We first met Pam Simon in 2014, as Send It was just getting started and she was building the Stanford Adolescent and Young Adult (AYA) Cancer Program. Pam was instrumental in connecting us with some of our very first participants. Over the past decade, she has supported hundreds of young adults navigating cancer and helped advocate for the unique needs of this often-overlooked population. Our Executive Director, Katie Schou, sat down with Pam to reflect on what she has learned from working so closely with this community and the support that young adults need to navigate life during and after cancer.
KS: Beyond medical treatment, what unique challenges do you see most often for adolescents and young adults navigating a cancer diagnosis?
PS: In the beginning, it’s so hard because they’re getting so much information. I feel like they’re just spinning in the same place, not feeling like they’re moving forward. And that’s a real challenge for this age group, because this population of patients is so used to moving forward, always looking forward, reaching for the next goal.
And then all of a sudden, cancer makes you live day by day… That lesson is hard. And they don’t want to learn that lesson. Nobody does. But I think for this population of patients especially, it’s super hard, because it’s not where they’re at in life, or where they should be.
And it’s hard, because they do go through anxiety and depression. No matter how well they do, they’re going to go through that for some part of that period of time.
KS: When you think about adolescents and young adults (AYAs) who fall between pediatric and adult cancer care, what stands out to you about their experience?
PS: One of the biggest things I see is the loss that these patients go through – whether it’s real losses or potential losses they have to think about like losing their fertility, physical loss, etc.
It’s really tough, because they don’t know what they don’t know. They’re thinking about all of the worst things that could happen, and the only experiences they have most likely are older people that have had cancer so that’s what they think this is going to be like. So they come into it with expectations that probably aren’t the real expectations.
But then I also see the other side of it, they’re this group of patients who are doing so many things, they’re at the edge of everything. And then, boom, the cancer diagnosis comes.
That’s why AYA and support programs are so important. They show these patients it doesn’t have to be a wrench all the time, and it doesn’t have to cause all of these issues just because you got cancer.
KS: What role does support outside the hospital play?
PS: Hospitals and clinics are very safe for patients. Once they get going on treatment, they know what to expect. Outside of that, it can be very scary.
But if we can prepare them and help them move out of that comfort zone, they grow. And, they see themselves grow.
We need to have them in the hospital at some points, right? But making sure that they are able to experience life outside the hospital is really the key to keep them moving in the right direction.
They need that support to go outside of that comfort zone and also to keep that support going outside the comfort zone.
The support outside the hospital is actually more important, because that’s where they’re going to be. That’s where they want to be.
KS: What changes do you notice when young adults step outside clinical spaces?
PS: They grow and they see themselves grow.
When they can connect, even with one or more [fellow AYAs], is really when you start to see that flourishing, that coming back to okay, who they really are. Because cancer may turn them into somebody else that they don’t really recognize.
When they go out and go to a Send It event or feel that support, they start seeing themselves again. And I think that really can help them get through the treatment – or for those who aren’t able to, or won’t do it until after the treatment – it can really help their recovery.
And even though they don’t know they need it, the experience fills the soul and helps them heal.
The other part is helping them understand they aren’t helpless.
Because that’s pretty much what we make them feel – I’m helpless. I can’t do anything. You’re telling me everything, when to take my medicine, when to wake up, when to go to bed. There’s no – Where am I in this?
For this population of patients, that’s what they need. It’s something they can do independently, without their parent or their spouse, or whoever it is that they rely on, on a regular basis to help them through cancer treatment.
It’s a way for them to get away, but also to find themselves. And see that – Okay, It does feel like the support that I need is super important, but I also need that independence.
So much of that is taken away. And finding things like Send It, can really fill that hole that they’re feeling.
Being able to tell their story is super important, too. And they don’t usually want to because they don’t want anyone to know.
But once they are able to tell their story, and they hear other stories, and they see how their story helps others too, that is always really inspiring because it just gives them more confidence.
It gives them a purpose as well, right? – All of what I am going through, telling my story might just help the next person.
And often it does. And when you get so many people together like that, that can tell the stories, it just makes it that much more supportive. And helps them understand –Wow, this is helpful to actually talk about this. I’ve been keeping it inside for so long. And being around others who understand—you usually can’t find that in the institutions where they’re being treated.
KS: Are there other things that are top of mind or present for you as you think about how to best support this demographic, either in the medical system or outside?
PS: I think advocacy is the most important thing. It’s getting harder to do in the world we’re living in. Even though we’re doing it regularly, seeing how we can make a bigger difference, and how we can grow our own programs—is getting harder.
But it also brings home, at least for me, just how important this advocacy is—how important it is to fight. Because they can’t always do it for themselves. They need us to advocate for them.
They eventually will be able to, we hope, advocate for themselves, and for others, but that usually takes a while.
So continuing to keep this AYA population, and also everyone who works with them, together will make us stronger, and continue to figure out ways that we can advocate. Because in the times that we’re living, it gets harder to do that. Resources are potentially getting cut, and these are the kinds of patients who will suffer if that happens. Even with insurance, it’s going to be these vulnerable populations [who are most impacted]. So our advocacy is even more important now than it was before.
It’s hard even at Stanford, because of health care constraints. They’re either in the pediatric or the adult [oncology] and neither system is built for them.
