Narrator: Coming up on Mayo Clinic Q&A, a cancer diagnosis
can be a frightening experience for anyone, but for adolescents
and young adults that experience can also bring some unique
challenges. Some receive care in pediatrics, but the majority are
cared for in adult cancer systems with many facing issues
with access to appropriate care. Today, we'll look at the
adolescent young adult program at Mayo Clinic and learn how
these individuals are being supported and treated throughout
their cancer journey.
Dr. Allison Rosenthal: With this being an underserved,
under-recognized under-diagnosed population for the most part,
they really are the poster children for facing disparities
when it comes to their diagnosis and care. And so, one of the
biggest issues that we have to overcome here is that a lot of
young adult patients have delayed time to diagnosis. And
with delayed time to diagnosis when it was more advanced stage
disease, you end up with different treatments being
needed and more long-term considerations.
Dr. Halena Gazelka: Welcome, everyone to Mayo Clinic Q&A. I'm
your host, Dr. Halena Gazelka. April 4th through 10th, is
adolescents and young adult, or AYA Cancer Awareness Week. It's
an excellent time to discuss the unique challenges faced by
people between the ages of 15 and 39 when they experience a
cancer diagnosis. While some AYA people with cancer receive
care in pediatrics, the majority are cared for in the adult
cancer systems, and sometimes people in the group don't fit
well with either patient population. Here with us to
discuss this is Dr. Allison Rosenthal. Dr. Rosenthal is a
Mayo Clinic hematologist and oncologist who is developing a
program at Mayo Clinic Cancer Center to meet the unique needs
of AYA patients. Welcome to the program, Allison.
Dr. Allison Rosenthal: Thank you so much for having me, and I'm
really excited to be talking about this topic as it's
something I'm really passionate about.
Dr. Halena Gazelka: I can imagine. What a really
interesting topic, and what a difficult time for someone going
through life. How is it different to be an adolescent
and young adult or an AYA individual who is going through
a cancer diagnosis?
Dr. Allison Rosenthal: Yeah. So, I think that's the really
important thing that we have to start bringing to light and
educating people on is that it is different, right? It's not
the same as if you are diagnosed as a child or even as, you know,
10 or 12-years-old, it's not the same as if your diagnosis is at
55, or 65, or a 75-year-old. And if you think about the kinds of
things that people in this age group are going through, there's
a lot of life transition happening there. So, this group
really has a lot of unique needs as far as psychosocial
development, you know, what they're going through as far as
trying to find their independence, financial
independence, some of them are still in school, some of them
are trying to start families. And so, it's just, you know,
there's never a convenient time to be diagnosed with cancer, but
particularly inconvenient in this group. And they often get
overlooked because I think people just don't recognize that
cancer is really common in this age population as well.
Dr. Halena Gazelka: Are the cancers that are experienced in
this age group different than what older adults or young
children might experience?
Dr. Allison Rosenthal: So, people of any age can get any
kind of cancer, but you're absolutely right. There are
some cancers that are more common in this age group. And
while the numbers change periodically, I think the ones
that are most common at this point end up being thyroid
cancer, breast cancer, melanoma, blood cancers. And there's been
a rise in the incidence of GI cancers in this group as well,
for reasons I think we're still trying to sort out. But it is a
little bit different. And so, that goes, you know, in the same
vein as, you know, we have to educate people and have better
awareness as to what affects this group.
Dr. Halena Gazelka: So, if these individuals might be
experiencing the same cancers as someone who is older, are the
treatment strategies and approaches to how to care for
them different?
Dr. Allison Rosenthal: It can be. So, as you alluded to in the
introduction, some of these patients do get treated in the
pediatric setting. And so, that's largely our later teenage
patients. However, there are some pediatric programs that are
really comfortable taking care of people even up to the age of
25. And I specialize in lymphoma. So, what I know the
most about are blood cancers and the differences in treatments
there. But there is a huge difference in what would happen
if you were 18 with let's say, Hodgkin lymphoma, which is
common in young people, and you get diagnosed and treated at a
pediatric center versus if you come to an adult center. And
because those treatments are designed differently, and the
toxicities are different in the short and the long-term, one of
the real issues we have with this population is that
sometimes we don't speak the same language, you know. So, if
a pediatrician or a pediatric oncologist calls and says, I
have this patient, here's what I'm thinking, what do you think?
I have to look up the regimen they're talking about because we
just don't talk the same. And so, one of the things we're
hoping to accomplish with having this group and having better
coordinated comprehensive care and transition from peds to
adults, is making sure that we are all on the same page and
understanding, you know, what we think might be the best
treatment for them no matter what age they are.
Dr. Halena Gazelka: Allison, here at Mayo Clinic, we are very
aware that disparities exist in health care and that they can
really affect the treatment that an individual receives. And we
are working hard to diminish those disparities and resolve
them. Are there disparities that are that are present in this age
group when they're going through cancer therapy?
Dr. Allison Rosenthal: Sure. So, this is really important also.
And some people who are studying this age group, in particular
young adults who get diagnosed with cancer, are really looking
at this now and how to improve this because with this being an
underserved, under-recognized under-diagnosed population for
the most part, they really are the poster children for facing
disparities when it comes to their diagnosis and care. And
so, one of the biggest issues that we have to overcome here is
that a lot of young adult patients have delayed time to
diagnosis. And with delayed time to diagnosis, you end up with
more advanced stage disease, you end up with different treatments
being needed and more long-term considerations. The other thing
is that there is a really big gap in young adult patients with
cancer having access to appropriate care. And that means
both age-appropriate support for what they're going through, but
also centers, you know, there aren't a lot of centers or there
isn't a good way to find a center that has expertise
particularly in taking care of this population. And then I
guess the third thing that ends up being really important is
that this population really experiences some challenges with
being insured properly, right? No one ever plans for cancer.
Nobody ever thinks I'm going to get this plan so that I can have
good coverage if I get cancer. But one of the things that
happens in this age group is they age out of being covered by
their parents, or maybe they've already gotten married and
started a family. And so, now they're on their spouse's
insurance or something. And so, one of the other disparities
they face is being under-insured or inappropriately insured. And
so, if you lump that all in with all of the social determinants
of health that we've all been talking about, you know,
recognizing as being barriers to good care, you take the racial,
the ethnic, the socio-economic challenges that any patient with
cancer may face, and then put it together with all the challenges
this unique population faces, they really have, you know, a
lot of disparities that they face. And so, we have a lot of
work to do in this space.
Dr. Halena Gazelka: Wow, that is a lot, Allison. So, how does
the adolescent and young adult cancer center program that
you're putting together for Mayo Clinic help meet some of those
unique needs?
Dr. Allison Rosenthal: So, this is really exciting that we
finally have gotten the attention of enough people to
understand that they have unique needs and that a program needs
to be built around those needs. And so, kind of the holy grail
or the perfect, the ideal program that we're hoping to put
together keeps all of that in mind. So, it combines what we do
well at Mayo Clinic, which is multidisciplinary, you know,
state of the art comprehensive care for cancer patients, and
then pairs that with things that this group needs. So, ideally
we'll have a nurse navigator that all the patients will meet
as they come in to the system, a social worker dedicated to AYA
issues and needs, health psychologists. It will take
some time to build all this up and have all the right people in
place, but we'll also need things like financial
counselors, people to help with the insurance concerns,
vocations counselors, so as people go back to school, or
have school interrupted, or trying to find a job. And then
of course, we'll have to make sure that what's built into this
is a very clear, concise, and coordinated transition from
pediatrics to adults. Because that's one of the other
challenges we face here is some of these kids will be diagnosed
at the age of 16, or 17, and they'll need adult care soon.
And so, we have to make sure that we're doing everything they
need in the short and long-term to transition them to long-term
care and follow-up as well. And the one thing that I left out of
there, that is probably also, you know, one of the most
important things is having survivorship care that focuses
on the needs of these patients as they move forward. We're
really fortunate that the majority of young adult patients
who get cancer care are going to do well in the long-term,
there's going to be a lot of long-term survivors. But if we
aren't paying attention to the long-term treatment side-effects
and the monitoring and maintenance of health behaviors
and such that happen after a cancer diagnosis, then we aren't
doing, you know, the full service for these patients that
they really deserve.
Dr. Halena Gazelka: What role will clinical trials play in
this?
Dr. Allison Rosenthal: Clinical trials are going to be critical
to the success of this program and mainly to help improve
outcomes. So, one of the things that got the AYA group kind of
into the spotlight as needing more attention and more
dedicated attention is that the outcomes for cancer care in the
young adult population haven't improved nearly as fast as they
have in pediatrics and older adults. And so, clinical trials
are really, you know, the optimal way to improve outcomes.
And one of the challenges, the big hurdles with this group has
been that their participation in clinical trials has been really
poor, and that's for a couple of reasons. One, there aren't a lot
of clinical trials that address this entire age group. They
happen in pediatric programs, they happen in adult programs,
but there's not a lot of crossover in making sure that
there are trials that encompass the whole group. Education, so
these patients have, you know, varying ideas about what
clinical trials are for and what they mean to them. And then
access to centers that are running them. Unfortunately,
that's all changing. So, there are a lot of cooperative groups
that are getting together now, both from the peds and adult
side to say, look we really need to study this better, both from
finding new treatments, new combinations that are less
toxic, but also looking at things like behavioral
interventions and, you know, physical activity interventions
and ways to help manage some of the psychosocial effects that
this has on people. So, absolutely, clinical trials are
going to be critical to the success of this program. And
we're really looking forward to building that out as this
program takes off.
Dr. Halena Gazelka: What an exciting program. I just loved
hearing about this today, Allison. It's incredible
solutions that you're looking for to some common problems for
people in this situation. When will the program be up and
running?
Dr. Allison Rosenthal: So, it's in its infancy now. We're up and
running with the people that we have identified as kind of being
champions in this space and interested. It's important, I
think, to recognize that this program isn't going to take the
place of anything that's already happening. It's going to serve
as kind of a complementary support system really for these
patients. So, they will continue to get all the excellent care
they're getting in their disease directed groups. Now there are
disease specific groups now, but this will be an added layer of
support, you know, mainly focused on, you know, what the
issues are specifically with this population so that things
aren't falling through the cracks. And ideally as everybody
comes in, there's a needs intake assessment, so they get
connected with all the right resources right from the get-go.
Dr. Halena Gazelka: That's wonderful. Thank you for sharing
this with us today, Allison.
Dr. Allison Rosenthal: You're welcome. Thank you for having
me. I'll talk about this all day long any chance that I get.
Dr. Halena Gazelka: Our thanks to Mayo Clinic hematologist and
oncologist Dr. Allison Rosenthal for being here today to talk to
us about adolescents and young adults with cancer diagnoses. I
hope that you learned something. I know that I did. We wish each
of you a wonderful day.
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