Aging Out of AYA: What’s Next? Program Summary

~Liz Hiles

On Thursday, August 25th, we teamed up with our friends at Young Adult Survivors United (YASU) to explore the unique challenges people face when they are approaching and/or have aged out of being an AYA (adolescent and young adult) cancer survivor. Unlike many of the Gryt Health programs, we did not record this event in order to keep the space comfortable and open for participants to share their true thoughts, feelings, and experiences around this subject. The evening was moderated by YASU’s Founder & Executive Director, Stephanie Samolovitch, and Gryt Health’s Engagement Specialist, Liz Hiles. 

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We welcomed a great group of young adults to the Zoom room to discuss and start brainstorming solutions to the gaps in services for cancer patients and survivors between the ages of 40-60. Those who are too old to still be in the “young adult” groups but who are not yet considered “elderly.” 

Since the group included people from various other groups, we did Gryt Health and YASU introductions to explain what each organization offers and the staff running the event for the evening. We were also fortunate enough to celebrate Stephanie Samolovitch’s 17-year leukemia cancerversary! What a milestone!

After all the introductions and the usual housekeeping reminders, we dove into the conversation. 

Stephanie asked the group, 

What are your top concerns and daily struggles as someone aging out of AYA?

Some of the common threads of this portion were: losing support, comfort in the community/communities we’ve been involved with, not feeling comfortable in generalized groups where the average age describes retirees, and relatability of the new groups we feel forced to join. Some people shared experiences of being attacked or chastised for wanting to discuss challenging or taboo topics that are a bigger deal for younger people than they are for elderly or teen groups. 

Leaving the AYA cancer community often makes it more challenging to find people experiencing similar struggles on a number of levels. There are also financial struggles and funding gaps for assistance and other services, in addition to dealing with chronic conditions derived from the side effects of our life-saving treatments.

It was also shared that men navigate the various support options very differently since most groups are dominated by the female presence. Much like there are some topics that a 20-something would not want to discuss with a 70-something, there are topics that men wouldn’t feel comfortable discussing with women and vice versa. 

Many still feel they do not really socially fit in due to the medical traumas we’ve experienced that our peers have not. There are also delays, detours, and even complete U-turns in career goals and trajectories. Not to mention the societal expectations that just because treatment is over and you’re NED, you’re all good now, right?! How much do you share with newly diagnosed people? Are you really real with them, or do you hold back, so they’re not even more overwhelmed and scared?!

The second question posed to the group was

What are your daily struggles and challenges that make your current situation different from people in their 20s?

Parenting and the differences in financial responsibilities were two of the biggest challenges shared with this question. One participant shared that they found it hard to relate to someone who was still living with or moved back in with their parents because she had a mortgage, which was not an option she felt like she ever had as an older AYA. 

Another common thread was that not only are WE patients and survivors, but several of us are now caregivers either to children or parents with chronic health conditions, including but not limited to cancer. How exactly do we find the strength to power through while taking care of our own health and the health of others simultaneously?!

Just being at different stages of life is often a challenge in the AYA spaces when you have a range of people from 15 to 39+. Those on the lower end of the AYA age range are worried about high school or college, fertility, and dating issues. Some of the people on the older end of the spectrum are instead thinking about sending their children to college, planning weddings, and welcoming grandchildren into their lives. 

Older survivors are also at very different places in their careers. They are not concerned with establishing their careers but with climbing the corporate ladders and maintaining the promotions, they’ve earned over the years or achieving career milestones. The struggles are real but so different!

Some of the survivors shared that due to the age differences between themselves and the younger members of various groups, they often felt like or were actually dubbed as a parent in the group, which also changes the dynamics of sharing because some younger members didn’t want to talk about some sensitive topics with someone they viewed as a mother or father figure. 

However, one person shared that she was the mother of a childhood cancer survivor, and she shared that we should not discount the experiences and input that we share with younger people. She said that she can talk with survivors and share information with her son, and he won’t listen to it at all, but if she sits him down in front of someone who lived through a similar experience that he’s lived through, he’ll eat up the information shared. 

A few points were also made that self-care also looks different for every single person and that it has different cultural values placed on it so that people of different ages may be struggling with similar issues but struggle with the different ways that the people in their lives will perceive them as being if they focus on themselves instead of their families. 

Some attendees said they would like to see mentorship programs develop – both for the people making the transition out of AYA and also serving as a mentor for newly diagnosed AYAs. Everyone agreed that a lot of wisdom can be shared both ways. 

Some in the community have a hard time relating to some of the issues people are dealing with simply due to the anatomy and other physical changes they experienced to save their lives. Older AYAs and those beyond the AYA range are often also unwilling to compromise on major life issues or play time-wasting mind games in relationships after a cancer diagnosis. 

Mental health was brought up as a separate challenge, and everyone agreed that it is something that needs to be addressed, though many refuse the support offered in this area. The point was brought up, however, that hopefully, due to the COVID-19 pandemic, mental health was brought to the forefront and is being seen more as a critical and necessary part of overall health. We are hoping this trend continues and would like to promote it among the various cancer populations and communities. 

Stress, anxiety, depression, and PTSD are all part of the realities of many cancer patients. It is something that most survivors need assistance with, regardless of age. 

Along with dealing with the financial toxicity of cancer treatments, medical insurance was also brought up. Many have had to deal with insurance not wanting to cover various necessary medications or other treatments that our care teams deemed as medically necessary. Some of us have had helpful care teams who went to bat and fought for what we needed, some have not. However, not everyone has a medical team that takes care of those things, and some have had to fight with insurance and act as a go-between between their insurance companies and their medical offices. 

A few people in the group praised the various organizations that offered virtual support options as in-person support was nearly non-existent or not as comfortable as the virtual AYA support options. The group definitely wanted to see some opportunities to possibly be in-person at some point, but overall wanted the ease and convenience of being virtual. 

Recognition was also given to the fact that sometimes the idea of a “support group” is off-putting to some young people, especially men. Making sure that organizations word things differently is important so that people want to reach out and get involved instead of struggling with misconceptions about what a modern support group looks like. A few attendees discussed their negative experiences with support groups as well. 

Another challenge of being a part of any cancer community is dealing with loss and grief. Many do not address these issues directly and just shove them deep down inside. This is not a healthy way to deal with this. The moderators stressed that this topic must be carried across the board in cancer communities to help people acknowledge and heal from loss and grief while also remembering those dear friends we have lost. 

Unfortunately, being active in the cancer community can get heavy. However, there is absolutely no reason for us to go through loss and grief alone. 

Lastly, we talked about what we would want from a support program for ages 40-60. Stephanie posed the questions: 

What would you want? What would be helpful?

Many agreed that hybrid support and social events would be the ideal solution but that virtual options would be a must so that more people can have access to the events. Other things that would be desirable are mentorship, advocacy, and educational opportunities; blood drives; support for advocacy aspirations; monthly virtual meetups; and possibly a private virtual platform where members could come and get support 24/7/365. (For the record, if you didn’t know, Gryt Health has a platform already available away from social media sources where you can share and receive support more anonymously! You can check it out here!)

One of the things discussed around the topic of monthly virtual meetups is the idea of making sure to offer times for the meetups and other programming that shifts to make it convenient for people in various time zones. A lot of AYA programming is currently based on east coast times, which 7 pm is perfect for some as it is after people on the east coast have an opportunity to get home from work and possibly even grab a bite to eat before they start. The people on the west coast often haven’t even left work yet. Not to mention the few organizations that consider themselves to be global entities yet offer programming at evening times in the US when our community members in Europe are in the wee hours of the morning and our Asian friends are trying to get out of their doors to go to work. Shifting times would make the services available to many more people. One person also noted that since they are in treatment and not working, daytime hours are often more open and flexible because children are at school and significant others, friends, and adult family are all at work, so some daytime options would be beneficial for those in treatment. 

Many also agreed that discussing non-cancer topics was often helpful and even more desirable than cancer-related ones. Having meetups and topics of discussion that revolve around more mundane topics like various forms of entertainment or hobbies is a most welcome distraction from cancer and treatments. Things like craft nights or color-and-chat opportunities are great for stress relief. 

The conversation with this group flowed the entire evening, and it had Stephanie and Liz’s brains whirling with thoughts and ideas. No one can solve the world’s problems in 90 minutes, but we definitely have some ideas for moving forward!

Please stay tuned and follow YASU and Gryt Health on social media as we collaborate with each other and other organizations to work towards some solutions to expand support to this special age group! There WILL be MORE to COME!

As a reminder, both Gryt Health and YASU have ongoing programs that can be attended.

Gryt Health has monthly meetups on the second Tuesday of the month currently. You can register for one or all of these here.  

In November, Gryt Health is hosting our Fourth Annual Global Virtual Cancer Conference (GVCC). You can register for this amazing experience here. It is completely FREE and VIRTUAL!

If you would like to participate in patient-centered research, Gryt Health also has The Gryt Project. To sign up or get more information, go here to find out how your voice can make an impact!

YASU offers a number of weekly, monthly, and quarterly meetups as well as virtual and in-person social events. They are also excited to share that their most popular series, the 12-month Self-Love Workshop, will return in October. You must register with YASU in order to have access to their programs. They send weekly emails out with the upcoming program information. You can register to participate in YASU programs here. 

On Friday, October 28th, YASU is hosting its annual fundraiser in Pittsburgh, Pennsylvania. All are welcome to attend their WIG OUT! (No, that’s literally the name of the event!) Wear a costume if you please, but most attendees do actually wear Halloween wigs! Tickets will be available on September 16th, but in the meantime, you can check out the wrap-up video from last year! 

There’s plenty to keep all of us busy in the meanwhile!

If you missed this special program and would like to share your thoughts on any of the questions above (or more!), please let us know in the comments section below! We want to hear from you and create solutions that benefit everyone!