working on it. So I do it better than others, but I don’t know any healthcare system, honestly, that’s nailed this to the way that we probably should, so…I’m with you, Broderick. We don’t do this very well, and most of my job includes dismantling these systems that we built to benefit the people in power and leave everybody else behind, and so that’s been really the focus in our work.

Why Is It Important to Address Whole Person Care?

Why Is It Important to Address Whole Person Care? from Patient Empowerment Network on Vimeo.

What is whole person care, and why is it important to address? Dr. Nicole Rochester, Dr. Broderick Rodell, Aswita Tan-McGrory, and Sasha Tanori discuss the factors that whole person care examines, obstacles of healthcare systems, and how to advocate for optimal care.

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Related Resources:

How Can Cultural Competency Play a Role in Your Care?

How Does Stress Correlate to Our Physical Ailments?

How Does Stress Correlate to Our Physical Ailments?


Transcript:

Dr. Nicole Rochester:

So let’s start with a definition of whole person care. Whole person care is defined as the patient center, optimal use of diverse healthcare resources to deliver the physical, behavioral, emotional, and social services required to improve the coordination of care for patients, their well-being, and their health outcomes. So I’d like to start with you, Aswita, and I’d like to know your thoughts on whole person care, and why do you think that this has been such a taboo subject for so long, and also why is it important for us to address whole person care?

Aswita Tan-McGrory, MBA, MSPH:

I think that part of the problem is that our healthcare system is very, very fragmented, so if we think about…we have primary care, then we have specialty care, then we have care in the hospital, and oftentimes there’s no communication, or communication is sort of inconsistent between those pieces. And so we as a healthcare system don’t promote this idea of whole person care, where you would really look at a patient, see them, see them in their environment, oftentimes, we’re seeing patients in our own institutions and we really don’t know anything about what we’re sending them home to, right? Unless we ask or we screen.

So I actually think it starts with how we build our systems in many ways, as a very sort of system that doesn’t really work to encourage thinking about the patient in the whole way, and that means the primary care physician being part of the care team with specialty care, getting that conversation just from an implementation perspective, I think this is a real challenge in our system, there’s other things as well, but I think that’s a big piece towards how do we ensure that for the patient…and I’m sure all of us have had our own experiences in healthcare where we are like, “They’re not talking to each other. Well, why does this doctor not talk to my primary care doctor? Aren’t they like logging into the same system?” And then if you go outside of your system, it’s even more challenging, so.

Dr. Nicole Rochester:

I completely agree, and I can relate to every single thing you said as both a physician and as a former caregiver, I will say as a pediatrician, I felt that this idea of whole person care, even before it was really a thing that’s kind of incorporated in our practice out of necessity, and we know that it’s important for the health of children to be involved in what happens to them at school and what happens to them in their child care setting, what’s happening in their homes.

And so that was kind of my reference point, but when I became a caregiver for my dad and kind of stepped into the world of adult medicine, I experienced exactly what you describe, Aswita. Just this fragmentation providers not talking to one another, and just a lack of appreciation for the importance of our environment and the things that we’re exposed to in our homes than in our communities, and how that is so intricately connected to our health. So I really appreciate that.

Aswita Tan-McGrory, MBA, MSPH:

Yeah, I want to just tag on something you just said is, I work with a lot of pediatricians and pediatric hospitals, and they are the angels in our system, if I can say so, you…and they definitely have cornered that market of really thinking of social determinants of health or the whole system for their pediatric patients in a way that I think adult medicine is just catching up on. So I’m totally in agreement, like what you said, and I think it’s because you’re working with kids, you can’t not talk to the parents, not think about what is the school like you know so you’re forced to because of that environment, but that’s really a model that we should be using for all of our patients.

Dr. Nicole Rochester:

I completely agree, completely agree. Sasha, what are your thoughts about whole person care and where are your providers gotten it, right, maybe where have they gotten it wrong?

Sasha Tanori:

For me personally, I can’t speak on every Mexican American, but at least for me personally, it’s definitely been a struggle because where I come from, it’s a very like low demographic, we don’t have a whole lot of resources and stuff like that. So getting care is…it’s not the easiest. I’ve had to go to several doctors before I even got diagnosed, and I didn’t even get diagnosed in my hometown, I had to be sent to San Diego because they had no idea what was going on. They were like, “We don’t know what’s wrong with you. Go home.” They kept giving me misdiagnosis after misdiagnosis, and especially with being a plus-sized Mexican American, they were just like, “Oh, if you lose a couple of pounds, you’ll be fine.” And I show up at the hospital with bruises on my body and they’re like, “It’s because you’re overweight.” And I’m like, “That doesn’t really make a whole lot of sense.” So yeah, it was definitely difficult trying to find a good healthcare professional who would listen to me, and I had to leave out of my Imperial Valley, out of my demographic to go find the help because…

And even then, they were kind of like, “Well, it could be this blood disease, it could be this, it could be that.”  And they were like, “Oh well, is anyone in your family…you’re Mexican, is there anyone in your family who has this type of illness, do they have diabetes, or this or that?” And I was like, “No, just help me. Don’t worry about them. Don’t worry about my family. Don’t worry about them. Worry about me.” And finally, I think after two months or something of just going to doctors’ appointments, after doctors’ appointments, they finally were able to give me proper diagnosis. But it shouldn’t have to take that many trips to the hospital and seeing this many doctors for them to figure out what was wrong. And a lot of it is because of, like you said, it’s because of the whole inequity of being a person of color, and I’m only half-Mexican. But a lot of people see that part of me first, and I think they automatically start being prejudiced, or they start judging you based on the way you look, the way you talk and stuff like that, so that way. It’s definitely been a struggle, especially being here in the Imperial Valley, we’re so close to the Mexican border. So they just automatically…they’re like, “No,” it’s just straight up, “No.”

Dr. Nicole Rochester:

Wow, I’m really sorry about that, and I appreciate you sharing your story. What about you, Broderick? And you’re a naturopathic physician, you’re a wellness expert, so you probably fully…not probably you fully understand the importance of whole person care. I feel like that’s at the root of your specialty, so maybe you can give us some ideas about how you approach this and why whole person care is so important.

Broderick Rodell:

Yes, thank you. And I do fully understand the various issues and concerns that can arise when you go to a medical doctor and the specialist and not talking to your primary care physician. And so I focus a lot of my attention on the individual and what you can do as an individual to care for yourself, to educate yourself about well-being and help. It doesn’t deny the various social conditions or structural issues there. It’s just that I feel like we have our greatest amount of power, a great capacity to act and taking as much responsibility as we possibly can in our own care through educating ourselves about how our bodies work, how our mind works, how disease manifestation arises, taking advantage of the tools that we have available to us via the Internet and educating ourselves so that we can be advocates for ourselves when we have a conversation with the various medical practitioners. But I’ve also really emphasized what can I do to maximize my health, my well-being, what choices can I make in my life to make my life into a life with maximum wellness and well-being and minimal suffering? And I do spend a large amount of time focusing on training the mind, reducing stress, educating yourself around, what can I do to eat well, nutrition, what can I do to exercise? To get my body moving, what are the various things that I can do to care for myself to the best of my abilities and not give too much power over to medical doctors on a medical system that not always…

Now, I want to say, I’m going to be careful, I say this can be quite incompetent and that incompetence is associated with, I think what was mentioned earlier, a lack of communication. A lack of communication, the way the system is set up, it’s kind of dysfunctional and the various incentives and not enough time spent with patients. And if you’re not spending enough time with patients and you’re not communicating with other practitioners that are working with these patients, then you’re not going to have a very good idea of what’s going on in this patient’s life and what could be contributing to their illness. So, therefore, it’s incumbent upon the patient, we as individuals, to try to learn as much as we can and try to get our communities involved to help create educational programs to facilitate that education and that awareness.

Dr. Nicole Rochester:

I completely agree, Broderick, the ideas that you mentioned in terms of we as patients and family members and communities educating ourselves about our own health and advocating for ourselves as someone who left medicine to become a professional health advocate, I’m all about advocating for yourself, speaking up, understanding what’s going on with your body. And I know that that can be challenging. And some people feel like, “It’s unfair, if I’m sick, the last thing I should have to worry about is fiercely advocating for myself in a medical setting.” And it is unfair to some degree, but as you stated in this system and the system that we’re currently operating in it is absolutely necessary, and I love that you mentioned mind, body spirit. And as a traditionally trained physician, I will admit that we don’t get that connection, that’s not something that is part of our traditional training. And it’s unfortunate that we kind of just see the body over here, and then the mind over here. And we know that we are all…this is all part of who we are, and that if your environment is not optimal, if your mental health is not optimal, if your spiritual health is not optimal, then that’s going to manifest itself in your physical health.

Equity Rx, Cancer Care for the Whole Patient

Equity Rx, Cancer Care for the Whole Patient from Patient Empowerment Network on Vimeo.

What is culturally competent whole-person cancer care, and why is it important? How can patients maximize their well-being for the best possible cancer treatment outcome? A cancer survivor, naturopathic doctor, and public health scientist share solutions on how the whole patient should be considered in cancer care.

See More From Rx for Community Wellness

Related Resources:

Why Is It Important to Address Whole Person Care?

Why Is It Important to Address Whole Person Care?


Transcript:

Dr. Nicole Rochester:

Hello and welcome to Equity Rx, Cancer Care for the Whole Patient. I’m your host, Dr. Nicole Rochester. I’m a pediatrician and the CEO of Your GPS Doc. This is a Patient Empowerment Network program, and I’d like to start by thanking our incredible partners, Triage Cancer, the Leukemia and Lymphoma Society, and CancerGRACE for their support. Today, we’re covering a very important topic, the significance of treating the whole patient while providing medical care, particularly for underserved communities. For me, when we think about self-care in the context of whole person care, it’s often considered to be a luxury, particularly in BIPOC communities, mental health and self-care are not always prioritized, and we know that this is… And we know that this is important as well for those with the cancer diagnosis, so how do we change that? We’re going to be talking about how to remove this taboo and how to encourage meaningful mind-body connections, we’re gonna talk about what has worked and what hasn’t worked, and most importantly, how do we ensure that Equity, Rx in cancer care occurs on an everyday basis.

How do we make sure that the entire patient, the whole patient is considered. I’m excited to introduce our panel to you today, we have Aswita Tan-McGory. She is the director of Equity and care implementation at Massachusetts General Hospital. She’s also the Director for the disparity solution center. We have Sasha Tanori. Sasha is a Patient Empowerment Network, AML Empowerment Lead and a cancer survivor. And we have Dr. Broderick Rodell He is an educator, a doctor of naturopathic medicine, and a wellness expert. Following this program, you will receive a survey and we’d be delighted to get your feedback, this helps inform future programs that we produce. Please remember that this program is not a substitute for seeking medical care, so if you have any questions following this program, please be sure to connect with your healthcare team on what options are best for you.

So, let’s start with a definition of whole-person care. Whole-person care is defined as the patient center, optimal use of diverse health care resources to deliver the physical, behavioral, emotional and social services required to improve the coordination of care for patients, their well-being and their health outcomes. So, I’d like to start with you, Aswita and I’d like to know your thoughts on Whole Person Care, and why do you think that this has been such a taboo subject for so long, and also why is it important for us to address whole person care?

Aswita Tan-McGory, MBA, MSPH:

I think that part of the problem is that our healthcare system is very, very fragmented, so if we think about… We have primary care, then we have specialty care, then we have care in the hospital, and oftentimes there’s no communication or communication is sort of inconsistent between those pieces, and so we as a healthcare system don’t promote this idea of whole person care, where you would really look at a patient, see them, see them in their environment, oftentimes, we’re seeing patients in our own institutions and we really don’t know anything about what we’re sending them home to, right? Unless we ask or we screen.

So I actually think it starts with how we build our systems in many ways, as a very sort of system that doesn’t really work to encourage thinking about the patient in the whole way, and that means the primary care physician being part of the care team with specialty care, getting that conversation just from an implementation perspective, I think this is a real challenge in our system, there’s other things as well, but I think that’s a big piece towards how do we ensure that for the patient… And I’m sure all of us have had our own experiences in healthcare where we are like, they’re not talking to each other. Well, why does this this doctor not talking to my primary care doctor aren’t they like logging into the same system? And then if you go outside of your system it’s even more challenging, so.

Dr. Nicole Rochester:

I completely agree, and I can relate to every single thing you said as both a position and as a former caregiver, I will say as a pediatrician, I felt that this idea of whole person care, even before it was really a thing that’s kind of incorporated in our practice out of necessity, and we know that it’s important for the health of children to be involved in what happens to them at school and what happens to them in their child care setting, what’s happening in their homes.

And so that was kind of my reference point, but when I became a caregiver for my dad and kind of stepped into the world of adult medicine, I experienced exactly what you describe, Aswita. Just this fragmentation providers not talking to one another, and just a lack of appreciation for the importance of our environment and the things that we’re exposed to in our homes than in our communities, and how that is so intricately connected to our health. So I really appreciate that.

Aswita Tan-McGory, MBA, MSPH:

Yeah, I want to just tag on something you just said is, I work with a lot of pediatricians and pediatric hospitals, and they are the angels in our system, if I can say so, you… And they definitely have cornered that market of really thinking of social determinants of health or the whole system for their pediatric patients in a way that I think adult medicine is just catching up on, so I totally agreement, like what you said, and I think it’s because you’re working with kids, you can’t not talk to the parents, not think about what is the school like you know so your forced to because of that environment, but that’s really a model that we should be using for all of our patients.

Dr. Nicole Rochester:

I completely agree, completely agree. Sasha, what are your thoughts about whole-person care and where are your providers gotten it, right, maybe where have they gotten it wrong?

Sasha Tanori:

For me personally, I can’t speak on every Mexican-American, but at least for me personally, it’s definitely been a struggle because where I come from, it’s a very like low demographic, we don’t have a whole lot of resources and stuff like that, so getting care is… It’s not the easiest. I’ve had to go to several doctors before I even got diagnosed, and I didn’t even get diagnosed in my hometown, I had to be sent to San Diego because they had no idea what was going on. They were like, We don’t know what’s wrong with you. Go home, they kept giving me misdiagnosis after misdiagnosis, and especially with being a plus-sized Mexican-American, they were just like, Oh, if you lose a couple of pounds, you’ll be fine, and I show up at the hospital with bruises on my body and they’re like it’s because you’re overweight, and I’m like, That doesn’t really make a whole lot of sense. So yeah, it was definitely difficult trying to find a good health care professional who would listen to me, and I had to leave out of my Imperial Valley, out of my demographic to go find the help because…

And even then, they were kind of like, Well, it could be this blood disease, it could be this, it could be that, and they were like, Oh well, is anyone in your family… You’re Mexican, is anyone in your family have this type of illness, do they have diabetes, or this or that. And I was like, No, just help me. Don’t worry about them. Don’t worry about my family. Don’t worry about them. Worry about me. And finally, I think after two months or something of just going to doctor’s appointments, after doctor’s appointments, they finally were able to give me proper diagnosis, but it shouldn’t have to take that many trips to the hospital and seeing this many doctors for them to figure out what was wrong. And a lot of it is because of, like you said, it’s because of the whole inequity of being a person of color, and I’m only half Mexican, but a lot of people see that part of me first, and they think they automatically start being prejudiced or they start judging you based on the way you look, the way you talk and stuff like that, so that way… It’s definitely been a struggle, especially being here in the Imperial Valley, we’re so close to the Mexican border, so they just automatically…They’re like, No, it’s just straight up, no.

Dr. Nicole Rochester:

Wow, I’m really sorry about that, and I appreciate you sharing your story and you’re bringing up some things that we’re definitely going to get further into as we start to talk about bias and culturally competent care. What about you Broderick? And You’re a naturopathic physician, you’re a wellness expert, so you probably fully… Not probably you fully understand the importance of whole-person care, I feel like that’s at the root of your specialty, so maybe you can give us some ideas about how you approach this and why whole person care is so important.

Broderick Rodell:

Yes, thank you. And I do fully understand the various issues and concerns that can arise when you go to a medical doctor and the specialist and not talking to your primary care physician, and so I focus a lot of my attention on the individual and what you can do as an individual to care for yourself, to educate yourself about well-being and help, it doesn’t deny the various social conditions or structural issues there, it’s just that I feel like we have our greatest amount of power, a great capacity to act and taking as much responsibility as we possibly can in our own care through educating ourselves about how our bodies work, how our mind works, how disease manifestation arises, taking advantage of the tools that we have available to us via the internet and educating ourselves so that we can be advocates for ourselves when we have a conversation with the various medical practitioners, but I’ve also really emphasize what can I do to maximize my health, my well-being, what choices can I make in my life to make my life to no life with maximum wellness and well-being and minimal suffering. And I do spend a large amount of time focusing on training the mind, reducing stress, educating yourself around, what can I do to eat well, nutrition, what can I do to exercise? To get my body moving, what are the various things that I can do to care for myself to the best of my abilities and not give too much power over to medical doctors on a medical system that not always…

Now, I wanna say, I’m gonna be careful, I say this can be quite incompetent and that incompetence is associated with, I think what was mentioned earlier, a lack of communication. A lack of communication, the way the system is set up, it’s kind of dysfunctional and the various incentives and not enough time spent with patients, and if you’re not spending enough time with patients and you’re not communicating with other practitioners that are working with these patients, then you’re not gonna have a very good idea of what’s going on in this patient’s life and what could be contributing to their illness. So, therefore, it’s incumbent upon the patient, we as individuals, to try to learn as much as we can and try to get our communities involved to help create educational programs to facilitate that education and that awareness.

Dr. Nicole Rochester:

I completely agree, Broderick the ideas that you mentioned in terms of we as patients and family members and communities educating ourselves about our own health and advocating for ourselves as someone who left medicine to become a professional health advocate, I’m all about advocating for yourself, speaking up, understanding what’s going on with your body? And I know that that can be challenging. And some people feel like it’s unfair, if I’m sick, the last thing I should have to worry about is fiercely advocating for myself in a medical setting, and it is unfair to some degree, but as you stated in this system and the system that we’re currently operating in it is absolutely necessary, and I love that you mentioned mind, body spirit, and as a traditionally trained physician, I will admit that we don’t get that connection, that’s not something that is part of our traditional training, and it’s unfortunate that we kind of just see the body over here, and then the mind over here, and we know that we are all… This is all part of who we are, and that if your environment is not optimal, if your mental health is not optimal, if your spiritual health is not optimal, then that’s going to manifest itself in your physical health.

I wanna start talking about health inequities, and I wanna piggy-back off of something you just said, Broderick, because you talked about kind of eating well and exercising, and sometimes those things, those behaviors are kind of weaponized against patients, particularly if they are in environments where that doesn’t just come easy. So we know that due to structural racism, due to inequities, not everybody has access to fresh fruits and vegetables, healthy foods, not everyone has access to green spaces, nice parks where they can go outside and safety and exercise, and that’s something that we’re being made increasingly aware of is how these social determinants of health impact healthcare. So I wanna move and start to talk about the importance of culturally competent care, or I like to call it cultural humility, I don’t know that we can really ever be competent in someone else’s culture, but I wanna talk about how those come together, this idea of being respectful and sensitive and aware of individuals culture and how that connects to some of the health inequities that we experience, so Aswita, I know this is an area of expertise for you, so I’d love for you to chime in.

Aswita Tan-McGory, MBA, MSPH:

Yeah, I mean, I would love it if every physician or nurse or PA started the conversation, what has been the biggest challenge for you in the last six months? If you ask that question, I mean, well the patient will be like, Oh my God. And not around just medical issues, they all align right? If you don’t have housing, you’re gonna have medical stress, like Broderick said. I’m just calm listening to you, so I’m gonna guess that you have is really positive vibe that’s probably missing for many of us because we aren’t practicing the things that you encourage, and so I would just say that it’s really difficult in the system like I said, we set up, and we mentioned 15 minutes, doctors don’t feel like they have time to ask that question, but you’re doing it in other ways, we implement social determinants of health screening. Well, that’s really that question, right. But you formalize it because it’s not happening, so now it becomes like a screening question, and I will just say that we’re very narrow-minded in our view, I think I have seen a change in the very beginning when we started the work in our center in 2006, a lot of pushback was around thinking about what happens in the patient outside of our walls, it said, Well, I didn’t go to medical school to solve the problem of housing, I didn’t go to medical school to figure out how to get somebody on benefits, and I think health care system realized it doesn’t matter what you do in the hospital, it will be undone when they get home to a situation where they can’t maintain it, they can’t provide that support, they don’t…

They’re stressed out, they have mental health issues, so I think they’re finally getting there, but I think just acknowledging that the person in front of you has different experiences based on, language, education, gender, ability, sexual orientation… I don’t think that’s a bad thing. I think you just need to own it, we’re working on it, so I do it better than others, but I don’t know any healthcare system, honestly, that’s nailed this to the way that we probably should, so… I’m with you Broderick, we don’t do this very well, and most of my job includes dismantling these systems that we built to benefit the people in power and leave everybody else behind, and so that’s been really the focus in our work.

Dr. Nicole Rochester:

Wonderful, thank you so much for sharing that. And for all the work that you’re doing in this area. Sasha, from your perspective, and you mentioned you’re a Mexican-American, you mentioned that there were significant barriers for you in terms of getting a diagnosis, having to leave your community. So, I love for you to share more about that, this idea of cultural humility, cultural sensitivity, and how that played out or maybe didn’t in your experiences with the healthcare system.

Sasha Tanori:

Yeah, I live in the lowest poverty line of California, so there’s not very much out there at all in my area, just to get my diagnosis, like I said, I had to leave out of my community to go get the community… To go get the diagnosis. Sorry. And when I did that, it was… A lot of it had to also do with your… For me personally, it has to do with like generational. My father doesn’t believe in diagnosis, diagnoses, to him, it’s like every time I kept coming to him and complaining about this issue, he was just like, Oh, you’re exaggerating, or it would be like the typical inaudible],  and put some Vix on it and you’re fine type of response, and I kept bugging him and bugging him, and he didn’t believe me, nobody believed me because it’s just such a… Like I said, I live in a… What’s the word I’m thinking of, I’m sorry. I live in a community that they don’t take things like this seriously from Mexicans, if a white girl was to go to the hospital and say, Hey, I’ve got bruises, it’s like, Okay, let’s do testing right away, but I kept… And it is a lot of my generational, I think, trauma from my parents or from my dad mostly, that I didn’t even believe myself, it’s just like…

I kept putting it on the back burner. I kept thinking, No, there’s nothing wrong. No, there’s nothing wrong. No, there’s nothing wrong. And I wish that I would have advocated for myself a lot sooner, I wish that I would have taken my own problems more serious because I didn’t… I didn’t think anything was on either, I just kept ignoring it because that’s just how my mind was trained from my community, from my parents or my dad mostly, and finally, once I was able to… Once I started getting really, really serious, I still didn’t get the help, I need it right away, it was now kept pushing it back on, you need to lose weight, or you’re anemic, or you have this blood disorder, so take this medicine, like nobody really took anything… I was saying serious because I also didn’t take it serious, my community doesn’t take it serious, my dad doesn’t take it serious, and that all just comes back to being Mexican, that’s just how it is when you’re Mexican, you don’t really take any of the serious issues serious, you go to work and you take care of your family. And you put yourself on the back burner.

You put yourself last. And it was really hard. Yeah, but now that I been through everything I’ve been through, I’m seriously, so passionate about making sure that people, especially Mexicans realize, Hey, whatever you’re feeling, whatever you’re going through, whether it’s physical, emotional, mentally, it needs to come first, no matter what.

Dr. Nicole Rochester:

Thank you, Sasha. That is so incredibly important, and even the way you’re sharing what you said towards the end about, You go to work, you take care of your family, this all goes back to cultural competence, all goes back to social determinants of health. It explains why often, racial and ethnic minority groups, those in lower income brackets have poor health, it’s not biology, but when you are needing out of necessity to focus on your next meal, then you’re going to push off going to the doctor, you’re going to neglect your mental health, which brings me back to you, Broderick, because we know that stress and anxiety and depression and all of those things impact your physical health, and as I said earlier, I think traditionally, there’s been this ridiculous disconnection between our minds and our bodies, and we know a lot more now, in fact, there’s a study, there are many studies, but there’s a study specifically looking at Prostate Cancer by Dr. Burnham, a researcher, and what they found in this study is that they looked at prostate cancer cells from African-American patients and white patients, and when they treated these cells with stress hormones, they saw that the black patient’s prostate cells would begin to up-regulate the genes and the proteins that are known to make that cancer more resistant to therapy, and so it starts to look at the role of stress and stress hormones, and we know that there’s increased stress among minority communities, among… Sorry, urban communities, those who are otherwise disenfranchised, so from your perspective, can you just share a little bit about the connection between stress and physical illness and maybe how you approach that in the work that you do?

Broderick Rodell:

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

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

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

Dr. Nicole Rochester:

No, that was perfect, Broderick. That was perfect. I appreciate that because as we wrap up, we want to start to share solutions, how do we begin to change the conversation among healthcare providers, among community-based organizations, policymakers, those that influence the health of individuals and communities, and what you’ve described is what we can do. The power that we have within ourselves to reframe how we look at our circumstances, to reframe how we relate to our experiences to begin to minimize the stress to the degree that we can individually and how all of that really impacts health. I really, really appreciate those comments. Sasha, I’m going to go to you next and then I’m going to finish up with Aswita. If you had some advice that you could give from a patient’s perspective, and maybe you’re talking to a policy maker or healthcare providers, but how can we do better in this area as it relates to Whole Person Care, culturally competent care?

Sasha Tanori:

I would definitely say take your patients more seriously and not just like one-offs, okay, bye. A lot of the times they just do a couple of tests and they’re like, Oh well, we can’t find anything, so let’s just move along and there needs to be more conversation as well.

A lot of the doctors will come in and talk to you for like you said, 15 minutes, and then it’s like, Okay, you know, well, we can’t find anything wrong, so just go… And it’s like, No, let me explain everything, let me explain how I’m mentally feeling, how I’m physically feeling, how stressed out feeling, how emotionally I’m feeling, and there’s just so many different layers to just one, if you come in and say, Oh, well, my hip hurts. Okay, but why I explain more to it, not just okay let’s do an x-ray and you leave. Like there needs to be a lot more conversation going on between the patient and the doctor, there needs to be a lot more understanding where it could also be stress as it relates to work, it could be stress related to family, to love the ones… To kids, to spouses, there’s so many different things on top of that, that’s more than just, you know, Hey, you know like, I just need a prescription and you can go… There’s so much more conversation needs to be have then I really wish that a lot more health care providers would have that conversation with them, I know they don’t always have the time, they’re busy, but at least a little bit more compassion, a little bit more understanding, going about when it comes to patients.

Dr. Nicole Rochester:

I appreciate that, and you’re right. The time is an issue. And I will tell you as a physician and as somebody who has tons of physician friends, it causes internal conflict within the doctors, because I don’t know any doctor that got into this for any reason, primarily, other than to help patients, and so to be placed in these situations where you know that you’re falling short of providing the care that your patients need is actually quite disturbing. So that leads me to you, Aswita. So we’ve talked about all the things that need to happen in an ideal world, but as you described earlier, the system in which health care is provided in our country is dysfunctional, it’s broken, and so as someone with your background, what are some of the solutions? What are some of the things that healthcare systems and organizations can do with all these limitations that we’ve all been talking about today?

Aswita Tan-McGory, MBA, MSPH:

This actually came from my colleague who’s a psychiatrist, and we did a webinar together, and she mentioned this, and I just really loved it as a solution which is talking as a pathway to healing, when we think about… A lot of what I heard today, the big thing is a lack of trust between a patient and a provider or a patient and a health care system, there was so much trauma in our communities that we don’t talk about, and so I would say that like…

One solution is, we as a system need to talk about these challenges more openly or more… I mean I have this sign behind me it says get comfortable being uncomfortable to talk about racism, but I think also within our own communities, we need to talk more about the challenges, the things that we just sort of tolerated that are not okay anymore, and getting mental health care, acknowledging that we are disproportionately attacked when we go out on the streets, all of those things, we need to more openly talk and that is a pathway to healing, which I think this country really could use, and so my solution is simple but difficult, but probably cheaper than any other solution that I would offer to fix the issues. I think we just need to start there, yes, we can do many things, but I think talking about this as a pathway to healing would go a long way.

Dr. Nicole Rochester:

Wow. Talking as a pathway to healing. That is powerful. Well, I want to thank all of you for spending some time with me today, this has been a phenomenal conversation, one that I’m sure we could all continue for hours and hours and hours. But unfortunately, we do have to go.

I want to thank all of you for taking time to be part of this Patient Empowerment Network, Equity Rx webinar. Just to give a recap, we’ve learned about the importance of culturally sensitive Whole Person Care, how culturally competent or culturally sensitive whole person and care is important in reducing health inequities, we talked about how stress impacts lifestyle and cancer and all other chronic diseases, and we’ve also tried to provide you with some actionable pathways and potential solutions to this problem, it is truly these actions that are the key to staying on your Path to Empowerment. I’m Dr. Nicole Rochester, thank you for joining this Patient Empowerment Network program.

Managing Metastatic Breast Cancer Symptoms

Managing Metastatic Breast Cancer Symptoms from Patient Empowerment Network on Vimeo.

Metastatic breast cancer symptom management relies on monitoring a number of factors, including patient and doctor communication. Dr. Jane Lowe Meisel shares advice for optimal management of MBC symptoms and how a supportive oncology team can help.

Jane Lowe Meisel, MD is an Associate Professor of Hematology and Medical Oncology at Winship Cancer Institute at Emory University. Learn more about Dr. Meisel here.

See More From INSIST! Metastatic Breast Cancer

Related Resources:

Which Metastatic Breast Cancer Treatment Is Right for You? Guide

Factors That Guide a Metastatic Breast Cancer Treatment Decision

Understanding Metastatic Breast Cancer Resource Guide


Transcript:

Katherine:

How does symptom management play into the treatment decision?

Dr. Meisel:

I think symptom management is huge, because like I said and I tell this to all my patients at the outset of treatment that most of the time, metastatic breast cancer becomes a chronic diagnosis for a patient. You’re dealing with it, essentially like a chronic illness for the rest of your life. And you’re on some form of treatment for the most part, for the foreseeable future.

And so, making sure quality of life is as good as it can be is critically important. And I think symptom management is a huge part of that and we know that if we can treat and manage symptoms well, people can live better and often live longer because then they can stay on treatment for more extensive periods of time comfortably. And so, I always encourage patients, don’t be a martyr.

Don’t think you have to just bounce in here and tell me everything’s okay if it’s not okay. If you’re having symptoms and side effects from treatment, or from the cancer, I want to know about them so that we can really aggressively manage those symptoms just like we’re aggressively managing the cancer. A lot of times oncologists can do that on their own. We are pretty well versed in managing a lot of symptoms and side effects.

But a lot of times also, there are teams of doctors either who do palliative care or here at Emory, we call it supportive oncology where they are specially trained in things like pain management and managing more common side effects like nausea, constipation, diarrhea, appetite suppression, that can go along with cancer and with treatment.

And then they often will co-manage patients with us as well, just to make sure there’s that really strong focus on maintaining as much of a low symptom burden as possible.

Metastatic Breast Cancer Survivor: Taking Control of Your Quality of Life

Metastatic Breast Cancer Survivor: Taking Control of Your Quality of Life from Patient Empowerment Network on Vimeo.

 Stage IV metastatic breast cancer survivor Lesley shares her story of taking control of her care. After her oncologist chose aggressive treatment that would include 8 rounds of chemo, bi-lateral mastectomy, and radiation, she experienced a severe emotional toll along with extreme nausea, fatigue, bone aches, low blood counts, neutropenia, gasping for breath, and then sepsis. After receiving an emotional response when asking for a second opinion, Lesley was able to get an appointment with another oncologist, took control of her own life, and decided to stop treatment until she achieved her goal of climbing Mt. Whitney. And after summiting the mountain, she chose a new treatment with her oncologist based on side effects and quality of life.

Lesley’s advice,

“We have this one life, let’s live it to the best of our ability. These actions are key to staying on your path to empowerment.”

See More From the Best Care No Matter Where You Live Program


Transcript:

My name is Lesley. I live in the Rogue Valley in Southern Oregon.  In 2013, I was diagnosed with stage IV metastatic breast cancer.

During a monthly self-check, I noticed a lump in my right breast. I went to the primary care doctor who swiftly ordered a mammogram, ultrasound and a biopsy. Shortly after I met with an oncologist and to my surprise, I was immediately provided with a treatment plan of: 8  rounds of chemo, a bi-lateral mastectomy and radiation.

The side effects of initial treatment literally knocked me off my feet. I was plagued by extreme nausea, fatigue, bone aches, and low blood counts which resulted in daily shots for neutropenia. I would wake up in the middle of the night gasping for breath. 

A few weeks  into treatment, I was admitted into the hospital with sepsis. The port-a-cath site was infected and my family and I specifically asked for it to be removed. However, my care team was exclusively focused on saving the port-a-cath because of  future chemo treatments I would need.

The side effects snowballed which really scared my family. I recall my husband yelling and asking why someone wasn’t doing anything to help me. My situation was dire and we felt no one was listening to the emotional toll of the treatment. Rashes as well as swelling, engulfed my body,  and I felt at this point, it was not the cancer that was killing me, it was the treatment plan that the doctors set forth, and my body was rejecting anything and everything put into it, and yet again, the oncologist wanted me to start another round of chemo. 

I knew that things had to change. I soon took matters into my own hands. I told my oncologist that I would not go back onto chemo, however, I pushed for additional treatment options. When I told her I was going to get a second opinion, she was upset with me and asked me to meet with her colleague.  I told her I would not meet with another oncologist from the same practice.  

I was referred to an orthopedic surgeon who was doing my bone biopsy and within one hour of meeting me and hearing my story, he suggested a second opinion doctor. He picked up his cellphone, called her right from the examining room and within a matter of time had already set up an appointment for me.  I later had a successful breast sparing lumpectomy instead of a mastectomy.  My new care team was extremely thorough,  but also respectful of me and the quality of life I desired. 

With a grip on my treatment path, I decided to start taking my life back and I began hiking. My goal for the year was to train for 8 months and summit Mt. Whitney. I met with my oncologist and told her I wanted to stop treatment until after my big climb. We did stop treatment and shortly after, I summited Mt. Whitney. 

Several weeks later, I met with my oncologist and  started another regimen, of which I chose as well with guidance from my oncologist. I progressed in 2018, again I also decided which treatment option I wanted to do, based on my quality of life, and the side effects I was willing to live with. 

 My advice to other metastatic breast cancer patients:

  • Find your voice, you have one
  • Take full control of your care at the outset
  • Feel empowered to question your care team at any point on your journey
  • Decide on the quality of life YOU want to have
  • Don’t be afraid to get a second opinion

Since my diagnosis, I’ve made it my mission to  advocate for my metastatic breast cancer community.  Patient advocacy is my full time job. I share my story to inspire and empower others to take control of one’s care.  

My best advice is to find and build a care team that sees you not as a number in a queue of patients,  but as the person whose life is represented in that medical file.  We have this one life, let’s live it to the best of our ability.

These actions are key to staying on your path to empowerment.

The Power of Journaling During Cancer Treatment

There are two ways to fight cancer, both of which are equally as important. The first is physical and the second mental. Journaling might not be able to help with the physical symptoms, but easing the mind can truly help in such situations.

By providing a safe place to store your thoughts and experiences, you will be able to find a great source of power. If you have never thought about journaling before, this might be the perfect time for you to give it a try. Here are some important reasons why this might be a very great decision.

1. Keeping track of all important moments

Some people believe that battling cancer is only filled with negative moments and experiences. While that is true to a big extent, there can be plenty of memorable moments that you might want to keep track of. The beginning of your treatments is a moment that you can write about and think about when this situation is over.

Other important moments might include family gatherings, important presents you might receive, very bad and very good days that stand out in your treatment course. Just because a day way difficult doesn’t mean it should be considered bad. At the end of this difficult journey, you will be able to look back at everything you wrote and remember the good and bad times.

2. Helping ease certain symptoms

Another great reason why journaling can truly help cancer patients during their treatments is because of symptom management. Research has actually shown that journaling can help with combating symptoms and dealing with the physical size of things.

Writing about how you feel and what you are going through can help you sleep better and feel more energetic. Getting plenty of rest will allow you to feel less nauseous, be in a better mood and battle everything with a stronger will. The more you face your symptoms, the stronger you will feel through your treatment.

3. Fighting against the stress

The stress that can be caused by such a difficult diagnosis is great and can truly affect your mood and outlook on life. Being under stress can make you feel tired, mess up your sleeping schedule and make you feel more negative about everything. This is not ideal for any situation you are in in your life and there are ways to overcome it.

Journaling can provide you with a safe space to write everything you have in your mind. During your treatments, you will possibly want to appear strong in front of your family and you might not want to share everything you feel. You can write all your thoughts in your journal and let everything out. This way you will be able to handle everything you face and feel a lot less stressed.

4. Reminding yourself of things you love

When dealing with any hardship in life, it is important to keep thinking of things that bring you joy. Journaling has helped me create a notebook full of memories, which I can go through any time I need some positivity in my life. You don’t only have to put words into it but anything and everything that makes you think of memories and people you hold dear.

In your journal you can keep stickers, receipts, drawings and cards from loved ones. Then you can write how receiving these things made you felt. When the days get difficult and you are struggling, open your journal again. Read through everything nice you have collected and it can help you remember all the reasons why this difficult process is worth it.

5. Seeing all the progress you have made

Last but not least, another important reason why journaling is so helpful during cancer treatment is that it can help keep track of your progress. There are going to be many days that will be hard and many that will be good and filled with hope. In order to be able to go through both, it is important that you keep track of everything new that happens in your journey.

The good days will help you remember that things will get better. The difficult days will allow you to live in the moment and work on staying positive. Journaling this experience can also help your family better understand what goes on in your head and how they can help. After you have successfully put this difficult period of your life behind, you can even share your story with other patients through your journal.

Battling cancer every way possible

Journaling is a creative and fun activity that can help you deal with certain symptoms and negative thoughts during your treatment. Even if you have little experience with writing, journaling gives you the chance to get creative. You don’t need any special skills in order to journal. You just need a notebook, some fun colors and a few thoughts in your head.

Through writing about your experiences, you will be able to express how you feel and let everything run its course. This treatment course might be tough, but writing everything down will help you see just how much progress you are making. This can truly help you feel stronger mentally and physically and overcome this situation like a true warrior!

What Do Breast Cancer Patients Need to Know About COVID?

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

Due to COVID-19, many patients with breast cancer have faced new challenges when it comes to receiving care. Dr. Lisa Flaum addresses precautions when receiving care, and the role of telemedicine in virtual care. 

Dr. Lisa Flaum is a Medical Oncologist at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University. Learn more here.

See More From The Pro-Active Breast Cancer Patient Toolkit

Related Programs:

How Can a Breast Cancer Psychologist Help You?

Should You See a Breast Cancer Specialist?

Are You Prepared for Your Breast Cancer Appointment? Expert Tips.


Transcript:

Dr. Flaum:                  

Right, so COVID has introduced challenges for all of us, for cancer patients specifically. However, we have not typically altered our recommendations for appropriately treating patients based on COVID. So, any of the treatments that would be appropriate are still appropriate, and for most patients, I’m recommending that they follow the guidelines that they are likely following otherwise. I think that a lot of the precautions that are put in place from a COVID standpoint, which are people are washing their hands, and sanitizing, and wearing masks, and keeping distance, and not socializing and big crowds, all of those things are already helping our patients and certainly prevent COVID, but also prevent all the normal stuff that people are typically exposed to when they’re going through a cancer diagnosis.

What I tell people is that they’re already probably going above and beyond what we would have recommended in a normal setting of metastatic cancer. Although they’re likely at a little higher risk, depending on what they’re receiving, than the general population, for the most part, patients have done well and we have not seen an excess number of COVID cases in our patient population. Again, it’s likely because people are doing the right things anyway, COVID or not COVID, and certainly regardless of their cancer diagnosis.

I guess the one change or the changes that we’ve made is implementing a little more tele-medicine versus in person visits when it’s appropriate. So, there are things that we can accomplish over the phone in terms of managing side effects and asking how patients are doing.

Obviously we can’t do an exam, we can’t do imaging, but a number of things can take place over the phone and we’ve made accommodations in terms of some of that to allow for patients to stay out of the hospital setting as much as possible.

In some situations, it has impacted decision making if there’s a choice between one treatment and another, and one is more aggressive or more suppressing of the immune system, if you’re going to weigh the normal pros and cons and we’re always going to throw COVID into the mix. Well, if you’ve got this particular treatment, your immune system shouldn’t be as suppressed, you don’t have to come in as often, you don’t require an IV. So, the variables definitely come into play, but certainly COVID doesn’t prohibit us from choosing any given option, but it affects some of the discussion in most cases.

Are You Prepared for Your Breast Cancer Appointment? Expert Tips.

Are You Prepared for Your Breast Cancer Appointment? Expert Tips. from Patient Empowerment Network on Vimeo.

Could you be better prepared for your breast cancer appointment? Breast cancer specialist, Dr. Lisa Flaum reviews helpful tools that can help ensure patients get the most out of their doctor visit.

Dr. Lisa Flaum is a Medical Oncologist at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University. Learn more here.

See More From The Pro-Active Breast Cancer Patient Toolkit

Related Programs:

Breast Cancer Office Visit Planner

Should You See a Breast Cancer Specialist?

What Do Breast Cancer Patients Need to Know About COVID?


Transcript:

Dr. Flaum:                  

I think they should think ahead of time about what issues are most important to them, have a list of questions, whatever they might be. And hopefully, our job, if we’re doing it well, is to answer the questions that the patients don’t even necessarily know to ask. So, I think that the important thing is not so much a specific question, but getting your questions answered, sort of walking out of that initial visit at least with a preliminary understanding of what your diagnosis is, what the implications are, what the decision making is regarding treatment. And understanding why your doctor is choosing the treatment that they’re choosing or recommending and what your alternatives are.

And I think knowing what the balance is. So, not just, okay, you’re choosing this because you think it’s most effective, but then how do you balance it with quality of life, with side effects, and with all the other variables that go into that choice. Patients have different perspectives in terms of how much information they want, in terms of the bigger picture. Do people want information about prognosis? Is that even answerable at an initial visit? So, a lot of it differs in terms of what the patient’s desires are and where you are in the workup to know how best to answer those as well.

The other thing I would say about preparation for a visit is, it’s important to have someone with you, either in-person or remotely given the circumstances. So, an initial visit with a medical oncologist can be overwhelming and having a second set of ears and eyes and someone to take notes so you can listen, is really helpful. Because often patients walk out of that visit forgetting everything that was said, or at least not comprehending all of it immediately. So, always having another set of ears or eyes listening is really important.

Should You See a Breast Cancer Specialist?

Should You See a Breast Cancer Specialist? from Patient Empowerment Network on Vimeo.

As breast cancer treatment options continue to expand, it’s important to partner with a physician who is up to date on the latest developments. Dr. Lisa Flaum explains why patients should consider seeking a specialist and obtaining a second opinion.

Dr. Lisa Flaum is a Medical Oncologist at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University. Learn more here.

See More From The Pro-Active Breast Cancer Patient Toolkit

Related Programs:

How Can a Breast Cancer Psychologist Help You?

Are You Prepared for Your Breast Cancer Appointment? Expert Tips.

What Do Breast Cancer Patients Need to Know About COVID?


Transcript:

Dr. Flaum:                  

So, in terms of who you should see as a medical oncologist and whether you need a breast cancer-specific specialist. I do think it’s a good idea for the majority of patients do at least have an opinion with someone who specializes in breast cancer. Increasingly, cancer diagnoses of all kinds, and breast cancer specifically is becoming more complex. There’s a lot of variables that guide treatment, and it’s important to have someone on board who’s up to date on the latest knowledge treatments, clinical trials if indicated.

Sometimes it makes sense to see a breast cancer specialist, but potentially get your care with whoever is more easily accessible in terms of an oncologist closer to home, if that makes sense. But to at least start with an opinion by someone, from someone who specializes in breast cancer.

I think the patients should seek a second opinion when they think it’s appropriate. And it’s often appropriate; even if it’s just for peace of mind to know that what you’re hearing from your initial visit is, if there’s agreement amongst specialists. Most doctors, I can speak for myself personally, do not get their feelings hurt when someone asks for a second opinion and often I encourage it. I think it’s helpful from a patient peace of mind standpoint, and it’s even appropriate to ask your doctor if I’m going to seek a second opinion, is there somewhere you would recommend that I go. I think it’s appropriate if you have a doctor in a community practice and they may have a referral system of who they would refer to.

And even then from an academic standpoint, if someone asks me where they could or would go for an opinion, I would recommend colleagues at other institutions who I think would be appropriate. So, I think you have to advocate for yourself. You have to do what’s best for you. And number one, I don’t think feelings will get hurt. And number two, I don’t think that’s the reason to not get the care that is appropriate.