‘What cancer means to me’

A cancer diagnosis may seem like a universal experience, considering the millions of people who are diagnosed each year. (In January 2022, the American Cancer Society projected that nearly 2 million Americans would be diagnosed with cancer this year.) But those who have been diagnosed also know that it’s a deeply personal, individualized experience — no two individuals facing cancer will experience it the same way.

The American Cancer Society works to improve the lives of people with cancer and their families through advocacy, research, and direct patient support. Below, two cancer survivors — one cancer researcher, one entrepreneur and nonprofit founder — share how their diagnoses changed their perspectives and gave their lives a new direction.

“Through this terrible process and what I’ve been through, it gave me a new perspective as well.” - Kristine Tesauro, founder of Catch Some Air and the Stay Happy FUNdation

I was raised in a family of eight kids, so I had a big family, always had lots of siblings to play with. My parents were pastors, so we were a very faith-based and a very close family. They were always the people I leaned on and my best friends.

My brother Jason was diagnosed with lymphoma when he was 15. He went through about a year of treatment before he caught a flu that was going around. It was too much for his body to handle. But before that, he was always one of the most positive people. He was always really confident going through treatment; he had such a good attitude and would do anything that people asked him to. He was still playing sports all the way up until the end. He was kind of the center of our family; he glued everybody together. And it left a really, really big gap when he passed away.

I was eight when he was diagnosed, nine when he passed away. Even though he went through that, I never really thought about health and wellness that much. I always just was like, yeah, I’m healthy, I’m gonna be fine. Little did I know.

I was diagnosed with acute lymphoblastic leukemia in 2015, when I was 20 years old. It started out as getting [low-grade] fevers every night, and then when I’d wake up, they’d be gone. So I would just kind of continue and be fine, but it just kept happening. I got a weird infection on my eye; it turned red and swollen. That didn’t make sense either, but then that eventually went away, and then it escalated. Whenever I walked upstairs, my heart rate would get really fast; sometimes I would go to work and start to feel dizzy, like I was gonna black out if I didn’t sit down.

When the fevers came back again, my roommate prompted me to [get checked out] because she worked in the hospital. She was like, “You need to just come in …. just figure out what’s going on, because this isn’t normal.” And I was like, “OK, I guess this isn’t normal.” I was just working at a normal job, saving up, trying to figure it all out and save up for whatever I planned, and then [my cancer diagnosis] hit and kind of just put everything on pause.

When I first showed up to the ER, they checked my vitals and my temperature and everything looked good again. They almost sent me home, but since my roommate worked [at the hospital], she was telling one of the doctors about my symptoms. Eventually, they drew my blood and then 10 minutes after that, they shuffled me off into a separate room and put on masks and gloves and shut everything down. And the doctor came in and said, “It’s looking like leukemia.” And then he left.

I didn’t really know how to react in my head. And I was like, that can’t be possible, because we already did that. And then it was just thoughts of, “Am I gonna make it out of this?” And then I was thinking of chemo and years [ahead], and I just started breaking down, crying at that point. My friend came in because she was working and I told her, and then she called my [family]. It was kind of a whirlwind from there. I ended up having to get three blood transfusions that night. I almost waited until the weekend, because I had off work; I thought, I’ll wait and see if it goes away. [The doctors] said if I did wait for that weekend, I probably wouldn’t be here right now.

I was in treatment for two and a half years, a mix of chemo infusions every week for a year, and then chemo infusions once a month for a year and a half, and chemo pills every day. I was treated in the pediatric [wing] because my cancer was pediatric cancer. It was also really hard watching all the kids go through it. I’m feeling all these terrible things, like not being able to walk, or talk, or swallow food, or just being so nauseous — like I couldn’t move sometimes. But then at the same time, I’m seeing a toddler go through the same thing, and it’s just heartbreaking to watch that, and [watching] families going through that, the parents and siblings. My sister, Brianna, had to watch me the whole time. At the start of it, she was in between her jobs, she had just quit and was gonna go on a long road trip. So she decided she was going to spend the rest of my treatment helping me out. She moved in with me into my grandparents’ house. She took me to every appointment. She would sit on the couch me with mefor hours and hours and watch TV shows with me, because that was the only thing I could do.

I guess [my diagnosis] kind of gave me a new direction in life, because I didn’t really know what I wanted to do or how. Through this terrible process and what I’ve been through, it gave me a new perspective as well. Life is short. It’s really good to appreciate the little things and what I do have. And it’s made me very grateful and thankful for everybody around me and for little things like being able to walk and talk and see.

[My diagnosis] shaped my future too, because now I get to help kids going through the same thing that I went through. And that’s the best part of all of it. I get to meet these amazing kids, and amazing families and help in a small way and brighten their day while they’re going through those tough times. And that’s been like my favorite part. So now that I am at this point, I don’t think I would change anything, because then I wouldn’t be where I’m at now.

I have this memory from the very first time I was going into infusion [in pediatrics]. I sit down and there’s a little girl coloring at a table and I was like, oh, I’ll color too. So I join her with a little coloring book and she starts talking to me and she’s like, “Hi, what’s your name?” And then she keeps going. She’s like, “What do you wanna be when you grow up? You know, you’re not gonna be in treatment forever. You can still have a future and be fine.”

She continued, like, “I’m doing really good. And I’m gonna be like an actress when I grow up,” and I was looking at her like, you’re amazing. You’re like this positive and you have all these beautiful dreams. I just have so much respect for those kids and what they’re going through, because I feel like they handle it better than all the adults. They are so resilient and strong and like, still being kids through it. Seeing their bravery helped me find mine.

“I realized how privileged I was, how lucky I was to be able to have treatment that was gonna …. allow me to go on with my life again.” - Dr. Chad Pecot, lung cancer specialist, head of a research laboratory and a biotechnology company making medicines for cancer.

I grew up a pretty inquisitive kid. I was always super interested in understanding how things work. I don’t think I have that classic story of how people became physicians. I was more interested in the way things work mechanically, outside of the body.

Biology probably would’ve been regarded as my least favorite subject, through high school and even college. But I now spend probably 90 percent of my time thinking about the ways in which the body works, because of the implications they have [in] trying to heal people … from cancer. I certainly did not come to medical school with a prior interest in medicine, unlike many of the people I went to medical school with. I actually came to college with the idea of becoming an engineer. Growing up, I was good at math, good at physics. Those are things I excelled in that I really enjoyed.

It really wasn’t until my second year of college, when I was 20, that I ended up getting diagnosed with testicular cancer, that even the thought of going into medicine occurred to me. It was at that point, when I got sick and started being surrounded by people with cancer, that I started thinking, I want to be these people’s doctor.

My first semester of my second year of college [was when] things began to change. I felt fine. In fact, I felt totally healthy — playing sports, working out at the gym, going out at night clubs in Miami. Then I noticed a small lump on my testicle and it didn’t hurt. It was maybe the size of a pea. I didn’t think much of it at all, but after about three weeks, I just figured, all right, this thing’s not going away. I figured, I probably ought to get it checked out. I went to the student clinic, and the doctor referred me to her husband’s urologist.

That’s what prompted an ultrasound and some blood testing and meeting this urologist and him telling me this looks like it could be cancer. This was on a Tuesday, and he basically said, “Well, we can take you to the operating room on Saturday in the morning, and we’ll cut it out of your left testicle and you’ll walk in and walk outta there.” Being an engineering student, knowing nothing about the body, I basically felt like, Okay, then I can go on a date that night. I thought, if they could cut it out, I’d be fine. That’s how cavalier I was about it all.

The way in which testicular cancer spreads, the testicles descend from around where your kidneys are high up in your abdomen, down into the scrotum as you’re developing as a fetus. So it turns out that the place that testicular cancer spreads normally is actually up to the lymph nodes, high up in your abdomen. I had to come in for a cat scan about a month after the surgery. And at that point, you know, I did my midterm exams back in school, I was healing up, feeling good, getting back to normal. But the next scan confirmed that it had spread and that they could see that the testicular cancer had spread into lymph nodes inside my abdomen.

And the moment that I heard that, that was the first time I ever felt my life rocked — I was very shocked and scared of what this could actually mean.

The odds of survival for testicular cancer are very high, and I was really fortunate that there was an American Cancer Society Hope Lodge Community (R) right across from the cancer center. And they allowed me to stay there with my mom as I underwent cancer treatment. And when I was [staying] there, I started realizing not everyone has it as good as me. Being surrounded by people there, who are going through different kinds of cancer treatments different from mine, is when I really began realizing wow, cancer is taking a lot of people’s lives. I was being told “You’ll still be fine, we’re gonna give you chemotherapy, your chance of surviving is very high.” But I’m there befriending people who are my age, some of whom were even younger than me, and they weren’t being told those kinds of things. And that really bothered me; that really made me feel like it’s not fair. I realized how privileged I was, how lucky I was to be able to have treatment that [would get rid of my cancer]and allow me to go on with my life again, but many of them wouldn’t.

A friend I made there was 12, her name was Bianca. She was the most precocious 12 year old I’ve ever met and known since. She had just this amazing, bright, luminescent personality; everyone around her loved her. She was very charismatic and very outgoing. She knew everybody by their first name in this building. I was just really drawn to her. I mean, I was this college kid and she was almost like a kid sister. She had osteosarcoma and she was in the process of getting chemotherapy, just like me. We called each other “cone heads” ‘cause we both, you know, had no hair. We were just really playful with each other and I could tell, she looked up to me, she looked up to me like you would an older brother. With time I got better, and she did not.

Within a year of my treatment, I was already interviewing for medical school. I only applied to one place, and I got into the University of Miami’s medical school and I stayed there. Going into my first year of medical school classes, I would go and visit Bianca, because she was still getting treatment. And during the course of this relationship, which lasted about two years, I kept on hearing that the treatment was not working. As I [became] this engineer transforming into a physician, [as well as] a cancer survivor, it was starting to dawn on me that Bianca was likely not gonna survive. And that, that just gave me this very, very strong indignation that this is not fair. And that certainly cemented my desire to be an oncologist.

[Getting into] lung cancer research really came about when I went to my residency and met my first mentor, Dr. Pierre Massion. Pierre was studying lung cancer and was just super jazzed about making a difference in lung cancer. When I met him, I knew this was a guy I was gonna want to work with. It just made sense to me that if you’re going to work on something and pour your heart into it, lung cancer makes a lot of sense. We had made so little progress at that point, [in researching] the treatment of lung cancer and our understanding of lung cancer. I’ve always kind of regarded lung cancer as like the great white shark of all cancers: It’s by far the worst cancer killer in the United States and the world. I have great admiration for all the decades of hard work that have gone into understanding the body more and more.

There’s a lot of things that get me really excited about what’s going on with cancer research, [like] a better appreciation with how the cancer cells interact with their surrounding tissue within a tumor. For a long time, people have actually regarded cancer as sort of a ball of cancer cells. But we now know that a tumor consists of essentially constituents of the entire body — all tissues in the body have been found inside tumors. So there’s a growing appreciation with how much this wild, diverse network of different tissues is playing a role inside a tumor.

[There are also] many different types of therapies that are beginning to be developed that are now helping unpack and unwind that complexity, within the tumor. If you look at some of the biggest breakthrough therapies, like immunotherapy or anti-blood vessel therapy, these are not necessarily therapies that directly attack the cancer cells like a chemotherapy might. One thing that we’re working on is seeing how RNA can be used as a medicine. Now with COVID and the vaccines, there’s this huge surge in interest in how RNA can be used as medicines. We’ve been involved in trying to create RNA-based medicines that would allow us to be able to target problems within tumors we would otherwise never be able to target with traditional medicines.

There’s no such thing as just cancer colloquially, as we know it — the big “C” Cancer. It’s truly many, many thousands of different types of diseases. There are really no two cancers that are the same. They all have fingerprints, if you will, that make them unique. We definitely know that applying the same treatment to two different tumors is gonna have different types of outcomes. And so, if we truly are going to be able to cure all cancers, we’re going to have to be able to approach them and understand them individually and uniquely. I’m now 42. I’ve been cancer free for 22 years. No one needs to convince me that we can cure cancer.

The American Cancer Society has been incredible to me, starting from having cancer at the age of 20 and [staying] in an ACS Hope Lodge Community, and then funding my research down the road.When I first came to UNC as a junior investigator with a brand new lab, one of the very first grants I got was an ACS-mentored research scholar grant. That was really fundamental and critical for me at a really important stage in my career. And it gave me five years of support to be able to run my lab and to get it set up.

These interviews have been edited and condensed.