When Life Takes a Turn: When Young Adults Get Cancer

Dr. Reidy-Lagunes:
You're 20-something, just out of class. Or newly married, landing your first job. The world is yours to plan, to explore, to invent, to start living. Then you wake up with a lump, and your doctors deliver the news that darkens the horizon and your world turns upside down. Makes you question everything. What do you do? Who are you now? Ninety-thousand people are diagnosed between the ages of 15 and 40 with cancer. Let's talk about it. Hello, I'm Dr. Diane Reidy-Lagunes from Memorial Sloan Kettering Cancer Center and welcome to Cancer Straight Talk. We're bringing together national experts and patients fighting these diseases to have evidence-based conversations. Our mission is to educate and empower you and your family members to make the right decisions and live happier and healthier lives. For more information on the topics discussed here, or to send your questions, please visit us at mskcc.org/podcasts.

Irene:
Hello, I'm Irene and I'm 26 years old. A year ago at 25, I was diagnosed with osteosarcoma. On January 28th, 2020 at 8:00 AM, I went in for an MRI for chronic knee pain convinced that I just had a meniscus tear. Afterwards, I commuted quickly to my grad school, excited for my second day of my second semester. I introduced myself to new professors, organized my notes, had lunch with a few friends and bought my favorite ginger snap cookies. It was shaping up to be a promising new chapter of my grad school career. At 5:00 PM that same day however, halfway through my class, I checked my phone and saw that I had five missed calls from my doctor. He said, "I'm sorry, but they found a tumor in your leg." Even worse, the tumor was looking cancerous. I sat on the steps of my empty stairwell and I began to cry. With those 10 words, my identity and future as a grad school go-getter and eventual speech pathologists crumbled ahead of me and left uncertainty in its place. My first instinct was not to tell him my parents, with them just beginning to treat me as an adult and not wanting to worry them more than I'm sure they already did on a daily basis. A second later, I realized the idea was stupid. I asked them to pick me up from school, feeling lost in my identity, except that I am their child. I was forced to withdraw from grad school in anticipation of the intense treatment plan ahead of me, because on February 14 I had to grapple with my new identity as a cancer patient. And not only that, at twenty-five years old, I was a pediatric cancer patient. It was genuinely hilarious when nurses would automatically use their pediatric voice with me until I reminded them, "Girl, we're like the same age." They helped me pick up the pieces of my identity. They gently and persistently reminded me that yes, I am a cancer patient, but also that I am still a future speech pathologist and grad school is still ahead of me. They also reminded me that these plans that I have for myself – graduation, traveling and living an independent life – are still in my future.

Dr. Reidy-Lagunes:
Having cancer as a young adult is clearly a very different experience than dealing with it later in life. As you can hear from Irene's story, it can consume your newly-forming identity. Joining me today is Hadley Maya, social worker who supports patients and families that receive care through our Center for Young Onset Colorectal Cancer. Hadley, welcome to the show.

Hadley Maya:
Thank you so much for having me. I'm happy to be here.

Dr. Reidy-Lagunes:
It's great to have you here. I want to start off by talking about that shock and that loss of identity that Irene said about two or three times, which really struck me. What is your experience in dealing with our patients with cancer that are just so young, particularly in this age group?

Hadley Maya:
Yeah, Irene spoke beautifully about many of the elements that our younger patients experience and face. But I think that the shock is a huge element. Being diagnosed with cancer at any age is an enormous shock, and cancer in young adults is so rare. So nobody is expecting to get cancer at age 25, 35, even 45. And the expectation that we all have is to be healthy and vibrant and have that sense of invincibility. But the shock is enormous, and immediately you have to kind of go into overdrive to really make sense of it.

Dr. Reidy-Lagunes:
She seemed catapulted back into childhood, calling her parents and being sequestered with other children and talking about how the nurses were talking to her as if she was a young child. Can we talk about that a little?

Hadley Maya:
I think part of it has to do with needing support and needing caregiver support, going through a cancer diagnosis and treatment. You're working so hard to be an independent adult and to go out into the world and do all of the things that make you independent, and then suddenly you have this enormous need for care and for support. And so I think that it can be pretty easy to feel like you are regressing. Many people move back in with parents or family members. And to feel like you've many of these young adults have just graduated college or just gotten their own apartment, and to feel that dependence on especially parental figures can be counter-intuitive at that time in life.

Dr. Reidy-Lagunes:
And I've also heard again from this young patient population of the FOMO – the fear of missing out – you know, there's parties and boys and college experience and everything is so exciting. And all of a sudden that just gets completely paralyzed. What could that potentially do to a young patient's psyche, if you will, just emotionally, psychologically, when they do have that fear of missing out? And in fact, the fear is real.

Hadley Maya:
You're speaking to another pretty massive element – which is the isolation that many young people feel going through a cancer diagnosis and treatment – that suddenly you are different. You're not doing the same things as your peer group. You're not doing the things that you expected to be doing. And I think that that can cause a lot of loneliness, isolation, and also certainly anxiety, depression, sadness, just feeling alone and all of the emotions that can come with that.

Dr. Reidy-Lagunes:
I want to share Srinivas, who was just going to jumpstart his career, married, looking forward to a family, and let's listen to hear what he has to say.

Srinivas:
Hi, my name is Srinivas and I was diagnosed with rectal cancer at 32 years of age. When I was first diagnosed, I was really in a lot of shock because I wondered why it had to be me at this young an age to be diagnosed with cancer. I had my whole life ahead of me and I didn't know what this diagnosis meant for me and how it would allow me to lead a normal life. I was a young husband when I was diagnosed with cancer, my wife and I hadn't started a family, and my oncologist and surgeon knew that that was something I had to be made aware of. And we decided to preserve my fertility. I have been in remission now for many years and I hope to stay that way.

Dr. Reidy-Lagunes:
Srinivas is now the proud father of two healthy boys, ages six and three. But as you know, Hadley, firsthand, the fertility issue is an enormous struggle and challenge for our patients, some of whom are about to embark on families and can successfully have families, and some of whom cannot because of the treatments that they are about to endure. So it's certainly raised by the medical teams, but can you talk to us a little bit about that particular struggle as it relates to our patients that have to have these conversations?

Hadley Maya:
What I always come back to when I think about the young adult population is just, sort of, constant shifting or recalibration of expectations. We have expectations about what's supposed to be happening and excitement about that and sort of a plan that we're following and suddenly all of that becomes interrupted. And there's a lot of loss that comes with that. And some of the losses are temporary, some are permanent. With loss, of course, comes grief. The conversation happens right off the bat, and so it's often folded into that very chaotic time at the beginning of treatment, right after diagnosis when so many decisions are being made and people are so overwhelmed, which can make processing and making decisions around fertility that much more difficult. But we do have a lot of support around that at MSK.

Dr. Reidy-Lagunes:
Certainly in our young adult populations – both men and women – we want to make sure that these questions, if they're not being brought up from the medical team, that the patients themselves are empowered to at least ask the appropriate questions. And there are patients that the treatment itself would make the fertility piece impossible. And that loss is real. I want to turn to another patient. His name is Abdullah and he was just getting started on his career as well when his world changed.

Abdullah:
Hi, my name is Abdullah and I was 24 when I was diagnosed with Hodgkin's lymphoma. And the first thing I did was actually just tell my parents while I was at the office, "I'm going to have to start going through treatment." After that I actually then moved on to telling my friends. It was kind of tough because I was also at a six month relationship with my then-girlfriend, now-fiancé. I actually told her that if you want to walk away or put this on hold, feel free to do that because it is a bit of a tough situation to be in. And I gave her the option. She said no, she wants to say and help me with it. She ended up being my primary caregiver actually. It was pretty tough. None of your friends can relate. So I would complain to people about things and we were getting a lot of sympathy, but it's just very difficult for people to relate with what you're going through, so it did feel very alone regardless of how many friends you had. But even when I would go to the cancer center, it felt even more lonely because the average age, when I would go to chemo, would be somewhere in the sixties, somewhere even like the seventies. Being around the hospital, I felt very out of place there. I never actually caught on until they had a survivorship program for other young adults. That was actually the first time that I thought, "You know what? This would actually be helpful." I felt like my experience was so different from other people. I was worried about how it would affect my career in terms of being on medical leave for six months, and I was hoping to be promoted. So that was one of the things that I was really worried about. And there were times where I would go out or I would run into some old friends and they wouldn't even recognize me actually, because, you know, I've lost so much weight and my hair has fallen out. After you go through something like this, there's a bit of a shift in how you see your career or what you want your career to be. I realized that I was way too focused on what other people think about my job and the money compensation, and I realized this isn't what I wanted to do for the rest of my life. Going through cancer actually led me to a pretty big career change into something that was much more mission-driven and also more of a work-life balance so I could spend time with my family and my fiancé.

Dr. Reidy-Lagunes:
So many of Abdullah's themes, in his sharing of his journey, resonate with many of our younger patients. I wanted to sort of highlight a couple of them. One was the idea of, he gave his girlfriend sort of a get-out-of-jail-free card. Like here's your out if you want it. But at the same time, having so many friends around him but feeling as if they really didn't relate. They wanted to support him, but they didn't know how and he didn't know how they could. And obviously that led to a lot of loneliness, as you talked about before. Could you talk a little bit, Hadley, about those feelings of having lots of friends, a girlfriend around, and still not being able to relate, if you will, until he came up and realized that we have this survivorship program?

Hadley Maya:
Sure. I think that the disclosure of a diagnosis and the process throughout your entire cancer journey of sharing what you're going through with the people around you is complicated no matter what, but for younger people, there tends to be more layers of social support. So you have your family, friends, social life, job, employer and your colleagues, people that you may be dating. And so figuring out how to navigate all of those different areas of your life and your social life and how to talk about your diagnosis with all of those people can be such a challenge. The experience of having cancer as a young person is rare. Many times when a young adult is diagnosed with cancer, they're the first person that they know or that's in their social circle who has had a cancer diagnosis and so that can, right off the bat, feel very, very lonely. And I think something that Abdullah talked about as well, was this kind of dual or compounding isolation, both from your healthy peers but also from the larger cancer population. I can't tell you how many times patients come and say, "I really feel like I'm the only person my age in the waiting room," or "I never see anybody who looks like me." That leaves somebody feeling quite alone.

Dr. Reidy-Lagunes:
What about the finance piece? I mean, some of our patients, they still have college loans. They're just starting their careers. They may not be able to work anymore. Any advice in that piece and potentially any other resources they may be able to tap into?

Hadley Maya:
That's a great question. If the patient cannot work, which many of them can't – you know, they have to take time off or go on disability for a period of time, and many of them don't have significant savings quite yet, or don't have that family support built in – that can be a major stressor for this population. So there are various programs, both at MSK and in the community, that offer financial support. There's also support, whether it's through the medical team or social work, to be able to help patients access information about going on disability, what benefits are available to them, what they're eligible for. So being able to have that conversation and know that you're not alone in figuring this out is a big part of it.

Dr. Reidy-Lagunes:
One of the most challenging places to have that communication are for young patients that are now just recent parents. Any advice on how to potentially communicate that piece to their kids when they're first diagnosed and facing these life-threatening diseases?

Hadley Maya:
It's such a painful experience for so many people and it's so unique to each individual family. There's no one script, generally speaking. We do find that children benefit from open and honest communication about a parent's diagnosis – and it looks a little bit different depending on what age the child is, and there's some more specific guidance for each age group – but that's sort of the general model that we follow so that children don't feel alone or afraid or have questions that aren't being answered and that their imaginations don't sort of get the best of them. We find that having these conversations as soon as possible and being as upfront as possible is helpful for the children's coping. We have a wonderful program through the social work department at MSK called Talking With Children About Cancer. It's really just all different types of support – individual counseling, Information on our website, book recommendations for parents and children – it's a support group for parents to be able to come together and talk about some of the challenges of parenting while going through a cancer diagnosis, which is also open to caregivers. I've found that that's been one of the most helpful resources for so many of my patients who are parents.

Dr. Reidy-Lagunes:
Can you just talk about the AYA program and the resources available to patients here at MSK?

Hadley Maya:
There are two separate programs. One is the TYA program, which is a community for MSK patients ages 16 to 30. It offers various opportunities to connect with other people in this age group, partake in social activities and access resources, a lounge, a physical space, and also a social media platform where patients can connect with other young adult patients in treatment and access events that are happening and ask questions and engage with other patients, but also MSK healthcare providers. And then we have the AYA program – AYA at MSK – which basically helps adolescents and young adults really meet the various unique challenges that they're facing during treatment. It basically brings together all of the various specialties and services that we have at MSK to support our young adult patients in a more holistic way.

Dr. Reidy-Lagunes:
Great. Can you share a little bit as to why we've invested so much in this patient population?

Hadley Maya:
There are so many unique challenges that this population of young adults face when diagnosed with cancer. So we've spent a lot of time talking with young adult patients, doing research, trying to understand what are these needs and how can we meet them, from the younger young adults to the older young adults, and how do we create programming that meets those needs? We have our Center for Young Onset Colorectal and Gastrointestinal Cancers, which is a specific center for young onset GI patients because we are seeing a rise in GI cancers in people under the age of 50. So we have a variety of programs for that group as well, including peer support and support groups and creating access, better access, to all of the different support services that we have at MSK.

Dr. Reidy-Lagunes:
So Hadley, on a personal note, you and I have shared so many patients and been through the journeys that have been quite challenging and difficult. Could you share, as a social worker doing this all day long, it must be challenging. I'm sure it's a privilege, but can you talk about what it's like to be caring for so many young patients day in and day out?

Hadley Maya:
Sure. It's a great question and I think that the experience is felt by all of us who take care of these patients, and it can certainly be an emotional roller coaster especially when we are working with patients who are facing advanced disease patients who are at end of life and everything in between. There's a lot that we can take home with us. So many of the things that we've talked about that these young patients face or feel when they're diagnosed – the shock, the kind of recalibration of expectations, of what life was supposed to look like, the loss, the grief – it can be felt sort of as a parallel process for us as the clinicians and caretakers of these patients. And so I think there's no way to do this work without sometimes taking it home, but I would say that the privilege and being able to sort of witness these incredibly powerful moments of people's lives far outweighs the pain that we feel sometimes taking care of them. And also just having support for ourselves – you know, supporting each other as the care teams and making sure that we're doing our best to take care of ourselves – is a hugely important piece of it as well.

Dr. Reidy-Lagunes:
Amen. Hadley, thank you for all you do and especially for being with us today. I learned a tremendous amount from you.

Hadley Maya:
Thank you so much for having me.

Dr. Reidy-Lagunes:
Thank you for listening to Cancer Straight Talk from Memorial Sloan Kettering Cancer Center. For more information, or to send us any questions you may have, please visit us at mskcc.org/podcast. Help others find this helpful resource by rating and reviewing this podcast at Apple Podcasts or wherever you listen to your podcasts. These episodes are for you, but are not intended to be a medical substitute. Please remember to consult your doctor with any questions you have regarding medical conditions. I'm Dr. Diane Reidy-Lagunes. Onward and upward.