In Their Own Words: After a Diagnosis, Adolescents and Young Adults with Cancer

Uploaded by NCIcancerbulletin on 28.07.2011

Andy Miller: You know,
my advice as a young adult
cancer survivor myself would be,
you're not alone.
Although cancer is rare
in this population as compared
to children and older adults,
there are other people
out there, and you can
find help.
Jessica: I think what you need
to do when you're diagnosed,
is allow yourself
to accept it first, and second,
get help, get support.
So the greatest advice
that I could give is,
make use of your support
network, make use of people,
family, friends in your life.
They will help you get
organized, informed, and ready.
Stuart Siegel:
If I were approached
by a newly diagnosed patient,
I would say, number one,
you want to go, if you can,
to a center
where there is an appreciation
that young adults
with cancer are different
than a child and an older adult.
Number two that they have become
familiar with the new
information that's coming
out about young adult cancer,
the issues that young adult
cancer patients face
and that they are able
to address those issues
with resources that are either
at their institution
or are available
in the community
that they have connected with.
Trevor: Find a doctor you're
really comfortable with.
It's okay to try one, two,
three, even more than that,
until you find somebody
that you feel has your best
interest at heart and is going
to give you the attention
you need.
Nita Seibel: Don't be afraid
to ask the questions,
about clinical trials
and getting a second opinion.
Brandon Hayes-Lattin:
I think the most important thing
to tell a young adult who's just
been diagnosed is
that they're not alone.
Especially if you consider a
young adult
in an adult cancer center,
oftentimes the majority
of patients
around them are going
to be significantly older
than they are, and they're going
to feel really isolated.
So letting them know
that they're not alone
and there is a young adult
cancer community
that can help both in terms
of getting through treatment,
but also in terms
of finding peers and working
through unique issues like,
what am I going to do
about fertility, what do I tell,
my potential spouse,
what do I tell my employer,
my school, that there are a lot
of young adults that have been
through this,
and they don't need to go
through it alone.
Brian: If I could go back
and do it again,
I would definitely look
for the support system,
because it is there.
Debra Friedman:
My recommendation
for an adolescent
and young adult who's just been
diagnosed with cancer is to seek
out care preferably
in an NCI Comprehensive
Cancer Center.
If an NCI-Comprehensive Cancer
Center isn't accessible to them,
then an academic institution
that participates
in clinical trials,
that's what's really important.
Julie Larson: This is a time
in your life
where you're learning a lot
about yourself.
Not just about work
and where you're headed career
wise, or who you're going
to marry, but also about how
to take care of yourself.
And in many ways,
what an opportunity,
that seems like such an odd
word, but what an opportunity
to kind of take this time
to figure out the best ways
to handle loss,
to handle anxiety,
to care for yourself
in these times.
Amy: The best thing I ever did
was have somebody sitting
in the room with me
who wasn't attached to me.
Who could ask questions
that I wouldn't think to ask,
that my husband wouldn't think
to ask.
You know we were new
with cancer,
so how do you know what you're
supposed to ask?
You don't, so have an advocate
with you, contact outside
organizations that can help you
through the process
and tell you what kind
of questions you can ask.
Trevor: It feels good to talk
about it with other people,
or just have some kind
of a way to vent.
So I'm kind of an introvert
by nature and I actually, like,
started a blog.
It was sort of a forum for me
to get my feelings
out there and,
so I'd encourage that,
it's not for everybody,
but I think it is useful.
Brandon: You can find a whole
community online.
Even if you're home alone
at 3 o'clock in the morning,
you can probably log on
and find another young adult
who you're sharing an
experience with.