The Future of the AYA Cancer Movement: A Chat With Dr. Leonard Sender


The Blog – Emily Drake.Health promotion specialist, researcher, advocate

Part 1 of a 3-part series:

I recently attended the first annual meeting of the Society of Adolescent and Young Adult Oncology (SAYAO) held at the University of California, Irvine (UC Irvine) in partnership with the Hyundai Cancer Institute at the Children’s Hospital of Orange County (CHOC Children’s). SAYAO was envisioned and developed by Dr. Leonard Sender, the Medical Director of the Hyundai Cancer Institute at CHOC Children’s; Pediatric Subspecialty Faculty Division Chief of Oncology; and Director of Clinical Operations and Program Development at the UC Irvine Health’s Chao Family Comprehensive Cancer Center. Dr. Sender is regarded as one of the leading advocacy pioneers of the adolescent and young adult (AYA) oncology movement. Among his many achievements, Dr. Sender developed the joint Adolescent and Young Adult Cancer Program at CHOC Children’s and UC Irvine Health and is currently the chairman of the United States’ largest AYA patient advocacy group: Stupid Cancer ( I had the opportunity to sit down with Dr. Sender to discuss his views on the AYA movement.

Emily: Thank you for taking the time to sit down and speak with me, Dr. Sender. Can you briefly tell me about why you became interested in the AYA cancer movement and what motivated you to become one of its leading advocacy pioneers?

Dr. Sender: I’m the son of a family practitioner physician in South Africa and I got to know some young adults during my adolescence who were diagnosed with cancer. So, before I went to medical school I knew some of these patients and got fascinated that cancer was happening to young people who were sort of my age. At that time, obviously, the outcome was terrible. They all passed away. I sort of realized that something was unique about them because I kept thinking about my future and I had a future that I could think about. Cancer was a really rare thing to happen in this age group. Then when I went to medical school, I got fascinated by cancer as a whole. I couldn’t decide whether I wanted to do pediatrics or adult and I finally realized that the group I really liked was in-between, but there was no way to get into that field. You either became a pediatrician or you became an internist. We didn’t know to call it AYA. So, over the years I kept thinking about how do I do this combined field. Back in 1991, I left LA Children’s to go to the University of Kentucky to take their transplant program. I got the person who was the head of the adult program to allow me to attend on adult patients because I wanted to do it and there was no AYA specialty. There wasn’t a known way to specialize in this population. So really, I’ve been doing this since 1991, long before we called it that [AYA]. We looked at the politics of it, because really it was neither pediatrics nor adult, and to me it was just fascinating. How do we change the outcome for these patients? However, it is not just about the outcome. I think one of things, Emily, is that people think that that’s what the AYA movement is all about. It is really about the experience of the cancer patient at that age going through cancer. Cancer is bad for all ages you look at, it doesn’t make a difference what age. There are terrible outcomes for a lot of adult diseases. What we are really talking about in the AYA movement is patient-centred care. It is about creating an understanding of that patient in the context of their biology, social circumstance, geography, etc. and I suppose that is what it has really mounted to now what we call the AYA movement.

Emily: Can you summarize for me what you believe the AYA movement has achieved since its formal inception over the past few decades?

Dr. Sender: First of all, it hasn’t gone on a long time. Really, I think it’s only gone on for maybe two decades, but what has happened is that now you can’t go to a national meeting and not have someone there to talk about AYA. The Children’s Oncology Group (COG) is talking about AYA. AACR which is the American Association of Cancer Research is talking about it. The Southwest Oncology Group (SWOG) is talking about it. What’s happened is that we’ve created this new awareness, that there’s a group of patients defined by age rather than by disease and that that group of patients need to have attention paid to them that adjusts the therapy and how we do it and the context of the therapy based on their age. I think that that is really what we’ve achieved.

Emily: What do you believe should be the current priorities of the AYA movement?

Dr. Sender: I think the number one thing that we need to do is research. I believe that we’ve identified to the general medical community and the oncology community that the AYA patient population is real, they’re here to stay and they need to be treated differently. However, what we really need is to put effort into understanding the biological differences – why someone develops it at that age, how the treatment affects them at that age and what is different about the tumor given the same name at that age versus when it affects either younger patients or older patients. I believe the number one priority is to get a hold of research dollars and put it into the field so that we can finally start making sense of not only why young people get it, but how we can cure people of it. That to me is really important .

Emily: What do you think we need to do to achieve these goals?

Dr. Sender: I think we need to continue the movement that has been going on. We need to be able to bring the world of experts together. We need to bring more people to the table and reach any disease expert and say to them – when you think about the disease you are an expert on, have you thought about it in terms of an adolescent or young adult patient, so that they can become advocates as well. We can then advocate together to the funding organizations, whether they be the National Cancer Institute in this country or any other funding agency, and say do research on the AYA population.

Emily: Where do you see the future of the AYA movement?

Dr. Sender: I think that the AYA movement will become one of four subsections in cancer medicine. I think that we will focus on pediatrics, AYA, adult and geriatric cancers. I think that we are going to learn that the lesson of the AYA movement is that chronology plays a role. Your age is important because of your developmental stage, and it’s really about the context of who you are as a cancer patient. What does it mean for your psychosocial needs, what does it mean for your biological needs, what does it mean for your underlying host — in other words, are you a young patient who can tolerate therapy or are you an older patient who has a comorbidity. I believe the movement as a whole is going to help define four big age groups of people getting cancers and that we are going to start addressing cancer in terms of what it means for those age groups. So, what does it mean for a geriatric patient who is different from an adult who is different from an AYA who is different from a pediatric patient?

Visit here to find out more information about Dr. Sender’s work and CHOC Children’s Hospital.

Follow Emily Drake on Twitter: