Adolescent and Young Adult (AYA) Lymphoma

Unique medical and psychosocial considerations for care of adolescents and young adults with lymphoma.

Guest: Lisa Roth, MD, Director of the Adolescent and Young Adult (AYA) Lymphoma Program at Weill Cornell Medicine and NewYork-Presbyterian Hospital. Host: John Leonard, MD, world-renowned hematologist and medical oncologist at Weill Cornell Medicine and NewYork-Presbyterian Hospital.
Adolescent and Young Adult (AYA) Lymphoma
Featured Speaker:
Lisa Roth, MD
Lisa Roth, MD, is the Director of the Adolescent and Young Adult (AYA) Lymphoma Program at Weill Cornell Medicine and NewYork-Presbyterian Hospital, and she specializes in treating children, adolescents and young adults with lymphoma and leukemia.
Transcription:

John Leonard, MD (Host):  Welcome to Weill Cornell Medicine CancerCast, conversations about new developments in medicine, cancer care and research. I’m your host Dr. John Leonard. And today we will be talking about adolescent and young adult or AYA lymphoma. My guest today is Dr. Lisa Roth. Dr. Roth is the Director of the Adolescent and Young Adult or AYA Lymphoma Program at Weill Cornell Medicine and New York Presbyterian Hospital. She specializes in treating children, adolescents and young adults with leukemia and lymphoma. So, Lisa it’s really great to have you here today. I know we’ve worked together a long time and I’ve learned a lot from you about this area as you’ve built our program and taken care of so many patients in this category. So, thanks so much for joining us.

Lisa Roth, MD (Guest):  Thank you for having me. It’s a pleasure to be here.

Host:  You know I would like to know how you got involved in this area of medicine, of pediatrics as well as internal medicine oncology and in the AYA population in particular and maybe before you answer that, just for our audience, I know that there are somewhat technical definitions as well as practical definitions for AYA but what age range or who are the people that fall into the AYA cancer patient population.

Dr. Roth:  That’s a good question. And the definitions are somewhat vague but generally most people consider adolescents and young adults to be people between the age of 15 and 39.

Host:  So, how did you get involved and interested in lymphomas and hematologic malignancies in particular in this patient population?

Dr. Roth:  I was always interested in lymphomas in particular and then I myself was actually diagnosed with Hodgkin’s lymphoma just as I was starting off my career. So, I was already a lymphoma physician and treating patients and actually had to take a pause on everything I was doing to deal with my own Hodgkin’s lymphoma diagnosis. And one of the things I noticed as a young person being treated for lymphoma is you really kind of don’t fit in. You look around in the waiting room, it’s mostly older people and you kind of struggle to find others who are going through a similar experience to kind of help you through that.

And so one of the first things I did when I got back to work, thankfully I responded well to chemotherapy and was able to get back to what I loved doing and one of the things that I thought was most important as I returned was to build an adolescent and young adult lymphoma program. So, a program that focused specifically on people in this age group who have really been underrecognized and underrepresented within oncology and oncology research and build a program where we could focus on optimizing not just their medical treatment but all of the psychosocial support and other efforts that are so important in helping someone through this diagnosis and treatment. And so, it’s been a pleasure to work with you and to bring together both the pediatric oncology groups and the medical oncology groups to focus specifically on lymphoma in this age group which is actually the most common cancer type that happens among adolescents and young adults.

Host:  So, I want to expound on your last point about lymphoma being more common or I guess a common group of diseases for this particular age range. Can you comment a bit on kind of what type of lymphomas as well as just broadly other cancers that are relatively common in this group of patients? Are there certain lymphomas that virtually never happen in this age group and certain lymphomas that happen reasonably commonly in this age group? So, just to give our audience a sense of for this group of patients, who might develop lymphoma or other cancers which types we tend to see more often than others.

Dr. Roth:  The people in this age group who are diagnosed with cancer kind of do have a unique range of diagnoses and they are quite specific to this age group. And as I said, lymphoma is one of the most common diagnoses that we see. Leukemia is also common in this age group and then there are certain types of solid tumors as you get towards the older end of the AYA spectrum; breast cancer for example becomes more common in this age group. And then there are certain types of what we call sarcomas or solid tumors that also occur in this age group. And what’s interesting, is that pediatric and adult oncologists just haven’t always worked together but might be treating the same diagnoses. So, you could kind of as a say 19 year old walk into a pediatric oncologist or a medical oncologist and get vastly different treatment recommendations for the exact same diagnosis and so that’s one of the things we’ve been working to address within our program.

With regards to lymphoma, as you mentioned, there are a lot of different types of lymphoma but there are few types that are really most common within this age group. And they tend to be what we consider the more aggressive or fast growing lymphomas and that includes Hodgkin’s lymphoma, and some types of what we call non-Hodgkin’s lymphomas. There’s a type of non-Hodgkin’s lymphoma called primary mediastinal B cell lymphoma that really kind of peaks in this age group and is kind of unique to this age group. So, it’s a group of lymphomas that tend to be faster growing but also tend to respond quite well to therapy.

Host:  So, we talk a lot about “the host” or the person that has the tumor as well as the tumor itself in a variety of different contexts but biologically speaking, are there big differences in younger versus older patients as far as the tumors that they have within that tumor group, i.e., is a patient who is young with Hodgkin’s lymphoma or a diffuse large cell lymphoma have a fundamentally different tumor than someone who is older with the same histologic diagnosis? Are there examples where we’ve seen differences in the biology of the tumor that might account for some of the differences in outcomes and potentially therapy?

Dr. Roth:  That’s an excellent question and one that we don’t understand as much as we would like to and so this is an area of research that hasn’t traditionally been a main focus of oncology and it’s one of the things that we are focusing on within our laboratory initiatives within our AYA lymphoma program. I think it’s a really important question to understand because the treatment might be different and the optimal therapy might be different based on the biology of the disease. There’s some nuances that we know, for example, Hodgkin’s lymphoma, there are different subtypes and one is called the nodular sclerosing subtype of Hodgkin’s lymphoma. That tends to be the most common subtype that we see in adolescents and young adults and very young patients or older patients are less likely to have that histologic subtype.

But that’s a pretty crude understanding of the biology and so we’re working to really understand what are differences among these age groups and the tumors that occur within these age groups to understand is 18 an appropriate cut off between children and adults or does an 18 year old’s tumor look more like an older person’s tumor or a younger person’s tumor and how does that impact the way that we think about treatment. So, it’s an area of research that really is just beginning and I think will really help to tailor the way that we think about treatment and we think about the age groups for these lymphomas which we kind of have this arbitrary cut off between pediatrics and adults which may not reflect differences in biology of the disease.

Host: You alluded earlier to the idea that adult oncologists and pediatric oncologists and to the extent that there are people the bridge the divide haven’t always thought the same way and have not always had similar ideas or similar approaches to treatment as you alluded to and as an adult oncologist, it’s kind of sad for me to recognize that in some cases there’s evidence that patients do better in this age range if they are treated by a pediatrician or someone coming from that perspective versus an adult oncologist. And I know there’s a controversial area and a lot of factors that might go into that if in fact that might be the case but what are the reasons why there might be differences in approach between adult and pediatric oncologists and potentially differences in outcome, at least what are the hypotheses for potential issues behind this?

Dr. Roth:  Pediatric oncologists and medical oncologists have traditionally worked independently and the way that we’ve both made advances in the respective fields, is through clinical trials and one trial builds on another trial and that builds on another trial and so, there’s just been this divergence in the way that a pediatric oncologist treats a patient with lymphoma and an adult oncologist treats a patient with lymphoma. And some of that might just be the way that things evolved and other elements of this are based on biology and based on differences among these age groups and an older person in their 60s or 70s might not be able to tolerate high dose chemotherapy the same way that a child can. Children actually bounce back from the side effects from chemotherapy much more readily than older adults do and so a lot of the treatment paradigms have been built around these differences between children and adults.

But when it comes to lymphoma, and diseases that occur in adolescence and young adults, we’re really not talking about very young patients or very old patients. So, it’s really not clear which approach is the optimal approach. And as you’ve alluded to, there’s been research in leukemia specifically looking at people diagnosed with leukemia in this age range treated with the “pediatric” approach which tends to be higher dose more intensive chemotherapy or the “adult” approach and in those studies, people treated with the pediatric approach did better. Now does that apply to all cancer types? I think probably not. But I think the lesson learned from this is that if we worked together, if the pediatric oncologists and the medical oncologists kind of get together and critically think about the various treatment options that are available and what might be optimal for young patients in this age group, I think we have a lot to learn from each other. And if we come together, and I think this is happening more now, and develop trials that are specifically focused on this age group, I think that’s really the way to move things forward and improve outcomes for these young people who kind of otherwise have been split between these two worlds in a way that really detracts focus from understanding how best to treat them.

Host:  So, I think a great example of that is the fact that the national NCI supported clinical trial for advanced stage Hodgkin’s lymphoma was developed in collaboration between adult and pediatric oncologists and is open and available regardless of what type of center you might go to across the country, where the regimen will be the same. You’re in the process of developing a study that will similarly be a national study that will cross the spectrum. I wonder if you could just spend a second, I know it’s not yet available, but we expect later in the year for it to be open and accruing patients, so could you tell us a little bit about that study just out of interest for our audience?

Dr. Roth:  Yeah, absolutely. This is one of the projects that have come from the AYA lymphoma program that I think I’m most proud of. This concept of having a clinical trial that crosses age barriers is relatively new. But something that is very much supported by the National Cancer Institute and the trial that we have been working on is a trial in a rare type of non-Hodgkin’s lymphoma which is called primary mediastinal B-cell lymphoma. And this is one of those lymphomas that really occurs most commonly in adolescents and young adults. And so, it’s crucial for this diagnosis that pediatric oncologists and medical oncologists work together. It’s a rare diagnosis that’s usually not the focus of clinical trials. And so the trial that we are developing, that we’re expecting will be open later this year is a trial looking at a novel immune checkpoint inhibitor in combination with standard chemotherapy to treat this disease. So, the question that we’re asking is adding this new agent, this immune checkpoint inhibitor which allows the body’s own immune response to recognize and attack the lymphoma; does adding that to standard chemotherapy improve cure rates for patients with primary mediastinal B-cell lymphoma.

And this is a trial that similar to the Hodgkin’s lymphoma trial that you mentioned, is unique in that it is not a pediatric trial, not an adult trial but a trial that crosses all age groups and will be open across all of the National Cancer Institute Cooperative Group Centers and available to adolescents and young adults with primary mediastinal B-cell lymphoma. And will be the first trial of its kind, a randomized phase three trial to ask this question.

Host: So, can you talk a little bit about what are the aspects that your program, our program focuses on for this group of patients and why they may be a little bit different than say the typical older patient?

Dr. Roth:  Yeah, so young people in the adolescent young adult age group have unique medical needs but then also unique psychosocial needs, unique considerations. It’s a challenging time for anyone at this age as you are establishing independence, in school, finishing up school, might be starting your first job and then to encounter a life threatening illness really puts your whole world upside down and can be quite challenging. So, our program is designed to address all of the needs of our patients including unique medical considerations, for example, fertility preservation is really on the forefront of our patients’ minds. Chemotherapy can affect your ability to have children later on in life and so this might not be a consideration for a 60 year old, but for a 19 year old or a 25 year old diagnosed with lymphoma about to face chemotherapy that might impact their fertility, understanding what can be done to preserve their fertility after their chemotherapy treatment is something that we think is really important. And so, your first visit with us in our program includes a consultation with our fertility preservation specialists who can have a very detailed discussion about treatment options, how they affect fertility and what potentially can be done even before starting treatment to preserve fertility.

We also have a dedicated AYA social worker and she provides counseling and access to resources to help connect young people with cancer, to help with the feeling of isolation that’s really quite common in this age group. We also have art therapists who work with our patients. We have an integrative medicine service and they do an excellent job of helping with some of the side effects that can be most troublesome while going through chemotherapy. And then importantly, we also have a survivorship program and this centers around this concept of the vast majority of our patients are going to be cured of their lymphoma, have many years of life ahead of them and focusing on their overall general health both during treatment and after treatment, having had exposure to chemotherapy is something that we think is a crucial part of lymphoma treatment and so we have a dedicated survivorship program that meets with our patients from the very beginning and then after their therapy, provides ongoing medical treatment to address some of the long term complications that people might be at risk for as a result of the treatment they received for their lymphoma.

Host:  And I have to say, I’ve had patients in their teens come with their parents and on occasion, I’ve had patients in their 60s and 70s come with their parents to doctor visits. Recognizing that some of our audience may be parents of AYA patients or other loved ones, what kind of advice do you give? I’m sure in some cases, being a parent of an adolescent child can be hard enough and, in some cases, on the other hand, obviously parents play an important role in the care, particularly in this patient population. What sorts of suggestions or thoughts do you have for parents and recognizing that the stress of obviously a parent being concerned about their child ranks right up there with many of the difficult life challenges. It’s right at the top of the list. So, what advice do you have or guidance do you have for parents who may be dealing with this situation as to how they can be most helpful to their child and to having a good outcome?

Dr. Roth:  Yeah I think the parents are essential for patients that span all of the AYA age group and it might be a time when parents weren’t as involved in their child’s life and then they become sick and all of the sudden, become much more dependent on their parents than they really want to be at this age group. And so, it can be quite challenging, first of all, navigating a cancer diagnosis and then navigating the challenges of kind of being a parent and helping your child through this. And I think having access to our social work, our counselors, helping families develop the language to help their child through this, the supportive care network to help them with the side effects of chemotherapy is just as essential as choosing a therapy for the cancer. And so, we really take a family approach to our treatment and the parents are just as involved as the patient, especially for this age group.

Host:  How do you tend to approach issues around school and work for patients in this patient population?

Dr. Roth:  Yeah, this is often the number one concern when someone is faced with a new diagnosis, is you were on this path with school or may have been just starting a new job and what’s going to happen with all of that as you battle the cancer treatment and then also try to keep your life moving along as it was. It depends a little bit on the type of therapy that is required for the cancer diagnosis. There are times when people can continue with work or with school on a modified schedule to allow for their cancer treatment but potentially still continue with that. And there are other times where the treatment is intensive and requires somewhat of a leave, a break from work or time off from school or just a transition to home schooling to keep up with course work. And we really work individually with each person and each situation as far as what is most optimal for them. We work very closely with school and employers to make sure everyone understands the circumstances and people are generally very accommodating for this.

And as soon as we can, we get you back to school, work, wherever you were before and then once treatment is over, we’re quite flexible and kind of working around the college schedule and seeing you when you are home for break. There are some situations where you might need less intensive treatment and we’ll coordinate with an oncologist kind of close to college to allow therapy to continue that might be less intensive therapy while we manage it from afar and allow you to continue on with classes. So, we recognize that this is really important and on the forefront of people’s minds as they are grappling with the changes that come with a cancer diagnosis and our team works very closely to keep things as normal as we can and to keep you on track and then get you back as soon as we can to school or work.

Host:  One other issue with this patient population as you know is that many of them are exploring their relationships and perhaps dating or early in their marriage Is there guidance that you tend to give patients in this age range where that may be a particular issue? And I know you have your team is probably very supportive in this regard as well in helping people navigate.

Dr. Roth:  We are, and I think it really runs the gamut. We have people come to get their chemotherapy and bring their boyfriend or girlfriend along to kind of include them in the family and as kind of part of the supportive network and we recognize how important your friendships and your dating life are when you are at this age group and so to the extent that we can continue to support that and help through that we recognize that this is something that’s really important for our patients. And again, that feeling of isolation that this is very different than what’s going on with my peers can be quite challenging and so, one of the things that I’ve found helpful is kind of pairing our patients with someone of a similar age group whose been through the same thing and has finished their treatment and gone back to their life and can kind of help recognize that there is light at the end of the tunnel and that you will get through this and this is kind of a bump in the road and it does makes things challenging. But that this is something that you will get through and again, we recognize how important those relationships are both before and after treatment.

Host:  So, you alluded to the survivorship program and I find that a number of my patients who have completed treatment whether or not they are in the AYA group, really spend a lot of time worrying about survivorship issues and are they going to get another cancer, risk of relapse even if that risk is very, very low, it still remains there. What are some of the key messages for patients who are kind of in this survivorship phase of their journey that you try to pass along?

Dr. Roth:  It’s a common concern and chemotherapy does come with side effects, some of which you recognize early on and some of which are health problems that can emerge later on in life. And the survivorship program focuses on addressing those issues and screening for those issues early on so that something can be recognized potentially before it is problematic and before it causes significant health consequences. And so, it’s important to be followed by a physician after your cancer treatment who recognizes the treatment that you’ve received and the unique medical considerations as a result of that treatment. And so, our survivorship program focuses on kind of the comprehensive medical needs of people who have received chemotherapy and the good news is, the vast majority of these visits in our survivorship clinic are kind of healthy people coming back to discuss their risk for problems but who are generally doing quite well. And it can be empowering to understand your risk and to know that you are taking efforts, screening to minimize the significance of those complications and that’s what our survivorship program focuses on.

Host:  Finally, I know a big part of the AYA program at Weill Cornell and New York Presbyterian is focused on research and you alluded to clinical trials. What are some of the other key areas of research that you and the team are focused on for this patient population?

Dr. Roth:  So, there’s a few areas of research that we think are quite important for this age group. There are the clinical trials that we’ve discussed which bring access to new agents sooner to this patient population that they otherwise wouldn’t have access to. But we’re also involved in other types of clinical research to understand unique toxicities from chemotherapy, unique side effects and how we can best address that. And then we’re also studying the biology of these tumors, trying to understand what is different about tumors in this age group, or what might be unique kind of vulnerabilities of the tumors that occur in patients in this age group. So, what is it about say the genetics of a tumor that might allow us to identify a novel therapy that targets that genetic change in the tumor that might be less toxic than chemotherapy, it might be more effective than chemotherapy. And one of the projects we’re working on is understanding the genetics of Hodgkin’s lymphoma. And the genetic of cancer is something we can study pretty easily for most cancer types. As you know genetic sequencing is something you can send off your own genomes and kind of get results back very quickly. It’s not very expensive. And the one exception is Hodgkin’s lymphoma here where we really can’t sequence the tumor very well. And it’s because the tumor in Hodgkin’s lymphoma is mostly actually the patient’s own immune response to a very rare malignant cell. So, there are malignant cancer cells there, but they are less than one percent of the tumor.

So, trying to sequence that and understand the genetics is kind of like trying to find a needle in a haystack. And so, our research team has found a way to isolate those rare malignant Hodgkin’s lymphoma cells and study their genetics and so, we’ve been working on the first study of this kind to look at this across the AYA population and understand the genetics of Hodgkin’s lymphoma in this age group and we’re hoping that this can help us to identify novel therapies, new ways that we can treat Hodgkin’s lymphoma specially in adolescents and young adults.

Host:  So, before we wrap up, I just want to get from you kind of your sense of a key message that AYA patients and their parents or their families should keep in mind following a diagnosis that’s often very stressful and concerning. Your key advice to them as they think about moving forward.

Dr. Roth:  I would say that you’re not alone in this situation. It can feel very isolating. This is a devastating diagnosis for any family. However, there’s a support network to help you through this. and there’s a light at the end of the tunnel. We have very good therapies as we’re working together more and more, we’re kind of moving away from some of those more toxic traditional therapies and finding new ways to treat these diagnoses that are quite effective where we can hopefully minimize the side effects and the toxicity. So, we are kind of at an exciting time for lymphoma therapy as we’re all working together now and while this is a very stressful and challenging time for a family, I just encourage people to take advantage of all of the resources that are available be it social work, art therapy, integrative medicine, and that treatment really should be focused as kind of a multidisciplinary team approach to help families through this very challenging time.

Host:  Well Dr. Roth, thank you for a great discussion. I want to thank you for sharing your thoughts on this very important area with our audience today. And I’d like to invite our listeners to download, subscribe, rate and review CancerCast on Apple Podcasts, Google Play Music or online at www.weillcornell.org. We also encourage you to write to us at This email address is being protected from spambots. You need JavaScript enabled to view it.  with questions, comments and topics you’d like to see us cover more in depth in the future. That’s it for CancerCast, conversations about new developments in medicine, cancer care and research. I’m Dr. John Leonard. Thanks for tuning in.