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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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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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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.

See More From Rx for Community Wellness

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.

See More From Rx for Community Wellness

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, a naturopathic doctor, and a 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.

What You Need to Know Before Choosing a Cancer Treatment

What You Need to Know Before Choosing a Cancer Treatment from Patient Empowerment Network on Vimeo.

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What steps could help you and your doctor decide on the best treatment path for your specific cancer? This animated video explains how identification of unique features of a specific cancer through biomarker testing could impact prognosis, treatment decisions and enable patients to get the best, most personalized cancer care.


If you are viewing this from outside of the US, please be aware that availability of personalized care and therapy may differ in each country. Please consult with your local healthcare provider for more information.


Related Programs:

 

PEN-Powered Activity Guides

Digitally Empowered™


TRANSCRIPT:

Dr. Jones:

Hi! I’m Dr. Jones and I’m an oncologist and researcher. I specialize in the care and treatment of patients with cancer. 

Today we’re going to talk about the steps to accessing personalized care and the best therapy for YOUR specific cancer. And that begins with something called biomarker testing.

Before we start, I want to remind you that this video is intended to help educate cancer patients and their loved ones and shouldn’t be a replacement for advice from your doctor.

Let’s start with the basics–just like no two fingerprints are exactly alike, no two patients’ cancers are exactly the same. For instance, let’s meet Louis and another patient of mine, Ben. They both have the same type of cancer and were diagnosed around the same time–but when looked at up close, their cancers look very different.  And, therefore, should be treated differently.

We can look more closely at the cancer type using biomarker testing, which checks for specific gene mutations, proteins, chromosomal abnormalities and/or other molecular changes that are unique to an individual’s disease.

Sometimes called molecular testing or genomic testing, biomarker testing can be administered in a number of ways, such as via a blood test or biopsy. The way testing is administered will depend on YOUR specific situation.

The results could help your healthcare team understand how your cancer may behave and to help plan treatment. And, it may indicate whether targeted therapy might be right for you. When deciding whether biomarker testing is necessary, your doctor will also take into consideration the stage of your cancer at diagnosis.

Louis:

Right! My biomarker testing results showed that I had a specific gene mutation and that my cancer may respond well to targeted therapy.

Dr. Jones, Can you explain how targeted therapy is different than chemo?

Dr. Jones:

Great question! Over the past several years, research has advanced quickly in developing targeted therapies, which has led to more effective options and better outcomes for patients.

Chemotherapy is still an important tool for cancer treatment, and it works by affecting a cancer cell’s ability to divide and grow. And, since cancer cells typically grow faster than normal cells, chemotherapy is more likely to kill cancer cells.

Targeted therapy, on the other hand, works by blocking specific mutations and preventing cancer cells from growing and dividing.

These newer therapies are currently being used to treat many blood cancers as well as solid tumor cancers.  As you consider treatments, it’s important to have all of the information about your diagnosis, including biomarker testing results, so that you can discuss your treatment options and goals WITH your healthcare team.

Louis:

Exactly–Dr. Jones made me feel that I had a voice in my treatment decision. We discussed things like potential side effects, what the course of treatment looks like and how it may affect my lifestyle.

When meeting with your healthcare team, insist that all of your questions are answered. Remember, this is YOUR life and it’s important that you feel comfortable and included when making care decisions. 

Dr. Jones:

And, if you don’t feel your voice is being heard, it may be time to consider a second—or third—opinion from a doctor who specializes in the type of cancer you have. 

So how can you use this information to access personalized treatment?

First, remember, no two cancers are the same. What might be right for someone else’s cancer may not work for you.

Next! Be sure to ask if biomarker testing is appropriate for your diagnosis. Then, discuss all test results with your provider before making a treatment decision. And ask whether testing will need to be repeated over time to identify additional biomarkers.

Your treatment choice should be a shared decision with your healthcare team. Discuss what your options and treatment goals are with your doctor.

And, last, but not least, it’s important to inquire about whether a targeted therapy, or a clinical trial, might be appropriate for you. Clinical trials may provide access to promising new treatments.

Louis:

All great points, Dr. Jones! We hope you can put this information to work for you. Visit powerfulpatients.org to learn more tips for advocating for yourself.

Dr. Jones:

Thanks for joining us today. 


This program is supported by Blueprint Medicines, and through generous donations from people like you.

Patient Profile: Vanessa Steil

“PEN builds community and empowers you to be your own advocate.” – Vanessa Steil, thyroid cancer survivor and patient advocate.

When Vanessa Steil recounts how she was first diagnosed with thyroid cancer, you can tell it is a story she has told many times. The dates, the terminology, and which doctor told her what and when are all precisely chronicled in her memory. Yet it took her reflecting on her story as a survivor to process just how crucial all of the details were. Now, she’s passionate and committed to helping others, and she has dedicated much of her time—and career— over the past eight years to doing just that.

It all started in March 2013 during a routine visit to the gynecologist. The doctor, who performed a neck check as part of the exam, felt a lump on the right side of Vanessa’s thyroid. “I was taken off guard by the whole thing,” she says. She tried to convince herself that the lump was nothing serious, but she followed the doctor’s advice for further testing, and a month later was diagnosed with papillary thyroid carcinoma: thyroid cancer. She was 26 years old. “My whole world changed with just three words. In an instant, I went from feeling like a normal person to having to absorb all this new medical jargon,” she says.

It was a difficult time for Vanessa. She was young, she didn’t know anyone else her age who had cancer, and she didn’t know anyone with thyroid cancer. While she had support from friends and family, at the end of the day she felt very much alone. As the weeks passed by and her mind raced on, she began to second-guess her diagnosis, question whether she should have surgery, and considered having another biopsy. “I had to work through the emotional aspects of my diagnosis, including coming to grips with the fact that I had thyroid cancer and the fear I felt about the outcome,” she explains. “You have to be in a positive place when you are going to have surgery.” Fortunately, her cancer was not overly aggressive, and she was able to delay the surgery until she felt more prepared.

By June 2013, she was ready for surgery and had a total thyroidectomy that included the removal of six lymph nodes, one of which was positive for cancer. The surgery was successful, and so far, she hasn’t required any radiation therapy, a common follow-up treatment post thyroid cancer. While in 2017 her antithyroglobulin levels, a marker that can be used to monitor a possible cancer recurrence in those with an autoimmune condition, went up and remained that way, she continues to be monitored. Her bloodwork and scans are done twice a year, and once a year she has a neck ultrasound; each time she experiences what survivors call “scanxiety” until she gets an all clear from the results.

When Vanessa was diagnosed, her endocrinologist gave her a key piece of advice that she didn’t completely understand at the time, but it stuck with her, and the meaning soon became clear. He told her, “Don’t turn this diagnosis into a research project.” As someone who is naturally curious and was eager to learn all she could about her disease, as soon as she was diagnosed, Vanessa took to “Dr. Google” looking for information and answers, but she wasn’t always finding helpful information. “While online, I was landing on horror stories,” she says, adding that while it is important to be knowledgeable about your disease, it is imperative to get accurate information and to be careful about choosing which sites or social media outlets to use as resources. “The Internet can be a scary rabbit hole, and it can cause unnecessary worry,” she says. “Finding a reputable site, like Patient Empowerment Network (PEN), that’s done a lot of the legwork for you and has comprehensive resources available is invaluable,” she says. Vanessa especially appreciates that PEN helps prepare patients for doctor visits by providing a list of questions to ask and offers relevant insight to caregivers, and survivors. “I was impressed with the PEN content, because it helps the patient from diagnosis to recovery,” she says. She also recommends sites that offer a sense of community where you can interact with other patients who have had similar experiences. “PEN builds community and empowers you to be your own advocate,” she says. “You have to know your body and speak up for yourself. That’s where the community aspect comes in. As a survivor, I try to provide that sense of community for others.”

After her surgery, Vanessa found a creative outlet that allows her to provide support for others and helped her through her own recovery. She created a lifestyle and wellness blog, Living in Steil (pronounced style), where she shares her personal journey and favorite resources as well as beauty, food, fitness, and health and wellness information. She says she was inspired to start the blog in February 2014, while recovering from surgery and trying to put the pieces of her life back together. “You don’t often process the emotional aspects of cancer until later,” she says. “It’s been cathartic to blog about my experience and have the site resonate with so many other patients and survivors.”

Her work as a blogger has led to many more opportunities to share her story including being asked to participate in a book, Tough: Women who Survived Cancer by Marquina Iliev-Piselli and collaborations with other advocacy groups in the healthcare space. In addition to her blog, Vanessa is a health coach and Board Certified Patient Advocate who also works for a pancreatic cancer foundation where she manages public relations and social media. She credits her diagnosis with helping her find her career niche and a meaningful role that allows her to make a difference in the lives of patients every day.

As far as her cancer is concerned, technically she is in remission, but says she is vigilant about staying on top of her health. “I have never taken my survivor status for granted,” she says. She continues to be her own advocate and has found that sometimes means she needs to find new doctors. If they are not listening to her or are not open to communication, she knows it’s time to move on. “It’s important to find a doctor who takes your concerns to heart,” she says.

Through Vanessa’s own experience with cancer, she’s learned a lot about advocating for herself and others. Vanessa has experienced firsthand what works and what doesn’t, and she is grateful to be able to share her knowledge. “If I can bridge the gap for people with a cancer diagnosis and make it easier for them to get the resources they need, then that is rewarding for me,” she says. “I had a difficult diagnosis, but I learned from my challenges and now I can share that knowledge with others. I can’t think of a better way to pay it forward than that.”

Read more about Vanessa and follow along with her journey at www.livinginsteil.com or on social media at @livinginsteil.


Read more patient stories here.

Thyroid Awareness: January and Beyond

This post was originally published by Sharon O’Day on MedicareGuide on January 21, 2021 here.


Most people with thyroid disease don’t even know they have it. More than one in eight Americans will develop a thyroid condition during their lifetime, but up to 60% are unaware of it.1

That’s because the symptoms — fatigue, depression, sleep disturbances and weight loss or gain, among others — could just as well be signs of other medical conditions and life stages.

That’s what makes Thyroid Awareness Month, which falls in January each year, so important. If both people and doctors think of thyroid problems more often, cases can be diagnosed earlier and the disease can be managed sooner.

What Is Thyroid Disease?

Thyroid disease is a medical condition that keeps your thyroid from producing the right amount of the hormones needed by your body’s systems to function. This small, butterfly-shaped gland at the lower front of your neck affects how well every cell, tissue and organ in your body works.

a close up of a christmas tree

Photo by Torten Dettlaff

The cause of thyroid disease is unknown, but it can often be managed with medical attention. But first it has to be diagnosed through blood tests, imaging (scans or ultrasounds) and physical exams.

With hypothyroidism, the gland doesn’t make enough thyroid hormone and you can feel tired, gain weight and feel the cold more intensely. 
On the flip side, when the gland produces too much hormone you can develop hyperthyroidism, leaving you feeling tired and nervous. You may also lose weight and find your heartbeat is rapid.

Graves’ disease is a specific form of hyperthyroidism, an autoimmune genetic disorder that affects about 1% of the U.S. population.2

Women are five to eight times more likely than men to be among the estimated 20 million Americans with a thyroid condition.3

Different types of benign (non-cancerous) growths and malignant (cancerous) tumors can develop in the thyroid gland. Thyroid nodules, for example, are common and usually benign; these lumps can be solid or filled with fluid. You should still seek immediate medical attention because, while most growths don’t turn out to be cancer, some do.4

What About Thyroid Cancer?

When the cells in the thyroid grow out of control, the disease can become thyroid cancer. In 2017, the latest year for Centers for Disease Control statistics, more than 33,000 women and nearly 12,000 men were diagnosed with thyroid cancer.5

Thyroid cancer has more specific symptoms than other forms of thyroid disease: a lump or swelling on the side of the neck, trouble or pain breathing or swallowing and a hoarse voice.6

What Are the Trends in Thyroid Cancer?

The yearly number of new thyroid cancer cases in the U.S. has grown steadily, from 18,000 in 1999 to a peak of 49,500 in 2015, with a small drop-off after that.7

In 2017, for every 100,000 Americans, 14 new thyroid cancer cases were reported and one person died.8

Scientists aren’t sure what causes thyroid cancer. But the risk factors include:9

Gender and Race

The chances of a thyroid cancer diagnosis are nearly three times higher for women than for men.10

But if you’re Black or American Indian/Alaska Native, you have about a 45% lower chance of being diagnosed with thyroid cancer than if you’re white, Asian/Pacific Islander or Hispanic.11

Survival Studies

Three factors influence the five-year survival rate for thyroid cancer patients: gender, age and race.12 

  • Survival rates are higher for women than for men: 98% versus 93.6%.
  • Survival drops as people age, from 99.4% for those under 45 to 86.1% for those over 75.
  • Survival is slightly lower for Blacks compared with whites and people of other races/ethnicities.

For women, thyroid cancer has the highest five-year survival rate of all cancers. For men, only prostate cancer and testicular cancer have higher survival rates.

Regional Glances

Across all ages, genders, races and ethnicities, the rate of new cancers is higher in the extended New England area and some western and midwest states, including Utah, Wyoming, North Dakota and Kansas.13

How You Can Raise Awareness About Thyroid Disease

Thyroid Awareness Month highlights the crucial role the thyroid plays in the ability of major organs to function. It aims for more people to get tested if they have unexplained symptoms like those mentioned above. And it promotes early treatment.

As with any type of cancer, greater awareness leads to earlier detection, which can save lives. A cancer stage is defined by whether cancer cells have been contained within the thyroid or traveled to other parts of the body, which influences your treatment options as well as the odds of recovery.14 

If you want to participate in Thyroid Awareness Month, here are six simple ways to get involved:

  • Do a thyroid neck check. You’ll need a hand-held mirror and a glass of water. Tip your head back, take a sip of water and swallow. Using the mirror as you swallow, watch the lower front of your neck for any bulges or protrusions. If you see any, talk to your physician right away.
  • Encourage friends and family to get tested. Although symptoms are pretty general, if a loved one complains of feeling cold, not sleeping well or having trouble swallowing, ask them to do the at-home neck check and suggest they see their doctor.
  • If you can, donate. Even if thyroid disease hasn’t affected you directly, consider donating to:
  • Share information online and off. ThyCa offers free materials to increase awareness of thyroid issues. Order some today and help spread the word.
  • Share Your Thyroid Story.  Paloma Health developed a video campaign that invites people to share their thyroid story to help raise awareness for thyroid disease symptoms, risk factors and treatment options. According to the organization, when someone submits a story, they’re automatically entered for a chance to win a thyroid support bundle giveaway.
  • Use hashtags to raise awareness on social media. By using these designated hashtags from the ATA and ThyCA, your efforts to raise awareness will be multiplied:
    • #thyroid #hypothyroidism #thyroidhealing #thyroidproblems #thyroiddisease #thyroidhealth #autoimmunedisease #hormones #hyperthyroidism #hypothyroidism #hashimotos #cancer #thyroidcancer #autoimmune #thyroidweightloss #covid #hashimotosdisease #thyroidwarrior #thyroidawareness #thyroidectomy #hypothyroid

Next Steps

January is Thyroid Awareness Month and September is Thyroid Cancer Awareness Month. But your efforts to raise awareness are needed year-round because most thyroid disease cases go undetected in their early stages.

Check yourself regularly with the swallow test. It only takes a minute or two. And stay vigilant when friends and family mention unexplained symptoms. If the signs fall in general categories such as fatigue, depression, sleep disturbances and weight loss or gain, encourage them to visit their doctor to have their thyroid checked.

Your efforts to promote Thyroid Awareness Month can help reduce the number of Americans who have a thyroid problem but don’t know and don’t get checked before a very treatable issue becomes much more serious.


  1. American Thyroid Association. “General Information/Press Room.” thyroid.org (accessed December 18, 2020).
  2. General Information/Press Room.”
  3. General Information/Press Room.”
  4. American Cancer Society. “What Is Thyroid Cancer?” cancer.org (accessed December 18, 2020).
  5. Centers for Disease Control and Prevention. “United States Cancer Statistics: Data Visualizations.” gis.cdc.gov (accessed December 18, 2020).
  6. Centers for Disease Control and Prevention. “Thyroid Cancer.” cdc.gov (accessed December 18, 2020).
  7. United States Cancer Statistics: Data Visualizations.”
  8. United States Cancer Statistics: Data Visualizations.”
  9. National Cancer Institute. “Thyroid Cancer Treatment (Adult) (PDQ®)–Patient Version.” cancer.gov (accessed December 18, 2020).
  10. United States Cancer Statistics: Data Visualizations.”
  11. United States Cancer Statistics: Data Visualizations.”
  12. United States Cancer Statistics: Data Visualizations.”
  13. United States Cancer Statistics: Data Visualizations.”
  14. Trends in Thyroid Cancer Incidence and Mortality in the United States, 1974-2013.”

“Wait, There’s a Good Cancer?”

When the Luck of the Draw Leads to the Short End of the Stick

Cancer is one of the most feared diseases. Everyone is affected by it in some way, but no one really imagines getting it themselves. So imagine hearing that you got the “good” cancer, a commonly used term for thyroid cancer. That can’t be right. Cancer is cancer…isn’t it? But who are we, as patients, to question what our doctors tell us? They’re the ones who went to medical school and have years of training. But maybe thyroid cancer isn’t that bad?

That’s what I thought when I was told that my cancer was the “good” one by more than one doctor. In fact, one doctor told me that thyroid cancer was “the cancer to have if you had to get it.” I didn’t have any symptoms at the time, so I took these words, spoken to me by medical professionals, as truth. Unfortunately, I learned that there was no such thing as a “good” cancer once I began treatment.

While thyroid cancer is slow-growing, does have a very good prognosis, and can be easily treatable, no cancer is the same. For example, I had the papillary variant of thyroid cancer, a common diagnosis amongst most thyroid cancer patients. I underwent surgery to remove half of the thyroid with the tumor, but my treatment didn’t end there. It was discovered in the pathology report that I had metastasis that was not shown on the original ultrasound that showed the tumor in my thyroid. As a result, I had to undergo a second surgery for the removal of the remaining half of my thyroid. Additionally, I was told by my surgeon that, because of the metastasis, he didn’t know if cancer could be elsewhere in my body, and I would need to undergo oral radiation therapy. “Wasn’t this the ‘good’ cancer?” I thought over and over.

Furthermore, what doctors don’t explain, at least very well in my case, is what not having a thyroid is going to be like. I wasn’t aware of what a thyroid was nor its functions when I was told that it was harboring a tumor. Nor did I know until I had to be placed on a supplement, or rather a replacement, for my lack of thyroid. I learned quickly that the thyroid essentially interacts with every other system in the body through controlling metabolism, heart rate, temperature, energy level, etc. My body slowly adjusted to this new medication with a prescribed dose that was initially “simply a guess” based on my age, weight, and overall health. From there, my healthcare team and I adjust the dose based on how my body responds. If I think about this, especially as a woman, my body goes through many changes as I age, and I’m sure many of them are affected by a properly-functioning thyroid, which I no longer have. I’m not saying that I’m not eternally grateful for their actually being a supplement I can take to, quite literally, live, on a daily basis. What I am saying is that the stigma and the choice of words and phrases surrounding this cancer, perpetuated by medical professionals needs to stop. At the very least, they need to recognize thyroid cancer as a cancer, a diagnosis that inevitably impacts the life, good or bad, of every patient who has this terrible disease well into survivorship.

If you’re a thyroid cancer patient, whether newly-diagnosed, in treatment, no evidence of disease (NED), or anywhere in between, educate and advocate for yourselves. Find doctors who take the time to understand your wants and needs as an individual human being. Never think that your cancer is “less than,” because it matters.

Extended Quick Guide to Medicare

This guide was originally published by our partner, Triage Cancer, here.

2021-Health-Insurance-Medicare-Quick-Guide

Quick Guide to Health Insurance Options

This guide was originally published by our partner, Triage Cancer, here.

2021-Health-Insurance-Options-Quick-Guide

Barriers to Clinical Trial Participation

 

What are some of the barriers to clinical trial participation? What is a virtual clinical trial? Should my doctor be speaking to me about my clinical trial options? Dana Dornsife, founder of Lazarex Cancer Foundation, speaks to the key barriers in trials and how COVID-19 has really opened the door for a lot of opportunity to engage with patients around clinical trials.

Barriers to Clinical Trial Participation

Barriers to Clinical Trial Participation from Patient Empowerment Network on Vimeo.

What is a Virtual Clinical Trial?

What is a Virtual Clinical Trial? from Patient Empowerment Network on Vimeo.

COVID and Clinical Trials

COVID and Clinical Trials: Has There Been a Shift? from Patient Empowerment Network on Vimeo.