Jasmine Souers: Advocating for Breast Cancer Care for People of Color

In this episode, I’m joined by the effervescent Jasmine Souers. She is the CEO and founder of The Missing Pink Breast Cancer Alliance (https://themissingpink.org ). The Missing Pink’s mission is to connect change agents in the pursuit of health equity for communities of color affected by breast cancer.

Jasmine has first-hand experience with breast cancer. She received her diagnosis at the young age of 26, and from that day forward has made it her mission to advocate for ALL people affected by breast cancer, especially people of color. As we discuss in our interview, she believes change happens on the ground when we combine “innovation with collaboration.” There is plenty of research to show what needs to happen, so let's work together to make change happen today. Taking from her personal experience and many years advocating for others, Jasmine shares how to develop trust with your patients, how to create a healing plan focused on what matters to patients, and how to make integrative oncology resources available to everyone. 

Watch the full interview here:  https://vimeo.com/818447460?share=copy 

Below are links to topics discussed in this episode.

The Missing Pink Breast Cancer Alliance: https://themissingpink.org 

Check out the book: "Healing and Cancer: A Guide to Whole Person Care"
Visit https://www.healingandcancerbook.com/ for more information.

Connect:
Twitter: @DrWayneJonas
Facebook: Dr. Wayne Jonas
Instagram: @drwaynejonas
LinkedIn: Dr. Wayne Jonas
LinkedIn: Alyssa McManamon

Visit Healing Works Foundation www.healingworksfoundation.org for more information.

Dr. Wayne Jonas is a board-certified physician and Dr. Alyssa McManamon is a triple-board certified hematologist/oncologist. The opinions expressed on this show are those of the hosts and guests and do not necessarily represent the views and opinions of their places of employment, the Department of Veterans Affairs, or the United States government. The opinions expressed on this podcast are meant for entertainment and education and should not be used to diagnose or treat any medical condition nor should they be used as a substitute for medical advice from a qualified, board-certified practicing clinician. Dr. Wayne Jonas and Dr. Alyssa McManamon have no relevant financial disclosures.

Transcript

Please note that this transcript is produced electronically and may not be an accurate representation of what was said. It may not be reproduced, edited, altered or modified in any way without prior written permission. Any use of quotes or excerpts from this interview requires explicit permission from Healing Works Foundation. Please contact us at healing@healingworksfoundation.org if you would like to use any part of this transcript for quotes or other purposes.

“How Healing Works with Dr. Wayne Jonas”

Interview with Jasmine Souers—Advocating for Breast Cancer Care for People of Color

Dr. Wayne Jonas (00:00):

Yeah, there we go. All right, good. Now let's get going. Well, hello, I'm Dr. Wayne Jonas in my session on How Healing Works, and it is a tremendous pleasure to have with me today Jasmine Souers, who I got to know. And she was engaged in helping us with a integrative oncology leadership group and a patient advocacy and empowerment efforts that was part of that, which I have to say as I was telling her before we started this video, that it was one of the most helpful efforts for these oncologists that were trying to do whole person cancer care. So I want to thank her for that right off the bat So our listeners know sort of how I got to know Ms. Souers in these areas.
(00:59)
Now, she has a vast experience in the area of managing cancer, especially breast cancer, especially for a population that often gets neglected, and that is women of color. She herself, unfortunately, got cancer when she was 26, but fortunately, as a survivor of that, in 2016 with the support of her family, close friends, Jasmine underwent a bilateral mastectomy reconstruction. She had 25 rounds of proton therapy. I can imagine all the travel involved in that. Completed five years of hormone therapy, and is now thriving and doing well.
(01:42)
Jasmine is a passionate advocate for young women, black women, and people of color affected by breast cancer. And she believes in the power of collaboration for innovation to break barriers in the cancer community. And we need those barriers broken.
(01:55)
So not only is she survivor, she's a thriver and she's turning that experience into things that can help others. One of the ways she's doing it is as CEO and founder of the Missing Pink Breast Cancer Alliance, and I'll ask her that. It's a very intriguing name, connecting change agents in the pursuit of health equity for communities of color affected by breast cancer.
(02:18)
She's a board member of GRASP, and I'll ask her what that is, and she lends her experiences in multiple places. In addition to the network we ran, she's part of organizations such as Young Survivors Coalition, Metastatic Breast Cancer Alliance, Living Beyond Breast Cancer, University of Florida Health. She lives in Jacksonville, Florida, and the Mayo Clinic Breast Cancer SPORE. The co-founder of For the Breast Of Us, the first online community for all women of color affected by breast cancer.
(02:50)
Thank you, Jasmine, for being part of this podcast and for all the efforts that you do to try to make sure that cancer care is optimal for everyone.

Jasmine Souers (03:02):

Thank you so much for having me, Dr. Jonas. I'm excited to be here.

Dr. Wayne Jonas (03:07):

Well, I like my listeners first of all to get to know you a little bit first, if that's okay. Can you tell us a little bit about what is it in your life that's sort of led you down this path?
(03:20)
Now we know you got breast cancer, but most people don't turn that into the kind of advocacy and assistance efforts that you've done. So what brought you here? What got you here? Can you tell us a little bit about your journey?Jasmine Souers (03:36):

Yes. So I was diagnosed with breast cancer at 26. I was misdiagnosed at 25, a few months prior. At this time in my life, I was actually only been married for a couple of years at that time. And I've done so many different things and I can have so many different labels, but beyond all else, I am a woman of God. And God really showed up very differently in this space in my life.
(04:01)
The changing point for me, the trajectory point, was going into my bilateral mastectomy at 26. And that morning, I cried all the way to the hospital with me and my now ex-husband. We were driving, and I cried in the car. And the closer I got to the hospital, I was like, "God, what is happening? What is this? I shouldn't be going through this. I'm 26. I thought I was going to be have a baby." The appointment that I was in to start the process of trying to conceive a child was the appointment that actually started the journey to an accurate diagnosis.
(04:39)
So I just thought about that shift and God's plans for me. And as I went into the surgery room, I was literally shaking. I could not stop shaking. And it was an awareness. I remember being awake as I go into the operating room and seeing all the lights, like being on TV.
(04:58)
And in that moment I realized I was afraid, but it wasn't that I was afraid of dying. I was afraid that I had played small my whole life, that I had attempted to control so much in my life that I never gave God room to do great things.
(05:11)
And when I woke up, it felt like game on. It was like, "So we get another chance at this." I realize that people have died from smaller procedures. So if I came through that and I had the chance to do it again, I want to do something with it.
(05:26)
And so after that, as soon as I could start writing again... Because I had the bilateral mastectomy, and so my arms were restricted for a little while. And as soon as I could start any idea that God would download to me, I'd make a note. I made notes of all the different pain points I experienced on my journey. What's it like to be the youngest person in the support group, the only black person in the support group?
(05:48)
We had a period where the doctors weren't sure whether or not I was going to have to do chemo, and we were trying to go get wigs at the local nonprofit and they didn't have any for black women. And so, I just made notes and I'm like, "We're going to do something with this. Nothing will be wasted." So all these different experiences.
(06:05)
I started writing, and initially I started writing because I was alone. No one in my friend group was dealing with stuff like this. No one in my cancer center was my age. And I decided to basically be the person I was looking for. And eventually I got connected to organizations like Young Survivor Coalition where I was connected with other young people. Even within that space, where it was beautiful to be surrounded by so many young people, I still wasn't seeing black women, I wasn't seeing Latina women. I wasn't seeing a lot of women of color in these spaces.
(06:36)
And so that's what prompted my initial interest into social entrepreneurship, starting, co-founding that blog with Marissa Thomas and building up that community for women of color. But from there, it really just created this opportunity where it was bigger than sharing stories and images. It became about equipping women so that they could make their journey better for themselves.
(06:59)
And then a light bulb switched and I was like, "There are so many people that are doing the equipping part of the people. What about the people supporting the people?" And that's kind of what led me to where I am today.

Dr. Wayne Jonas (07:12):

Wow, what a fantastic story. What an amazing story, I'll have to say. The awareness that there was a greater meaning and purpose for you that emerged out of what looks like and what was tragic in terms of an illness is an incredible response. Being open to the spiritual, that's all you can call it.
(07:38)
I have a few familiar experiences like this, or at least knowledge of this. My wife also had early breast cancer at 36, and this is now probably 35 years ago. And she said the same thing about being alone. She said, "Suddenly..." I mean, she had no peers that had the same kind of situation and treatment and experiences that she had, and there were not online resources at that point. So she felt very, very alone, alienated, not too sure exactly where to go and to seek out that kind of support.
(08:15)
So glad that you have created an environment for that to happen, because that's one of the things now as she looks back so many years from that first diagnosis of hers, is that she realizes was something she wishes that she had had at that time. So thank you for doing that.
(08:35)
You mentioned that you were not only the only young woman that was in the support groups, but you were the only black woman in the support groups. And one of the things I know that you have been advocating for, trying to make sure that people are aware of, is the incredible disparities, the differences in terms of the care and the outcome that black and white women actually have. The recent statistics that I was reviewing and heard about before, but I'm trying to let sink in at this point, is that black women have double the death rate, double the mortality with the same diagnosis. Why does that happen?

Jasmine Souers (09:17):

You know what's interesting is I feel like over the years when I first started in the advocacy space, it was actually learning about the disparities in clinical trials that made me start to feel like this isn't about representation of people. Like, no. We are having the worst outcomes, and yet we are underrepresented across the spectrum in terms of how do we access care, the kind of care that we have access to, in representation of clinical trials, all these different things.
(09:47)
And for me, I think in this new body of work, it's become a shifting from understanding the disparities to what do we do about it now? Because we'd mentioned this before. We've been studying the same things for a long time. Even the mortality rate, it's not a new stat, unfortunately. It's a stat that has been persistent for years. I think we've gotten to a place where people are now being louder about it, and I think that is partly the help of the patient advocates in the community.
(10:19)
But when we talk about the causes, I think that's the thing that's so difficult to address, because it's complex. I think if it were one thing, we could do that one thing, we would solve it. But it's also looking at the politics. It's looking at the way that systems are designed. It's looking at the policies, it's looking at even the history of healthcare, the educational positions, access. It's so complex.
(10:46)
And so as we start to think through what it's going to take, the best advice for people... Change happens on the ground. It happens at a local level. We can get great insight from national resources and all these different things, but if we really want to create change, we have to understand the unique needs and challenges of the communities that we serve, and then work to build some strategies to not only create interventions, but to reshape the system. We have to reshape it, because we don't want to uphold broken systems. We want to repair them.

Dr. Wayne Jonas (11:16):

Yeah. So it's both a system design thing, and it's an individual behavior. It's a on the ground thing. It is a training and education thing. I mean, I'm just thinking about my own training and education. So here I am, an older white physician trained many years ago, and if somebody like you came into my office, younger, female, okay, person of color, I already have four different differences between my experience in life and your experience in life besides my position that are different. What do I need to know to make sure I'm at least appropriately, in that time and practice, addressing these things in a way that won't contribute to the inequities that we just pointed out?

Jasmine Souers (12:07):

Well, you know what I think it's important? I think that we focused a lot on differences. There's been a lot of research in the past that has said black patients typically receive better care if they're being treated by black physicians. And then terminology important, so black meaning specifically black people and the terminology people of color being more of a collective term for all non-white people.
(12:28)
So this study is specifically about black people, and it's said that black people prefer to get treatment from black physicians because they feel like they were getting better care. Didn't feel like they were having to navigate the implicit bias, didn't feel like they were being judged for their experiences.
(12:41)
But in a study that I led a few years ago, during my time at For the Breast of Us, we were talking about increasing the representation of women of color, so beyond black. Black, Latina, Asian, Native American collective group in clinical trials.
(12:55)
And we asked what kind of factors built trust, because we know what the research has already said, but in my opinion, I'm tired of looking at what the research has said if I'm not going to do anything about it. What do we do about it now?
(13:08)
So we looked at what factors are important to you in establishing trust, and there were a few things that came to the top. It was being listened to, it was being respected, it was shared decision making.
(13:22)
And then the idea of race came, and there was people that said, "No, race is important to me." So we asked those same people that felt like race was important to you, when it's not about race, when you can't solve for race, what is important to you? And it was the same qualities. It was bedside manner. It's being listened to, it's being taken seriously.
(13:42)
So what that tells us is that race is not the only thing. And even gender was on that. Those aren't the only things that are helping us establish trust. How we treat patients, that's what establishes trust. Engaging them in the process of making decisions, that establishes trust. This awareness that there are differences also establishes trust, because I think it gives you an opportunity to say, "How can I meet you where you are?"
(14:07)
One of those things is to understand that our current healthcare system has been a one size fits all approach. You have to think what are the origins of our healthcare system? Who was it being designed for? It wasn't really designed for people that weren't white. It wasn't really designed for people that didn't speak English.
(14:25)
And so, we have to shift. Even today, sometimes we design things with the ideal patient in mind and not necessarily the needs of the patient who was furthest away from accessing the opportunity.

Dr. Wayne Jonas (14:37):

Yeah, I think that's fantastic. So I need to make sure I engage the skills necessary to build trust. And you-

Jasmine Souers (14:45): Absolutely.

Dr. Wayne Jonas (14:47):

Listed a lot of those right there. Listening is key, and respect. So taking what you hear seriously and making sure you understand it. Shared decision making. I'm an advocate for that. It's part of the guidelines for cancer care. They say we should all be doing shared decision making. But it is so challenging to do, and I didn't learn a lot about it when I was in medical school. And acknowledging the differences, but also some of the commonalities. I mean, these shared commonalities of trust, that's just basic good care of a human being that you would want anybody to have.

Jasmine Souers (15:25): Absolutely.

Dr. Wayne Jonas (15:25):

Including your wife or your mother or whoever in those areas. And realizing that you have to navigate and understand the differences in order to make that happen.
(15:35)
So I'm just reiterating some of the things you just described for my professional audience. If you're out there listening, those are the things to address. Thank you. That was extremely, extremely helpful.
(15:48)
Okay, so the missing link. Tell us about the organization that you started. The Missing Pink. I'm sorry, not the missing link. The Missing Pink.

Jasmine Souers (15:58): All good. It's intentional.

Dr. Wayne Jonas (16:01):

It's a catchy name. I like it very much. Tell us what The Missing Pink does, and how do people get ahold of it?

Jasmine Souers (16:09):

So I started The Missing Pink Breast Cancer Alliance last year in 2022, and we're looking to start our work this year in 2023. The idea behind The Missing Pink Breast Cancer Alliance is recognizing that there's so much need in this space for communities of color. In my previous work I really centered primarily on women of color, and this space, we've opened it up at the kind of guidance of other patient advocates and other organizations that if we did not include transgender, the non-binary community, then we were also kind of excluding a further marginalized community.
(16:44)
So in this space, it was important that we were broadening out who we wanted to support. And the idea of this space is that we're leaning on each other's expertise without the need of needing to be all things to all people.
(16:55)
So a few things that are really important to me in this space is innovation through collaboration. The great things happen when you get the right people in the room. But we are looking to solve complex problems, and that means it can't only be patients looking at it. Can't only be politicians looking at it, legislators. Can't only be providers looking at it. It has to be like what happens when we get into the room? Because I think that understanding of how problems impact different people help us get a better understanding of what those solutions look like on a broader scale.
(17:28)
So innovation through collaboration, bringing people together to solve collective problems, documenting those conversations. So as people are coming behind us that they say, "I can at least see what they tried and what worked and what didn't work." Patient advocacy, increasing the accessibility of patient advocacy for BIPOC patients and also engaging our allies in allyship or accomplices in accomplice-ship.
(17:53)
So the accomplice terminology is something that was borrowed from the LGBTQ community in the sense that an ally is someone who stands with you, but an accomplice gets their hands dirty. They're in the work with you. So we want to know how can we further engage our white counterparts in the space so that they understand their influence and how they can help us advance health equity?
(18:13)
And then the last part of that is really looking at how do we engage people around patient support? What does that look like? Without us doing the work, how can we connect the people doing the work so that they can work better together? When you're looking at a highway, it's not a bunch of lanes that are being stacked on top of each other. We can't all do the same thing. We shouldn't feel the need to do that. And then, this work is really looking at how can we align our thoughts and our efforts and our resources to really advance things? National resources, helping advance the work of local communities, and amplifying the amazing grassroots efforts that's happening so that other communities can see what's working and what's not working.

Dr. Wayne Jonas (18:50):

Yeah, that's fantastic. I mean, what you're talking about is collaborative teams, which is a little foreign for physicians, because they're used to working where they write the orders and everybody else carries them out. I mean, that's what we're taught.
(19:06)
But this is really looking at collaborative teams where everyone has an important role in it and they're working together to make sure that they compliment and support each other in that role to make sure that it happens.
(19:17)
Now, I know your organization's fairly new. Do you have a website and a link? We will stream that across where people can learn more about that and maybe get involved.

Jasmine Souers (19:28):

Absolutely. We're themissingpink.org. And to your point, the name was built on two things. When we chose the color palettes for this, I chose the pink that had a little bit more of a brown to it instead of the standard bright pink intentionally because it is the black and brown communities that are underrepresented. We are missing from a lot of the things that are happening, but also the linking part of it is that we can change that if we work together. So it is both those things, acknowledging both the need and the solution in one name.

Dr. Wayne Jonas (19:58):

That's wonderful. A different shade of pink, and a link specifically for that. I love it. When you get first diagnosed in this area or re-diagnosed or have to engage the oncology industry and care teams in this area, it's pretty overwhelming for most people. I mean, you come in, there's these incredible institutions and organizations and knowledge bases, and they come in and they say, "Oh, this is what you need and this is what we're going to do to you."
(20:33)
And there's a big power differential just by having that in those areas. And boy, it can really be intimidating to patients in those areas. And very often, they just don't realize that they have to be advocates and they are at least... They can't be their own advocate. They have to have an advocate that travels with them through the journey to make sure they get the kind of care that they need and that their interests in terms of what they were looking, their goals in life, are represented and are not forgotten in those areas.
(21:06)
Now, most places now have what they call patient navigators. So they will help you get an appointment and get your blood work drawn and coordinate the phone calls and things like that because the system is so complex. It requires that kind of coordination.
(21:23)
But an advocate is somebody a little different. I mean, they may help with that, but can you talk a little bit about what an advocate is like? What do they need to know, and how do they most effectively execute their role, whether they're a patient themselves or whether they're supporting a patient with cancer who's undergoing treatment?

Jasmine Souers (21:47):

Absolutely. So I think this is one of those tricky things where our terminology in the community is a little muddy. So in a hospital setting, if someone is hired as a patient advocate, typically that person is someone that the patient can go to to get better care, get answers. Or for me, I remember I had, during my reconstruction process, I had an infection around an expander, and that simple infection turned into a 16-day hospitalization.

Dr. Wayne Jonas (22:15): Oh, wow.

Jasmine Souers (22:16):

Because I had a bad reaction to the antibiotics. And I had a patient advocate that I could go to and I can say, "I don't understand what my doctor is saying to me. I don't have the right food. I'm not eating. I can't eat. The one thing that I can eat, they took away." And then that patient advocate in that setting went and she went to the higher ups and she's like, "Hey, my patient needs these kinds of things."
(22:40)
The other version of a patient advocate, which I am outside of the hospital setting, is that I, in the words of Maya Angelou, "I come as one, but I stand as 10,000." I have trainings and what the experience of breast cancer is, not just only from my own experience, but for what it looks like for other women in the community. I focus a lot of my trainings on things that are for young women, for black women, people of color. And now I'm starting to engage in what that looks like for the LGBTQ+ community.
(23:07)
So I get knowledge of these things, and as I have opportunities like this one, I get to come and say, "This is not only what's happening for me, these are things you have to be aware of in the broader scape." So advocacy, it's a spectrum. And triage cancer has a great template of what that spectrum looks like.
(23:24)
But that can range from advocating for myself going to a doctor and saying like, "Hey, I did some research on this protocol and I don't know if this is the right one for me. Can we look at this differently," to advocating for someone else.
(23:36)
A couple of years after I was diagnosed, my grandmother was diagnosed with breast cancer for the third time. She was diagnosed metastatic. And it's one of those things where I said nothing will be wasted, because had I not gone through my experience and learned how to ask questions, push for treatments that I thought were in alignment with what I wanted for myself, not just what was being pushed on me, I would not have been able to advocate for my grandmother.
(24:02)
So in this case, my grandmother went into the hospital for something simple, again, like a UTI. And for whatever reason, they did a scan and saw that she had cancer in her bones. They were willing to start treatment without a biopsy, without understanding the type of cancer that she had. And I just kept telling myself, "I'm not a doctor, I'm just saying, I think we need to know what kind of cancer it is before we go down the road."
(24:26)
And sure enough, the cancer that they were going to start treating her on, it was not the same. They assumed that it was the last cancer that she had, which was the estrogen, which is triple negative, but it was actually estrogen receptive cancer that she had 20 years ago.
(24:39)
But the advocacy part of that is pushing back and going, "I don't think we need to do it that way. I think we need to take this step." So that's advocating for someone else.
(24:47)
And then again, in this setting, I have these opportunities where I can say, "I have some knowledge of experiences from other women of color, other black women, Latino women." And so I come into this space and I say, "These are the things you need to consider."
(25:00)
But that looks differently too. That could be doing media, that could be I'm pushing legislation, that could be hosting community education events in your community.
(25:09)
So it looks really different, but the whole goal is to make the pathway easier for patients and people that are affected by breast cancer.

Dr. Wayne Jonas (25:16):

Those are great examples. I think that what I hear out of that also is that the system needs to respect and listen to the advocate and make sure that they are an important part of the team. Right?

Jasmine Souers (25:32):  Absolutely.

Dr. Wayne Jonas (25:33):

In those areas. They can't dismiss what they're saying on behalf of the patient in those areas. I think that's great. Do you provide some education and training in your organization for people that maybe have a relative diagnosed or want to get into the advocacy area?

Jasmine Souers (25:49):

It's interesting, because what we'll be doing, we started down that road and I keep thinking I want to compliment the work that is needed. I want to fill gaps. I don't want to duplicate efforts. And so as we start the idea of developing this training, I shifted that and I said, "Instead of us creating another training, what if we created a guide for what building or designing an advocacy training looks like from a diversity equity inclusion perspective?"
(26:13)
So that's one of the things that we're working on this year. We're looking at helping other organizations that already have trainings rethink their program design so that it's not just us that are doing it well, that we allow everyone to rise.

Dr. Wayne Jonas (26:24):

That's a great idea. I really like that. That's the multiplier effect that can add in these important topics into the groups that are already trying to do similar things or the same kind of things. So very often nowadays with Dr. Google so readily available on our cell phones, person gets a diagnosis and they immediately go online and they start just reading everything. What do I find? What does it say? Et cetera, et cetera.
(26:56)
And now with I guess AI and ChatGP, it's going to start feeding you even more stuff. And there's a lot of stuff on that line that is very different sometimes than what your oncologist is recommending or saying. Some of it is good. Okay. Absolutely good. Some of it is not so good.
(27:21)
What's the approach to complementary or alternative approaches, and how do you get them integrative? How do you actually merge them in those areas and what's your thoughts and how do you advise people on this?

Jasmine Souers (27:34):

You know what's interesting is I think we have not exactly gotten to a place, and I speak specifically for my experience as a patient and the black community, is that sometimes it goes all the way to one end or the other, that there hasn't really been a lot of conversation about how they can work together.
(27:56)
What we know is that people that typically go completely holistic and they don't do allow the treatment, is that typically they advance. By the time they're going back, then now they're at a later stage. And so that's a dangerous thing.
(28:09)
We want to teach people how to use those things together, how to bring in nutrition, how to look at acupuncture and all those different things. But I think the challenge is that there are often not a lot of good examples of black and brown people who are navigating those things.
(28:24)
But we see lots of imagery of what white people look like when they're doing yoga, when they're doing acupuncture. From the outside looking in, it can look like, "Well, maybe that's not a thing that black people do. Maybe that's not a thing that Latina people do."
(28:37)
But on the flip side of that, I think it's important that we start to educate communities about the advantage of it. And not just educating about the benefits, but acknowledging that a lot of times those services may not be even available in a lot of black and brown communities. So when we start to think about how do we bring them together, to me, I think about the levels of accessibility. Are you partnered with your local communities? Do your local hospitals know that you have these services? When you're promoting your services, are you only promoting the service coming from you? Do you have an opportunity where you can say, if you can't go to a breath work teacher, here's a breath work exercise. Here are some YouTube videos.
(29:18)
I think we have to think in terms of how do we give people access to these great resources and these great knowledge, meet them where they are, and understand that for some people, being at this stage, especially if you're dealing with people that are navigating barriers to healthcare in itself, sometimes integrative oncology can feel like an extra. It can be another thing that needs to happen. And I think if we can help patients get to the place that they can see that, no, this is a way to embrace total healing. This is a way to look at, to rethink the way that your life is going moving forward, not just in this moment. I think we can then open the door to say, "Okay, if you can't afford this, here's what you can afford. Here are some apps. Here are some different resources that can help you get into this space."

Dr. Wayne Jonas (30:09):

Yeah, that's so wonderful. Thank you very much for that. I really like that term total healing. It's what could arise if we got whole person care in these areas. And the behavior, the lifestyle, the diet, supplements, support aspects like yoga, acupuncture, all can be very helpful.
(30:31)
But as you point out, if you think they're going to treat the cancer and you abandon the conventional treatment for the cancer, you're often going to get in trouble because they're not treating. They're important and they support the cancer management, but they have to be done integrative-ly and together in those areas. So it's important to ask about them. It's important to bring them into your own care, especially when the evidence of which there is for many of these things out there and good and should be available, but they need to be integrated. They need to be merged with the effective standard treatment for the cancer in those areas.
(31:11)
And as you also, I think, pointed out, very often these things are not paid for and not covered in your normal care. And so unless you have resources to pay for them outside of that, they can add on to the cost and inconvenience of what already is a daunting management issue. So thank you. I think that's wonderful advice.
(31:37)
When you were working with us in the integrative oncology leadership community, I think that input that you had for this group of leaders in oncology that were trying to do whole person care and move their system towards whole person care, I think was extremely important in knowing how to do that.
(31:57)
Recently we were involved in a study in which we actually classified the amount of whole person in integrative care that was available at institutions around the country and found that even if the minimal amount, basic nutrition, spiritual care, stress management, exercise were made available, people, women with breast cancer actually lived longer in those areas. But it was embedded into mainstream standard care approaches. So I think that's really the best advice to do.
(32:30)
So before I flip over and ask you for your checklist for patients, can we talk a little bit about pain? Pain is a huge problem both inside and outside of cancer care, maybe even bigger outside, who knows? And we're not treating it very well. We're not treating it. We saw that pushing drugs, especially opioids at this, got us into more trouble. When the pandemic came along, it exacerbated those problems. The epidemic of opioid deaths and problems has gotten worse during the pandemic.
(33:11)
And if you add on top of that the fact that women are not treated effectively as men for pain when they present with pain and people of color are not either in those areas, then there's a lot of suffering people out there that we need to redesign this. Can you talk a little bit about how you approach pain and how you help people become advocates and clinicians to make sure that they're addressing pain using more non-pharmacological approaches?

Jasmine Souers (33:45):

Absolutely. So what's interesting is I was listening to a podcast recently, and they made the note that up until the 19th century, hysteria was still a cause. It was still a diagnosis that they were given. And so oftentimes, women would come in for issues that were female health or women's health issues, and they're like, "You're hysterical."
(34:06)
And on the flip side of that, there are times where, and studies have shown this, and we saw this within our study as well for our women of color, that they felt uncomfortable approaching the topic of pain because they were afraid that they would be treated as drug seekers. Even for myself, I remember I was hospitalized for that first stent, for that infection, and I would want a Tylenol. And they'd be like, "Here's some morphine." I was like, "God, why are we starting so high? Can we start a little lower on this?"
(34:40)
So for me, I think we have to be in a place where people's concerns are taken seriously. And it's a challenge, because I think traditionally we've used the pain scale, but even the pain scale is subjective. We all have different levels of pain. But people's concern needs to be taken seriously, and they need to be taken in a way that is not judgmental.
(35:01)
But even when we get into the state of being comfortable voicing and receiving that there's a conversation with pain, I think we have to start asking more questions about ways to manage it. Sometimes we are very quick to just throw more medicine on it. I know I was in a place where even not pain-related, but we start the hormone therapy. Hormone therapy gave me hot flashes. So we had to take something for the hot flashes. That medicine, and I came off of it, I went into anxiety. It compounded so many issues.
(35:31)
And so as women come to me, I go like, "Don't jump on medicine first. Please ask them for alternatives before you start that, because you don't want to be in a place where you're taking a medicine to combat a medicine to combat a medicine."
(35:42)
So I think it's one of the things I really encourage women or people in general, to one, don't be so quick to ask for a medicine, to receive a medicine. Ask if there are foods that can help. If there are supplements that can help, if there are exercises, if there are activities you can do that can help, and then go into medicine if it has to get to that point.
(36:02)
But I think sometimes it feels like the first response. I don't know that it has to be. I guess it depends on your pain level, but I definitely want to encourage people to either get a second opinion, which is very important, or to at least explore what alternatives may be.

Dr. Wayne Jonas (36:18):

Yeah, I think that's great. This doesn't mean that opioids and pain medications are evil or should not be used. I think there's really important times when they are essential, actually. They need to be used, but they shouldn't be the only thing in the medical bag, right?

Jasmine Souers (36:35): Right.

Dr. Wayne Jonas (36:36):

There should be broader ways, and there are many, many other ways. And there's guidelines now, national guidelines that actually show effective evidence-based approaches that can supplement and compliment medical treatment that are effective in terms of treating pain. So think about that, advocate for that, ask for that in those areas. I think that's great.
(36:57)
Well, I think I want to put on the flip over and ask you the question about I'm a patient that has been recently diagnosed. Put yourself sort of back in your shoes at 26 and say, "All right, what do I need to know? Can you tell me here, here, and here, what do I need to know before I even walk in to the doctor's office and begin to set up not just my treatment plan. What do I need to know to set up my personal healing plan in those areas?"
(37:34)
And as you know, we talked a lot about that through the integrative and the hope note toolkit, setting up your personal healing plan and helping your doctor and your clinical team to do that. What can I bring to the table to make sure that happens?

Jasmine Souers (37:51):

I think the first thing is making sure that you have a provider that you can trust, a provider that speaks to you in a way that you understand what they're saying, and a provider that's willing to break things down to you, that makes you comfortable asking questions, which means then you must also ask questions. It's important that you don't leave these appointments not understanding what your diagnosis is, not understanding what the medicine is, not understanding the side effects.
(38:18)
It happened so fast. From diagnosis to my mastectomy, I think I had two weeks to prepare. That's what's happened. Okay? It happened so fast, and oftentimes it does not leave room or it feels like... Let's say that. It doesn't feel like we have room to think about what do we want?
(38:40)
I think a great example of that in terms of knowing what healing and what you want your life to look like after this, sometimes we are being forced to make so many decisions about what it looks like right now, what's happening right now, that we don't feel afforded the opportunity to think what do we want our life to be after this?
(38:57)
A great example of that is having this conversation about fertility preservation. I remember talking to the doctor and her response was, "Let's worry about cancer now and kids later." But that mindset means that we could do something now that may enable me to have kids later if we're not willing to have this conversation.
(39:14)
So I think having a doctor that you can trust, being willing to ask questions, understanding what you want your life to look like when this is said and done is very important, because that allows you to make the best decisions for yourself throughout the process. And I also think it's important to find community, and therapy.
(39:34)
I am a very big advocate of therapy, mental health support, community support. There are things I learned in community settings that I would not have learned in the doctor's office. I think first, being a young woman, they weren't used to treating young women. And I kept hearing that over and over again. And so there were questions about sexual health and all these different topics that my doctors weren't bringing up to me, that I was assuming something was wrong with me because they weren't bringing it up to me that I was learning was actually normal and that there were actually other services and things that could support me.
(40:09)
And so yeah, those are the things, I think.

Dr. Wayne Jonas (40:12):

That's fantastic. I think if we could sort of bottle that, and I hope you have on your website, and again, we're going to run that information to our listeners, making sure that you trust your provider and the oncology team in that area. And we've talked about what constitutes trust. Take the time to think about your life goals. Okay? It's not that you're going to die tomorrow. I mean, maybe if it's advanced, it might be soon, but take the time to actually think, "What do I want in my life?" So that those goals are not lost in the process of cancer treatment, and then widen your team. Widen your team to participate in people that aren't just the folks you walk in and see in the office or the treatment here, but the community patient advocates, as we've talked about, family and friends in those areas, as you mentioned at the very beginning of this interview.
(41:09)
So that's wonderful. Thank you. What a tremendous resource you are for so many people, and it's a privilege to be able to sit down and have this conversation with you, and I want to thank you for that and want to urge all our listeners to go learn more about what you're doing, get engaged and help out to provide more whole person care to everybody, especially women of color.

Jasmine Souers (41:35):

Absolutely. Thanks so much for the opportunity.

Dr. Wayne Jonas (41:38):

Good. Take care.

Jasmine Souers (41:39):

You too.