AYA Cancer Awareness Week: Creating Welcoming Spaces for Support and Advocacy With Dr. Lauren Ghazal, Megan-Claire Chase, and Allison Rosen

Adolescent and Young Adult (AYA) Cancer Awareness Week, April 1 to 5, 2024, is a time to shine a spotlight on adolescent and young adult cancer patients and survivors. To commemorate the week, Lauren Ghazal, Megan-Claire Chase, and Allison Rosen, all members of the Oncology Data Advisor Editorial Board, sat down for a conversation to highlight the issues that AYA cancer patients face, including fertility preservation and financial toxicity; the need to ensure that race, ethnicity, and sexual orientation are not overlooked when building welcoming support spaces for all patients; and the value of turning to the AYA community for support while also serving as your own best advocate.  

Oncology Data Advisor: Hi everybody, and welcome to this interview for AYA Cancer Week, which is going on this week from April 1 to 5. Today, I’m joined by three of our Editorial Board members: Dr. Lauren Ghazal, Megan-Claire Chase, and Allison Rosen, who are all actively involved with advocating in this space. We’re really excited to hear their perspectives today, so with that, I will turn it over to all of you for the conversation.

Lauren Ghazal, PhD, FNP-BC: Thanks for having us, Keira. I’m very excited that we have this platform and we have this opportunity to speak with other co-conspirators here who are real champions in the AYA space. I think we’ll each introduce ourselves a bit, and I can start.

My name is Lauren Ghazal. I come to this panel as an AYA patient myself—I was 26 when I was diagnosed with stage II Hodgkin lymphoma. We all talk about the timing of cancer diagnosis in the AYA period. Mine just happened to be in my first year of my PhD program, which is the foundation of learning how to do research, learning how to interact with patients and participants in clinical trials, and learning psychosocial work. I was also working as a Family Nurse Practitioner per diem as well. I quickly jumped from being in a patient room as a provider, as a nurse, to being a patient and then doing research. I will say that my experience as an AYA patient completely shifted the trajectory of my program of research. I’m currently an Assistant Professor at the University of Rochester. Last summer, I hit my five-year remission anniversary.

Megan-Claire Chase: Woo-hoo.

Dr. Ghazal: We talk about all these milestones that you perhaps celebrate or don’t as an AYA. That just happened to also go alongside my milestones in my academic career, which allowed me to pause a lot and reflect on, “Okay, how am I envisioning a program of research that really keeps the AYA at the center of all of my work?” A lot of my research work is in community-engaged AYA cancer survivorship and focusing on economic challenges around financial hardship and employment challenges.

I’ll pause here and pass it to Megsie.

Ms. Chase: So, I am known as Warrior Megsie in cancer-land, as I call it. I first got diagnosed with stage 2A invasive lobular breast cancer when I was in my late 30s. In fact, it was two months after my 39th birthday, so I’m at the older end of the AYA age range. I remember I kept being called “young adult” and I was like, “Why am I being called a young adult?” It was very weird to me to hear that term until I learned about this whole underrepresented category that I was now part of and will always be part of. For me, no one believed me. I wasn’t even old enough to even get a mammogram. There were all these tiny little things and major barriers of not being believed and being talk down to by a lot of the specialists, because I knew something was wrong for over two and a half years. A lot of biases exist in the medical community. That was what was happening to me, and I was not heard.

I really felt validated once I got the cancer diagnosis. Of course, it was still a shock, but it was like I knew all this time that something was wrong. Once I got into this community of AYAs, I had my chemo twins—shoutout to Erin, we still talk this day. I went to that infusion room for my first chemo, and I was the youngest person in there, and I also I looked really young too. It just really hit me in that moment—”I don’t belong here, yet I am here. Where’s the support? Where are the people that look like me, not only in age range, but also racially?”

Allison Rosen, MS: I will introduce myself. I’m Allison Rosen. I am an AYA colorectal cancer survivor. Everything you just said, I 100% relate to. I was 32 when I was diagnosed. I was actually working in a cancer research lab, so I had the knowledge about cancer. I knew my family history, I had a lot of information, yet I still got diagnosed. In the clinic where I was treated, everyone thought my mom, who was my caregiver at the time, was the patient. I really felt alone. Until I was actually introduced to other AYAs—adolescent young adults, I know we’ve said that already—around my age, even though not necessarily my cancer type, I didn’t realize that there was a community. There was a whole community that understood me.

Through a fun event at our zoo here in Houston, I had real conversations with people that just understood all the struggles that I was going through. I finally found my home. I found the support I needed. I found the friends that understood me better than my caregivers. Although our family and friends are amazing, there’s nothing better than another AYA that just understands you and can get all the struggles that you’re going through, which your caregivers might not understand. The importance of this week is huge—to shine a light on that gap. We’re not pediatric, and we’re not quite adult. There are unique issues that we as AYAs face.

I’ll probably start off the conversation with talking about one issue that is important to me and something I talk about openly, and that’s fertility preservation and sexual health. Like I said, I was 32 when I was diagnosed, and there wasn’t a fertility specialist at the place I was treated. I had to ask, because my friend said, “Allison, ask. You’re single. You want children. You should talk to your doctor about this.” So I did, and we had a whole conversation. I was going to freeze my eggs. I went outside of the institution to see somebody. I was going to freeze my eggs. Unfortunately, the day before that happened, I got really sick—to spare you the details, blood was everywhere—and I had to forego that and go through my treatment.

It’s something I’m super passionate about, talking about fertility preservation, because there are so many options for AYAs right now. I think it’s a conversation no matter if you’re 18 and you’re on that lower age, or if you’re 39. People need to have that conversation, that shared decision-making conversation, with you, your spouse, even if you’re alone, about if you want children and family planning for the future. Even if you have children already as an AYA, a conversation still needs to happen. I think fertility preservation and family planning are huge, and it’s one of those things in the AYA world that isn’t often talked about. It’s a platform that, again, I speak up about often and hope will be part of that first conversation when someone is diagnosed.

Ms. Chase: Allison, I speak about fertility preservation as well. I’m single—I think I’m chronically single, really, at this point—but I remember the first time I met my oncologist, she told me literally all in the same breath, “Okay, you’re going to need 16 rounds of chemo. Do you want to freeze your eggs?” Of course, all I heard within that sentence was “chemo” and “16 rounds of chemo.” I was thinking about my career, and I wasn’t even thinking about kids. I was like, “What? Fertility preservation, what?” That’s actually how I became a research advocate, because I was a co-author of an abstract about AYAs and fertility preservation and conversations with providers.

To this day, it just kills me that no one followed up maybe a day after saying, “Hey, you heard a lot of information. I want to make sure that you’re clear on what was said and what some potential next steps would be.” Did I even have time? Was there a window for me to at least have a consultation? Fertility preservation is still a lot of money, especially as we think of AYAs and where you might be in your career. You might still be in college or just starting out, or you may be where I was. I wasn’t where I wanted to be career-wise, and I had terrible insurance, though I was working for a large media company. It was terrible insurance. My only thought was, “Financially, how am I going to afford all this?” There was never that follow-up conversation to say, “Okay, I know that you’re single, and you may not even be thinking about this, but at least have the conversation so that you know your options.” To this day, it hurts me that that the conversation wasn’t had, so I’m very passionate about it as well.

Dr. Ghazal: You each brought up so many important things about fertility preservation. Now, I’m seeing more of a push for incorporating family planning and fertility preservation and restoration in those conversations. Fertility preservation and family planning are intrinsically linked to financial challenges, financial hardship, and considerations with your family, your supportive care partner, and your partner. For me, a lot of assumptions were made that I was in a straight relationship, that I was in a relationship to begin with, and that I could easily kind of access the supplies that you need to make an embryo within a few days. I had to have conversations with my provider that it’s going to look a little differently whenever I choose to start planning for a family. I was 26 at diagnosis, as I mentioned.

Allison, you brought up working in cancer research and how you had that knowledge. I studied economics before nursing, and I had worked as a Nurse Practitioner at that point for a few years. I thought I knew how healthcare systems worked, even like accessing your records. I thought I knew how to communicate with providers and how to advocate for myself as a patient. All that dramatically changed when I was diagnosed with cancer. I was in New York City getting treatment, and I distinctly remember running up First Avenue with physical slides from a positron emission tomography (PET) scan and my physical biopsy from a fine needle aspirate. I was like, “We are in 2018. This should not be this painstakingly challenging.” It should not take going through your PhD or having a bachelor’s degree; it should not take that amount of knowledge just to be competent and be able to function in our system. For me, that was my driving force. That’s what smacked me in the face in my PhD program to realize, “You need to study this. You need to look more closely at AYAs.”

We talked about how this week is AYA Cancer Awareness Week, and we know that AYAs are diagnosed within a certain time period. I know different countries have different starting and end points, but we typically capture this as being diagnosed between 15 to 39 years old. We know that there’s been an emergence of support, community-led support, and advocacy organizations who want to fully appreciate the unique experiences of AYAs. Coming to this, my question for both of you is, in your time in this community and having these experiences, has there been a resource that you feel is undervalued and underappreciated that you wanted to take the time to amplify in a way? Whether it’s a community organization, whether it’s a conversation that you’ve had with your provider—are there moments or organizations that have really stood out or that you feel haven’t gotten the attention they deserve?

Ms. Rosen: That’s a great question. There are so many amazing organizations. I could probably talk for an hour, so I’ll just say a few that I have utilized and really found 100% useful. Elephants and Tea is an amazing organization. I’ve written articles for them. They create this magazine, and I felt like the minute I read that magazine the first time, I was like, “Wow, I related to almost every story in that.” The magazine’s a nonprofit. They do a lot of things, but they curate a magazine for AYAs each month that can be put in a clinic or can be mailed to you. It’s stories about various topics that are important for AYAs. They’ve done writing workshops, and they’ve done all sorts of amazing things.

Another one that I’m involved in and I think is as amazing program is Teen Cancer America. They have a lot of different events. I did a makeup class with them with other AYAs. It doesn’t matter who you are or where you live, but a lot of their programming—both Elephants and Tea and Teen Cancer America—is online, so you can access it on your computer. Both of those have been amazing.

Then personally for colorectal cancer, , there a lot of good nonprofits, but there are three that I volunteer with on a regular basis. Fight Colorectal Cancer, the Colorectal Cancer Alliance, and the Colon Cancer Coalition all do amazing work in the colorectal cancer space and all have some sort of focus on early-age onset. Whether it’s research, connections, or programming, they all are amazing. You can connect with other colorectal cancer survivors and patients and caregivers that are young as well. Again, I could go on and on, but those are three colorectal-related and then two of many AYA-related organizations that have been vital in my survivorship.

Ms. Chase: I second Elephants and Tea and Teen Cancer America. I would also add Cactus Cancer Society. When I was going through my active treatment, they were actually called Lacuna Loft, but they changed their name a couple years ago. Through writing with Elephants and Tea, I just felt so seen and heard. Both Elephants and Tea and Cactus Cancer Society, with their writing programs that they have, really helped me process and heal. In fact, it was Cactus Cancer Society that published my very first piece, because I had taken one of their programs, Unspoken Ink. It’s so crazy that I never thought of myself as a writer, and ow I call myself a writer. I couldn’t believe it; I was like “Wait, what I have to say, you think others actually might want to read it?” And they were like, “Yeah, this is beautiful.”

In that moment, it was like a shift in my head. I realized that with my experiences as an AYA, as a Black woman, as someone who lives in the South—because I’m in Atlanta, Georgia—people wanted to hear what I had to say. When I had some stories published in Elephants and Tea Magazine, I was like, “This is amazing. What a great resource.” With Teen Cancer America, I have been really fortunate to give them some content on what it is like to be a Black AYA. This week is AYA Cancer Awareness Week, but the month of April is also National Minority Health Month. It’s been hard, I will say, because oftentimes when I do show up to AYA functions, whether it be online or if something is happening locally in the Atlanta area, I am often the only one that looks like me. I feel like that is not talked about enough, how uncomfortable that can be.

Not only have I gone through cancer, but I was originally diagnosed under 40, and now it’s like I’ve aged out. I really hate even saying that, but it’s like now I’m too old to be young, but I’m still too young to be old, so where do we fit in? I have added stressors that my White counterparts do not have. A lot of times, coming into these spaces where I am wanting that support, I do find friendships and support and everything. But sometimes people are just like, “Oh, let’s talk about our favorite Disney movies” and all that. I’m like, “Okay, I’m thinking about the racism I just experienced.” I wasn’t served here, or the microaggression I might’ve experienced at work—all of those factor into my healing and other permanent damage and side effects and health issues that I still have. That added layer, not really being able to find the support I need that is specific to the Black community, has been hard. I want to make sure that as much as we say it’s beautiful to be an AYA and find our community, it is still hard to fully be seen as holistically with my identity as a Black AYA.

Dr. Ghazal: Thank you for bringing that up. You talk about layering, and I think of theories of intersectionality. Someone isn’t just an AYA, just an AYA with cancer, just a Black AYA with cancer, just a Black queer AYA with cancer. You can add on these other really complicated layers that affect how you access a healthcare system and how society sees you. The 30 minutes we have left are not enough to break down these barriers, but it is an opportunity, again, to talk about that. The National Cancer Institute (NCI) likes to say that one size doesn’t fit all, or one size fits none, in cancer survivorship. The same thing holds true when you focus on a narrower population of AYAs. There’s less representation number-wise, but there’s the same amount of experiences and same amount of intersectionality that we have to take into consideration.

The other thing I wanted to say are the challenges to our community, and when I say, “our community,” I mean AYA survivorship in general, but there has not been a concerted effort to look at queer or trans AYAs with cancer. Escape is a grassroots organization led by Hailey Johnston. Along with Yasmine Ramachandra, Elisabeth Dodd, and some great folks, we decided to do a needs assessment to build off of the AYA community and really have this authentic engagement and allyship and collaboration with existing AYA organizations. It’s not just a piece published in Teen Cancer Awareness or a piece in Elephants and Tea. Hailey partnered with Nick from Elephants and Tea to launch their needs assessment and try to identify the specific needs of the LGBTQ, queer, or sexual and gender minority community. What are the unique needs of this population of AYAs, knowing that this is just a small percentage of our community? I agree with you we’re going to take this moment to celebrate and amplify this work, but also hold in our hearts that at the same time there are still significant challenges and burdens that we face. Does anyone else have reflections on this?

Ms. Rosen: For me, once I found the AYA community, I found home. I think all the organizations that you mentioned all work together. In some advocacy spaces, there’s a sense of competition. These guys, including organizations that weren’t even mentioned, really care about the populations that they serve. No matter what their mission is or what their goal is, if there’s an opportunity to collaborate, I’ve seen it firsthand. I know we’ve all seen it firsthand. They will because they care. I just think that it’s huge, because someone who’s newly diagnosed is sitting in a waiting room, looking around, and feeling alone, which so many of us have felt. Knowing that there is a home, that there are organizations that we can go to for anything and everything, really makes such a difference.

The first person I talked to who was a young adult, I don’t even remember her name, but she just made me feel like it was okay to not be okay. I felt like I had to be strong because I’ve always had health issues and I’ve always put a strong front on. Hearing someone say, “It’s okay to not be okay, you can go to the support group, people will understand you, you can cry, you can scream, you can do whatever you want to do,” has gotten me where I am now as a 12-year survivor. I’m helping to amplify all the voices within the community because I know I was privileged. I did go to an amazing cancer hospital; I did get the treatment I wanted. My career shifted from research into community outreach and education, helping different communities that don’t have access like I do. I made the mission for my life, career, and advocacy to help bridge the gap between healthcare providers and the communities that they serve.

If I’m not the right voice or the right person, I make sure I help find that person, because I’m not always the right person. The three of us are amazing advocates, but the whole community is great because someone will reach out and say, “Allison, do you know someone here with this cancer or this age or this mutation?” And I’ll say, “I will find them for you.” It’s such a welcoming community that people can reach out like that. I’m sure you guys are the same as me; every day, we get messages from people. I have a friend that was recently diagnosed, and they don’t know where to turn. They don’t know what resources are available. Resources are huge, but again, there’s just that sense of community. Once I found the AYA community, I could talk about all the challenges during treatment, and now as a survivor, that I was so missing. For physical health, doctors can do this surgery, do this radiation, do this chemo; but the mental aspect of it, as a whole, we could talk about that for two hours. I think the sense of community within the AYA space is from these organizations and so many more that can really help you find a home and help you feel like you’re not alone.

Ms. Chase: Lately, I’ve been struggling with the idea of “I found a home.” I don’t like to say “I found a home” or “I found my family” because those just don’t feel like the words for me. What I like to say is I have found very specific people at very specific AYA organizations who want to hear what I have to say. They are willing to get uncomfortable and have those uncomfortable conversations. I do wish more would be willing to do that, because it is very hard. A lot of times, I have to censor myself and I sometimes have to be quiet in some of these AYA spaces. No one ever reaches out after to say, “Hey, that might’ve been a lot, and there wasn’t really space for you to say anything. Are you okay?”

That is something I really want in this AYA Week of amplifying resources and support. When someone of color does show up online to one of the virtual groups, or if there’s something in-person that you have and they show up, why is no one following up with those people? I’ll come back the next week, and I don’t see that person. I feel like, again, if we’re going to say that this is an AYA family, home, and community, then where’s the follow-up? It really angers me because I actually have dropped out of a lot of AYA things and programs because no one ever bothered to say, “Hey, are you okay? What’s it like to be the only face that looks like yours in a screen of 30 people?” I feel like no one really wants to have those kinds of conversations and be uncomfortable, so it’s like now I no longer feel seen. I’m almost understanding why there’s a need to find Black-only support, which is something I never would’ve even thought about or considered when I was originally going through my active treatment.

Now that I’ve been in post-treatment and survivorship—as I like to say, my longest relationship has been with NED, no evidence of disease—I’m still looking for my community. I never thought I would have to segregate myself in order to find it, because that just seems absurd to me when we are in 2024. How can we not be more collectively working together? Also, where’s the follow-up? I feel like many of the AYA organizations are not doing a good-enough job. And I see it. As someone who is very, very vocal about this, it’s like now they’re not coming to me as often because I’m questioning and I’m pushing back. Before, I was so grateful just to find people like Allison and Lauren who were my age, but then once I got into a better place mentally and emotionally—somewhat physically, I still deal with some issues—I then started to realize, “Wait, I actually need more. I need different kinds of conversations to feel like I’m getting the support.” I never thought in a million years that I would say “Why isn’t it race a part of this conversation?” Because it really needs to be.

Dr. Ghazal: Hearing you speak, Megsie I think of the oncologist, Fitzhugh Mullan, who was diagnosed with cancer and wrote “Seasons of Survival.” I think about there are different points of our survivorship trajectory where we sometimes don’t know that we’re going to need that. I think of mental health as a big example. Allison, like you had mentioned before, our doctors can checkbox the physical stuff, but it’s like you never know sometimes when the mental aspect will hit us. It could be when you’re halfway through that treatment. For me, I remember it was all of a sudden. I was taking the train and that was the first time where I was like, “Oh, it’s hitting me. I am feeling overwhelmed right now and I don’t know if I have the tools ready in my toolkit to address this. I had been holding back from my therapist who I started seeing from the beginning; it was like I wasn’t ready to go there yet. I was still traumatized by the whole aspect.

Then I think about my interactions with community groups and their support, whether through services or through informational material. That has kind of exploded in a sense, and there’s a lot there. But then it’s just being aware of that and how accessing that has also changed throughout my survivorship trajectory. You just bring up such a great point of reflection, Megsie. By separating something based on your race and ethnicity, your religion, your disability status, we see even parents of young children who are AYAs—whatever identity, physical or not—is that perhaps further perpetuating health and healthcare disparities in AYAs, or is that meeting a real need of AYAs in actually seeing you as you are?

For me, when I think about accessing Escape resources, it’s kind of like there’s a little bit more relief that I have. It’s like I don’t have to explain this part of my identity when I’m here as an AYA. They already get that. It’s kind of like when you’re layering different things, and there’s that one thing you can just kind of leave at the door. I don’t know if it has to do with comfort, but this is just something I’ve been reflecting on more and more. We want to try to find these tailored, individualized approaches, similar to post-treatment survivorship care plans, but then also really try to look at AYAs as a whole population. It’s like, how do we do this when each and every AYA is so unique?

Ms. Rosen: It’s tough. I mean, for me, there’s a stigma related to colorectal cancer. People don’t want to talk about it. Younger people don’t want to talk about it. I was just doing policy work in DC to advocate for more funding. I can tell my story all day long, and younger people diagnosed with colorectal cancer can tell their story all day long. But if we don’t know why there’s this increased early onset. We’re telling younger people, “Okay, if you have these signs and symptoms or if you have this or you have that, go talk to your doctor about screening.” But if the doctors aren’t going to screen them, it doesn’t help. We’re doing a lot in our collective spaces, but there’s always room to do more. I think we need more people like Megsie who will speak up. If something’s missing, where is it? Where can I find it? There’s always room to create something new.

There are organizations, again, that do great things, but if you haven’t found your home, let’s find it. We all want people to feel comfortable in these spaces with their sexual orientation, their race, their ethnicity, their religion. I’m Jewish, if you’re an Ashkenazi Jew, you’re at higher risk to get colorectal cancer. I don’t think I’ve met anyone else Jewish that has colorectal cancer. My community is just young adult colorectal cancer survivors. I know there are younger women and men that are Jewish. I spoke at my mom’s Hadassah group, much older women obviously, and they were like, “Oh, maybe I should talk to my kids about this. I didn’t even know that we’re at higher risk for this or that.” I am not necessarily going to create another group at any point, but I think there are certain things that we need to be comfortable speaking up about that are missing, because someone else feels the same exact way that you do. That’s as simple as, again, sitting in the waiting room and being the only young person with your type of cancer. It’s also sometimes more specific than that

Again, there’s a lot being done. I know when I was going through treatment 12 years ago, there was no AYA Awareness Week, that’s for sure. There were no conversations around any of this stuff. I think my heart is happy that progress has been made, but there’s always room for more. There’s always growth and there are always conversations that need to happen. I think that’s why this conversation today is so important. We all are very different. We’re all very alike. We all find we need resources that might be different, and some might be alike, but we need to empower everyone within our community to help find what they need. If it doesn’t exist, let’s help create it.

Ms. Chase: You bring up another point about health literacy. I had discussion with a fellow AYA in the breast cancer community a couple of weeks ago, and we were talking about how when you were in your late teens to early 20s, and then in your 30s, did you know what deductibles meant? Did you know to ask for financial help or a financial navigator or a nurse navigator? There are all of these terms. Then when I break it down even more, I think of the different cultures and I think the similarities of Black and Latino, Latinx, Hispanic, and Asian cultures where we’re taught to just accept what the doctors say instead of questioning. I have really made it another mission to talk to young women, men, and those who identify as they/them to say, “You know what? It’s your patient right to ask questions. It’s your patient right to get pushy, and it’s your patient right to change doctors.”

Going through this experience when you’re already young, along with other factors, makes it sometimes difficult or makes you feel uncomfortable to speak up in the moment with a doctor. Maybe you don’t think this doctor is hearing me, or they’ve actually said something that you are taking as a microaggression. They might even not even realize it—I will say that—sometimes they really don’t know what they don’t know. We need to make sure that we’re getting through to young people now and saying, “Hey, we know in our cultures we normally don’t do this, but your health is yours and you matter, so speak up.”

We have to teach others the different elements of advocacy, because not all of us are vocal. You can put me right in front of a microphone, but not everyone is like that, and not everyone needs to be like that. It’s about helping elevate the AYA community by saying, “Here are things you can do. Here are different ways you can advocate for yourself without having to really put yourself out there. It’s tiny little things like saying it’s your patient right to ask questions. If you don’t feel comfortable with that doctor, if they’re making you feel uncomfortable, you can change. Here is how.” Coming up with all kinds of ideas here, but we really need to talk more about that health literacy because I think that is a missing key. We’re so focused in the AYA community about how, whether you’re in college, working, just starting out in your career, or making a career change, a cancer diagnosis totally changes that trajectory. You’re starting to realize just how important insurance is and what kind of insurance you have, what’s covered, what’s not covered. I feel very strongly about making sure that we’re helping to educate future AYAs.

Dr. Ghazal: I just looked down at my calendar, and it’s April 1. I posted on X this morning, “Happy AYA Awareness Week,” so I was justlike, “Oh, I should follow up that this is not an April Fool’s joke.” That’s similar to the fact that it’s not an April Fool’s joke, it’s actually real, that nearly 90,000 AYAs are diagnosed each year. That number unfortunately is going up, but at the same time, we have AYAs living longer than ever before. I think the reality is we’re having an increasingly diverse population of AYAs living longer than ever before, engaging in work longer than ever before, and engaging in their careers.

I think that a conversation like this kind of sets the ground for a whole future. It could be a whole body of research for someone too, but it’s really setting the foundation for why it is important that we have moments like this to talk and to reflect on. There were so many things that I’ve had in my mind as we’re talking. We talk about AYA stuff, and we talk about advocacy. Then there’s this whole idea of fatigue in advocacy and how each of us have probably encountered that moment where you’re sharing your story, and you’ve done it many times, and then all of a sudden something hits you in a way that it hasn’t before. It hits you different than the other 100 times you’ve told it. Are there any final thoughts that you all had for AYA Awareness Week? I know there’s been a push from some organizations who want to make it a month, but I think in the work that each of us do respectively, it’s year in and year out. Any closing thoughts that we have?

Ms. Rosen: This is an amazing conversation. I think with this week, it’s about spreading awareness beyond the groups that we’re involved in, trying to make sure that everyone within the community hears this message. We know it, we talk about it, we live, breathe, eat it. I think ensuring that others within the community know that if something seems wrong, it might be wrong, and they can speak up. With my platform, there are so many things I’m passionate about, but one of the biggest things is that you are your own best advocate. If anything comes out of this week, as AYAs, we are loud in a good way, but I want other people to realize that they’re not alone, and they are their own best advocate. There are resources out there for them if they think something’s wrong, even before something might be wrong. That’s really my closing thing. We’ve done some amazing work in this space, and we have a lot more to do, but I want to empower anyone out there that might be listening—if you think something might be wrong, please talk to your doctor. If that doctor doesn’t listen, please talk to another one until someone finds out what is going on with you. It might not be cancer, but you are your own best advocate.

Ms. Chase: 1000%, Allison. Yes, it’s trusting your gut. I spent over two and a half years of having strange symptoms, and they kept saying, “Oh, you just need to lose weight and eat better.” I was like, “The whole point is that I’m gaining weight. What’s going on?” I wasn’t being believed, but I kept pushing, because what I want everyone to remember is that you matter. Again, as Allison said, if you aren’t feeling comfortable, then go to someone else, but trust your gut that when you know something is not right in your body or you’re feeling some kind of way. Don’t discount it because doctors are giving you the runaround. Keep pushing, because you matter and no one else is going to speak up for you or know exactly what is going on with you except for you. It’s about finding the different ways that you feel comfortable in pushing forward, but there’s also that mental health component. I know we mentioned that a little bit earlier, but it’s okay to not be okay.

More importantly, once you end up getting that diagnosis, whether it be cancer or another chronic illness, and you are still an AYA, it is hard to live with. Maybe you were going to therapy before your diagnosis, but you’re going to need a whole other set of coping skills to add into your toolkit. That was something I realized. My personal advocacy, aside from talking about the racism found within these spaces and speaking up for yourself, is also that mental health component. At the end of the day, this is going to be a lot. You’re going to be in that fight or flight mode for a while. But once you’re ready to start the path of processing all that you have been through, don’t ever question those feelings or discount those feelings. Seek an AYA community and people out there that you feel comfortable with. We are out there, and there are a lot more resources than when we were originally diagnosed, and that is fantastic. But again, there’s still more work to do, more policy changes that need to be made, and more uncomfortable conversations that need to be had.

Dr. Ghazal: That, I think, is a great way to end this discussion. I could talk to you both for a while more. I really loved capitalizing on those two main points. And I just want to thank you, Keira and the team, for inviting us. Thank you to Oncology Data Advisor for continuing to amplify our work in our respective spaces, for inviting us back, and for really supporting us.

Ms. Chase: Yes. Thank you, thank you.

Ms. Rosen: Thank you so much.

Oncology Data Advisor: Of course, we’re so glad to have the three of you on the board so that we can have these conversations. Thank you all so much for such a wonderful discussion. I’m so glad you were able to bring up all these points.

About the Speakers

Lauren Ghazal, PhD, FNP-BC, is an Assistant Professor in the School of Nursing and an Associate Member in Cancer Prevention and Control at the University of Rochester Medical Center in New York. Her research focuses on nursing work-related challenges and financial toxicity experienced by adolescent and young adult cancer survivors, incorporating economic, clinical, and personal experiences to address survivorship disparities.

Megan-Claire Chase is a patient advocate and the Breast Cancer Program Director for SHARE Cancer Support, a nonprofit organization that seeks to empower women with cancer by providing public education and support for patients and survivors. As a survivor of stage IIA invasive lobular breast cancer, Ms. Chase became involved in patient advocacy work after completing her treatment. She is a prolific writer, blogger, and public speaker, having been featured in the New York Times, in People Magazine, and on PBS’s “Beyond Cancer” episode of “Stories from the Stage.” Her story and work are documented in her blog “Life on the Cancer Train.”

Allison Rosen, MS, is a colorectal cancer survivor and a patient advocate who uses her platform to educate, support, and represent the cancer community. She works as a patient advocate with numerous organizations, including Fight Colorectal Cancer, the National Coalition for Cancer Survivorship, the Colorectal Cancer Alliance, SWOG Cancer Research Network, and MD Anderson Cancer Center. Ms. Rosen is passionate about bridging the gap between the health care system and the communities that it serves.

For More Information

 

Fair C, Music F & Chase MC (2019). “The struggles of fertility are more difficult than the struggles of cancer”: adolescent and young adult cancer survivors’ perspectives on fertility preservation. J Adolesc (Society for Adolescent Health and Medicine Annual Meeting Abstracts), 64(suppl_2):S28-S29. Abstract 52. DOI:10.1016/j.jadohealth.2018.10.067

 

Elephants and Tea (2024). Available at: https://elephantsandtea.org/

Teen Cancer America (2024). Available at: https://teencanceramerica.org/

Fight Colorectal Cancer (2024). Available at: https://fightcolorectalcancer.org/

Colorectal Cancer Alliance (2024). Available at: https://colorectalcancer.org/

 

Colon Cancer Coalition (2024). Available at: https://coloncancercoalition.org/

Cactus Cancer Society (2024). Available at: https://cactuscancer.org/

 

Escape (2024). Available at: https://www.escapeayac.org/

Ghazal LV, Johnston H, Dodd E, et al (2024). A needs assessment approach for adolescent and young adult sexual and gender diverse cancer survivors. Int J Environ Res Public Health, 21(4):424. DOI:/10.3390/ijerph21040424

 

Mullan F (1985). Seasons of survival: reflections of a physician with cancer. N Engl J Med, 313(4):270-273. DOI:10.1056/NEJM198507253130421

Transcript edited for clarity. Any views expressed above are the speakers’ own and do not necessarily reflect those of Oncology Data Advisor.

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