Interview with Maria Montoya, Patient Advocate and #CancerInsider

Interview with Maria Montoya

Excerpt before intro song:  [00:00:00] Leah: and one thing I wanna say that was so great about you during treatment is you did your homework.

[00:00:05] Maria: Mm-hmm.

[00:00:06] Leah: So you, for you were, like you, you knew you would come back with great questions and you know, like you were a very informed patient

[00:00:16] Maria: Yeah. And even then,

[00:00:18] Leah: Even then

[00:00:19] Maria: then,

[00:00:20] Leah: no, I got

[00:00:21] Maria: yep,

[00:00:21] Leah: got

[00:00:22] Maria: I got this. I know what to expect. 

I know what questions to ask, like I'm prepared. But again, I. It's only in hindsight that I'm able to stop and ask why would, why, why did I do that? And the, the raw and vulnerable answer is because the pain of acknowledging that I was a cancer patient was too much

It was too much and it was easier to be like, I'm fine, I'm fine, I'm fine, I'm fine, I'm fine. I got this. I just, you know, like I said, just gotta go take the car into the shop and get this done and over with. It's much easier to operate from that space than to accept that I was a cancer patient. ​

 my guest today is Maria Montoya, and I have all of these things that I could say about you, but I think the one I wanna say the upfront is that you are my friend.

And I'm so grateful that our paths crossed, albeit, uh, in the most, um. Not only unlikely, but perhaps undesirable of circumstances, but I gained some friends from it, and for that, I'm forever grateful. Mm-hmm. 

[00:02:06] Leah: I was working with this one oncologist and you were a patient.

[00:02:14] Maria: That's true, and she's allowed to say that she's not violating HIPAA because I'm 100% okay with her saying that.

[00:02:21] Leah: And also, and also, you know what, when you went to a different oncologist, you said, now that you're no longer my doctor, can we be

[00:02:33] Maria: Yes, 100%.

[00:02:35] Leah: me to be your

[00:02:36] Maria: Yes.

[00:02:37] Leah: oh my God.

[00:02:38] Maria: Yes, please.

[00:02:39] Leah: thing ever. Please, can I be your friend?

[00:02:42] Maria: Like, can we be friends, please? Yeah, yeah,

[00:02:46] Leah: So, um, yeah, so that's, that, that's kind of like the thing that brought us together.

[00:02:53] Maria: it is. 

Yeah. So, um, I am a two time breast cancer survivor. Hooray. However, the first time I was diagnosed at 30, the second time I was diagnosed was at 37. Um, and it was through that second diagnosis that I was prompted to a figure out why is it that in my thirties I've gotten cancer twice? 'cause that seems incredibly unusual.

 and, uh, came to learn that I have a Li Fraumeni Syndrome, which is an incredibly rare genetic predisposition to different cancers, but I was fortunate enough both times to catch it very, very early. and through these experiences over time. not only of course, experienced, um, the credible providers that I've had the pleasure of crossing paths with, um, but also experienced the systems that we exist within and, came to find those gaps within the systems and wants to, solve them.

So, uh, I think maybe the most, Challenging gap and the one that spurred my now cancer advocacy journey was, you know, back in 2013, a genetic or multi-panel genetic testing was not widely available and it was still. Early in the development of genetic testing and consequently expensive. And so when you're 30 years old and you're wondering, how the heck did I get cancer?

And you're staring at your family history going, well, there's a lot of cancer in my family history. Hmm. Um, you can't help but wants to ask for genetic testing. So, when I had that option, it was still very limited. I only I think, had BRCA testing. Um, and after BRCA testing thought, okay, well I don't have.

Breast cancer genes. So that's it, right? Wrong clearly. Um, but in my mind it was the, that kind of systemic failure, that leads me to want to solve similar gaps for other people because had I known what I know now about my genes, about my risk, I wouldn't have made some treatment decisions along the way that may or may not have contributed to cancer.

Number two, who knows, but certainly would've done things differently had I known better.

[00:05:11] Leah: So you said that you had a family history of cancer. It, it wasn't just breast

[00:05:16] Maria: Correct, correct. So, while there is a ton of breast cancer in, um, my family history, there's also prostate and leukemia and liver and lung, which is a really. Odd assortment of cancers when you look at them altogether. Um, because it's not usually when there's a genetic predisposition, you see kind of clusters of various organs or parts of the body, um, that are affected.

 but for Li Fraumeni Syndrome, just because it is the quote unquote guardian of the genome, it can predispose you to just about any cancer. And while there are some. Li Fraumeni Syndrome kind of signature cancers, if you will. They're still all over the place. Right? They still include, um, you know, all of the things that I just mentioned in, in addition to, you know, sarcomas or, I know that there's a, like a, I can never remember the name of it, but it's a neuro based one.

Um, there's also, I think a adrenal, adrenal cortico. Is that a type of tumor? I think, anyway, all over the place is my point.

[00:06:20] Leah: And um, you, before we started recording, you said that you follow up twice a year with your oncologist because you are at this increased risk

[00:06:29] Maria: Yes, yes indeed. And, I have really comprehensive screening, uh, as a result. So I'm seen by two different types of oncologists. I'm seen by my breast oncologist, who is a. Overall managing my survivorship, but I'm also seen by, um, she's technically a sarcoma specialist, but she also has a genetics lab because she has seen so many Li Fraumeni and lynch syndrome patients, of which, for which sarcomas are, are really common.

And so, um. I have incredibly comprehensive screening from, things like whole body MRIs, to like full dermatological, uh, workup in addition to some other things. Um, but they're together quarterbacking my care to make sure I'm kind of covered, you know, toe toes, toes to my nose.

[00:07:18] Leah: Snoot to tail or something like that.

[00:07:20] Maria: Exactly. S to tail.

[00:07:24] Leah: really want you to talk about, um, like what. You kind of hinted as to, you know, what brought you towards, like where you are now,

[00:07:32] Maria: Mm-hmm.

[00:07:33] Leah: advocacy part, what was your experience going through cancer the first time

[00:07:40] Maria: Yeah.

[00:07:41] Leah: later the second time that, you know, kind of really, I don't wanna say, pushed you towards this career path?

[00:07:48] Maria: Yeah. Great question. So it's, it's so many things. I don't know that I can point toward any one experience, but I can give you a few and we can dive into any one of those and figure out which makes sense to unpack. So things like, um, fertility and family planning. I wish I would've had way more guidance than I had at the time.

I was notified that I would need chemotherapy the day before my, um, exchange, implant exchange surgery was about to happen. And so it was this very rushed delivery of, Hey, I'm so sorry that we're interrupting your, you know, breast appointment, we needed to tell you that you're gonna need chemotherapy and we're coming in here with such urgency because, you know, if that's something that we need to get started and start planning for, especially as it relates to your surgery, you need to make a decision now about like fertility preservation.

And so I was like, um, and in the moment I made the best decision that I could with the information that I had. In hindsight, I really wrestled with the fact that I was pushed into that. Decision. Um, and I mean, pushed feels like an overstatement, but the timing of that, of that information was not great.

And so, That never quite sat right with me. And that was one of those things where I'm like, you know what? As a, as a 30-year-old, you'd think that at point of diagnosis they would be telling me about, you know, having these conversa, even if they thought I didn't need chemo. Even if I would never need chemo, you'd think that at point of diagnosis this would be on the table, but that it didn't come up until that point in time.

And so, came to find, uh, through, some of the studying I'm doing right now for my, uh, master's of social work, uh, is that, when you look at research around who gets. Fertility counseling. More often than not, um, black and brown women get it at a far less frequent rate by comparison to white women, right?

And so you see these moments of systemic racism. I do not by any means believe it was intentional, right? I do think that. My care team did the best that they can with the information that they had at the time that, that this was a matter of, you know, scheduling and circumstance, but you can't help but look at that data and go, dang it, why didn't somebody have this conversation with me sooner?

 Like I love the fact that everything moved quickly except in this circumstance, right? Where, and it, and it wasn't even necessarily about getting pathology back because in my case, we didn't think I was gonna need chemotherapy because it was such early stage and, you know, I opted for a mastectomy versus, um, going the lumpectomy radiation route.

 but. It was the Oncotype testing, which does take time, right? That takes about two to three weeks to come back. And it was just, once again, the timing of when we got results back from that lab, which I understand are external. Um. That it just, it worked out poorly. so that's like one example of a, a systemic gap that I look at and say, why didn't this conversation happen sooner?

[00:10:46] Leah: Right.

[00:10:47] Maria: thing with genetic testing, even if, I know that multi-gene panels existed at the time, and I do remember somebody saying, well, you could have a more comprehensive genetic test. But you know, you'd have to pay for it outta pocket because insurance won't cover it quite yet. And at that point in time, I mean, if I was working an hourly job, like, you know, we're just kind of living, uh, the best that we could.

I didn't have $4,000 right. To pay for this genetic testing. Um, and so I just went, yeah, you know, I'm probably fine. Like,

[00:11:18] Leah: Right,

[00:11:19] Maria: whereas had somebody said like, Hey, here are resources to organizations that might be able to help cover cost or things like that, that would've been immensely helpful. But you don't know what you don't know.

And often you don't learn it until it's in hindsight. And so that's another example where I go, man, I wish somebody just would've pointed me in the right direction to say, here's an organization that might be able to help. Because again, had I known about my Li Fraumeni syndrome sooner, I absolutely would've made different decisions as it related to, say, ongoing, um, uh, hormone based therapy or, you know, hormone blocking therapy.

Um, but you live, you learn.

[00:12:03] Leah: so those were a couple of experiences that, you know, you found. Were areas that could use improvement in the cancer system. Um, when you were diagnosed the second

[00:12:17] Maria: Mm-hmm.

[00:12:18] Leah: , That was a completely different set of circumstances that were one of those people that went through treatment during COVID.

[00:12:26] Maria: Yes. Um, and that experience was harrowing, um, for many reasons. when you have no immune system and it's April or May of 2020 where there's no vaccine, where we haven't even hit the peak of COVID yet, but we knew that, hospital beds were scarce. It was a completely different situation to walk into because the pandemic alone.

I think when you couple that with. Knowing what treatment's going to be like and feel like There's also just kind of a different sense, I think I went through treatment the first time, like the way somebody takes their car in for an oil change. Meaning it's like, you know what, this is a knowing chore that I have to do, but I gotta get it done.

So here we go. As opposed to I am entering a potentially life-threatening situation. I really, um, underestimated. What the gravity of not having an immune system would be like. and so even in 2013, I had been hospitalized because I'd become neutropenic, think I think twice, and then

[00:13:32] Leah: I remember

[00:13:33] Maria: Uhhuh. It was, had had a party in my hospital room.

It was great, which maybe you shouldn't do when you don't have an immune system, but sorry for another. Um, so, but in 2020, having full understanding of what it means to be neutropenic, what it means to not, not have an immune system, what it means to really be left defenseless. Um, when I did end up having neutropenia again, or being neutropenic again, due to sepsis, it was harrowing.

 And, um, you know, I recall going to the hospital and it being very, this really scary balance of like, oh my gosh, I really hope I'm coming out of here because I don't know whether or not I am. but also like my husband and kids are in the car and like have to like, kiss them and say goodbye as though like they're dropping me off for school.

Right? Like, it's this like awkward balance of like. Love you. Bye. Hope I see you. Um, and then, you know, walking into the ed, And going from there. So it was a trip. but I think in the, the isolation of that, in the, because it was a very isolating experience, right? You can't have visitors, you can't have family.

You're kind of left to the service of again, right? That the system that you're entering, having that incredibly isolating experience was also another moment where I thought like, there's there. Gotta be a better way by which we're showing up for people, especially, psychologically, emotionally, in terms of their own mental health, et cetera.

now granted, you know, again, things were crazy within healthcare systems at the time, and I completely have empathy for that. Um, and it really stunk being a cancer patient in April, may, you know, that whole summer of 2020.

[00:15:24] Leah: Yeah. And especially because you did, were neutropenic, you had sepsis and then throw on the whole COVID unknown. I mean, we were still figuring things out at that time.

[00:15:38] Maria: Yeah,

[00:15:39] Leah: And yeah, I mean, that must've been really scary.

[00:15:42] Maria: it was, uh, when I reflect back at that time, um, and I think about. Again, all of those little like systems moments where you go like, how, how could this have been prevented or better? I didn't actually know I had sepsis until after I was admitted inpatient, like in the ed. They didn't tell me that I had, that.

I was septic

[00:16:10] Leah: they just said they were gonna

[00:16:11] Maria: uhhuh, uhhuh. And they more or less were like, so you've got an infection. Um. You know, you've got a choice. You know, you could stay here, we could admit you, we'd have you on a pretty intense course of antibiotics. but you know, there's risk with keeping you here or you know, we could essentially prescribe something and you can go home.

But there's risk in that too, right? But they're like, choice is yours. I'm like, thanks. Um, but again, they're having me make this choice without being fully informed of what is it that I'm being treated for. And so. I just said like, you know what, I'd rather just stay here because if something does go awry, like at least I'm already in the hospital.

[00:16:53] Leah: Right.

[00:16:54] Maria: and it wasn't again until after I was moved to my inpatient room. and doctors, you know, were going through my chart or not. The doctor, the nurse was going through my chart and asking questions and she's like, okay, you know, okay, I see this, you know, blah, blah, blah, blah, blah, sepsis blah. And I was like, wait, wait, excuse me.

Like, rewind. And I was like.

[00:17:12] Leah: I know that word.

[00:17:13] Maria: I was like, did, did you just say I had sepsis? And she's like, oh yeah. I'm like, cool. So again, that like not great communication where imagine I made a different choice. Imagine I opted to go home and I went home without the information that I was being treated for a systemic infection.

Like that's the kind of, kind of a big deal. Um, there you are.

[00:17:42] Leah: And so this brings us to today I'm just like, I'm really like, like not being told that you have sepsis and giving the option of going home. And then like my mind is just going like. If something happened and ambulance was called, would they be able to get there? And I mean, like.

[00:18:02] Maria: Yes. And what's, what's even more bananas before this layout, when I was, when I, you know, popped my fever. 'cause you know, you get a fever, you call your oncologist and they tell you what to do. I was at a different cancer center that I will not name.

but, I called my oncologist's office and they're like, well, you know. What's your fever? And I told them, and they're like, well, you know, that's not so bad. Like, call us back when it reaches like 1 0 1 5. I'm like, okay. So when it inevitably like reaches and then passes, they're like, well, you know, you've got some options.

You know, again, with the, you could stay home or you could go to the ed.

[00:18:41] Leah: So you're calling the nurse navigator line

[00:18:44] Maria: Uh, yes, the, the equivalent of exactly. But I do end up talking to my oncologist directly and he's the one saying, you know, you can go to the ED or you can stay at home, like choice is yours. And I'm over here thinking, especially after my experiences with neutropenia before, like I know this is a medical emergency.

I know that. We don't have any information about what infection this is. So like why are we airing on the side of caution again, context is 2020. They're trying to keep people, especially those of us without an immune system out of hospitals because they don't want us to get any sicker. Um, but I hated that he essentially put that in my hands to be like, well.

[00:19:25] Leah: Give me four years to go to medical school. I'll come back with an answer for

[00:19:28] Maria: Exactly. So I just,

[00:19:29] Leah: Yeah.

[00:19:30] Maria: on the side of what I felt was caution. and I remember going to the hospital with like a respirator that was also covered with like a surgical mask that was covered with like a cloth so that I could just like hyper protect myself. Uh, without, you know, just not knowing what we didn't know.

 and even being in the ED and having the, emergency medicine doctor come in and he's quite literally wearing a gas mask, like full on like face cover, like crazy double respirators on the side, gas mask, uh, and feeling like, all right, yeah, this is, this, this is fine. This is.

It was a trip. Um, but yeah, in those moments, again, wondering like how is it that we're leaving patients so out of the loop in these circumstances, how is it that we're leaving patients so isolated in these circumstances? Again, it was just a very isolating moment. Um, and, and, and how is it that I am here, you know, in this hospital bed, navigating all of these things when.

Dang it. I wish I would've had better information sooner. So that really inspired me to get into advocacy, uh, cancer advocacy. and it's been, it really has been quite the journey since.

[00:20:45] Leah: So you are currently working on your Master's of

[00:20:48] Maria: Mm-hmm.

[00:20:49] Leah: And you are like, looking at your bio. I mean, you are just doing volunteer work. you're acting as a mentor. I mean, you are, you just, you're Maria, so you just die full.

[00:21:04] Maria: I full in headfirst. I am all in. I am all in indeed. So, so I'm a very curious person and, my curiosity paired with my. If you want something done, you've gotta do it yourself ness kind of have, have coalesced to lead me on this crazy journey. So, um, I did a complete career pivot, so it was pri previously in like organizational and talent development.

Was doing management consulting for organizations, startups was great. but ultimately, frankly, just not as meaningful for me. and because I have this genetic predisposition, because I know my risk is higher by comparison to, to other folks, um, I do feel like my time on this planet is. I mean, everybody's time on this planet is precious.

I just feel like maybe I hear that clock ticking a little louder than most people do. And so I asked myself, okay, well if my time is scarce, what am I gonna do with it? And what's going to be meaningful for me? And so that is kind of what brought me to, to social work. initially thought I was going to be a therapist for folks impacted by cancer.

Um, but in typical Maria fashion, I, I just find learning and education like a buffet of delicious choice where I just wanna learn it all. and so as I've been taking different classes, I'm finding myself gravitating more and more towards systemic challenges. And so while I have gotten into cancer advocacy and in mentorship and peer support and, you know, group facilitation and doing these things, I've come to recognize, you know, I can help people out one-on-one with.

Out needing an MSW to do that. Like I can, I can still show up for other people in terms of walking alongside them in their journey. I don't need a degree for that. I don't need to be a therapist for that. I don't need to, to d, you know, use a diagnostic manual. That not what I'm here for. Not here to diagnose people.

I'm here to help people. So if I can get my one-on-one, yay yas out, so to speak, in terms of supporting people. Where then can I leverage the education that I'm gaining in order to solve some of the problems that I've experienced along the way and some of the problems that I've heard other people experience along the way.

So, case in point, um, I have a, a dear friend who I've met through various cancer networks who, had a very clear dimple on her chest, very clear, and her care team at the time. Refused imaging because it wasn't palpable. They're like, well, we can't feel anything, so it must be nothing. It must be nothing.

It must be nothing. At the time, I wanna say she was in her thirties, maybe early mid thirties. and of course when she was inevitably diagnosed, it was stage three because. Nobody was listening to her when she was saying there is something clearly wrong. Now, here's the thing, like we hear this all the time in, in cancer advocacy groups, especially those who are adolescent young adults in that a YA space, it's the nobody listened to me and no one, nobody listened to me, which is heartbreaking in like by itself and her particular case or instance, she already had a previous history of different cancers.

So the fact that. There's like this huge red flag on her chest that says something ain't right. Um, for them to have waited so long to get the imaging that she needed to diagnose her sooner is heartbreaking. And it was only then that after, I think it was her third or fourth cancer, third or fourth cancer, that she was given genetic testing that she found out she was, that she was BRCA positive And so again, gaps in care. So that, that's what brings me here.

[00:24:56] Leah: What you're doing now or what you're pursuing now is kind of a perfect meld of what you were doing before.

[00:25:03] Maria: Yeah, it, it is, and it's, it's really just kind of dawning on me, which is funny. So, so much of what I did in like organizational and talent development is look at. You know, what's the problem to be solved or the thing to be accomplished, or whatever the case may be. Um, who are all the people that we need to pull together to do that, and how do we create kind of a shared understanding of what it takes in order to drive that particular outcome?

And then you create change management processes and execute accordingly what I'm learning. So I've started kind of just. Barely, I, I can't even say scratching the surface. I feel like I'm looking at the surface for the very first time, um, at system science and implementation science and, you know, asking myself, you know, how, how do the gaps that an individual experience.

Kind of exist within a broader system. and what are all the kind of barriers and facilitators of care within that system, but also how can we get better at bringing interventions? You know, in, into the chat, so to speak, sooner or faster or better, so that we can, again, drive the outcomes that we're trying to drive.

So one of the most heartbreaking statistics that comes to mind is the fact that depending on who you ask, depending on what population, I've heard, anywhere from 30 to even 70% of. Cancer patients experience psychosocial distress, right? They experience distress related to their diagnosis. Of course, right?

We hear cancer, we think we're gonna die. It's distressing. whereas only about. Maybe, I think I've heard, seen four to 8% actually seek psychosocial support. Like that's a huge gap, a huge, huge gap. we also come to find that, folks are most likely to seek that support at point of diagnosis, right?

When people are scared, when they're freaked out or they've learned, just learned that they've had cancer, it's overwhelming. They want help. Um, but systems don't yet. Kind of have that automatic service available. And so again, I'm looking to implementation science to say, we know the distress is there. We know that folks aren't seeking support.

Why aren't we doing a better job of making sure people have the what they need at the point that they need it? Um, and so I'm hoping that by just diving into these different realms of. Of science that I can learn more about how we close gaps in these systems. In in particular, psychosocial support.

[00:27:45] Leah: From what I remember when patients would first come to us, um, and they were offered, you know, to see mind

[00:27:55] Maria: Mm-hmm.

[00:27:56] Leah: they were, everybody saw mind

[00:27:58] Maria: Yes.

[00:27:59] Leah: that kind of like went

[00:28:00] Maria: Mm-hmm.

[00:28:00] Leah: Um, and then it was just more like offered

[00:28:03] Maria: Mm-hmm.

[00:28:04] Leah: A lot of patients declined because they had Oh, no, no, no.

Like, you know, either they just didn't wanna

[00:28:10] Maria: Mm-hmm.

[00:28:12] Leah: Or they wanted to talk to some, you know, somebody, maybe like a member of their clergy or something, you know, like

[00:28:18] Maria: Yeah.

[00:28:18] Leah: was so you don't always know, and I'm including myself in this too, because I not do any mind body.

[00:28:27] Maria: Yeah. Yeah.

[00:28:29] Leah: and my reason was because I worked there.

[00:28:33] Maria: That's fair.

[00:28:33] Leah: want people to know my stuff. I didn't

[00:28:35] Maria: So fair. Mm-hmm. Mm-hmm.

[00:28:37] Leah: I, I didn't want anyone to know

[00:28:38] Maria: Yes. Yes. And, and this, what's fascinating is this is so common, right? This is incredibly common. To your point, you witnessed it. You saw people who were diagnosed with cancer who said, no, thank you. Right? And we were coming to learn. There's a, a wide variety of reasons why, but a huge reason why is stigma just straight up.

Stigma that people don't want to be seen as weak. They don't wanna be seen as vulnerable. They don't wanna be seen as crazy. And when you think of who, the majority of people who get cancer are in, in terms of generations, right? It's typically folks older who get cancer at uh, you know, when you're looking at kind of overall incidents, right?

And. Older generations have a really different concept of what mental health or mental health intervention means, as, as they were experiencing life mental health intervention was only for people who were quote unquote crazy. Right? For the quote unquote psychos for the people who, you know, were on the fringe.

And so to me it absolutely makes sense that they would reject it because there's, there's still so much stigma associated with it. Now, that said. To a very unfortunate fact. Is, um, one, we know that incidents of cancer at younger ages is increasing, which is not great. we also know that two younger generations are more receptive to mental health support, which is great.

And so I foresee this demand coming sooner rather than later for more psychosocial support available to folks, you know, at point of diagnosis. I mean, to your point, yeah, I, I totally, have seen that too, where people are more likely to say, no, thank you. and it's usually later down the road when they start experiencing, post-traumatic, kind of stress or post-traumatic, events that they go, oh wait.

This affected me way more deeply than I ever anticipated, and it, it blindsides them. And I'm speaking from experience as well. I had no much, much like you. Um, I was like, Nope, I'm good. I'm fine, I'm fine. I mean, you saw me through treatment. I was like, I am fine. I am happy. I'm okay.

[00:30:56] Leah: but, and one thing I wanna say that was so great about you during treatment is you did your homework.

[00:31:01] Maria: Mm-hmm.

[00:31:03] Leah: So you, for you were, like you, you knew you would come back with great questions and you know, like you were a very informed

patient 

[00:31:12] Maria: Yeah. And even then,

[00:31:15] Leah: Even then

[00:31:16] Maria: then,

[00:31:17] Leah: no, I got

[00:31:17] Maria: yep,

[00:31:18] Leah: got

[00:31:18] Maria: I got this. I know what to expect. 

I know what questions to ask, like I'm prepared. But again, I. It's only in hindsight that I'm able to stop and ask why would, why, why did I do that? And the, the raw and vulnerable answer is because the pain of acknowledging that I was a cancer patient was too much.

It was too much and it was easier to be like, I'm fine, I'm fine, I'm fine, I'm fine, I'm fine. I got this. I just, you know, like I said, just gotta go take the car into the shop and get this done and over with. It's much easier to operate from that space than to accept that I was a cancer patient.  so that's an issue and that's not, that's an issue for.

People of all ages. and it's a really tricky issue to tackle because how do you help somebody who doesn't even recognize that they need help?

[00:32:17] Leah: So how do

[00:32:18] Maria: Whew. Let me go get, let me go.

[00:32:21] Leah: need answers.

[00:32:22] Maria: Yeah, let's do this again. Once I do a PhD and have a.

[00:32:27] Leah: Yeah. I mean. I would, with my patients, I would come back and I would like readdress it if I felt that they really need, you

[00:32:36] Maria: Yeah.

[00:32:36] Leah: something. And for some reason I don't, I don't know if I did this with you, I probably didn't, but I would like approach people, you know, at different

[00:32:47] Maria: Mm-hmm.

[00:32:47] Leah: Like it wasn't just like one off. Like I would really encourage

[00:32:50] Maria: Yeah.

[00:32:50] Leah: if they really could, especially if they really started opening up to

[00:32:53] Maria: Yeah.

[00:32:54] Leah: because I didn't feel like I was

[00:32:56] Maria: Sure. Sure.

[00:32:58] Leah: So I would say, let's refer you, and I had patients say, I would rather talk

[00:33:02] Maria: Mm-hmm.

[00:33:03] Leah: I'm like, oh,

[00:33:04] Maria: Mm-hmm.

[00:33:05] Leah: would

[00:33:05] Maria: Mm-hmm. It's because the relationship was there and this, this is where I think peer support is so helpful, right? Because the thing about peer support, um, is it's all about the familiarity of somebody, right? That you're more likely to open up with somebody who feels familiar, whether or not they've been through your circumstances.

There can be peers in many ways, right? Um, and so I think peer support is a really helpful way to allow people to open up and acknowledge that there is a need. all I wrote about this last semester in a paper that I had to complete, um, uh. An interesting avenue might be leveraging conversations about side effects as a means to kind of put your foot in the door to talk about emotional support.

Because when you think about it, there's a, there's the Venn diagram of, Mental health systems and treatment related symptoms. Things like insomnia, right? Things like irritability, things like changes in appetite that could be due to anxiety, could be due to chemotherapy. Who knows? But it's an, it's, um, an easier way to have the conversation to say, Hey, you're gonna experience a wide variety of side effects.

Some of them might be due to treatment. Some of 'em might not be due to treatment. And it's important you tell us what the, what you're experiencing so we can figure out what's what, and so we can troubleshoot it with you. And I think for maybe folks who are more resistant to, um, mental health interventions, that might be a more palatable way to open things up, as opposed to just saying like, well, you know.

Cancer's hard and people feel isolated. So when you do, you know, go see a therapist, 'cause then people are gonna be like, I'm not isolated. You're isolated. Just puts people automatically on the defense. So

[00:35:01] Leah: Right, right. Yeah. Because you could be surrounded by friends and family, and it's still very isolating.

[00:35:09] Maria: Incredibly, And that is a incredibly common thing that people experience in Cancer Landia, that I feel like other patients know and see, but people who are not patients don't yet quite understand. 

[00:35:26] Leah: So where do you see yourself going with this? So you're going to complete your master's of social work

[00:35:31] Maria: Mm-hmm.

[00:35:31] Leah: talking about perhaps getting a PhD, but you're not gonna be a therapist. Like where do you see yourself? Like what's your, um, I guess what's your passion?

[00:35:40] Maria: Mm. Yep.

[00:35:42] Leah: do you see the future of Maria being?

[00:35:45] Maria: Oh my goodness. Number one alive.

[00:35:49] Leah: Yeah. Well, okay. No, I go, okay. Yes, yes.

[00:35:52] Maria: No,

[00:35:53] Leah: more

[00:35:53] Maria: know, I know, I know.

[00:35:54] Leah: what you're, what you're like I, I, I, I hope that for you as well.

[00:35:58] Maria: Many years alive. Um, so. There's, there's less of, less the question of like, you know, what do I want to do and what, and when I grow up, and more about what are the type of challenges that I wanna solve or play with. So, um, I most certainly want to look as I've been mentioning, into just psychosocial support and oncology, and preventing.

Trauma, and as much as we can prevent trauma, so doing research around that, but also looking at research in terms of survivorship. So survivorship is fascinating because it's this kind of interesting new emerging discipline within oncology. We're doing a better job of, Keeping people alive post-treatment.

Hooray. Right? More people are living beyond the five year mark, but going into the 10, 15, 20, 30, no year mark and beyond. And as there are more of us who are surviving cancer, our needs are unique and different. Um, because the therapies that we've received that saved our life, that also created, you know, a, a little bit of a deal with the devil in terms of, you know, symptoms and side effects that emerge.

Um. Or side effects, if you will, um, that emerge.

[00:37:10] Leah: Hey, we have a whole series on

[00:37:11] Maria: I know you do. I know you do. and so, um, as survivorship is in emerging discipline, I'm really curious to see how various care systems, whether they be in oncology, in primary care, In like therapeutic social work, um, in physical therapy, in ot, in all of these spaces.

 how do they come together to make sure the long-term c are of people, particularly adolescents and young adults, is well designed, is well thought out, and therefore well delivered. And I recognize that's a really tall order not to disparage anybody in these systems. Like I I, I am going into this field and becoming one of, you know, many providers because I believe that people are the ones who drive change.

But the way our systems are set up and the way they're architected is ultimately what kind of causes some of the challenges that we see in these spaces. So that's what I wanna look at.

I think that, I mean, there obviously there is a huge need

yes.

[00:38:19] Leah: because younger generations are also more

[00:38:23] Maria: Mm-hmm.

[00:38:24] Leah: About what they

[00:38:24] Maria: Mm-hmm.

[00:38:25] Leah: and what they

[00:38:26] Maria: Correct. So, so here's what I find, like I wish that more hospital systems did or had the, the mentality that CTCA did in the way of making sure that things were truly patient-centric. Because, gosh, how many hospital systems I, or cancer systems have I experienced now? 1, 2, 3. Four of the four that I've experienced.

Four. I know, right? Mm-hmm. CTCA hands down was the best because it was so obvious that patients were at the center of everything they did. Right? When, when appointments, literally like when providers and where we were placed right in a room, and people literally like revolved around us that says everything.

Everything as opposed to kind of shuttling people from one place to another. Um, and I am, the system that I'm currently within I see is making efforts toward that model, which I think is phenomenal and I hope they do it successfully. Um, but there does need to be more, you know, human-centered design injected into our systems.

 where, um. It seems like the design or feel or experience of something is so often an afterthought. You know, it's more like, you know, treat the thing, do the thing, move on. but again, that's really the byproduct of the way the system's built. Mm-hmm.

[00:39:57] Leah: Right, and so that's part of the change that you wanna implement.

[00:40:00] Maria: That's part of, that's part of the change that I wanna implement, but that also means starting to unpack and dig into things like policy work, right? Because systems don't exist without policy. And so, um, again, I'm fortunate enough to be in a program that, really teaches holistic social work. and by that I mean, you know, yes, they give us clinical skills, which are great, but we are also required to take policy courses, right.

Um, and we are, You know, required to do like program evaluation type thing. So they, they really want us to examine deeply the systems that people exist within or whatever population that we're catering to. Um, and so, I look at what's happening in US policy currently in the way of, you know, defunding Medicaid in the way of defunding things like the, NIH or National Cancer Institute.

Um, and I can't help but think about all the downstream effects that that's gonna have on patients, right? And. You know, if there's anyone who's thinking, well, you know, I'm not on Medicaid, this isn't gonna impact me. I encourage folks to think systemically. Sure, it might not impact the insurance that you have, but those are now dollars that are no longer in medical systems that previously were there.

And so those medical systems are now operating with, you know, still high patient volume, likely fewer providers, um, because they can't. Hire folks, because they don't have the funds to do that, right? Or, um, just that it creates a lot of scale challenges. And so while somebody might be thinking, well, this isn't gonna impact me, talk to me in a couple years when you can't see the provider that you need to see for months and months and months, because there just aren't enough staff to do the work.

[00:41:50] Leah: Right, or you're the closest hospital to you has closed because there's no funding.

[00:41:55] Maria: Correct. Yep. Or you have no choice in provider or system because private equity is scooped up a bunch of small hospitals, uh, and they're all the same thing now, and you no longer have kind of choice of the, the type of system that you wanna receive care through.

[00:42:11] Leah: Yeah.

[00:42:13] Maria: So yeah, these, these have significant implications.

Um, the most, sorry I'm going all over the place in terms of policy, but like, this is honestly like kind of the like advocate passion that's coming out. Um, one of the things I've been paying attention to since, January was what's going on with the US Preventive Services Task Force. and so for folks not familiar, long story short, there's a group of folks called the US Preventive Services Task Force, who are non-partisan scientists who inform, what preventative services are kind of standard like.

Quality of care, standard of care. and they make recommendations then to say, you know, this is what we think the vaccine schedule should be. This is what we think the cancer screening schedule should be, you know, among other things. And, um, those recommendations by law, for preventive services must be covered by insurance.

They must. So things like breast cancer screenings, right? Things like, um. Colon cancer screenings or colonoscopies must be covered by

[00:43:27] Leah: PAP Smears.

[00:43:27] Maria: Pap smears. Exactly. Must be covered by insurance entirely, because that's the law. Lucky us. So what people don't really see, if you're not kind of immersed in this space or becoming a crazy conspiracy theorist like I am, um, not crazy conspiracy theorist, just very passionate about how this all connects, but.

[00:43:50] Leah: And you're, you're forward thinking,

[00:43:52] Maria: Yes, I'm thinking several steps ahead for those who aren't kind of putting the pieces together. if anything. Happens to this task force that influences the recommendations they make, that then influences the services you have covered regardless of the type of insurance that you have. So as we're, we've come to have a conversation recently in the news that the current, um, health Secretary is considering firing the entire task force and replacing them, a task force that was.

Supposed to be apolitical and was designed to be, Secured from political pressure is now subject to the very political pressure that it was supposed to be protected from, largely due to a Supreme Court ruling that that came out in June. And so, this is a big deal and I think people don't recognize how much of a big deal it is.

Um, there's some, interesting research indicating that. Like Medicaid expansion had, helped, prevent cancer deaths by like 9%. It's something like that. I need to go like, please do not quote me on this. Um, but this is to say research was really clear that when people have insurance coverage. If they're able to get services that save their lives or prevent cancer, much like colonoscopies do, or like breast cancer.

Early detection, right? Early detection saves lives. That saved my life twice. Thank goodness for, for mammograms. Um. But if those services have any cost associated with them, people are less likely to go have those services done. And if they're less likely to have those services done, if they do have a cancer, they're less likely to catch it early when it's still treatable.

And so, um, yeah, this is the stuff that, that kind of keeps me up at night, but again, keeps me bringing me back to, you know, how do all the pieces connect within the system and, and where do we have opportunities to intervene?

[00:45:56] Leah: Yeah. And those are things that I have seen working, uh, when I worked at a more rural hospital. I should say it was more of a community hospital, but it was surrounded by, you know, rural communities and Yeah, I mean, people, people had to make choices

[00:46:12] Maria: Yeah. And they're, they're tough choices.

[00:46:14] Leah: Cancers were diagnosed at later 

[00:46:16] Maria: Mm-hmm. 

[00:46:17] Leah: of the choices that they had to make because of financial

[00:46:19] Maria: Yeah.

[00:46:20] Leah: or, I mean, so these are things that exist now,

[00:46:24] Maria: Yeah.

[00:46:24] Leah: only going to get more prevalent.

[00:46:28] Maria: Yes. And the thing that was extra disheartening in seeing the data related to preventative screening and people who would opt not to pursue it if there was cost. Um, American Cancer Society had done a survey of survivors to ask if there was cost associated with your screening. What's the likelihood that you would.

Get screened and the majority of the majority of survivors said that they would be less likely to pursue screening, regular screening if there was any costs associated with it, and that's those of us who know what the heck it means. Who understand the implication of a diagnosis. Right. That blew my mind, but goes to show just how important, affordable, and accessible preventative care is.

And I worry that, you know, depending on the way this next task force shapes up, that these type of services are at risk. Because if they decide it's no longer something they recommend, then it they, it therefore no longer needs to be covered by law.

[00:47:37] Leah: It's scary.

[00:47:38] Maria: It is, it is. Um, but I mean, the flip side is we have an opportunity to do something about this. And I know this seems, you know, uh, awkward timing, but, um. I've been saying recently now, like people think about voting. You wanna talk about getting out to vote. Don't start until it's election season where there's enough distraction and drama.

It starts now. We should be thinking about how we activate people to vote. Now we should be thinking about. How we talk to our neighbors and our friends and our extended family and whatever about voting now, it, it doesn't have to wait till there's a, you know, a midyear or mid cycle election or, you know, the, the big one.

I kind of don't wanna stop talking to you, but we kind of have, you know. We have a schedule we gotta keep

I get it. I get it.

[00:48:29] Leah: Is there anything else that you want to plug or encourage people to do? I mean, you just did, you know, just

[00:48:39] Maria: Talk about voting now. Yeah, if there's, if there's anything I want for folks to get out of this, and hopefully they do. I know I'm kind of all over the place. Um, but, um. If there's anything that I'd want folks to get out of this is, cancer treatment is hard period. And if you think you are fine now, that is fabulous and having.

Whether it's a friend, whether it is, uh, somebody you know, who's had a similar diagnosis, whether it's a therapist, whatever the case may be, having somebody that you can talk to about your stuff is important, even when you're fine. That's thing number one. Thing number two is talk about voting. Now think about voting.

Now think about all how all of the things affect you now, and that could be overwhelming. I get that. But what's even more overwhelming is not being able to get the care that you need when you need it. Because decisions that were, were made by people who who aren't thinking about, people on an individual level.

[00:49:54] Leah: Well, it was great catching up with you

[00:49:56] Maria: You too,

[00:49:57] Leah: I look forward to catching up with you when you finish your program and you're kind of on your next, 

[00:50:03] Maria: adventure,

[00:50:04] Leah: your next adventure.

[00:50:06] Maria: might be.

[00:50:07] Leah: Adventures in in healthcare implementation.

[00:50:11] Maria: Hopefully so, hopefully so. And system science. There's the meme of the dude who has like a bunch of like graphs and stuff behind him and like lines. And he, his, he is got like wild in his eyes and he looks, you know who I'm talking about,

[00:50:25] Leah: yes,

[00:50:26] Maria: that, that meme has a name. But I feel like that guy, like, I'm, that's, that's next on my adventure is becoming that guy.

[00:50:33] Leah: like stringing all the like

[00:50:35] Maria: Pieces together. Yeah. 100%. 100%, yes.

[00:50:42] Leah: Well, I'm excited for everything that you are doing,

[00:50:45] Maria: Thanks. I

[00:50:46] Leah: I'm proud of

[00:50:47] Maria: Aw, shucks. Thanks. 

Well, thank you,

you are so welcome. Thank you for having me. This was I am more than happy to help however I can truly, truly, truly.

[00:50:58] Leah: and we have, um, your LinkedIn in our show notes

[00:51:02] Maria: Perfect.

[00:51:02] Leah: read you through there. Thanks so

[00:51:05] Maria: Yes.

[00:51:36] Maria: Thanks. I learned it by watching you. You remember that commercial?

[00:51:42] Leah: Yes, but that was, that was about drugs.

[00:51:48] Maria: It was.

[00:51:49] Leah: All right.

[00:51:57] Maria: It will be the perfect intro. Cut.