Episode 16 Part 2: The Young Adult Advisory Board at the Livestrong Cancer Institutes

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welcome back to cancer uncovered. This is Kristin. When at the Dell medical school live strong cancer institutes this week, we’re diving back into the conversation. We started last week with three members of the live strong cancer institutes, young adult advisory board, Rebecca Munis, Ryan. Besera a GTR.

And the live strong cancer institutes, pharmacist, and young adult cancer caregiver, Laura Cannon, if you haven’t listened to part one, I would highly suggest starting there first. And then circling back around to this episode. Part two as a refresher, there are approximately 80,000. Why A’s. Ages 18 to 39 diagnosed with cancer every year.

And this group of adults has a different set of needs that often go unmet by traditional cancer care. As this group of adults is often still attending school, moving into their first careers, finding their sense of self and starting families. The Y a. At the lifts drawn cancer institutes made up of 40.

Why a survivors, family members and caregivers works to make sure the Y a program at the cancer center is addressing the specific challenges of this population based on their lived experiences.

So knowing that you finished treatment. Right. And you’re sitting here today talking with me about the young adult oncology board. all of you alluded to feeling like a burden feeling guilty, . And feeling like it just hit you as a shock. And so I guess follow-up question that I have is is that something that ever really goes away? Or what advice do you have for maybe people that, , are managing this currently or , who will manage it in the future?

 

No, it’s really interesting question, because I feel like unless you take the right resources during your treatment process and post-treatment process, you know, seeing possibly a social worker or a therapist or something to discuss these core issues, sometimes they don’t go away ever And it will always be in the back of my mind that I’m being a burden for somebody else. Cause I’m too tired to go out today , or I’m just don’t have enough energy to do ABC activity today. And that’s still a thing because the effects of cancer. They stay with you for years and decades, and it’s going to be worth you really the rest of your life, because you know the feeling of how you felt when you were sick.

And you’re going to have some side effects that just don’t go away to be honest. And when I’m not feeling well, I do feel guilty that, you know, my wife wants to go out or we want to go on a trip or something like that. And I don’t want to be a stick in the mud,

but at the same time, , if I embrace some of those resources that are available and I really seek out support and it doesn’t have to be a social work and all these things, but just a friend or somebody to talk to you like these young adult cancer advisory groups that, that we’re on, it can really help you process what you’ve gone through in that journey and kind of give yourself some more credit for overcoming this mountain.

Yeah, I would say navigating resources early on is very helpful. , , I think I was a year out or more of my diagnosis. Once I was told that I had no evidence of disease. I completed all of my surgeries and all my chemotherapies. There was just underlying things that I never recognized until I actually sought out, , a therapist.

And I went a few times and I was like, , I’m not really feeling the effects of this. And then I realized to myself , this is kind of like going to the gym. You can’t go to therapy once or twice. And if they don’t solve your issues, you just give up on it. It’s something you have to stay on top of and stay consistent with.

, I was in therapy for over a year and my therapist even called it, , opening Pandora’s box because it really led to all types of other aspects of my life. That cancer was. Masking, I would say, and once I was able to visit everything, that’s when I felt a little bit more solid foundation and I could take everything else on because I realized at that point, it wasn’t just the cancer that I needed to face.

It was a lot of other elements. , when you get a cancer diagnosis, your relationships change with both family and friends. And so I had to really navigate that as well. There were friends that I’ve had since childhood that kind of disappeared. , and it’s not their own fault.

Sometimes they go away because they don’t really know how to take your diagnosis. And they don’t know how to talk to you. , there was family members that, , did some not nice things during my treatment that I learned to set some boundaries. , barriers with so that I could feel comfortable in healing and taking that time that I needed to.

But, , I think it’s really important that once you feel like you’ve met that finish line, wherever that is in your cancer experience, to really assess all the aspects of your life and people that are within them. Like if they’re good people that you should continue on with, or maybe people that you need to grow from.

And that’s something that I think was at least a positive takeaway for me during my cancer experience,

I think it does change you. It does have impact. And those impacts, I think of the group here, , I’m probably the longest in my survivorship journey , , it’s 10 years now and it just, it is a journey. . There is not a final destination because it does change you in many ways. There are short term things that you need in terms of support that will help you get better.

But at least speaking personally from my wife and I, so my wife’s name is Chad Tanya. And for Chattanooga and me, it has affected our lives profoundly because she’s a molecular biologist. And when she graduated, , she moved into oncology, cancer, drug development. So that’s what she does now.

She works in a pharmaceutical company, developing cancer therapies, and it really doesn’t go away because most recently, as of a few months back, I moved jobs I moved into a company that makes medical devices It’s not an oncology space, but it helps people live better lives because I’ve seen firsthand the impact that things can make on people and if there’s any good that came off, it is at least we are able to do something through this. And that’s the way we look at it.

Absolutely. All of you had such great points talking about this, being a journey, , the importance of emotional support, and then also giving back and really using what you’ve been through to help other people.

And so I know one of the ways that you do that is by serving on, the young adult board , with live strong cancer institutes and LCI. So we know through this board, we offer supportive services for young adults specifically, . And we talked about like the emotional support, but there’s also other avenues of support that are really, needed and necessary for young adults, such as like fertility, nutrition, , social support.

, why are these services so critical for those going through cancer?

Yeah, , so what is the emotional aspect? But then the other aspect is a lot of times when people are young, , in a sense, uh, young people are actually quite alone. Sometimes you may have a lot of friends, but you know, a lot of times your, in your finishing up school, , undergrad grad school, you’ve not really sat down all your roots completely.

So sometimes you lack a lot of the support network that comes with being in a place for a long time. Having grown up there, things like navigating insurance, it’s not just the emotional aspect, , , , you know, how do you pay for it? Folks who are economically disadvantaged people who are on immigrant visas.

, what happens to your visa status when you’re traveling? , what happens to your immigration status? So a lot of times this is your first experience , with the guts of the medical system. And I think, , I think this board really helps address some of those core needs for young

adults.

Well, I’ll just say something that a GTS triggered in my head was your first experience with the medical system that is terrifying. , before I had my first appointment with a neurosurgeon to just figure out exactly what was in my head. .

I was not even aware of what my maximum out of pocket was. My deductible. , what my insurance plan co-insurance covered, what the copays meant. I didn’t know what any of those things meant, and that’s just something they don’t teach young people in school. That’s not a core curriculum, , and why should it be, you would think you’re young and healthy.

So it doesn’t even come to mind. And that’s a big triggering aspect there of just being exposed to this new world and having to learn that while you’re sick, , is a really difficult thing. And then on the other point, , being a young person is, , worrying about your fertility and how all of this treatment with these toxic chemicals and radiation is going to affect your future.

If you want to be a parent, , , whether you’re a man or a woman, it can have drastic effects on your future to, , , to be a parent. And that’s a really scary thing. And sometimes they don’t bring up those difficult conversations about fertility preservation until the last second to where it’s too late.

And you either make a choice to delay your treat. Or get fertility preservation , so you have to make those choices. , , that’s a scary thing as well, cause you just want to get better and you’re worried about not being able to make it. And so you’re going to 99% of the time choose treatment.

Yeah, I agree to what both a G and Ryan said, it’s, , when you get diagnosed as a young adult and in many cases, you’re at a pivotal point in your life, you’re either, , navigating your career or maybe you’re starting a family or maybe you’re in a new relationship.

Maybe you got out of one, , , navigating, , school, all of these things are just critical moments in your life where you’re making decisions that are gonna really change the trajectory of your future. to kind of touch on the fertility aspect. I remember that when I got diagnosed, it was really upsetting to me because when they visited the fertility app, They made it a very, , last thought type of thing.

They introduced it to me as like, Hey, if you want to explore these avenues, you have to make this decision now because we have one appointment for you and it’s next week. And by the way, , it’s a little bit painful of a process. So they did not make it seem like it was a pleasant experience. And so in that moment of a five minute span, I made the choice to say, I’m not having children, which for somebody that’s newly married, you don’t make that kind of decision in five minutes.

and so that was really discouraging because that was, again, something that I thought across the board. This is what it looks like in every health system. And it LCI, that’s not the case. I went to a different cancer treatment center where I was not given the opportunity to be, , served by all these great resources and services and.

been introduced to these services early on and in a different setting. I think I would have taken advantage of them better. I would have had more questions. They would have been answered, I think, an inappropriate time and, and all of these things, but unfortunately that’s not something that’s offered at every space.

So I think it’s just really great that LCI offers them because that really gives you a , , high quality of care. Whereas it’s not the same at every place. And I don’t think everybody knows that.

Absolutely. And I think LCI is the only, , young adult cancer board in central Texas. And I know that you all have worked with them for a while now.

And so can you go into a little more specific details about what you work on in your board meetings for the young adult board through LCI, and then why you’re dedicated to this work? Although I know you’ve already somewhat alluded to that, um, would just love to hear more about what you do specifically, how it’s relevant to young adult care and then.

Really and why you’re dedicated to it.

Well, I feel like we could probably talk for hours about what we’ve learned at the young adult board and what we’ve made recommendations to, , Dell medical about. It’s just been such a fulfilling experience to be honest. , and just to cut one point is just teaching patients to advocate for themselves.

And then patient centered care is just seems to be the theme in every single meeting when we get together, what’s best for the patient. What’s best about how we get them in touch with the correct clinical trial. What’s best for the patient about how we have these difficult conversations about fertility and, , , insurance, the financial aspect of it.

How do you navigate all of these things? Which is not really a thing. When you go to these large cities within a city of hospitals. , , to be honest with you, I got some of the best care in the world at MD Anderson and they were amazing, but it was still difficult to navigate. It’s a scary experience.

And I just feel like the lessons I’ve learned from the WIA board would have probably changed the trajectory of my cancer care even further, even though I had a good experience.

, just to jump in here, the white board has been such a great community. Like I’ve learned so much from everyone there just listening to everybody’s different experiences and how we either did or didn’t navigate what we needed to in the time and how to do it going forward. , , there are people that have been, , in treatment while we’ve served on the board together out of treatment for a good number of years, and we all get to collectively share our experiences.

, this went great. This didn’t go great. And so now LCI is able to collect all of these thoughts to inform their care going forward. And that is incredible because one of the reasons that I wanted to serve on the board is that I wanted to make an impact that, of the experience that I had. I had a really challenging time during all of my treatments, , from just the laundry list of things that went wrong because, , providers didn’t want to listen to me, or I had nurses that mistreated me or didn’t want to hear what I was saying about like my quality of life for care or anything like that.

, and I think it’s just really incredible that we’re making , this impact that of something that just affected us and cancer can be such a terrible thing. And yet we’re making such light out of everything that we went through.

So I think one of the questions you had asked is, , what does the boat do? And, , I think what Ryan and Rebecca has told you some of the overarching things, but, you know,, at a ground level, if you want to know what, like.. Specific things like questionnaires, looking at the questionnaires, do these questionnaires make sense?

And I think after Ryan, I’m going to pick on a line that you mentioned in one of our board meetings is because it’s really care for patients by patients because all of us have been through these experiences. So we know what questions for nutrition or, , fertility we talked about in terms of health.

So we know the kind of questions that people would have. So giving the feedback to Robin and the team at LCI, you know, , , maybe ask these kinds of questions or, , you may have these questions, but, , realistically people may not be in a position to give you an answer because they don’t have the mental space to do it.

So to be able to tailor, , what is being done, , with a better perspective, , I think LCI really helps address that whole holistic, , treatment for the patient. , I was very lucky. , I got treatment at, in Dallas and an MD Anderson. , I was extremely lucky because things did work out.

, but , it was very scary because , if we, if those chance encounters that we had, we’d just met a doctor in the hallway. And that determined the course of my treatment, , as compared to someone actually saying or telling us, no, , this is the path to go. , , those things can make a huge difference in somebody’s life.

And I think that that kind of what keeps us motivated my wife chatting than me. It keeps us motivated because it keeps us grounded. , it it’s something you live with. So being able to, uh, help somebody else, I think has that would be for us. , and I think that really. All the friends and the people and the relationships you build up

well, to that point, actually, as he and Rebecca, they know that I actually met my wife on the white board and we’re married now and we got married in February of this year. And so it’s just kind of like you talk about building relationships and trust amongst this group where this is a safe space.

I mean, it really is a life-changing, , discussion that we have here that changes not only our lives, but hopefully the patients that come through the clinic as well. So it’s really been very.

Thank you so much for sharing that I have cold chills, and I’m just so honored to be able to hear from you all and talk with you about this topic, because it’s so important. And I think, , from my perspective being a healthcare provider, it’s just so nice to be able to learn from you, ? So to learn from you on the board of , what can we do differently?

How can we be better? How can we approach things from a different perspective, knowing that we all haven’t been through it.

And I think that transitions perfectly into the next question. So knowing where talking to students or young healthcare professionals that may be listening, um, what do you want to make sure they know about your experience? Or what perspective would you like to leave them with in terms of, , care of young adults with cancer?

Let me go first, because I thought about this question , , I really thought about it yesterday and, to anyone who’s listening, who is a young healthcare professional, or anyone. You always have to do a good job, whatever you do, you have to do a good job, but remember the young adult and action that you take today or tomorrow when you’re treating this person, that person has to live it for 50 to 60 years.

Remember that it’s not a five-year timeframe you’re talking about for a young adult. You’re talking about their lives.

So anything that you do has a long-term impact. I think that’s the biggest message I could have for anyone who’s, , treating a young adult, , patient , and empathize with them. If you’re young, you should be able to empathize with them because they’re going through exactly what.

I think I would want, , , uh, healthcare professional to know, or even students who might be thinking about going into the healthcare profession, that it’s really important to kind of remember where you were at at the age that you are diagnosing or visiting with these people.

, , I got diagnosed at 29 and I have a full, , funds of knowledge now that I didn’t have in those years before. And so it’s really important to think about that. you know,, if you do something for the very first time, how nervous you are when you’re doing it, because you can’t navigate it.

And so I think it’s really important, , empathy that we’ve mentioned before and just putting yourself in , that person. , , healthcare professionals, , you go to school and that was your goal. And you have to realize that the patient that’s sitting in front of you may not know anything about health.

I remember going into the doctor’s office and they would tell me to rate my pain. And I was like, I don’t really know. Am I feeling a 10? Or am I a five? I don’t get it. And so even something as simple as that I think is really important to recognize that, , give examples, break it down for them, put yourself in their shoes.

There are also cultural differences. I remember entering as a young, Hispanic female, I was brought up to be, you know, I never challenged authority. So if a provider or a doctor told me to do something, I didn’t question it because at the end of the day, I thought that they knew all, , when in fact the patient knows what they’re experiencing, what they’re feeling, they’re the expert on themselves.

So I think it’s just very important to take all of that into consideration. , the person in front of you as a person and they have a whole life going on around them that is important to know and ask about before you present some options and solutions to them. , and I think that that would be my biggest takeaway message for, , students that are looking into the healthcare field.

Just always keep that in the back of your mind, , to stay humble and empathetic to people. And also people that have been in healthcare for a long time or maybe are new to it. , these are just something that I think is very valued as a patient when we can recognize that the person that’s sitting in front of us is really listening.

I really appreciate that. Rebecca said the word humble right now, because that experience with my doctors was what changed. My whole experience is like, if they don’t know everything where they don’t know the answer to something, they would just say, oh, let me just call a friend of mine over at a different hospital.

And let me just see what they think about this. You don’t always have to be the one who takes it across the finish line. Do what’s best for the patient, you know, has been the most important thing in my care process when I first started going through treatment or just trying to diagnose my actual cancer at neuro Texas, the doctor there, , I believe it was Dr.

Douglas Fox. He said, I’m going to take these scans to a little council of other doctors and take a look at it. I’m going to send you over to my friend. , , Dr. Groves at Texas oncology, I think he’s best for this and that kind of selflessness was so impactful for my trajectory to get to the right person who could help me survive this.

And then that doctor Dr. Grover. I can’t do the surgery here, but I know somebody who can, and he actually texted the person on his phone during that moment and said, I’ll come back around. He’s probably in surgery. I’m going to go see some other patients, but you wait here and treated me like a priority during that very moment right there.

And that’s very rare. I feel like and , doctor’s appointments. You almost feel like you’re just in a cold room usually, and it was just such a refreshing experience that I can just tell a young person, just be compassionate, be humble, be selfless, you know, and do what’s best for the patient.

That’s in the room right there and be an equal with them and just sit there and listen and make sure that they can digest everything that you’re saying. Uh, and get past the medical terminology sometimes.

You, you hit a nerve in a good way. And I have to mention this because I think that the humble down to it and doing what is right for the patient, uh, echoes exactly what happened to me at MD Anderson.

We had gone there to the transplant department. , told us, you know what, since you’re here might as well go to the lymphoma department. I went to the lymphoma department. The doctor was, he’s a really big shot, but he said, look, you know, your case is very rare. And I’ve seen just a couple of them like this, but you know what?

There is this colleague of mine, she’s in leukemia and it’s the same disease, but she’s got some really interesting work. And we were like, well, , we’re just here. What do we do? He said, don’t worry. And. It was a Friday afternoon. This doctor from leukemia called us up. We were driving and she called us up.

So we stopped and we took her call and she said, , come tomorrow, tomorrow, Saturday. But come to my office. I will sit down with you. And, , we met her, she gave us one of her research papers, Dr. Debbie Thomas, and, oh my goodness. I think that, , that was so refreshing.

And, you know, , there was no ego, it was all about what is best for the patient.

I think what I hear as a theme is treat the patient right.

And meet them where they are at what stage of life that they are. And don’t treat them as a number, but treat them as they come. Um, and also extend that treatment to their loved ones or their caregiver who, or whoever’s in the appointment with them.

Right. And, and making sure that we’re, , including those. Avoid, , what’s important to the patient or who’s important to the patient. I think sometimes with young adults, as healthcare providers, it can be harder to have those tough conversations, conversations surrounding fertility or, , being more open because in a way , we also see ourselves and we’re treating the patient.

. And so that’s definitely not a reason to avoid it, but I think that sometimes those conversations are avoided even more in young adults than they are. Maybe with patients that are a bit older with that being said. Is there anything else that you’d like to talk about in terms of your work on the board or advice for students that may be listening or anything that you really just have on your mind that you’d like to discuss before we close today?

Let’s say I have a piece of advice for students. , I was wrapping up my undergrad degree in communications when I got diagnosed. , I then pivoted to a master in public health because of what I went through. And I think it’s important that, you know, sometimes things happen in your life and you don’t really know why and things don’t really go as planned, but it doesn’t mean that it’s always for the worst case scenario.

I am so glad that I’ve been connected to the board, , to Robin Richardson, as everyone mentioned, has been such a light in so many of our lives. She’s connected me with so many opportunities, , and experiences, , with live strong, , other, , oncology and cancer based initiatives. And it was only because of what I went through.

That I kind of had this path change in my life. And so I think some of us, like a Jeep mentioned too, that they were drawn to different career paths because of what they’d experienced as well. And so I think sometimes as a student, you may be unsure of what you want to study or what you want to do for a career.

And so sometimes you may explore something and maybe it doesn’t seem like the right fit, but there’s always time to change. ? , I, like I mentioned, got a very late start. I didn’t start my undergrad until my late twenties and that’s okay. Some people choose to, , work first and that’s okay.

Some jump right into college right away. And I think that either path is fine. I think sometimes, , people are discouraged from doing whatever the other, and I think it’s just important for students to note that they should just stay curious and explore as much as they want to.

I wonder to take what Rebecca said. , and I wish my wife was here because she has had a very non-linear career as well. , so she does competitive intelligence for an oncology company that makes these pharmaceutical drugs, but her bachelor’s was in computer science and then she moved into bioinformatics and her, her PhD was in protein folding.

It’s not like, you know, you need to stick to one single part. So be curious and just be open to different experiences. , I think that that’s the biggest, , takeaway that we’ve had and, , and one other small little piece of advice is, , everyone thinks healthcare is .

If you’re doing it, it’s glamorous, it’s sexy. It’s , but remember. It is a lot of work, but I think it is satisfying because the details do matter, , what I’m doing right now, whether I’m making a medical device, , it’s the small little things that you do, , and you make a house brick by brick and, , don’t always get caught up by the glamour and think that everything is glamorous because I think to do something, to treat a patient well, there is a whole army behind, , to make sure that that treatment goes right.

So you are part of that chain and everybody adds value

all

right. Well,

thank you all so much for your time today and we’re very excited to have you on the LCI advisory board and really appreciate, , The time that you took to educate students or future health care professionals, or even current healthcare professionals about your experiences and in ways that we can approach it differently moving forward.

So thank you so much.

 

 

Thank you to Laura, Rebecca, Ryan, and edgy for their time, expertise and authenticity. If you have been impacted by cancer as a young adult. Are interested in contributing to rethinking cancer care and would like to meet other ya’s impacted by cancer email column. That is C a L m@austindotutexas.edu. For more information about joining the advisory board to learn more about the young adult oncology program with the live strong cancer institutes at UT health Austin.

Visit UT health, Austin dot. R G if you have questions regarding this episode, previous episodes, or have an idea for an upcoming episode, we want to hear from you. Please email us at live strong cancer institutes at Dell med dot U, Texas dot E D U. You can also follow us through our chair, Dr. Gail Eckhart on Twitter at S Gale at cart at cart is spelled ECQ.

H a R D T. This is Kristin. When for cancer uncovered. Thank you for listening and learning with us. .