Pediatric Cancer Survivorship: The HERO'S Clinic

Dr. Nina Kadan-Lottick, Pediatric Cancer
Survivorship: The HERO'S Clinic February 1, 2009Welcome to Yale Cancer Center Answers with Dr. Ed Chu and
Dr.  Ken Miller, I am Bruce Barber.  Dr. Chu is Deputy
Director and Chief of Medical Oncology at Yale Cancer Center and an
internationally recognized expert on colorectal cancer.  Dr.
Miller is the Director of the Connecticut Challenge Survivorship
Program and is also the author of "Choices in Breast Cancer
Treatment."  If you would like to join the discussion, you can
contact the doctors directly at canceranswers@yale.edu or
1888-234-4YCC.  This evening Ed Chu is joined by Dr. Nina
Kadan-Lottick, a Pediatric Oncologist and the Director of The HEROS
Clinic for Pediatric Cancer Survivors at Yale Cancer
Center.Chu Let's start of by defining cancer survivorship, cancer
survivors.Kadan-Lottick
The National Cancer Institute would define cancer survivors as any
individual who's experienced a cancer diagnosis and is trying to
maximize their quality of life and their health.Chu
Is there any difference in definition between say, a pediatric
patient as opposed to an adult patient who survives cancer or who
is diagnosed with cancer?Kadan-Lottick
Yes, there are some important differences because of the
developmental and physical milestones that should occur during
childhood that can be disrupted by the cancer. These things can
include progressing through puberty, they can include fertility
because there can be different vulnerability of young boys who are
exposed to therapy, and this can also include effects on the brain
and learning because the brain is still forming during those
periods of time.Chu
Let's get into that in a little bit more detail later.  In
general, how many cancer survivors are there here in the United
States would you say?Kadan-Lottick
There was an estimate of childhood cancer survivors, so this would
include people who are of any age now but had a diagnosis of cancer
under the age of 21, and it is estimated that approximately one in
five hundred young adults between the ages of 20 and 39 in the U.S.
is a childhood cancer survivor; that corresponds to several hundred
thousand people. Because childhood cancer survival rates continue
to increase the numbers, we are going to have more and more people.
Currently 80% of children are long-term survivors of their
cancer.Chu
That is also one of the distinguishing features between pediatric
cancers and adult cancers.  In adulthood there is still a
relatively small number of cancers that we can say we can cure, but
for the diseases that you take care of in the pediatric population,
that is significantly different.3:05 into mp3 file 
http://www.yalecancercenter.org/podcast/Answers_Feb-01-09.mp3Kadan-Lottick
 It is.  For some of our leukemias and kidney tumors, and
others, we have actually reached survival rates well into the 90s
and are now talking about decreasing therapy so that we can
minimize adverse outcomes later in life.Chu
And these are cancers even in the most advanced stages?Kadan-Lottick
Absolutely.  How well we have conquered it depends on what the
cancer is, but we have done particularly well for leukemias and
kidney cancers.Chu
Just curious Nina, if you compare the rates of pediatric patients
surviving their bout with cancer now, as opposed to say 10 or 15
years ago, how are we doing?Kadan-Lottick
It is dramatically different.  In the early 1970s most of
these cancers were uniformly fatal, so we have gone a very long way
in a short amount of time. We have done it by having academic
centers like Yale that participate in clinical trials that team up
clinicians with researchers so we are always offering the best
available therapy and the newest ideas that are coming down the
pike so that our patients can benefit from them. That is how we
have marched forward, instead of being content with the status quo
of those low cure rates we have researched new ideas that were
promising and that paid off.Chu
It has also been pretty impressive to me, as an adult oncologist
watching the pediatric world, how the major pediatric centers have
really come together to form a network, if you will, to develop
innovative state-of-the-art clinical trials for each of the
different cancers afflicting pediatric patients.Kadan-Lottick
There is a network of 270 centers in the United States that all
participate in the same clinical trials so that we can meet our
enrolling goals and go through a novel, exciting idea every year or
two and move on to the next idea. In that way we have been able to
progress, but this really speaks loudly that children should be
treated at an academic center to get the best available treatment,
and I guess that would be true for adults too, but adults do not
have that same kind of treatment pattern right now, where they are
treated only in academic centers or in partnership. That is
something we have also realized with survivorship, while children
are initially treated in the academic center, we expect and want
the children, or young adults, or even middle-aged adults, to get
their care in the community with a high-quality primary care doctor
because the issues that we think about later in life are ones best
suited to be managed by someone who has a long term relationship
with the patient and is focused more on wellness care rather than
our environment which is often focused on critical care.6:42 into mp3 file 
http://www.yalecancercenter.org/podcast/Answers_Feb-01-09.mp3Chu
 What are some of the short term and long term consequences of
cancer therapy, especially for pediatric patients? Let's start off
with the short term, but obviously in terms of cancer survivorship
the key issues are the long term consequences.Kadan-Lottick
Short term we see problems in growth and in development, and
problems in terms of becoming part of the peer group and
integrating back into the peer group; those are some of the
immediate problems.  We also see immediate problems with
family functioning because when a child has cancer it is so
devastating for the family financially and emotionally that there
is a higher rate of divorce, and the economic status of the family
usually decreases considerably because someone may have to stop
work to care for the child.  Long term, we have appreciated
that therapy, even though we are winning the battle against cancer,
about two-thirds of children who are survivors of childhood cancer
will experience at least one significant chronic health condition
due to the treatment, not the cancer.  One-third will develop
a severe problem related to the previous treatment and it can
affect almost any organ system depending on the therapy, everything
from problems with heart function and heart failure, infertility,
hormone problems, problems with learning and thinking, problems
with lung scarring and kidney function. Also, there is about a six
fold increased risk of a new cancer, a different cancer, which is
higher in certain groups that get radiation.Chu
This risk of a secondary cancer, does that risk ever return to
normal or is there always a continued risk throughout their entire
life?Kadan-Lottick
It depends on the target tissue, for breast cancer the risk
increases with time. The risk starts increasing about 10 years
after radiation exposure to the chest and continues to
increase.  Another example would be certain chemotherapy
agents that increase the risk of leukemia, but that risk peaks at
10 years.  It varies on the exposure and it varies on the
target tissue of the chemotherapy or radiation and that is why we
have a center like our HEROS Clinic, which we view as a consult
clinic where we can give an individualized monitoring plan that can
then be carried out by the primary care doctor. We can give
guidance in an area where we have the expertise, and it is really
not reasonable to expect a primary care doctor, or a general
oncologist, to have this expertise. We can list exactly what the
patients had for them by reviewing the records and then give very
individualized recommendations on what their wellness care and what
their ongoing screening should be.Chu
Are there any strategies to try to prevent or reduce the risk of
some of these long-term side effects from happening?Kadan-Lottick
There are.  One of the important ones is that many of our
clinical trials are reducing up-front therapy, because we have
realized that we can achieve cure without giving as aggressive10:38 into mp3 file 
http://www.yalecancercenter.org/podcast/Answers_Feb-01-09.mp3
 therapy, and we are examining that very carefully.  We also
are starting to give protectants at the time we give certain toxic
therapy to protect the heart, protect the kidneys, and protect
hearing.  A third strategy is that once the problem develops,
we are now developing interventions to improve it, so there are
ongoing studies in using stimulants for learning problems after
chemotherapy.  There is an interest in health style
modification such as exercise and nutrition to decrease the risk of
second cancers, obesity, and the risk of heart problems, and those
are being actively studied. We spearhead and participate in
multiple studies such as these in our HEROS Clinic, so that is our
other dual role.  First and foremost we are a clinic, but it
is very important for us to be a living laboratory and continue to
learn more on how to improve wellness in survivors.Chu
Nina, you are the Director of the HEROS Clinic, does HERO stand for
anything in particular?Kadan-Lottick
It does.  We started off with HEROS because we wanted an
acronym that was powerful and we often use the word "hero" when we
refer to our survivors and their family members. So then we made it
work backwards and it does fit nicely; Health Education Research
Outcomes for Survivors. We were very fortunate to have our
department of pediatrics at Yale Cancer Center, and the Tommy Fund,
start off our clinic about 6 years ago, then we received
substantial funding from the Connecticut Challenge so that we have
been able to expand our services to include a neuropsychologist
that screens every survivor for learning problems and emotional
distress. We include a nurse educator who does focused education
with individuals and composes a one-page treatment summary for
every patient that they can have wherever they go; whether it be an
emergency room or a new doctor, they can see quickly what their
treatments were and what problems they are at risk for.Chu
So every pediatric patient who survives their cancer will come to
the HEROS Clinic and will be seen and evaluated?Kadan-Lottick
Yes. We see all our patients that were treated at Yale, which
includes most of Southern Connecticut and parts of New York, but we
also have referrals from other centers, so you do not have to be
originally treated at Yale.  We have seen patients that have
been treated all over the country who come to get an evaluation.
Either they are seen once, or they are seen once every few years,
but the idea is really to do this with teamwork, with their primary
oncologist or primary care doctor who then does the actual
care.Chu
How many new patients do you see each year in the HEROS Clinic?Kadan-Lottick
We see about 50 new patients a year, and we have about 270 patients
now.  One area I am14:02 into mp3 file 
http://www.yalecancercenter.org/podcast/Answers_Feb-01-09.mp3
 very interested in, in my research, is that there are 13,000
childhood cancer survivors of any age in Connecticut; obviously we
are only seeing the tip of the iceberg.  I think there are
several reasons for this, the most important one being that I do
not think the survivors self-identify themselves as having unique
health needs.  I think that they feel like since they are done
with therapy, they are done, and they have no clue that they could
be at risk for these problems, which are often silent. The second
main reason is that it can be really hard to go back to a cancer
center once your treatment is done.  One of the areas that
Yale, and our program also, is very interested in is how to do
community outreach through virtual care, or directly teaming up
with primary care doctors to be able to provide this critical
information to patients without physically seeing them.Chu
You are listening to Yale Cancer Center Answers and we are here in
the studio discussing pediatric cancer survivorship with our
special guest Dr. Nina Kadan-Lottick.Chu
Welcome back to Yale Cancer Center Answers, this is Dr.
Ed Chu and I am here in the
studio this evening with Dr. Nina Kadan-Lottick, a Pediatric
Oncologist and specialist in the area of Pediatric Cancer
Survivorship here at Yale Cancer Center.  Before the break, we
were talking about the HEROS Clinic. Maybe for those who may have
missed that piece, could you review with us what the HEROS Clinic
does here at Yale Cancer Center?Kadan-Lottick
The HEROS Clinic is a consult clinic for survivors of childhood
cancer who are of any age now. What we do at the clinic is, before
the patient comes we review all their medical records and summarize
their treatment in one page, then we do a comprehensive visit in
which we screen the patient for medical and social problems or
adverse outcomes from their previous therapy. For many people they
have nothing, but we give a recommendation for17:02 into mp3 file 
http://www.yalecancercenter.org/podcast/Answers_Feb-01-09.mp3
 what ongoing follow-up should be so any problems that could
develop could be caught early, and we also educate those survivors
on how to change their own individual health habits to maximize
their health and to prevent these problems from occurring.Chu
What specific services are available to patients and their families
in the HEROS Clinic?Kadan-Lottick
Our HEROS team is a multi-disciplinary team that includes the
pediatric endocrinologist, neuropsychologist, nurse educator,
oncologist, and research coordinator.  What patients are
offered on a clinic visit is, they are seen by the physician and
they are screened by the neuropsychologist for any learning
problems or emotional distress that could be resulting from their
previous therapy.  They spend time with the nurse educator to
learn about their past treatment and what things they should watch
out for, and they are offered any research studies that may be
available, that they may be eligible for and interested in, which
is totally optional, but they can avail themselves of that if they
wish. Then after their visit they are given a written summary that
includes their treatment on one page as well as recommendations for
ongoing care. Obviously if we identify any problems we also arrange
appropriate follow-up and communicate directly with the primary
care doctor to work in partnership because that is the whole model,
we see ourselves as a consult clinic that works closely with
oncologists and primary care doctors to care for these
patients.Chu
And again, you are seeing patients that were not only treated here
at Yale, but treated by other pediatric specialists throughout the
state and around the local regional area.Kadan-Lottick
Exactly.  We see individuals who were diagnosed with a cancer
under the age of 21, so sometimes that has included patients who
were treated by medical oncologists and pediatric oncologists at
other centers who come to our center to have these different
services. They have heard about our clinic and want care, or want
to participate in one of our research studies.Chu
This really is a terrific program that you are offering to patients
and their families.  I am just curious, are there other
centers, either in the State of Connecticut or around the country,
that offer the same type of services?Kadan-Lottick
For pediatrics, I think that CCMC in Hartford is starting a program
by Dr. Eileen Gillan. There was a mandate nationally by the
Children's Oncology Group and the NCI that every center that treats
pediatric cancer patients should have a survivorship program. 
Now what it means is defined a little more broadly.  In some
places that may mean that your regular oncologist would see you and
discuss some of these things with you.  Our program is really
unique because it's multi-disciplinary and involves specialists
from the areas in which people20:39 into mp3 file 
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 can have potential problems; we have psychosocial support and we
have research studies that can help patients who are experiencing
problems. Chu
It would seem also that you and your team are focused in this
particular area, and I know that in the adult world we have a
similar type of cancer survivorship clinic. Truthfully, as much as
we like to think we know the issues, that team is much better
prepared to handle experiences and deal with all of the various
survivorship issues.Kadan-Lottick
Absolutely.  It is an emerging subspecialty of oncology
because we now have the luxury of so many survivors.  This is
not an area of expertise that we had during oncology training
because there were not enough survivors to focus on and this is
something that I spent extra time and extra training doing both in
clinical work and research work to develop this expertise. The real
key with this though is that many times the key information has to
do with being aware of what to screen for and what recommendations
to give, and the actual care that is delivered can be delivered by
a primary care doctor.  It is a very natural partnership and
it is very well suited to be a subspecialty clinic with occasional
visits.Chu
Nina, before we forget, could you list the number if anyone out
there listening wants to get more information about the services
that are available to them at the HEROS Clinic. Maybe give them the
number and if there is a website.Kadan-Lottick
We have a website, if you Google Yale HEROS Clinic you will find
it.  Our phone number is 203-785-4640, and that is the number
for our pediatric hematology/oncology section at Yale, and Teneta
is our stellar HEROS' nurse, and she would be happy to talk to you
more about details in the clinic.  Also, she does a lot of
hand holding and walking patient's through the process so that we
can get your records and so that you will know what to expect on
the clinic day.  The number is 203-785-4640 and you can either
make an appointment or you can ask to speak to Teneta, Christy, or
me to learn more about the clinic.Chu
Great, thanks.  At the end of the show I'm sure we will repeat
those numbers as well.  In general, how often do you recommend
a patient be followed up in your clinic?Kadan-Lottick
I would say at least once, and then, depending on the type of
treatment a patient has had and what the risk is for subsequent
problems, we decide to see them yearly, every couple of years, or
every few years.  For example, some of our highest risk groups
are individuals who had brain tumors, who had radiation exposures,
or who were treated with strong chemotherapy at a very early age,
such as under the age of 3. Those would be our highest risk groups
for monitoring for problems.  Still, they may not have any
problems, but these are the groups that we would like to see more
often to make sure we catch anything early.24:28 into mp3 file 
http://www.yalecancercenter.org/podcast/Answers_Feb-01-09.mp3Chu 
                      
 These would be neuropsychological development type issues?Kadan-Lottick
Neuropsychological development problems and growth problems with
hormones.  For example, with growth hormone deficiency after
radiation to the head and neck area, this is a problem that can be
very easily missed because many patients do not grow well during
therapy. Then what happens is, after therapy ends they pick up
their growth and clinicians are very content that they've done
fine, but what can be happen is that they are going through puberty
and they are growing rapidly, but that is all the growth they are
going to achieve, so it is really a false reassurance.  It is
not because people are not taking care of them carefully, it is
just because this is a very specialized type of patient population
with some very unique things to monitor for by people who see this
often. That is an example where you really have to catch something
quickly.  Neuropsychological problems are another that is very
important because they do not appear for a couple of years after
the treatment exposure; they occur with problems of working memory,
attention, ability to organize thoughts, and processing
speed.  But for children in school, the school no longer
associates these problems with the therapy that occurred years ago
and these children can get in trouble because these problems can
manifest as apathy or behavioral problems, or be perceived that way
when they are not. Then the children can fall farther and farther
behind and we know that children that get early intervention do
much better than those who do not, and those who get special
education services, and often these problems do not affect
intelligence, but how this type of information is processed. 
Knowledge is truly power in this situation, especially before
children lose their self-confidence or feel that they are too far
behind to catch up.Chu
It is interesting, in the adult world we call this chemo-brain, and
many patients will describe a kind of fogginess and things just
aren't clear. For a long time we did not really appreciate what
this was due to, but I think now we have a much better
understanding and it clearly has to do with the chemotherapy
effects.Kadan-Lottick
It is.  Even in individuals who do not have brain tumors and
who do not have radiation to the head, chemotherapy can cause these
problems, and especially in our society where there is so much
informatics and expectation of rapid response and multitasking,
this can really limit an individual or make them feel that
something is terribly wrong. A lot of times what is really
important is that we identify the problem and we encourage
individuals to do things differently in a way that they can
maximize their success and compensate for some of these issues. The
other thing that is also helpful is that this may not be a person
who would feel very successful being in a place where there is a
lot of chaos and rapid turnaround and multiple deadlines that are
overlapping; this person may do better with project-oriented work
or a career where you can be more thoughtful.28:01 into mp3 file 
http://www.yalecancercenter.org/podcast/Answers_Feb-01-09.mp3Chu                       
 It is amazing how time flies. Before we sign off could you again
give the number for anyone who would like to get more information
relating to the HEROS Clinic.Kadan-Lottick
The number is 203-785-4640. You could make an appointment, or ask
for Teneta, or for me, Dr. Kadan-Lottick.Chu
You can also probably go to the Yale Cancer Center website,
yalecancercenter.org, for more information as well.Kadan-Lottick
Absolutely.  We have a link through Yale Cancer Center as
well.Chu
Nina, it has been great having you and we look forward to having
you come back for a future show to talk more about the research
that you are doing with the HEROS Clinic.  You have been
listening to Yale Cancer Center Answers. I would like to thank my
guest, Nina Kadan-Lottick, for joining me this evening.  Until
next time, I am Ed Chu from Yale Cancer Center wishing you a safe
and healthy week.If you have questions or would like to share your comments,
go to yalecancercenter.org where you can also subscribe to our
podcast and find written transcripts of past programs.  I am
Bruce Barber and you are listening to the WNPR Health Forum from
Connecticut Public Radio.