Episode 16: Part 1: The Young Adult Advisory Board at the Livestrong Cancer Institutes

We are a resource for learners, including every member of the live strong cancer institutes on track educational pipeline from middle school to residency, we are a growing collection of interviews, talks and experiences, the uncover, the myths and the uncertainties of cancer and careers in cancer in order to empower and inspire generations of thinkers and leaders.

This is cancer. An education and empowerment podcast by the live strong cancer institutes.

Hello, this is Kristin when and bringing you this month’s moment of cancer awareness. This month is pancreatic cancer awareness month. Our resident expert here at the live strong cancer institutes. Dr. Jong took a few moments to sit down with me and discuss the basics of pancreatic. My name is Dr. Joe, and I’m a gastrointestinal medical oncologist.

And so I specialize in the GI cancer medical treatment. My practice is very much focused on deep and critic as a patients and finding the new treatment for the bank. Uh, just briefly explain about what the pancreas does have bank actually sit deep in the abdomen and it’s really produced as the enzymes to digest your food.

There are two types of cells. The fossil is full. We go, the exocrine starts that is really mainly related to producing the digestive enzymes. Another type of cell is the endocrine type cells that really produce the hormones. That’s also related to the dietician to some extent, for example, like an instant.

Pancreatic cancer can arise from these two types of cells. The one is the exocrine cells and the endocrine side areas arises from the extra prints that we call pancreatic adenocarcinoma, which is the most common type of the pancreatic cancer is a more than 95% of the patient. We have that kind of Kingston.

Who are your patients? Who are you typically? That’s a great question, Kristen. I, thanks. The age is a risk factor for pancreatic cancer. So if you’re more than 62 years of age, that you’re at a higher risk of getting pancreatic cancer. So the patient I see normally is are that kind of age range now, mostly more than 65, but it could also happen in the younger patients because now the pancreatic cancer incidence is increasing.

So I do now see patients who are in a late fifties, for example, or in the early fifties. Why are your patients getting younger? Currently? We haven’t solved that mystery yet. Some patients have the increased family arrests related to the inherited genetics pointing mutations. And the smoking is a known risk factor.

And also the. Lifestyle changes, perhaps because of things like obesity that could increase the risk of pancreatic cancer and also the diet drive, eating red meat and processed meat and not controlling your weight. If you have clear high risk of developing pancreatic cancer, like I just mentioned patients with the known inheritable gene mutation.

Then they should go through the screening. And that is usually involves like endoscopic ultrasound or MRI scans annually. Pancreatic cancer is the thought most common cause of cancer deaths in the United States. Currently, approximately 60,000 people will be diagnosed with a bank credit Ginza in 2021, approximately 50,000 people will die of pancreatic cancer in 2020.

If you think about it, what is it about a thousand people in Texas? It will be the population of the town of Galveston. Yeah. So that is just to really get an estimate in your head. The five-year survival rate is only about 11%, so this is one of the most deadly cancer. Thank you, Dr. Aun for taking the time to share your expertise for more information about pancreatic cancer.

Dr. Ong recommends visiting pancreatic cancer action network at pan can dot O R G and the national Institute of health website, cancer.org. Where if you scroll down to pancreatic cancer and the cancer types menu, you can find in-depth information about treatments, screenings, and current research. If you’re interested in listening to the extended version of this conversation that will be posted later this month.

So stay tuned. And now on with the rest of our episode.

Welcome to another monthly episode of cancer uncovered. You are listening to part one of a powerful two part episode on young adult cancer. In both episodes, you’ll hear from members of the live strong cancer institutes, young adult advisory board, hosted by Laura Cannon pharmacist for the live strong cancer institutes clinic, and a young adult cancer care giver.

Approximately 80,000 people between the ages of 18 and 39 are diagnosed with cancer each year in the United States, which accounts for 5% of all cancer diagnoses, young adults experience very specific concerns when diagnosed with cancer, as this is a time when they typically are focusing on their education, it depends.

Self identity, career development and family planning, cancer care models tend to fail to support the needs of young adult patients diagnosed with cancer, cancer. Incidents rates are increasing for why AEs or young adults, particularly in cancers like colorectal cancer that historically did not impact. Y AEs, which can lead to misdiagnoses and delays and diagnoses as young adults are not generally included in these kinds of cancer screenings.

Established in November of 2019, the LCI young adult oncology program is the only Y a oncology program in Austin and offers cutting edge cancer treatment, and comprehensive supportive services for patients between the ages of 18 and 39, who are diagnosed with breast GI. GYN head and neck, lung, and hematological cancers.

The LCI, why a oncology program was co-designed by our young adults advisory board, composed of 40 young adult patients, survivors, and family caregivers, serving as expert strategists. The Y a board ensures that every step of the way, the LCI, why a oncology program is designed to meet the specific needs of young adults.

I will let Laura Cannon kickoff this conversation. Thank you all for being here with us today. Just to go ahead and get started. I wanted to ask you kind of some simple questions just about who you are and why you’re here. So if you could just tell us your first and last name, what your cancer diagnosis is or was, and then what was happening at the time of your lives when you received the diagnosis.

My name is Ryan Bissera. I’m a brain cancer survivor. I was diagnosed in 2015 and at the time when I was diagnosed, I was actually in full blown training for the New York city marathon. When I basically started experiencing symptoms, it was a real shock. So just going through the entire process of treatment after, you know, being an athlete in my mind was a really difficult thing to accept for myself, but I’m glad that I went through the entire process, have radiation at MD Anderson and was able to get back on my feet.

And I ran the New York city marathon a few years later, which is great. Hi. So my name is Rebecca Munoz and 2017, I was diagnosed with invasive ductal carcinoma, which is breast cancer. And I was told that it was triple positive, which means it was estrogen progesterone and her two positive for my cancer type.

I was actually in my final year of my undergraduate studies when I got diagnosed. So it was pretty challenging. I ultimately. Tried to get through at least two or three cycles of chemo before I had to really tap out, it was too much for me to handle. And then I did take a term off so that I could just kind of let my body recoup and process through my six cycles of chemotherapy.

Before I jumped back in and was able to resume my studies, but it was really challenging. And it was, you know, I got a little bit late of a start to school. So I was 29 at the time of my diagnosis, but it was a point where I was able to at least get through that cancer experience and then just jump right in and finish my goal at that time.

Great. Rebecca, thank you for sharing that with us. My name is Jade Sharma. I was diagnosed. 2010 with T-cell lymphoblastic lymphoma. It’s also called the acute lymphoblastic leukemia because it’s the same disease that can present in different forms. At the time, I just started my first full-time job after grad school.

It was a very rigorous chemo radiation, and then three years of maintenance therapy. And, um, luckily I’m in remission and life goes on. Thank you so much. I think all of you alluded to the fact that cancer can be so challenging, right? So you talked about a marathon and undergraduate and graduate school and being in your first job, and it’s always difficult, you know, at any time it’s diagnosed, but what do you think makes it so uniquely challenging for you all as young adults?

Well, I think that in particular, at least from my experience, the most difficult thing for me was the effect that it had on my family. I know that sounds strange, but you know, you’re so worried about your own body, but just seeing the look on the faces of my parents, my dad and my mom, it just really shook them to the core.

And when I first got the call from my doctor, that I, they saw a tumor on my scan, my MRI scan, my instant reaction was just like, okay, I’ll find a neurosurgeon and we’ll just go from there. But my parents couldn’t accept it. They didn’t know what to say to me. And they were shocked that I just took it this way.

And of course I was in a state of shock. But then from there, their entire life became taking me to appointments. And I always felt guilty during this process when I was going to treatment because my dad spent a lot of time away from home taking me to appointments. And he missed a lot of time with my brother who was still in high school at the time.

And so the really sad thing about this is that right after I was done with my treatment, my dad. I was diagnosed with glioblastoma, a different type of brain cancer than what I had. And he passed away within a few, like a very short period of time after he was diagnosed. And so I always felt a level of guilt of taking that time away between my brother and him.

And so it’s just a different element when you’re younger, you don’t have to consider these other things that are going on in your life. Yeah. I mean, I’d have peer grade just to kind of add to what Ryan said, it’s, it’s challenging. Cause you’re in this position where as a young adult, you’re in this space where you still rely on some family for some things.

And then at the other side of that is you are also maybe in a role as a caregiver for somebody else. When I got diagnosed, I was just two years into my marriage. And so we were still feeling like newlyweds. We had just bought our first home. And then I was met with this challenge of like, okay, we’re trying to figure life out as working adults and with a new home and taking care of our dogs.

And now he’s my full-time caregiver. I was lucky in the fact that I had parents, my father was retired at the time. So he came down and. What he could in terms of taking care of me when I couldn’t physically move around the home by myself, but it was challenging. I felt very guilty. Like I mentioned, my dad lives out of town, so I took him away from my other sisters.

And my sister had to pick up caring for his house in our hometown. So you feel this burden and guilt because you’re having to be cared for by other people. And I think that that was something that weighed on me very heavily aside from. The day-to-day of your diagnosis and the feelings and side effects.

I would say that that was another really big component of that guilt is I think the biggest emotion that you feel. And for two reasons, one is because, especially for young adults and, you know, especially if you’re in either high school, you’re finishing up high school, you’re an undergrad or in early grad school.

I think the biggest thing is. The shock that comes because you’re just trying to be independent. You know, all these phases are, you’re just reading to get out of home. You’re waiting to, you know, be an adult and start living and, and all of a sudden now you’re hit, you’re slammed with this. So you feel guilty because.

Now you’re also putting others down with you. Like my wife, she was in grad school. She was writing up her PhD dissertation and I’ve written my dissertation and I know how intense it was. So she had to sit down in the hospital room and write up her dissertation. Why does taking care of me? And it really wears on you.

Or if any, did you all have issues advocating for yourselves to get your cancer diagnosis from the get go? I think a lot of times in healthcare cancer diagnosis in young adults is not something that’s always thought of as the number one problem. I know I have experience as a caregiver for a young adult patient who was diagnosed with cancer and receiving the diagnosis was something that.

A while just because he was young and healthy, so it definitely couldn’t be cancer. And I’m just curious if any of you all have it experience that. So I would love to share on that because I will say that partially it was my fault in terms of being fearful of the inevitable, but I had actually done a self exam in may, the year that I got diagnosed and I felt a lump and I shared it with my husband and my mom.

And I said, Hey, you know, we have a really strong history of family cancer. I think this is what it is. And of course they wanted to settle my nerves and know it’s probably not that. I actually waited a few months to actually go into a provider. And that was a women’s health clinic. Because again, as a young adult, you don’t really have a whole team of doctors at that point.

So I went into an OB GYN and I mentioned, Hey, I have a really strong family history. My maternal grandmother and aunt had both passed from breast cancer. And so I said, I really want to have this looked at my challenge and frustration was that the provider very confidently said right off the get go.

This is just a cyst. It’s nothing to worry about while, you know, it’s something that I admired that she was trying to keep me calm. I would have liked to have a little bit more transparency and said, we’re going to check this out and not just. Give me false hope. She did request a mammogram, which is not typical for women under 40 to just get them regularly.

And so at that mammogram appointment was when the radiologist did bring me in, after the imaging was done and privately shared with me, he said, I can’t really give you the official results. This is something your provider has to share with you. But what I’m looking at does seem like breast cancer. They was frustrating because it was just written off as something that was.

You know, my Newt and that wasn’t the case. And I think it’s also challenging because as a young adult, if you don’t have a whole range of doctors, I think that that is a challenge where it’s, who do you go to first? I was lucky in the fact that I’m a female. So I went to my women’s health doctor because it was in my breast.

Had it been anywhere else or anything else? I don’t know that I would’ve gotten results that quickly. Thank you for sharing that. And I think so often too, we, we don’t prioritize taking care of ourselves in general, right. Or going to that annual. Doctor’s appointment and getting just a physical exam or baseline lab work too.

So that’s also a great point in that we’re not always as young adults invested in the health care system, you said sometimes this cancer diagnosis is your first real time being in the healthcare system, because we’ve been in transition. We’ve been in college or graduate school or moving cities. And so we’re not often well-established.

And that’s a really great point to bring up about who you go to first. Well, that was really important from my perspective, what you’re talking about there, having some sort of primary care physicians. That you can contact to start the process. I didn’t have that when I got my diagnosis of a tumor in my head, the way to check this because I was experiencing vision issues and balance issues.

And so I went to the eye doctor thinking it was not a big deal. And then I went to the ophthalmologist and they ordered an MRI at that point. But then actually trying to schedule an appointment with a neurosurgeon was almost impossible. They were quoting me weeks to a month to get an appointment. And there was no way I was going to make it that long.

I can tell you the pain I was experiencing. And I actually had to establish a primary care physician and have them advocate on my behalf to get me an appointment sooner, to tell them how serious it was. So they almost don’t take your word saying I’m very sick over the phone because they’re like, oh, you don’t really know, you know, you’re young.

It could be anything you can wait a little bit. And the truth was is that if I would have waited one or two weeks, I would have been. The tumor was so large in the center of my brain. At that point, sitting in my spinal fluid, that it would have been very dangerous. And so just not knowing the way to kind of work the system, navigate the system faster was a detriment to me.

And now I know that obviously, and it’s important for us to share that. Now you all spoke a little bit to this earlier, talking about your family and friends and those relationships. And so not only are you advocating for yourselves. The clinical setting or with the doctor and with the team, but how do you have to advocate in terms of your family and friends?

You’re receiving a ton of information upfront at your appointments, but not everyone can fit in that little clinic room. So how are you spreading that information or what challenges did you have as a young adult in trying to translate what was told to you about your diagnosis to those in your life?

That may not have an understanding. That was probably the number one issue that I faced throughout my entire journey when I was at Texas oncology and MD Anderson, just because I think the assumption was is that I could take in all of this information and I had the bandwidth to then share it with the rest of my family.

But the truth is my memory. Terrible because there was so much going on and I would share bits and pieces and it would actually further confuse my mom and dad. And it wouldn’t give them the full, clear picture for why my surgery was canceled or why this was happening or why my tumor was getting smaller, because I didn’t really understand that myself either.

I was just tired of being on a rollercoaster back and, you know, up and down, back and forth. And so it was kind of lost in translation. The time. I was just looking at my watch or my phone and saying, this is my next appointment. Okay. That’s all I can focus on right now. I can’t think two steps down the road.

Yeah. And just to add about, you know, distributing information to family and friends, I think that was also really stressful point because you would get like text messages from family and friends. Well, what happened and exhausting. Cause you feel like it’s an added job. You’re not feeling well that day and maybe they wanted to know how your chemo went or your surgery.

It’s just another added responsibility where there was times that even if I was just feeling very down, I didn’t want to respond to anybody would make, be take three or four days before I would even respond to a text message. And I would get some responses that were either very understanding or. Oh, well, you can even respond back to me and you can let me know you were okay.

And that was a little bit frustrating because I’m like, I didn’t feel well today. I didn’t want to be on my phone. I just wanted to sleep all day long and not really have to worry about filling people in my husband was a really great caregiver in that he would take on all of those tasks. He would navigate insurance and call insurance.

If I didn’t feel up to. He would update the family and say, you know, Rebecca is not feeling well today. She just wants to sleep. If there’s anything you want to know, text me, call me, update you. But that aspect of it almost felt like a second job because I had a lot of people that, of course well-meaning wanted to know how I was doing or what was next in the plan.

But it was also really challenging too, to have that added to my plate at the time specifically, since we grew up in India, our immediate family is in India. Honestly, I did not doubt my parents for two years. My parents were older and my mother’s brother, he died of cancer. My uncle. And I remember that was, it was in the eighties and it was really painful.

So being able to explain what is going on to somebody who is so far away and who has no clue about the system is extremely challenging. In some sense, you’re kind of alone. But in this case, we made the decision that I just couldn’t handle the stress. Having to handle my parents worry. We figure that it’s easier to sort of just navigate it by ourselves.

Thank you for sharing that. What about reintegrating back into your life? What did that look like for you specifically as young adults? I would say that it took me a really long time to get back into the swing of things. I again, was having really hard time during the diagnosis, understanding my body. And I remember seeing people that kept jobs.

Kept going to school during their treatment. And I just felt weak. And I was really hard on myself instead of explaining this to my provider and my care team at the time, like I just have severe fatigue. And so it took a long time for us to develop a plan that was going to work for me. So even after my diagnosis, I still took about a year before I returned to work.

I went back on to school and I went on to pursue my master’s in public. ’cause. I was just so inspired about everything that I had went through that I wanted to work in health going forward, but it took a long time and a lot of patience with myself and grace, because I just felt like I was being really hard on myself during the diagnosis.

I realized later that I didn’t have to be everybody navigates their experience differently. And some will experience side effects maybe heavier than others. Everybody’s path is different. And so once I learned that it was a little bit about as hard on myself, but it did take time. And even to this day, I still feel the effects of fatigue.

Like Brian mentioned earlier there’s days where I do feel bad because all my friends are ready to go. Have energy to go do this and that. And when I reached the end of the week, all I want to do on the weekend is rest because I have a really stressful work week. So yeah. I still experience a lot of the effects for my cancer now, four years out from it.

And I don’t know if that’ll ever get better, but it’s something that I’m just kind of learning to live with, going from. You know, reentering society, as you talked about it, I use the whole mission of getting back to running, to run the New York city marathon, because that’s what I had to cancel the first time around when I was diagnosed.

And that was really the only thing that was driving me forward for years. And so once I finished that goal in 2018, which was about three years after my diagnosis, I didn’t know where to go next. After that, to be honest, And it’s difficult because I can’t run long distances anymore and do the same thing I did before.

And you feel certain things that remind you that you had cancer or still have a piece of it living in there somewhere in your body, and then you have to kind of access. That and figure out ways that you’re going to be able to overcome that and turn it into a positive like we were talking about earlier.

And I think that that’s a real challenge. I know that we built up a lot of mental strength and strong willpower throughout this process, but there are some days like Rebecca mentioned where it’s just not enough and you just want to rest and that’s okay. You know what I found? Post-cancer the most difficult thing for my body.

Believe it or not is. And that’s difficult because I consider myself to be an extrovert. My Myers Briggs are ENF J that’s a difficult thing when you can’t speak for long periods of time. And so that’s something I’ve really had to accept that it’s not going to be the same and just kind of try and do a balancing act to be the best version of yourself and lift your best life.

So there’s a lot of positives to this that I would never trade my diagnosis for. Okay. It’s changed my life. I told you I had met my wife because of this. There are all these positives that I try to think of more, but, you know, there are other things that have happened at work where coworkers, her sister was diagnosed with brain cancer, very similar to mine.

And I was able to direct her to my oncologist who was really impactful on the trajectory of my care. And if I hadn’t been diagnosed with cancer, maybe that person has a worse experience. And then not soon after that, my aunt was diagnosed with breast cancer and she had to go to MD Anderson and she didn’t want to go by herself.

And I said, oh, I happen to know the ins and outs of those buildings. I’ll take you. And so that’s another instance that wouldn’t have happened if I didn’t, if I wasn’t diagnosed with cancer, the trajectory of my life has forever changed in a positive way. In my perspective. Thank you for adding that perspective can be life-changing.

Thank you all so much for your time today and for being willing to be so open and vulnerable about your own experiences and your journey.

Thank you to Laura, Rebecca Ryan energy for their time, expertise and authenticity. We’ll see you back here next week for part two of this conversation. 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 Y A’s impacted by cancer email column.

That is C a L N at Austin dot Utah. Dot 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 O 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. Dot U Texas dot E D U. You can also follow us through our chair, Dr. Gail at cart on Twitter at S Gail at cart at cart is spelled E C K H a R D T. This is Kristin win for cancer uncovered. See you next week. Thank you for listening and learning with us.