S02 E06 MBC & Latinx Issues

In today's episode, we wanted to shed light on key issues impacting the healthcare of the Latinx community living with MBC here in the United States. Our cohost, Natalia Green, speaks with her sister about their experiences as patients, caregivers, and members of the Latinx community.  We also hear from Dr. Mabel Mardones, a breast oncologist based in Colorado, and Sara Carbajal-Salisbury, the executive director of Alliance Community Services, which has the mission of helping minority communities by making services and education accessible to them.

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Transcript

[00:00:00] Lisa: From SHARE Cancer Support, this is the Our MBC Life podcast, dedicated to exploring life with metastatic breast cancer from the perspective of us, the people living with this disease and the experts who partner with us to help make our lives better. So glad you're here since no one should face MBC alone. In today's episode, the team at Our MBC Life  have worked to shed light on key issues, impacting the healthcare of everyone living with this disease. And yet people still get marginalized care based on racial biases and stereotypes that are still so endemic in healthcare in America, it's national minority health month.

[00:00:46] And we wanted to hear about the life experiences of the Latinx community, dealing with MBC here in the United States. We've also been wanting more conversations around how MBC and genetic and biomarker testing can impact families. So today our cohost, Natalia Green takes us to her family and the experiences of the Latinx community. First with a conversation with her sister, Carla followed by an interview with Dr. Mabel Mardones, a breast oncologist based in Colorado, and another conversation with Sara Carbajal-Salisbury, the executive director of the Alliance Community Organization that has the mission of helping minority communities improve quality of life by making services and education accessible to them. Here's our co-host Natalia and her sister, Carla. 

[00:01:39] Natalia: Hello, my name is Natalia and I'm 36 years old. I was originally diagnosed with stage two breast cancer in 2017, three months after my second child was born, my little boy. In 2019, I was diagnosed with metastatic breast cancer. Only two years ago, I also discovered I was BRCA two positive. I grew up in Utah, but I lived in Arizona for about nine years ish while pursuing my undergrad and graduate degree. And then I moved back to Utah shortly after my first child was born to be closer to family. 

[00:02:15] Carla: Hi, my name is Carla. I'm a mother of seven. I am 43 years old, and I am Natalia's older sister. I was a CNA before getting married for quite a while and continued to be a CNA until I had my third or fourth baby. And then I did preschool for several years. And currently I'm at home with my kids, trying to figure out school between soft closures and them going to school during the pandemic. And this year, I just found out that I was also BRCA two positive. 

[00:02:45]Natalia: Hi sister, how are you doing this morning?

[00:02:48] Carla: I'm feeling great. Things things are good. I'm not around my kids right now. I'm in my happy place. 

[00:02:57] Natalia: So the reason I wanted to talk to you maybe interview you a little bit was, Our MBC Life is going to dedicate an episode to Latinx or Latina issues. And I thought it would be interesting for us to share, kind of, cancer and breast cancer experience as patients or as caregivers, or even as advocates through our Latina perspective. I'm sure it's not gonna be the same as everyone, but I think our experience isn't unique, but it's not a widely known experience. Just so we can paint a picture of our family dynamic, how would you describe us?

[00:03:35]Carla: Let's see, my parents, our parents,  immigrated from El Salvador. Our parents had three boys and two girls, and we lost one of our brothers to cancer in 2015. Our family is passionate, hardworking, and have a deep religious core. We are fairly close to each other and are involved in each other's lives. I think over the years you've all gotten a little bit closer, especially because we've had cancer in the family quite a bit. 

[00:03:59]Natalia:  That's right. I think it's important to say that you and I are both married to white men and we've grown up in a predominantly white area living in Utah. However, you and I have talked about having, different experiences that maybe our spouses could relate to, you know racial microaggressions as Latina women. When you were a CNA or working more in the medical field, you worked on the oncology department, right? 

[00:04:23] Carla: Yeah. 

[00:04:23] Natalia: Did you ever have a feeling that your Latino patients were experiencing, I guess, a different level of care than your other patients? 

[00:04:32]Carla: Yes. I particularly remember one experience where a fairly young couple came in. I can't remember the type of counter that she had, but she came and I think it was her parents and a sister came and they were immigrants. They didn't speak English, maybe just a little bit of English. And they would have me translate, not that my Spanish is that great when it comes to medical terminology, but I would help translate what they needed, but they were very secluded. They would keep their doors shut. They were very quiet when we would go in, and he'd ask her questions. She wouldn't know how to answer them, even if I was translating. And she looked over to her husband, and he tried to answer too or when it came to pain, meds and stuff, they weren't so quick to ask for them.

[00:05:14] And they're just very quiet, very standoffish in a way. And they were pretty much living in that hospital room while she was there. She was there for a couple of months, and it was hard to see. I do remember that the other CNAs that spoke Spanish or housekeepers ones that would come in and clean, they would all go in and check on her and see if there were any needs that weren't being met to try to advocate for her because they were already employees on that floor. The patient felt they could trust other employees that spoke Spanish and also had a similar background to them. 

[00:05:45] Natalia: Yeah. Do you feel like the doctors treated them differently because of this barrier between them? 

[00:05:52]Carla: Because we're in Utah, a lot of them were returned LDS missionaries. So they had spoken Spanish on their missions. So they were able to communicate a little bit. Or a lot of doctors at the time. I remember them saying that they would go to South American or central American countries to learn Spanish, that when they came back here, they could communicate with their patients that they couldn't always make out what the patients needed. So they would almost have to guess and say, Oh, okay, this is what you want when really that's not what they were asking. But the doctors are trying to come up with some form of an answer to try to treat their patients. So they weren't getting down to the real reason of what the problem was or what it is that you were seeking.

[00:06:24]Natalia: That's really interesting. So in preparing for this interview,  I came across this Atlantic study from 2014. It was saying that Latinos are a racial and ethnic group that are least likely to visit the doctor. And there's obvious issues, just like you mentioned, like language barriers, when it comes to getting healthcare, going to the doctors and not being able to communicate what is wrong with you. So they just drop out in seeking those services. Another is just access, right? For instance, in Utah, a lot of Latino communities and, or neighborhoods, don't have very much access to healthcare because the jobs that they have don't offer health care or they might not be able to afford it. And the biggest one is the fact that a quarter of Latino adults in the United States are undocumented. So they're worried that they're going to be put on the grid if they tried to get access to healthcare and potentially be deported. And they have to constantly be reassured, that you can go to the doctor, and ice isn't going to be called when you're there, or your family will be safe, you'll be able to come home afterwards. 

[00:07:32]Carla: I'll give you an example. I have lupus, I've had lupus for seven years. I was diagnosed when my youngest child was almost a year old. I have lots of questions and sometimes when I do ask questions, they don't answer them. But then I started taking my husband and I'd get more answers. And I'm not an immigrant, I've been born and raised here, but I still, when I go to the hospitals, and I'm by myself, I just don't even if I'm experiencing any pain or whatnot, I just say I'm fine. Cause I don't want them to think that I'm here trying to seek other things or pain meds or anything. I just want them to treat me, almost like a professional and just give me the respect that I deserve. But I'm also a patient that seeking some care, but I don't want them to blow me off thinking that I don't understand anything. So then I started taking Todd, my husband with me. 

[00:08:18]Natalia:  So let's face it. Like our family has bad genes. You and I have auto immune disease. Our brother was born with spinal bifida. We had a brother that died of cancer. And now I have stage four cancer. And now we find out that you and I are both BRACA carriers, right. It's so interesting, growing up, seeing mainly my mom handling all the healthcare while my dad worked, navigate healthcare and seeing people be so dismissive or approach her with a lack of respect that maybe you and I are just humans we think we deserve, just because she wasn't able to verbally communicate with the doctors or about her questions.

[00:08:56] And so there's a lot of blind trust my mom had to go with because her doctors wouldn't break things down for her that she would just say, okay, okay, give this to my kid or. I trust what you're saying or whatever specialist you're directing to. So it really affected how I approach my own health care even from getting pregnant. But especially after having cancer, I think that it really became important to me to become like a super difficult patient and  advocate for myself.

[00:09:25]Carla:  Yeah. And I think I'm more like her mom just I'm more trusting blindly to think, okay, this is what we're going to do, this is how it's going to be. But then I come home to you or to our brother or sister-in-law then you guys start asking me all the questions. And I think, Oh, I should have asked that. When I was diagnosed with lupus, I wasn't feeling well. And the first year after I had my son, I couldn't hold him when I was nursing him, I'd have to wake up my husband in the middle of the night to help me hold him. I went in and I saw a doctor, a family care doctor, and he said it could be postpartum depression, or just overweight. And then he sent me home and that was it.

[00:10:01] And so I was really frustrated, and I didn't know what to do about that. And I don't think I was going to do anything except for the next day I was at the store with all seven of my kids. And my right leg had been hurting for months, it would go numb, just the feeling wasn't good. And it almost like it was on fire, but I began to ignore it. And especially after he said I was overweight or whatever. And the next day is at the store and my leg was hurting a lot. And out of nowhere, I had no feeling to my right leg, was almost as if I didn't have a leg at all. So I had to call Todd to come get us from the store. Cause I couldn't drive home.

[00:10:33] And when we went to the ER, they asked me, are you sure you didn't break your ankle? And to me, I think I would know if I would have broken my ankle. I was diagnosed with lupus that very next day of rheumatoid arthritis, but had that not happened to me at the store, I would have never gone back to the doctors to see what was wrong with me. 

[00:10:50] Natalia: It's so crazy how that happens. So our brother Mario died of cancer in 2015. And his wife was telling me, she's also white and she was telling me that it was weird to be involved with him during this time, because she could see racial biases happening while he was going to get healthcare. He was going to the doctors for a couple of months cause he was just having bone pain all over. And his wife was telling me that they'd go in and they made it seem like he was just in there to ask for pain meds. And usually when they would go in he'd be dressed in gym clothes or just like clothes that he'd be wearing around the house because he wasn't feeling very well. And then she told me that one time they went to a family practitioner, a new one, and he went in with his suit after work. And the experience was like completely different. Like now they want to run all these tests and they want to do all these things. And then unfortunately, he ended up going to the ER and they found that his cancer had metastasized just all over his body and his organs and his bones. 

[00:11:58] Experiences like that, I don't think people realize how you carry other people's traumas or generational trauma with you sometimes. And it effected my own healthcare. So when I was diagnosed metastatic, I started having a lot of bone pain, and the scans confirmed that my cancer had metastasized. And when I was going to my radiation oncologists to get mapped out for radiation on my spine, at the time the pain was just like unbearable. I could barely stand up. It was really hard for me to lift the kids. And my oncologist, like what's going on? And I asked him what do you mean? He was like, why aren't you? We can all see that you're in pain. Your scans are telling me that you're in pain, but why aren't you taking pain medicine? 

[00:12:44] I explained to him, I told him the story about Mario. And I was like,  as a person of color, like I want to be taken seriously. When I'm at the hospital or when I'm talking to you, and I want you to believe the symptoms that I'm having and they're not caused because of something else. So I didn't want to come in asking for a handout about pain management. And he was thrown back by that, but I know I'm not the first person to experience this. You need to be on the lookout for your own patients. I'm like, I would love pain meds, I'm in a lot of pain. But I also don't want to be judged because I'm taking them, or I don't want you to think that I'm not feeling this type of symptom because I'm asking for pain meds. So that was a really interesting experience and an interesting conversation to have with my radiation oncologist. And I think it just took him back a little bit and he didn't realize that this could be going on with patients that he was seeing. 

[00:13:37] Carla: I think when we go to the doctors, they automatically think we just aren't going to understand anything.

[00:13:41]Natalia: It does feel that way. It definitely does sometimes. Luckily I have a team that I trust now with the doctors that I do have, but at first I was a little worried and I used to take my husband all the time to my appointments. Anyways, so yeah, the same experience in that, like I need this white dude to be with me, so this other white dude can believe what I was saying. 

[00:14:02] What I'm always curious about, you're the first person in our family that I told when I was first diagnosed. And I was curious about how that conversation went with the other family, you guys talked about when I was first diagnosed and when I became metastatic. 

[00:14:16]Carla: When you first told me, before you had told anyone, I was just worried about our mom. Just because I remember everything that she went through when Mario was diagnosed and everything that happened to him. It was a lot with Mario. It was sad. It was an emotional roller coaster for everybody in the family, especially our parents. And so I think I worry that was going to happen again.

[00:14:35]Natalia: So it was a difficult time for me as well for the obvious reasons, you know, having cancer just freaks you out, and you think you're going to die the next day. But the only reason I came to you to tell you at the time, because I knew that it would be difficult for me to talk to my mom about it because I knew it was going to take a lot of emotional strength on my part, to come to her and I, at the time, like I don't have. I can't share all of that right now. I just gotta focus on the kids and Danny and myself. I had to be strong for them, and I didn't know if I could be strong for my mom. And just this morning, I was talking to Danny about that. If he thinks his family and our family would handle this diagnosis differently.

[00:15:17] And he said like the women in your family are strong. Nothing is ever wrong with them. And even when there is something wrong, like no one would be able to tell. And that we're resourceful and that asking for help is like super against our own nature. So it's hard for me to ask, even now, after almost four years of having cancer, I try to pay your kids, whatever money I can for them to watch my kids, or when I asked for help it's very difficult to give up those types of control in your life. And I think especially as Latina women, it's really hard for us to admit and be vulnerable when we need help. At that time I thought I'm going to tell Carla, and then I felt really bad. I'm like this burden is going to land on her, because I can't protect my mom and be strong for my mom the way that I think you guys wanted me to be in that I knew I should be with her. 

[00:16:06] Carla: I think we see my mom how strong she is.  So I think we almost, think that's the way supposed to be, that's the way everybody is. I don't know. With you, I think it was super scary, but maybe I just felt like, okay, this is going to be taken care of. Then deep down inside. I know that what the possibilities are at the end, if something, if it doesn't go so well, like what happened to Mario?

[00:16:29]Natalia: Yeah. 

[00:16:30] Carla: So I don't know. 

[00:16:32] Natalia: It's really hard. So I think to give better explanation of why we're so protective our mom is, our mom is the matriarch of our family, right? Everything goes down the line. We don't ever want to offend mom. We're all very respectful of her, even when she says like crazy stuff to us, like you just go with it. You don't yell at her, speak back to here. There's a really weird unwritten. I feel like a sense of respect and boundaries we don't cross with mom. 

[00:17:01] Carla: I personally don't think I've ever disagreed with her. I think I am loyal to her. And I think it's because where she's at today, everything that she's gone through to, to be to where she is today, how could I ever be rude to her? How could I ever think any less of her? Because she fought hard to have the life that she has today. So I feel like she's already suffered enough. I don't know if I don't want to like, cause more grief in her life. 

[00:17:25] Natalia: Yeah.  That's so well put because I don't think people can really, not that I don't think other people respect their moms. So there's a reverence, it almost feels like or protectiveness of her. She's the final say about a lot of things and we also don't want her to feel bad or be treated bad because of her experiences as an immigrant. And what it took for her to be here in the United States. Yeah. Now  your clearly your mother's daughter, you're the matriarch of your own family, right? 

[00:17:52]Carla: I am the boss of eight people. 

[00:17:56]Natalia:  No truer words have been said. 

[00:17:57]Carla: I think maybe my dog's even scared of me. 

[00:18:01]Natalia: But it's weird how this stuff is generational. So no one would ever know, unless you tell them that you have your own health issues, right? You have lupus, and it's a really bad case of lupus, right? Like it almost affects your organs and things like that. You find out that you are BRACA positive and now you're starting to go into those seen doctors about preventative issues you can do so you don't get breast cancer. So as this Latina, like Mayan warrior, how do you ask for help? Or how do you get support? 

[00:18:32]Carla:  I have to remind the family when I get really sick or I'm tired that, Hey, you guys, I do have lupus. And I don't want to be the mom where my kids remember, my mom was always sick. She was always in bed and we always had to do things for her. 

[00:18:45] Natalia: I felt the exact same way in the sense that I'm always worried that the kids are always gonna think I'm sick. Like sometimes just when we meet strangers or Rosie goes to school, and Rosie's my oldest daughter, like the first thing she tells people is that I have cancer. She like, my mom has cancer. What an awkward positions to put a stranger in . They're like, Oh, okay. It's really hard to ask for help. And I do now, now I'm just like, I'm just trying to live. Each day. And if one of your kids can come over Carla and watch mine so I can sleep for 30 minutes, I'll call and ask now. If I'm feeling really exhausted or have really extreme fatigue.

[00:19:27] Carla: Do you think you feel that way too because you've had cancer for a few years now, so you're almost exhausted. You're like physically drained of pushing yourself, you're realizing I have to put a little bit of self-care towards myself in order to be a better mother or a better wife to my family. 

[00:19:41] Natalia: Yes. I think that first year, when you have cancer, you're going through treatment. I tried to do a lot of it by myself.  Danny was working at a firm where his hours were insane. So I'd be at home with the kids, and I wouldn't feel very good. But I was like, this is just one year I'm going to have to put up with this, or as soon as I'm done with my treatment and I'll bounce back to my regular self. And at the time, you know,  I had basically a newborn, and I had a toddler. And it was so exhausting. And then two things happened. I became metastatic, and I could just tell from my mental health that I wasn't being the mom I wanted to be. And just most recently, given the brain mets diagnosis and having those seizures, I'm like, I physically can't be around my kids. It's not going to be good for any of us. So it made it, not easier, but I was more willing to accept help because I could see my own limitations. But it's still really hard. 

[00:20:39] Carla: I think to this day, I'm better at asking for help, but I still worry. Spring and summer approaching and all the physical activities are coming up. It's a mental battle with me to this day that I need to keep up with my kids and it's hard. 

[00:20:52] Natalia: Yeah. So now that you're going to start your appointments with oncologists to talk about what you can do is preventative care from getting breast cancer.  You and I have talked about what those preventative options can be,  having a hysterectomy or mastectomy. Do you think that's going to affect your decision-making like how long those types of treatments will put you out for?

[00:21:16] Carla: Yeah. Not so much. I know if I have a double mastectomy, they said that the recovery and the road after that is a lot harder than the surgery itself. And in my head, because I'm not familiar with that, I think, okay I'll recover quick and I'll be fine. But because I have lupus, my recovery may be even longer. At first, when you were diagnosed with the BRCA two, it took me a while to go get tested because I'm like, okay, well, I get it she's got that. But I didn't think I'd test positive. I kept on putting it off. I wasn't so worried about it, but because you're stubborn and kept pushing me, I figured what if I do have it? That'd be able to prevent something I could have prevented just because I'm pretty much lazy and didn't want to put time into that area of my life.

[00:21:54]Natalia: I think what I said to you is, why do you want cancer?  (laughter) Why do you want cancer? Go get it tested. 

[00:22:02]Carla: Yeah. I think because we've seen Mario and then we've seen you go through cancer, it's not a hard choice for me to make. 

[00:22:07]Natalia: It's so hard to get support. And I think you actually might find this more relatable once you start going through your own preventative care, is finding support outside of your family and people who are going through what you're going through itself. When I was first diagnosed, the first year, I didn't want anything to do with support groups. But then, as your hormones change, and I started going through depression, like I might need to find other people in my situation to talk to about breast cancer. And so I found local groups, but it was really hard to find, even to this day, like somewhere specifically where I fit in. I wanted to find a group that catered more to young survivors because, you know, being 60, having breast cancer is a little bit different than being 30 and having breast cancer, just because you're in different stages in your life.

[00:22:59] So I joined a local support group, which is great, but I think I was only one out of two women of color in their group. And then, when I became metastatic, I was the only metastatic person which really made it difficult to connect. And then you add all these other things, like I'm not Mormon and being in Utah, most people are Mormon and also, being a person of color and having immigrant parents was relevant at the time because the political climate was so polarizing. It started to feel like I only had one thing in common with these people a lot of the times, and that was just breast cancer. 

[00:23:35]And it made it really nice to be online and talking about breast cancer, because I was able to find some really great support groups. For the breast of us was the first one. They were just starting out at the beginning, getting their group together. But it was very helpful to be around people who maybe felt the same way as I did, had the same political eyes I had, or views I should say, and maybe seeing other people who look more like me. Do you seek out community help or support groups or BRACA or lupus?

[00:24:05]Carla: The doctor that I have, my rheumatologists, he's really a nice guy. I really like him, but he's more of a, let's go the natural pathway more, for example, I had gone to him several times because I have high anxiety sometimes, and I think I can't live like this. I wouldn't mind being put on something. And he has said no to me. He says, just walk, just go walking every day, just be out in the sunlight and just walking should help you. And it does, it does, but there's some days I just don't have the energy to go walking. Something as simple as walking, I don't have the energy at all times. Then I've also gone to my family care doctor, and she told me the same thing, oh, you don't need to be put on anything. So then I just get frustrated of trying. I wouldn't mind finding a support group to see what options they have and what they do to seek more self-care for themselves, so yeah. I'm interested to finding a BRCA two lupus support group to see just to see what their options are and what it is that they're doing and how to get through everything.

[00:24:59]Natalia: I'm going to give you the same advice that I give everyone else who gets recently diagnosed. When you go to your appointments, you need to take your mom, your friend, your most nosy tía, your sister, that's going to ask all the questions that you might not ask, and it will be awkward because you're not so forthcoming in trying to get information. If it's hard for you to advocate for yourself, you can bring someone who can advocate for you. So another thing I wanted to talk about, about Latina community that I don't think people realize is our indigenous connection.

[00:25:34]The same Atlantic article that I was talking about earlier also talks about how one-third of Latinos in this country have access to healthcare, and they're still really hesitant to seek healthcare. In a survey in Colorado, 45% of Latinos say they rely on home remedies to avoid medical costs.  I don't think people realize, especially being immigrant kids, that our parents have indigenous backgrounds sometimes, and that they still rely on old school indigenous home remedies.

[00:26:09] I know when I was first diagnosed, like my mom would just send, this is the kind of tea I need to drink, this is what I need to eat for my inflammation, this is what I need to do. And just like lists and lists of home remedies, rather than, you know, I'd tell her like, mom, I have medicine that will help me through all of this. And even to this day, when I go over, she's still recommending things that will help either my cancer or my symptoms. Do you find yourself in that same situation? Like maybe you are reliant on home remedies?

[00:26:39]Carla:  Yeah, I absolutely do. You know that I have, (laughter)  I can't lie on here because you know I'd be lying. I think I've even called you before, said I have got a couple of these oils if you want to try them, natural path or natural oils or- I think that's what I'm more into, or I guess a little bit of Zen, I don't know. But with my mom, yeah. I wasn't feeling good earlier this week, I had an upset stomach, and she made some special soup for me. She's very try this and try that with teas, oils, plants, and all that. So I don't mind it. I like it. The truth of it is, I'm pretty much just lazy to try anything new. So sometimes I'll just stick to what I have. For example, I've been on the same medication for almost seven years. I think this next visit next week with my rheumatologists, they're going, I think, try to change stuff. And so, I'm almost hesitant even go because I just, I hate the change. I'm already used to this. And so when my mom brings in all these teas and stuff, I'm sure they're good for you. I just hate the change.

[00:27:33]Natalia:  Yeah. It feels like a tried and true system, right? This is so well known that X, Y, and Z is going to cure this symptom, then I should just do it. And then I don't have to make a doctor's appointment. I don't have to do all this stuff. I'll just take whatever. Not to say that, homeopathic methods, I think there's a lot of value in them, but it's an entire dismissal of Western medicine sometimes. And it keeps us from being at the doctor's office and getting health care sometimes.

[00:28:02]Carla:  I think if I was more educated in the homeopathic arena, I think I would sway more that way, absolutely. 

[00:28:08]Natalia:  And this brings you to another issue too, I think there's a trust element to these homeopathic methods sometimes, because we trust our mom or we trust our aunts and uncles. Because we respect them and we're familiar with them, we can trust their advice. And this brings to another issue of how we don't see people like us in the medical field, other Latinos or other people of color. And so we don't feel like a connection sometimes with our doctors. Because I hear all the time people saying, especially in the cancer community, like my doctor and I are best friends, they cried when I was over my diagnosis, they just really went the extra mile. And I love my doctor, but I don't feel like he and I have a personal connection, but I trust based off of science and what he's saying to me that we are on the right path for my treatment.

[00:28:58]Carla:  Would you feel more trust with your care team if they were all Latinos or Latinas?

[00:29:02] Natalia: I think a little bit. I think just also how they approach stuff. So well, my doctor is a white man, my oncologist, his nurse practitioner is black and then my plastic surgeon, he has a really diverse team. He is Muslim and his parents, I think they're from Iran. Anyways, with my nurse practitioner and my plastic surgeon, we come from a very relatable space that   does make me trust them more. And the way they speak to me is a little bit different. Like their bedside manner seems different. Both of them have given me their personal cell phone numbers to call them if something were to come up or if I can't get through in their offices. But like my oncologist and my surgeons and my radiation oncologist, even though I do trust them, and I do have good relationships with them, we're not like chummy, at all. 

[00:29:50] Carla: Yeah. 

[00:29:51] Natalia: So there is a sense of community of seeing someone that looks like you. You're able to develop a deeper trust than what's on the surface. Than when us as a community go in, and we just see a bunch of white people. 

[00:30:02]Carla: That's true. As you're talking, I'm trying to think of all the doctors that I see. There's just my rheumatologist; he's middle Eastern. But other than that

[00:30:10]Natalia:  I had a Latina OB GYN and she was like my fav when I was living in Arizona, Dr. Porras, and it just seemed more relatable, because she would also really take the time to answer my concerns. Like her clinic was a mess, cause she was always running late. She had so many Latina patients, but I knew that, we're long-winded, and we ask a lot of questions when we do feel comfortable and she would take the time to answer them. So, I think there can be difference having a more diverse medical field so patients can see people that look more like them and feel comfortable receiving that care. 

[00:30:46] Carla: Do you think here in Utah, we see less of that?

[00:30:49] Natalia: Yeah, I do. Look at our neighborhood. So we live in a really small city in the suburb outside of Salt Lake called Fruit Heights. And I would say that just our four families that live here probably makes up 90% of the diversity that's in this neighborhood.

[00:31:05] Carla: Yeah. 

[00:31:06]Natalia: Do you know what I mean? And we live in a neighborhood that has lot of healthcare professionals, doctors, and super white collar jobs. Yeah, I think that affects us. Just, these are the people who we're seeing, and most of them are men too. I think why I get along with my nurse practitioner so often is because, not only is she a person of color, she's also a woman. And I feel more comfortable talking to her about my symptoms and stuff than my doctor.  And I just want to be on the record saying that I feel very lucky to have had so much support in comparison to what other people have had. I always think about, what if my mom had breast cancer while she had young kids? Like what kind of support would she have gotten? She's close with her family, she's close with my dad's side of the family, but like, it's not like she could stop working. 

[00:31:53] Carla: Yeah. 

[00:31:54] Natalia: And my dad's  working construction in between jobs and she was the steady income that came in. So I was thinking about like how lucky I am to be a daughter of an immigrant, kind of living the American dream, at least from my parents' perspective of being able to have help and have access to healthcare.

[00:32:12] But I would say that like 75% of my caregiving is from you and your family. Like you guys will watch my kids at a drop of a hat. Your kids mow my lawn. They come walk my dog. You guys have cleaned my house. Like you guys do it all, no questions asked.  So obviously Danny and I and my family are eternally grateful for your existence and for all the help that you've given us over these last four years. Thank you for taking the time to do this with me. I know it's it's weird to be serious with your sister that you're always not so serious with. I know it's like a little uncomfortable for you to be so outspoken and get on a podcast. So thank you. And also thank you for obviously everything that you've done for me during this time. I don't know how, if Danny and I had stayed living in Arizona, how we could have weathered this and continue doing it without you guys. 

[00:33:08] Carla: Yeah it's been good taking care of your kids. I don't think I would have gotten to know them as well as I do if you hadn't been sick. 

[00:33:15] Natalia: After talking to my sister about our own experiences as Latinx patients and caregivers. Naturally, I thought about the other side. How do healthcare professionals deal with the challenges of providing care to minority groups? I wanted to know what physicians were doing to help overcome those barriers, or even find out if physicians are part of the problem. We reached out to an incredible oncologist, Dr. Mabel Mardones. Not only was she able to lend a perspective of an oncologist, but as a Latina physician that specializes in breast cancer. 

[00:33:53]Dr. Mardones:  I am a breast medical oncologist, although of course, as all of us in training, we start out as generalists. And I am board certified in both internal medicine, hematology and medical oncology. I started my experience with all of my training in Loma Linda which is an orthotist, a Christian medical school. It's one of the few in the country located in Southern California. I then moved forward with internal medicine residency, the university of Utah in Salt Lake City, followed by my hematology oncology training in Dallas at the Baylor University medical center, where I spent three years obviously doing what I ultimately have always wanted to do. So I knew very early on, I wanted to be a medical oncologist. And then I practiced general medical oncology for about two years with a U.S. Oncology practice in Fort Worth, and then transitioned my practice due to a family move to Colorado. And I'm now here in the Denver area and have been practicing again, breast medical oncology, a hundred percent of my practice is that, for the last two and a half years going on three years.

[00:35:00] My history with cancer actually started with my grandmother, my maternal grandmother, who is or was, I should say, she has since passed last year in July of 2020. She was a, incredibly inspiring woman, but she was a survivor of gastric cancer. And so I knew obviously from a personal, very close relationship with her, knew what it was like to have been a survivor of a cancer diagnosis and the strength that takes and the struggles that it implies really for the rest of your life once you have been confronted with such a diagnosis. And then, through training, we're exposed to obviously many different specialties early on. And there was a gravitation that was very real for me very early on, I think it must have been even in my very first rounding experience as a second year medical student. And so that, grounded the desires to push forward towards that goal. And there was really nothing else that captured my attention beyond that. 

[00:35:57] My last name of course is very Hispanic. And I pride myself in being able to obviously speak very fluent Spanish and can conduct a full visit in such. And so yes, I always prided myself in being able to serve that population through medical school and beyond. It's interesting now that as I've sub-specialized within a sub-specialty, accessibility of the Latino community to medical oncology is really not as robust as I would like. Especially in the breast cancer field.

[00:36:26] I think the incidence is likely lower in Latinas, in general, and compared to our white counterparts, possibly due to a few factors. It is a clear, known fact that women who are born outside of the United States and then migrate tend to have a process called acculturation where women encounter habits that often are negatively impactful in regards to breast cancer risk. As we acculturate into this Western world, there are obviously lots of changes that happen, particularly in nutritional habits, exercise habits, et cetera. And I don't think it is all truly understood, but that is really where the differences are in that women tend to have a higher incidence when they immigrate into the United States and truly become more part of this culture. 

[00:37:14]There are though general trends in Latinas in that we tend to have pregnancies earlier in our life. We tend to have more parody, so we have more children in general, although are protective factors. And in general, within our culture, breastfeeding is obviously seen as a very important part of who we are and that's generally encouraged and that we know is protective. Where we may be at a higher risk is that women are not seeking care early. And so the data suggests that in Latinas, our diagnosis is found more regionally advanced as opposed to an early stage diagnoses. And that has a few hypotheses of access to medical care. I think that generally compared to non Latina communities, we are not doing as regular mammograms. So that may be something to do with that as well. 

[00:38:07] And then there's debate in regards to subtypes of breast cancer in Latinas. But there is a suggestion, at least more currently, that there is a higher incidence of more aggressive subtypes, particularly in the young women under 50. When you go above 50, then of course  that mirrors that, of the general non white population, which has generally estrogen positive, more luminal type tumors. So in the younger women, particularly those with family history, actually of breast cancer or ovarian cancer in their families. There was an enrichment for triple negative breast cancers. And we all know that those types of tumors are more difficult to treat and have stage by stage, whether white or Latina, they just have a higher incidence of metastatic disease and obviously present at a  more advanced stage in general. So those are some of the factors that I think we're teasing out in regards to some of the differences. 

[00:38:58]Natalia: I asked Dr. Mardones to clarify, does getting pregnant at a younger age reduce the risk of breast cancer? 

[00:39:05]Dr. Mardones: There's hormonal shifts that happen when we become pregnant. And then when we breastfeed and postpartum, there's a clear dip in your estrogen levels overall, and obviously the longer you breastfeed the lower that estrogen environment becomes.  And so it really all has to do with the total exposure of estrogen throughout your lifetime.  Latina women in general, when they become post-menopausal, they're less likely to take on hormone replacement therapy,  as opposed to our white counterparts.

[00:39:34] And also oral contraceptive utilization is another common reason of that concept of acculturation as well. Latina women who are born outside of this country tend to have less accessibility to oral contraceptives.  There's a component to us as well, in regards to our religion. A large proportion of course of Latinas are Catholic. And so we obviously recognize that's a factor in the oral contraceptive utilization as well.  And so women who come here, again, tend to be on oral contraceptives a bit longer. And so all of that contributes to risk. Exogenous estrogen utilization, whether early or later in life. And then again, how early you start your pregnancy experience. 

[00:40:16]Natalia: What are some barriers Latinos or Latinas face in seeking healthcare? 

[00:40:21]Dr. Mardones: I think there's a clear lack of trust in Latinas with the medical community in general.  I don't know where it really, truly, comes from. I think in general it may be latent with the fact that there's a strong language barrier, lack of understanding about our culture in general. What we value maybe slightly different in regards to seeking optimal treatment. And I think relating to someone that we feel that we can trust is everything. Whether you are Latino, whether you're white or whether you're of any race, you have to feel a connection to the person that is ultimately going to treat you and provide you with information about something as important as this diagnosis is. So I think that's one of the barriers is lack of trust. And I think having a relatable healthcare provider that has that understanding. I think probably other factors is just lack of accessibility. In general, a lot of patients don't have medical insurance, they don't know where to seek the help and really where to go. I think those are probably some of the factors. 

[00:41:23] Natalia: Do you think some of those factors also include their documentation in the United States? Whether they feel like they might put themselves at risk?  To seek help? 

[00:41:34]Dr. Mardones: I think probably now more than ever, with where the current climate is, there's just a fear factor of seeking that medical attention and feeling as though they may be deported if they're not legal within this country.

[00:41:46] Natalia:  In my research preparing for this episode, I learned that many Latinx people, even those with access to healthcare will rely on home remedies to combat illnesses, rather than seeing a doctor.  

[00:41:58]Dr. Mardones: I see that actually a lot here in Colorado, as opposed to other places that I've practiced- Texas and even California, at least maybe in the pocket that I practice in California. And I see this in my own family. And my mother who has, if I go to her medical pantry, she has a litany of supplements and no prescription medications. And in truth, I think what is often misunderstood, as a physician who has been trained in the United States, in the traditional fashion, I should say, doesn't practice necessarily integrative medicine.  There's a lot of us, including myself, who has as well a strong interest in the utilization of these agents. And I do believe that they can be quite helpful in certain situations. 

[00:42:43] And I always tell my patients that there's  a strong acceptance on my end  and that I will educate myself alongside them to one, keep them safe through this process and make sure that there's really no interactions with ultimately the treatments that are proven to improve survival. But how can we blend that and integrate it together and making it a priority. And I think that if the Latino community understood that there truly are some of us out there, who can be accepting of these approaches and can do it together in combination. I think that we need to be making it clear that there can be a blend of the two, given the strong interests that I think our particular community has in supplements in general. 

[00:43:26]Even for, as I'm thinking about my Indian population in my practice, they are also more willing to discuss their practices and what they're doing at home. Prime example yesterday, I had a patient who came in with a rash on active adjutant chemotherapy, and she had been applying ashes and she was a bit resistant to share that but knew because she has known me now for various visits, that I was very willing to listen and be open to that. And she shared that that was part of their culture. That they often apply ashes of very different kinds to rashes and skin issues in general. And I said, continue that process, and let me add into that regimen, what I would also do. And so I think that there's, again, a very clear acceptance that it really comes from diversity within healthcare providers. Not just in Hispanic to Hispanic interactions, but it goes beyond that. 

[00:44:20]There was actually just a study that was reported by a very prominent radiation oncologist in the field of diversity here at ASCO. I don't remember all of the details, but essentially it was about symptom management and those patients who are getting active radiation treatments of the breast.  And  there was a clear under-reporting in African-Americans, Hispanics, as opposed to the white counterparts in regards to appropriate treatment and addressing of pain and concerns of the breast. So, it's very interesting, the perceptions that often come with just again, lack of understanding. And reciprocally from the other side, as well, is a trusting relationship. You trust, and you feel comfortable sharing that, and you feel heard. And that's ultimately  what all of us want to feel. We want to be heard, listened to and validated, but it requires that open venue.

[00:45:13]And I think hopefully we can all come together as a healthcare community in addressing these issues. I think going to where people are is probably the best- is finding people where they are. Obviously there's a strong sense of religion and trust in God in our general community. And so I think that, when people go to church or their respective locations, might these be places where we can try to find people and meet them there and say, listen, this is how you can access the medical system, these are the things that are important. I, myself, my father is a minister in a Hispanic community, a hundred percent Spanish speaking. He often will ask me to speak, and there's a tremendous interest once that happens, in regards to women opening up about more than just breast cancer, because again they feel listened to and they feel like they can have accessibility too.

[00:46:02] But I think education is really at the core of that. Really educating patients about the importance of screening, self breast examinations, finding physicians that they can trust. And I think that it's alarming. I think what we're seeing, not only in our African-American populations, but also in Hispanic cultures, that women are not only diagnosed as I mentioned earlier with more advanced stages, but they don't get appropriate care. They don't get evidence-based  guideline therapy.  And that's alarming. What is that a result of? Is it a healthcare provider having certain misconceptions and making tremendous assumptions about what that patient cannot handle?  I often find that patients just simply don't understand. 

[00:46:43] When I've seen patients that come into my practice, either because they didn't have a great connection, let's say, with their previous medical oncologist, the common theme is, I didn't know why I needed to take that medication. I had no idea why that was important. Nobody explained it to me in such a way that I felt convinced that this was something I needed to do. Whereas maybe the healthcare provider may be seeing that as a non-compliant patient, but where was that disconnect? It wasn't because the patient was not compliant. There was a lack of understanding and commitment to that therapy.  I think meeting people where they are and educating in the community is going to be the place where we can start bringing patients into our actual offices and really seeking care early. 

[00:47:29] Natalia: While talking with Dr. Mardones, I revealed that my sister and I were BRCA two positive. I learned that Latinx people are not well-represented in the genetic world. She then explained what Latinx people and doctors can do to advocate for more genetic testing. 

[00:47:46]Dr. Mardones: I have encountered this many times in really all cultures. They feel as though getting any form of genetic testing is providing critical information that may come back and negatively impact them themselves, or as a family, life insurance, et cetera, et cetera.   I think both Hispanics and African-Americans, they're four to five times less likely to undergo genetic testing and 2 to 16% respectively, less likely to discuss these things, even though they may find them with a provider. An offset to that is, also less likely to share it maybe with the rest of their family. So yes, there's a clear underrepresentation in the genetic world.  And so I think that all goes back to the same topic of education. 

[00:48:26] I think that often patients don't know that information has tremendous implications  for the rest of their family in a positive way, not only from a breast cancer perspective,  because obviously it's misunderstood. We're speaking a lot about genetic testing as of late 2018,  when the American society of breast surgeons put out a position paper that all breast cancer patients should be given accessibility to genetic testing.  So since then, there's been a tremendous impetus towards, I have a discussion, a hundred percent of my time with every single patient in my practice  that genetic testing should be encouraged. Not everyone obviously accepts that, but I think if we educated and we speak about the  offshoot effects of what that implies to men in your family as well from prostate, pancreatic cancer perspective, melanoma.

[00:49:14]  And that there are screening tools for many of these cancers and that there will be in the future, potentially in the pancreatic world and even hopefully in the ovarian cancer screening world,  opportunities to potentially have a more optimized screening that obviously could save lives  that we recognize now  obviously include colon, and pap smears, et cetera. Those are prime examples of where we're really doing a phenomenal job with screening.  So I think that that's one of the topics that I think is incredibly important. I can't tell you how many times we've found, a family who has, let's say no family history, looks incredibly unsuspicious. There's lack of genetic pool, maybe in that family. Maybe there's a single child, mother who didn't have any siblings. So when that happens, you still need to be quite suspicious. And I can't tell you how many times we've done genetic testing and have been surprised.  We found, Lynch syndrome, families that may be totally a bit unrelated or moderately penetrant genes that are different than BRC one and two though, that still have tremendous implications for the effected family member and certainly for others. 

[00:50:15] And of course, as you probably well know with BRC two, a BRC one  now there's specific targeted therapies, that can make a tremendous difference in the advanced stage setting, but also in the early stage setting. As we are awaiting, there was a press release not long ago,  on the PARP inhibitors in the maintenance early stage setting now.  And so we believe that there now maybe a signal and a space for those agents now, early on. As we generally do in oncology, we start with a lot of investigation in the more advanced setting, and then try to bring these agents forward. So there's going to be tremendous implications that go beyond that at BRC one and two, as we believe also these agents may be helpful in patients with more moderately penetrant genes, check two or pelvis two mutations, et cetera. 

[00:50:56] So I think that goes back to education.   I think educating even our counterparts outside of the medical oncology community is also incredibly important because that's how patients are often going to reach in these topics that we're discussing, in prevention spaces. They're going to be reaching primary care providers first. They're going to be running into nurse practitioners and PAs, and they need that education. They need to be given the tools of understanding the importance of genetic testing, recognizing high risk families, encouraging that genetic testing. 

[00:51:26]It's really inexcusable these days, obviously the accessibility to genetic testing and how cost-effective it has become as opposed to just three years ago. Where patients, we were talking with them, you know, a couple thousand up to $5,000 for a genetic test, and it wasn't covered by insurance. You were doomed, in regards to having to pay that cost.  You can get a comprehensive genetic panel these days for $250 out of pocket. Again, we need to be educating folks and really letting them know that we're not looking for any other information, there are no negative repercussions, there are protective laws in place. Just for this reason. 

[00:52:01] Natalia: Dr. Mardones weighs in about the lack of Latinx representation in clinical trials and why Latinx patients might be hesitant to participate.

[00:52:11]Dr. Mardones: When it comes to clinical trial enrollment really of all minorities. But in particular Hispanics, obviously we make up 18% of the U.S. population and we're growing, right. We're expected to double within the next two decades in the United States.  But we only represent 5% of participations in national cancer Institute treatment trials. That means 95%  are white patients. We cannot extrapolate effective therapies from a homogeneous group of patients.  And so it is an important topic, I believe, as an active principal investigator in many trials who really prides myself in bringing  to my patients the most current and the most available options in many different spaces, right?

[00:52:55] We're now using clinical trials in the early stage setting, obviously many in the advanced setting. So I think some of the barriers are very similar to many topics we've been discussing so far is a lack of understanding about well, they're just gonna give me placebo, they're just going to give me a sugar pill or they're using me as a Guinea pig. There are many things that I have heard from many minority groups. There's just a lack of understanding about the processes of how clinical trials function, how we go from a preclinical study in the laboratory to then take it to the clinical setting and how the FDA has very specific regulatory processes to really have standards of safety practices to keep everyone safe.

[00:53:37]I think discussing that often, although there are placebo trials, not all studies are placebo based trials, and how we always standardize the arms. And even though there may be a randomization process, you are going to be getting standard of care. And I think that understanding from a physician's perspective, that when I propose a trial to a patient, at least in my practice, I believe in that option, I am committed. And I believe that my patient is not going to be getting inferior care. That's the impetus for everything that we discuss with our patients, they should never be receiving inferior care. It will always be obviously an option for potentially better care. And I think that really is why patients trust the process. 

[00:54:23] It does take time on our end. And I think that's a pitfall of the general climate that we're practicing in. Right? I'm speaking now more from a provider standpoint, but it's a true reality that, I think is important for you all to understand, is that the pressures as a practicing oncologist in this era is challenging, whether that's oncology or other fields. The pressures of insurance payers, the time that it really requires to provide optimal quality care is at stake honestly. And I think it requires everything on us to push those barriers aside and to focus on providing that quality care that inevitably needs time. And so how do you care for those who really demand and need that time of you and how do you offset some of those other responsibilities for maybe our mid-levels to provide the care of those who are doing well?

[00:55:18] The reality in oncology is that the amount of survivors of cancer is growing exponentially more, than ever before. So our clinics are full of not only new diagnoses as the incidence of cancer is growing. Early detection has led to obviously more diagnoses. And then of course we have all of these survivors who are doing wonderful. And even of course, advanced cancer patients such as yourself are a testament to the fact that science is improving. Our patients are living longer, more quality lives, and they're getting more and more options. We're pushing that bar farther and farther. There's a clinical trial option that then comes, there's a next FDA approved agent that then comes.

[00:55:59] And if we can hang longer on a clinical trial option, that's effective, we're going to get something else that'll get approved.  So there's clearly that amount of pressure that one feels, but I think  it's upon us to think of creative ways to be available to those who need us and to provide that quality time. And to then again, offset some of those additional responsibilities in regards to patients who are surviving and doing quite well. And it's a shared responsibility. It's not only from medical oncology, but obviously from other parts of the healthcare community as well.

[00:56:28] Natalia: Dr. Mardones explains that providers are partially to blame for the lack of diversity in clinical trials.

[00:56:34]Dr. Mardones: I think there is a component there of assumptions. We assume that a patient may not understand what a clinical trial is, and they're just going to shoot down our option. And therefore, because again of the pressures that we're talking about time, et cetera, maybe let's not bring it up. Let's not discuss it, because again, we're going to have an indication, our perceived notion that maybe someone else would be more willing to. And that's providing inferior care to our patients, if the data is supporting that, and I think that all comes with what are your beliefs as a healthcare provider too, right? Everyone deserves equal care. Whether minority, whether of any social economic background, because that is actually something that does, I've seen, certainly taint others' experiences. And I think you need to be grounded in your values as a provider and really go back to your oath, right? As a physician who is providing equal high level evidence care to all and accessibility to all.

[00:57:34]Lisa: For more information about clinical trials from the MBC perspective, be sure to check out our two-part series available in your Our MBC Life podcast feed.

[00:57:46] Natalia: From an oncologist perspective, Dr. Mardones provides insight how a person can become a better advocate for themselves. 

[00:57:54]Dr. Mardones: I think you have to know that you have to feel comfortable asking questions, right? This is your journey at the end of the day. And so if you feel that you are rushed, not listened to, stigmatized, any of those things, then you need to seek a different opinion. I tell my patients all of the time, I normalize second opinions to my patients, right? This is again, your journey. If you need to seek a second opinion, please do so. In fact, I'm willing to give you some names and options alternatively, you need to feel comfortable with the team that's caring for you. So ask questions, you deserve the answers. You deserve to know why you're on treatment, how that treatment works. What's the expected outcomes. You need to be discussing prognosis along the way. And you need to feel that your provider is being honest and forthcoming. And that only comes again with a trusting relationship with whoever comes your way. So ask, ask, ask is my best advice. And if you don't get what you feel you need,  seek another opinion.  

[00:58:59] I never take it personal. And I think often patients are surprised. I'll say, it is okay to seek another opinion. It really truly is not about us. We, at the end of the day from our perspective, want to have the same commitment and loyalty for the people that we're caring for as well. So if that is at odds or at stake, it's not a trusting relationship. And it needs to be fostered elsewhere, right? It only works if both parties are just as committed and invested and have that trust. And so it's not personal. That's really at the end of the day. And if it is personal to that particular oncologist, it's not the right relationship. 

[00:59:36]At least in our culture, I don't know about you, but I speak for my mother, as I go with her to seek medical care. She often will not understand something. And she'll say  Yep. And then I asked her later, mom, did you understand what was said? And she'll say no, or I didn't agree with that, but I didn't say it. And I think that's very proper of our culture. As Latinos, we are very non-confrontational, I would say in general. We view healthcare providers as authority figures, because it's how we grow up in our culture, our parents, our grandparents, to be respected, right? 

[01:00:10] Just like a lot of Asian cultures, tremendous amount of respect, whatever they say cannot be questioned. And in so many ways that spills into that relationship with healthcare providers. And although that is important, that is only cemented in grounds of trust. One needs to deserve that trust. And if you're deserving of that trust, then you are someone that obviously that patient then can have an open venue of communication, even if that means along the way, disagreements. Or questions. And questions don't always mean disagreement either. Just because you speak and you ask does not mean that you are again, being disrespectful. It means that you are advocating, as you said, you're advocating for yourself. And at the end of the day, that's what we all want to see for our families, for our loved ones. And it's obviously what, hopefully we can expect from our patients. 

[01:01:06]Natalia: I asked Dr. Mardones, what advice you would give to her own family member being diagnosed with MBC or early stage breast cancer.

[01:01:15]Dr. Mardones:  I would ask the type of cancer, the stage of your cancer, what are the treatment options? What did your medical oncologist say? What did your surgeon say? Is your case going to be discussed in a multidisciplinary fashion? Is your team going to be meeting? That's really standard practice, really should be in community settings or in academic settings.  The care of cancer patients is tremendously complex. I practice breast cancer and one would say gosh, that's easy. You're doing one thing all day, every day. And every case is totally different. It could be a HER 2 positive case, and all 10 patients would be entirely different. 

[01:01:56] And the approach of that patient needs to be different because they come in with comorbidities that are different, because they have issues along the way that is unique to what they have, their stage. It's just, there's so much complexity to cancer care that is impossible to give a one size fits all recommendation to care. So I think that's one of the challenges with questions that often I get. But those are things of some of the general topics, right? That for me, gives me confidence about the quality of care that my family member may be receiving.  Because that tells me that there's communication. If my patients are aware of these topics, right? The basics of that cancer, then I know that they're being educated appropriately. And often I find there's something about, I'm sure you've seen this in support groups, where you are first diagnosed. And I see this because I bring patients back actually for the same reason, I've noticed a trend. I meet patients for the first time often with, pandemic times of course have brought many many challenges to the way we practice oncology, but I obviously include family members either by a zoom meeting or a FaceTime or a phone call for that initial visit. It's very minority of patients who I think  can handle their very first visit entirely on their own. Because there's so much emotion with that first diagnosis. You remember the first you have blank, and we need to do this, et cetera, et cetera. And the rolling of the information that we need to provide. I often feel at odds of how much do I share? How much do I piece meal into different settings? How much does that particular patient need to, and want to know right now, as opposed to layering this along the way. So those are some of the challenges that I think I see.  

[01:03:36] Because there's so much emotion, I have seen patients come back and say, I don't know what you said last time.  I don't remember that you said it was stage three. And so then you realize, wow.  The amount of information that we share is a lot. And I often shared this phrase with my patients because I do think that patients are afraid to ask again. I say, you will be hearing this again, and I will be sharing this multiple times with you along the way, again, to normalize the questions that I know will then come up later. And I think that's an important part of normalizing and understanding the emotional impact that this diagnosis carries beyond that of many others. 

[01:04:18] Natalia: Overcoming the barriers that exists in the Latinx community and access to healthcare is easier said than done.  I started to think about the Latinx community in my own region and who was helping them. I knew that there must be someone fighting the good fight with boots on the ground. There had to be an organization working in educating Latinx people to get the best possible care after a cancer diagnosis. In my search, I found Sara Carbajal. 

[01:04:53]Sara: I am a co-founder of Alliance community services. Alliance community services is a nonprofit organization. And we started this organization with the mission of helping minority communities to increase the quality of life, by making services, education accessible to them. One of our first projects was serving Latina cancer survivors because we find out that there was nothing available for this population in the state of Utah, so we started what we call our first support group for Latina women with breast cancer back in 2002. And ever since then we have this group called Triunfadoras. And we have provided services since 2002 up-to-date. We usually meet the second Tuesday of the month at the hospital, the Intermountain Medical Center.

[01:05:50] And because of COVID right now, we have to make changes and now we're trying to adjust to the new life with the pandemic. So we meet with the group virtually three times a month. So the first, the second and the third Tuesday of the month virtually. And with the group, we work different topics to serve survivors, and education is an important piece of the program. So we are devoted to provide education, at least for the first half of the meeting. And the second half of the meeting, we use it to exchange experiences and provide emotional support with the assistance of professional health providers, such as psychologist and social workers. 

[01:06:35] And the other piece of our cancer programs is the education program for Latina women. So we go around the community, educating Latina women about the importance of early detection and also providing services with resources for women that are uninsured and low income. One of the issues with breast cancer in the Hispanic community is the highest rate of mortality due to the late detection or the latest stages in breast cancer. So we got the mission of trying to reduce this data, at least here in the state of Utah. And that's where education has been an important piece. We call it the Latina education and navigation breast cancer program. Because we just not educate, we also help them to find resources where they can get their screening. And so we work in partnership with the Utah department of health and also with the Intermountain Medical Center to provide resources for women that don't have access or can't afford to have a mammogram. So it's been a great partnership.

[01:07:44] Our support group Triunfadoras. It's very unique not only, because we the only support group available in the state of Utah, but also because it's very diverse. So we serve Latin women from different backgrounds. Different subcultures of  Latin America.  And also women from young survivors to older survivors- from survivors that have been survivors for 20 years or more to those that are just barely been diagnosed. And also survivors in stage one, two, three, four, and at the beginning of the group we were not sure if that was gonna work effectively for the Latinas, just, you know, having a mix different situations with each one of them, but  it worked out perfect.

[01:08:33] In fact, they liked that format of learning from the survivor that has been a survivor for 20 years or learning from the one that is going through treatment right now, because they learn what's new with treatment right now, what's new with medicine. So all the experiences that they have to share are invaluable in the life of the Latinas that face breast cancer or any other type of cancer. 

[01:08:56]It's been interesting to learn from them, all the different things that unfortunately has impacted their health in a not very positive way. For instance, first time they're being diagnosed with cancer, the idea of they're going to die. And sometimes absolutely the technology and treatment and medicine is been so advanced that now the chances of survival are very high. But sometimes because the language barrier, they're not able to ask, what are the chances of survival, and doctors sometimes they don't take the time to explain all those things. 

[01:09:33]Unfortunately, prevention is not something that the Latinas work in a consistent way during their lives. Because we're always thinking that family comes first and we're going to be okay. We want to think that we always going to be okay and strong serving to our children, our husbands, our families. And prevention is something that we delay a lot. This is something that we been educating women because unfortunately going to a health provider is not something that they take the time to educate women and let them know the importance of prevention.

[01:10:14]A lot of our Latino women, lack of insurance is another barrier for them to have access to a health provider.  We are targeting women that are uninsured. And one of the issues that we find is that most of the Latina women don't have a health provider. Not even for a breast clinical exam. And this is the first step for prevention. So in conversations with the department of health, we always bring to the table the issues and barriers that we're learning  working with Latina women. And eventually they modify the program that they have for screening services. 

[01:10:53]One of the requirements for the women to have access to these programs, which is free, the program provides a free mammogram, free ultrasound, if the mammogram is abnormal.  So covers it's about expenses before treatment. And by making this requirement, all the women that get into the program are going to be provided with a help provider.  And by doing this, we intend to make the screening services on regularly basis, which is every year, according to the Utah department of health, they promote the breast cancer screening on annual basis. It varies from state to state, but in Utah, it's been established that it should be every year. 

[01:11:46]Transportation is another issue that our women face. They're not always have transportation to go to the hospital or mammogram for a screening services and  not just the transportation, but also the time. So this is another issue that we've been discussing with the department of health that women sometimes have to work. Especially Latina women, they have to work, and take care of kids. And sometimes they don't have time for themselves. And screening business hours usually where like  nine to five. What was happening, Latina women gets home after five, after they're done with work. And having a screening was almost impossible because during the week the  schedules were so different and there was no screening  services during the weekends. 

[01:12:36] But luckily a couple of years ago, that changed as well. So now there's appointments available Saturdays. And the screening services have gone wider statewide. Now they're mobile services where they can go to locations where it's more likely that women will have access to go to the hospital. And that is solving a lot of the problems. Back in 2018, we learned from the Utah department of health that 74%  of the women that were receiving mammogram screenings in the Salt Lake Valley through the department of health we're Latinos, 74%. So that was a huge number and to me it was the results of all the work that is being done with the Latina women all those years. 

[01:13:24]When we first started this program back in 2002, it was hard to go around the community and trying to talk about breast cancer. It was like a  topic that was prohibited. So we started from zero and trying to gain the trust of the community, first of all, so they would let us go to their group of church, schools, friends, and address the importance of breast cancer health. And over the years now, I can tell you, Latina women are feeling more comfortable speaking about breast cancer and speaking about their own breast health. Which I think is fantastic because sometimes they have concerns, but they don't dare to ask anybody, because this is so intimate and so personal for women. 

[01:14:14]They won't talk about this to anybody, and yet by existing as a support group and having these cancer program and working with the community for almost 20 years, now we get phone calls from women that are concerned about things, or they have a question about breast health and they feel more comfortable asking. And this is part of what we wanted to accomplish. We want a woman to feel comfortable with their bodies, feel comfortable  asking questions about their health, and feel comfortable going to a cell provider and have regular checkups for breast cancer prevention. And we know that breast cancer is the number one cause of death among Latina women in the United States.

[01:14:57]Natalia: When you first started support groups, do you find some people resistant to either getting support or talking about their condition?

[01:15:08] Sara: Yes. Yes. For sure. We started the support group with eight survivors, and now we have identified almost 600 survivors throughout the years.  Alliance committee services has the largest network of Latina cancer survivors in the state of Utah. And that is because the education that we've been doing throughout the years.

[01:15:31] So when we first started the group, there were women that will come to the group and they even said Oh, I have a friend that is going through this and that. And so we're like she can give us a call or we can refer to the specialist, and with more confidence and knowing each other better, we ultimately find that there was not a friend that was her, but they didn't feel comfortable sharing personal experience so that they would put it in somebody else's name. We talk to survivors for first time and we tell them about the support group services, they're kinda l ike I don't need a support group. I don't want to go to a group where I'm going to listen to another women having the same or worse problems than me. I don't want to go and see women crying. I don't want to go and heard sad stories.  

[01:16:19] And what they don't know is, it's been proven scientifically that a survivor that attends a support group has a better chance  of heal from the illness or the treatment will be more effective. And once they go to the group and they realize that it's not just a forum where they can hear other women, but they can share with other women. And that is healing. Being able to share about your experience and even crying. If you have to cry it's a space that it has been created for them where they can feel free to say, to cry, to talk, to ask. And the beauty of the Triunfadoras is that we do everything in our own language. Even the providers that we invited, we tried to look for health providers that come and educate us in Spanish. So they feel comfortable about them. 

[01:17:10]Natalia:  I don't think people understand that there's a disconnect and a vulnerability that's missed if you cannot express how you feel in your own language. 

[01:17:20] Sara: Exactly. And sometimes they don't feel understood in their own homes. Like they want to say sometimes you know what I'm feeling like I just don't want to get up from bed. I feel so tired, I feel in pain, or any of the side effects that they might face with the treatment. And they've been told several times from families, just don't think about it, you're going to be okay, just don't think about it. And this is so disencouraging for a survivor because  the only ones that know what they're going through emotionally and physically. And so families, of course, that's a mechanism of survivorship as well, thinking that their loved one is going to be okay. And it has to feel okay because who likes to see their mom being sick or their wife, or they don't want to seem sick. 

[01:18:10] Cause we're always as strong, right? Latinas. We're always strong and we're always the first ones  attending the needs of our families and all the sudden we're not there. So families, kids don't like that. And so they almost demand from the person to be okay. And that is not okay because they have the right to leave into grief for their diagnosis as well. And that's where the support group comes very handy. And this is where Latinas, the least thing you get in our group are tears. They're so cheerful, they're very supportive to each other. And that group over the years has become more than a group of fraternity. Because there's well understanding of each other, there's good friendships, and support to each other. So I would say that's what they're going to find in this support group. 

[01:19:00] Natalia: Latina women are perceived as being strong, determined, hardworking matriarchs of their family. So I think it hits on point in what you're saying. It's hard to feel those vulnerable feelings or to suggest, or to admit them because there's a stigma out there that we don't want to talk about our problems to other people. And especially when we're from immigrant families, their whole lives already involved in survivorship. Put breast cancer aside, they're already doing things to survive. So this is just another thing on their plate that they're also taking on, but that's less talked about.

[01:19:43]Sara: Yep. That's correct. As I said earlier, cancer is cancer. And it hits anybody probably the same way, diagnosed like that. However, Latinas face a more challenges along with the diagnostic. And I mentioned some of those challenges already. And there's women that are all by themselves here in this country, and going through treatment alone is just- it's just no, no fair. It's just not right. And the vision of our program is that no one should face cancer alone. And unfortunately, in the case of our Latino women, it happens a lot because they're just here by themselves with no family. So it's very hard. But it's a community that is very resilient. 

[01:20:31] And especially, I would say Latina woman, they're so tough. They're so strong. I've seen women going through treatment and feeling really sick, but they have to go to work because they have to pay the bills for the treatment or they have to put food on the table and they have to pay rent and they don't have a choice. They're so resilient. They're so strong. They're so tough that really, they leave aside what they're going through, the pain and the sorrow and everything, because they have to go to work. And somehow it helps, it's part of the treatment that they get distracted and they keep trying to get the normal life.

[01:21:09] But one thing we need to remember is also we have the right to take the time for ourselves. That we feel sick, that we need to take care of our bodies. That if we feel like we want to talk to somebody, we need to look for the assistance. Create your support system, whether it is with the Triunfadora support group, whether it's with a group of friends, whether it is with the family.

[01:21:31]Natalia: Do you find that in the Triunfadoras that there are a lot of cases of people with metastatic or stage four breast cancer? 

[01:21:40]Sara: We've been trying to identified all those women in order to provide services. And so we have gone to the Utah cancer registry to see what  data  they have, besides the data that we have as a group. And we find out that we have identified so many more Latinas with metastatic breast cancer, than the Utah cancer registry. However, I believe that we haven't identified not even close what there is in reality in the community. And I think one of the reasons, number one, we are located in Salt Lake City and we know there's a lot of women that are facing breast cancer in other counties.

[01:22:25] The other reason is a lot of times with stage four, they might get very healed. As we all know, it depends of the stage, the treatment can be more tough on a patient. So that's the other reason why it's important to detect cancer in earliest stages. One of the reasons is that so treatment is no so hard on your body. So sometimes they get so ill that they're not able to reach out to anybody. And within the group, we have another program that is called Entre Amigas, among friends. And the mission of this program is to provide visits to survivors, especially with the stage four where their health is so fragile that they're not able to attend a support group. And we don't want these women to be alone. And we don't want these women to miss out information that can be important for them or services that can be important for them. So we provide visits to these women. Right now with the pandemic, of course, we're not able to do that. We are limited to make phone calls and video calls with them to provide support. But in the past we visit them. 

[01:23:38]Locally, I want to think there's not that many stage four Latina survivors, but in reality, I would say, we don't know. We don't know. And the official data, like with the Utah cancer registry, doesn't show those numbers either. So it's something that we need to work on just to help these women and identify where they are. And so in the case of the Latinas, sometimes there's this stigma as well, that survivors are only older people, so they might think also what am I going to do with a group where maybe they're all older and they're not going to understand what I'm going through, but surprisingly there are several young Latino survivors. 

[01:24:23] About a stage four, we don't know much. Sometimes they don't like to talk about that either. They don't want  to mention they're stage four because they believe that stage four, it's a deadly diagnosis. But as I said, medicine's so advanced, we've seen survivors living with the stage four for years   and now it's getting better and better for treatments. So yeah, we invite women just to open their minds and their hearts to receive assistance. Doesn't matter what stage is, medicine is wonderful. We live in these amazing times now where medicine is able to do so much there's so many options to do heal your body and your mind and your heart. And yeah, we hope to reach out for more women with a stage four. 

[01:25:10]Natalia: Sara and I talk about why in the Latinx culture, the possibility of a cancer progression is rarely discussed when someone is diagnosed at an early stage. She explains why talking about MBC and progression can be considered taboo.

[01:25:25]Sara: You don't want to think about the fact that cancer can come back. And nobody,  not even family wants to hear that ever. However, there's the possibility. And one thing that I think the support group helps women is to be prepared. Not to think about it all the time, but to be prepared. By taking care of your health, by survivorship, actions that you need to take, get your regular screenings, go and see your doctor when you should,  your nutrition, physical activity,  to do all those things that can reduce the chances for the cancer to come back. So that's something that we work in the support group. 

[01:26:04] And another thing that we encourage women to see life and enjoy life like one day at a time. Me personally, I'm not a survivor, but by working with them all those years and being friends with them, one thing I've learned from all of you is your courage for life. You love for life and for your family. And that you live one day at a time and enjoy it at the fullest every day. And I think that's a philosophy that everybody should learn from people that has- their health is so fragile and is so compromised that we shouldn't take things for granted and just enjoy life one day at a time. That's the biggest lesson I've learned from all of you. And I take it with me my whole life.  

[01:26:54] Natalia: As a healthcare advocate for Latinas, what do you think doctors or healthcare providers can be doing differently when they have Latino patients? 

[01:27:04]Sara: One thing that we advocate for the Latina survivors is number one that health providers can be more culturally sensitive. With not just the Latinas but with any other diverse background patient, because, it's very important to know how your patients think and feel. For Latinas, for instance, doctors mean a lot. You literally put your life in their hands and therefore you trust them so much. And so I wish doctors would understand that and take the time to talk to their patients, to explain what they're going through with their treatments. There's a lot of women that don't even know what stage of cancer they are. They don't even know what type of cancer they are. 

[01:27:50] Because when doctors see that there's a language barrier, that there's no insurance available for these women, it's like why are we even going to bother to explain and tell them?  So I wish they could understand that and make all these services equally accessible for all the survivors. Because like I said, cancer is cancer. And no matter who you are or where are you coming from, it's going to hit you the exact same way. And unfortunately they're not referred to services that can help them. So that's one of the things that we advocate with the healthcare system to be more sensitive and to make services more equally accessible for everybody.

[01:28:30]Natalia:  Honestly, it just sounds like what we're asking for is, just give us the standard care that you give everyone else, but find a way to communicate with these communities, that same standard of care. 

[01:28:43] Sara: Yes. And Natalia, with that, I would like to take just a minute to tell the community, find ways to get your health insurance, whether it's through a private insurance or the public insurance that the state provides. There's so many ways to be able to be covered and take care of your health. So we help out women with that as well. If you have any questions, if you want to find out the ways that you might qualify to have access to health insurance, please do so. I think nowadays with the pandemic as well, we see how fragile life is and how important it is to remain healthy. And I think that's all we need to move on and to enjoy our lives, trying to be healthy. Health insurance, nutrition, physical activity, it can be in our power to do something.

[01:29:34]Natalia: So our podcast   formed during the time of COVID. And we've been asking all of our guests what have you been doing, for your own self care mental health during this time? 

[01:29:44]Carla:  I do like to walk. You'll often find me if the weather's good, even if it's not too bad, I'll go for walks and we lived right next to the mountain. The hikes, I think, are really important to me. I'd never listened to podcasts until the pandemic hit. And so I would walk and listen to the podcasts and I loved it. So ever since then, I've listened to podcasts all the time. But walking, just getting outside, I have to be outside. I do make sure I take at least a 30 minute to one hour nap. I have to, in order to function the evening for my kids. I've got teenagers that are coming home between 11 and 12, and I won't go to bed until they're home. But then you have to wake up at five in the morning and get things ready for them to go to school. 

[01:30:22]So I think it's important to take that mental care. Yeah. Time for yourself. And I know not every woman has that option, I don't work full-time I work about 15 hours a week, but those moms that work full time and are still going home and taking care of their families,   I have so much respect for them. I don't know how they do it. Cause I have very little energy just for 15 hours that I do work. 

[01:30:40] Dr. Mardones: I think is giving myself grace knowing that it's okay to feel the pressure, to feel what it's like to obviously have patients with tremendous degree of implications, to a diagnosis to have to share bad news during a pandemic. And to feel, is what I tell my patients too, it's okay to feel. Feel what this means. And then let's do something about it. And it has applications to many of us in different arenas of real life. So I ground myself by taking time away from my practice whenever I need to, whether that is to be with my children. My children ground me. I think that there's really nothing about the simplicity of children and seeing their world through their eyes as they grow. And their world becomes what they want it to be is something that's very grounding for me. So the quality time with my children is how I have processed a lot of this.

[01:31:35] I think time to spend in nature is for me, a very spiritual environment for me. And so anytime that I can get on weekends, even through this winter time to spend time with my children and go out in nature, we do. And then having people that you feel you can trust and share all without having to think about what you're saying many times, it's very healthy.  I'm obviously lucky enough to have a couple of those individuals in my life who I can often say nothing, or I can say what I truly feel without having to process and engineer the words or that information in a way that I think needs to be captured, et cetera, because I do that all the time all day.

[01:32:21]  Sara:  I think on a certain level, we all going through mental damage with this pandemic. What do I do? Okay. I have kids. So something that helps me with my mental health is trying to enjoy my kids. And do things with them. I like to go to the outdoors. I like to go and take hikes in the mountain because I feel like I'm safe in those areas. And I feel like I'm grateful for having all these beautiful green mountains areas that I enjoyed a lot. Another thing that helps me a lot is to keep myself busy. I enjoy a lot doing service. I love my work. And so I feel like trying to do my best at work and keep myself busy serving others the level that I can, it's been good as well. 

[01:33:11] Lisa: This podcast is produced by me, Lisa Laudico and our truly amazing team of Bob DeVito, Dar Finkelstein, Natalia Green, Victoria Goldberg, Ellen Landsberger, Sheila McGlown, Reilly Starr and Anne Woodward. Our executive producer is Christine Benjamin, the senior director of patient services and education at Share Cancer Support.

[01:33:38] Our senior intern is Sarah Mann, who has been so instrumental to the production of our season two episodes, including this one. And we are also supported by our terrific interns, Angelica Alberstadt, Emily Lewis, Samantha Silverstein and Amy Tedeschi. We continue to benefit from expert social media consulting from Jake Amorelli and sound design and original music composition from Jim Kremens.

[01:34:06] You can find more episodes of Our MBC Life wherever you get your podcasts. Be sure to subscribe, rate and review us and look for a new episode every second Monday, check out our blog and full episode notes on our website at OurMBCLife.org. We'd love to hear from you.