Teen Cancer America is hosting an online summit for anyone interested in the emerging field of Liquid Biopsy.
Our interest in this field is because of the possibilities it holds for cancer prevention and reducing late diagnosis in young people with cancer in order to improve outcomes and survival .
We are providing an opportunity to learn about the latest science and then we will explore complex issues such as access, equity, cost and coverage with an expert panel including advocates.
This past year, we have seen incredible growth in AYA program development through collaboration. Hospitals are sharing and learning from one another in an effort to expedite program growth and enhance the services they’re able to provide young people facing cancer. Two of our hospital partners, UC Davis and UCLA, have partnered to further their impact on AYA support and education. We are so encouraged by their creativity and dedication to meeting the needs of their patients and survivors. Check-out the great work they’re doing!
Learn & Lounge is a monthly series meant to empower adolescents and young adults during cancer treatment and beyond.
The series was started in February 2021 in response to feedback from both the UC Davis Health and UCLA Health AYA Advisory Boards. Members of our AYA Advisory Boards expressed a wish for more social events to connect with one another throughout the year, in particular between the annual Pushing Past Cancer Conference co-hosted by UC Davis Health, UCLA Health, and Stupid Cancer. Since the conference is a joint effort of the two UC health systems, it made sense to continue this partnership throughout the year.
The Learn & Lounge usually starts with introductions or an icebreaker that is followed by a short educational session on a topic of interest/relevance to AYA patients and survivors (e.g. program and partner resources, work & career, sexual health, etc.). After the education session there is a social hour for patients/survivors only – no health care professionals allowed! For the social hour, participants need to be over age 18 and to have agreed to privacy and confidentiality standards.
Attendance at Learn & Lounge has ranged from 6-16 participants and initial feedback has been overwhelmingly positive (formal evaluation pending). The most highly attended sessions have been those that promised to be the most fun – for example, a recent AirBnB “virtual experience” sponsored by the Northern & Southern chapters of Leukemia & Lymphoma Society. Post-COVID we may experiment with holding Learn & Lounge in-person in our respective parts of California; however, the value of meeting virtually is that participants can join us from wherever they are – whether in another city or town, in the hospital or out in the backyard.
Having our AYA programs partner together on Learn & Lounge helps to lessen the workload associated with planning and hosting the monthly series and assists in boosting attendance at events. It also strengthens the relationships between our AYA programs and the members of our AYA Advisory Boards, and with other organizational partners who contribute to the series. We hope that Learn & Lounge will continue to grow and be a resource in building an AYA cancer community that is accessible and supportive of all AYA patients, survivors, caregivers and partners.
We look forward to our Learn & Lounge events on Medical Marijuana and Career Coaching/Goal Setting later this summer! For more information please email: arosenbaum@ucdavis.edu or JPLeavitt@mednet.ucla.edu
Hello! I am Shannon Voelkel, one of the new additions to the Duke Cancer Institute’s Teen and Young Adult Oncology Program. I started my position as patient navigator back in January. I hope I am able to illustrate my passion for not only this role, but the patient population that I have the privilege to work with every day.
I like to introduce myself to patients as a glorified tour guide who follows them through their entire cancer journey making sure that the experience is tailored to their personal needs, whether it is emotional, social, or medical I am here to help. I say journey because a cancer diagnosis is continually life-altering no matter how much time passes. I am along for the ride—checking-in, educating, and providing a safe space to address unique needs that typically arise not only with teens and young adults, but their loved ones, too.
Since 2016, I have been involved with the young adult patient population at Duke with a variety of chronic illnesses. No matter the diagnosis or stage in their healthcare journey, there is a bit of magic that happens when they are brought into a community that simply “gets it.” Having the ability to normalize even one side effect or educate a patient about a future change that may come about because their diagnosis is indescribable.
What I have enjoyed from the role so far?
I wish I could nail down one part that I have enjoyed the most, but in all honesty, I have enjoyed every single aspect. Continually working with patients along their journey and directly experiencing the impact is exciting and motivating. Receiving funding from Teen Cancer America has allowed the Teen and Young Adult Oncology Program at Duke to thrive even amidst a global pandemic! I have continually been able to safely support and connect patients to services even while in a remote position. Our virtual meetups have been a highlight for me. Opening up a space for young adults to connect during a time of isolation has been inspiring. Experiencing a group of strangers come together and watching them develop an immediate bond that fosters a sense of normalcy confirms I am exactly where I need to be.
What’s Next?
This is the most exciting part! As our program continues to grow, I get to see the ripple effect. We are expanding the TYAO community, educating healthcare providers, learning, re-evaluating, and ultimately continuing to change the standard of care for the teen and young adult oncology population at Duke—working toward our goal to bridge the gap.
The James Comprehensive Cancer Center and Nationwide Children’s Hospital (NCH) have a history of working together and both strive to provide the best care possible for all AYAs, 15-39 years old. It became clear to our team leaders that staffing and programming devoted to this group was crucial to continue to move in a positive direction. Our institutions’ new formal collaboration creates a necessary and unique dual institution AYA program. 2020 has been different for all of us in many ways yet some of those differences, like social distancing and wearing PPE, are wildly familiar to adolescents and young adults fighting cancer. While large gatherings and schools may have ceased in-person, our hospitals remain open to provide medically necessary care to AYAs.
In June of 2019, with the help of TCA, The James hired their first AYA program navigator, Samantha Hulett, MSW, LISW-S. Sam worked diligently to create an AYA program referral, complete comprehensive psychosocial needs assessments and connect patients with the necessary resources to support them during and following treatment. The program referral started as a pilot with hematology, sarcoma, and breast patients and now is expanding to the whole institution. When COVID hit Ohio, it brought a unique opportunity in telehealth. Sam can now see patients and families at their convenience, by video, outside of their medical appointments. AYAs have taken advantage of care at home. Patients appear to be more open and forthcoming, secure that they have privacy and the time needed to share. This allows for more thorough assessments and referrals to the most appropriate care providers.
In April of 2020, Nationwide Children’s Hospital hired their AYA program coordinator Sarah See, MS, LPC, CCLS. She has been with Children’s for the past 10 years working as a child life specialist and a clinical lead. Her transition into this role has looked very different than Sam’s experience. Given the precautions to keep patients safe, Sarah has done much more in the background for program development. She has had the opportunity to benchmark with top AYA programs across the United States, update AYA resources, provide suggestion for how to manage care, and begin to streamline data collection. She also hosted a focus group with The James and NCH patients to assess current programming and identify opportunities for growth, including the creation of an AYA patient advisory council.
Even though these roles may look different now given our current health care circumstances, Sam and Sarah have been great mentors and supportive colleagues throughout this experience. They have a vast amount of knowledge about patient and family centered care and are strong advocates for the AYA population. They can rely on each other’s expertise for patient case discussions and best practices. Next month, they will kick-off their first combined virtual discussion group on dating during and after diagnosis. Just as Sam and Sarah work together, The James Comprehensive Cancer Center and Nationwide Children’s Hospital seamlessly blend to provide the full complement of services to adolescents and young adults with cancer.
Sometimes it’s good to be a newbie in the AYA (Adolescent and Young Adult) world. Thanks to a grant from Teen Cancer America, I started working with Pam Simon in the Stanford Adolescent and Young Adult Cancer Program (SAYAC) in June after spending several years working in adult cancer survivorship. I was immediately impressed with all the information that TCA had available for new coordinators: recordings of the Monthly Drip, links to program manager presentations and plenty of information on the website. This is great for a new coordinator who doesn’t want to reinvent the wheel since many institutions face similar issues and challenges.
One of the first projects I started on was the launch of a new clinic within our adult Cancer Center for young adult survivors of childhood and adolescent cancer. We call this clinic the GREAT Survivorship Clinic which stands for Getting Regular Evaluations After Treatment. Immediately some of the differences between the older cancer survivors I had been working with and these young adults struck me. As I worked with our AYA Advisory Board I heard stories from members about their experiences transitioning into the world of adult medicine. One member told me how she could not find an adult oncologist who was willing to follow her because nobody felt like they knew enough about her type of childhood cancer.
Many of these young adults have been treated intensively as children/teens and they face more late effects such as cardiac, pulmonary and endocrine problems, osteoporosis, second cancers and fertility problems, as well as cognitive and psychosocial problems. Of course older adult survivors of cancer can develop these conditions from their cancer treatment, but the AYA survivors are developing multiple chronic conditions in their 30’s and 40’s, rather than in their 60’s, 70’s and 80’s. Yet these young adults in their 20’s and 30’s feel “invincible” and if they are not experiencing symptoms, they may not be getting any regular care from oncologists or primary care so some of these conditions may go untreated. One of our first patients in the clinic had not had any follow up care for more than 10 years!
Prior to opening this clinic, there wasn’t a medical home for these young adults to be seen. One of the problems for AYA’s is that they are an “in-between” group, not comfortable with the toys and stuffed animals of pediatrics but not adept at managing their healthcare with adults who are often decades older than they are. Young adults need help making the transition to adult medicine. If we don’t reach out to them (repeatedly), they continue to fall out of care.
One of the most striking issues we see in survivors who were diagnosed as teens is the disruption that occurs in their lives just as they are going through major transitions from childhood to adulthood. Major events such as going to college, getting a first job, marriage and starting a family are delayed or complicated by cancer. These patients often have unique life circumstances that make their survivorship concerns and their support networks quite different from their older counterparts. Young adult cancer survivors really benefit from discussing these life issues with a social worker or other person knowledgeable about this age group. One of our clinic patients needs help getting insurance because he will be dropped from his parents’ insurance soon. Another patient is really anxious to find out whether the sperm he preserved years ago can be used to start a family now. It’s a challenge to provide comprehensive care that includes important referrals for cognitive testing and education/career support, financial assistance, sexual health, fertility and mental health.
Finally, it is clear that support from peers is often crucial during and after treatment. Many of us have seen our own teens and young adult children suffer from the loss of contact with their peers during the pandemic. Imagine adding a cancer diagnosis and the loss of independence that can happen if the young person needs to move back in with their parents. Moving out and back to the independence they crave may be difficult after treatment and both the patients and family need encouragement to help this happen. One of our first GREAT Clinic patients commented after her visit, “I’m so glad to be treated like an adult and given all the information I need!”
I know that the impact of hearing patients’ stories and seeing the struggles they face is stronger because it’s new but I hope I can keep learning like a newbie for a long time.
Hilary Gan, Director of Hospital Programs and Services and Kara Noskoff, Hospital Programs and Services Manager discuss updates with Teen Cancer America and growth opportunities within the AYA cancer community.
When working from home we quickly realized the great value of face-to-face interaction for building rapport and assessing patient needs.
Amanda discusses groundbreaking clinical trial involving the use of virtual reality to conduct support groups for adolescent and young adult oncology patients.
To the outside world it is their “new normal.” This “new normal” is not completely foreign to us in oncology, which is strange to say during a pandemic.
“I have been a nurse for over 36 years, and I can tell you that I have never seen anything like this. I pray for my brothers and sisters on the front lines they are the last line of defense.”