Pediatric Cancer Survivorship

Dr. Nina Kadan-Lottick, Pediatric Cancer
Survivorship March 9, 2008Welcome to Yale Cancer Center Answers with Drs. Ed Chu and
Ken Miller.  I am Bruce Barber. Dr. Chu is
Deputy Director and Chief of Medical Oncology at Yale Cancer Center
and Dr. Miller is a medical oncologist specializing in pain and
palliative care. He is also the director of the Connecticut
Challenge Survivorship Clinic.  If you would like to join the
discussion, you can contact the doctors directly.  The address
is canceranswers@yale.edu and
the phone number is 1-888-234-4YCC.  This evening Dr. Miller
welcomes Dr. Nina Kadan-Lottick, the Director of the HEROS Clinic
for Pediatric Cancer Survivors at Yale Cancer Center.Miller
 Let's start off by talking about the definition of a cancer
survivor.Kadan-Lottick
 Recently we have realized that it has to be a broad definition,
and currently, we as well as the Institute of Medicine, define it
as anyone who has had a cancer diagnosis.  We even broaden
that definition to include family members and friends who have also
been touched by the cancer diagnosis. The reason for this broad
definition is that it is intended to incorporate all the ways that
cancer touches the lives of people.Miller
 In many ways it is more than just a disease of one person; it is a
disease that affects the whole family.Kadan-Lottick
 Definitely, and that is particularly true for children with
cancer, but it is also true for adults. This definition is
important because then we can really focus on how to improve
quality of life.  So, it is not just being alive, but making
the most of being alive.Miller
 For a long time people said that if you are alive five years after
a cancer diagnosis, then you are a cancer survivor. What happens to
that definition?Kadan-Lottick
 I think that definition has a utility in defining whether a
treatment works.  We need to see if there is a good response
at certain time periods after treatment, but what we are realizing
is that we cannot just define successes of treatment by whether you
are alive or not.  Whether you are cured at five years is
important, but what is also important is what your quality of life
is after five years, what your health status is, are you doing
everything to maximize your health and well-being to make the most
out of being alive?Miller
 How many pediatric cancer survivors are there in the United
States, and how has that changed over time?Kadan-Lottick
 It is difficult to give an exact number. The important thing to
realize is that many people after they have been treated for their
cancer diagnosis are lost to follow up because they do not
recognize, and doctors have not recognized in the past, that they
have unique health needs.  So they are not in a general
database that is easy to count.  We do know that currently 80%
of all children diagnosed with cancer under the age of 21 will be
long-term survivors; they will survive at least five years after
the diagnosis. That is a figure that steadily increases each
year.3:25into
mp3 file 
http://www.yalecancercenter.org/podcast/Answers_Mar-09-08.mp3Miller
 Which is wonderful.Kadan-Lottick
 Which is wonderful, and is really a medical accomplishment of our
last generation. This would not have been true of the children I
went to school with when I was a child. We have made major strides
quickly in childhood cancer treatment, but what that does mean is
that each year we have more and more cancer survivors entering our
population and growing up. That is because they are cured and the
numbers keep adding. The last time it was estimated was from rough
figures of polling different institutions in 1997. It was thought
then to be 10 million, but now here we are in 2008 and I am sure it
is at least 20% to 30% more given the survival rate.Miller
 So a lot of the children that were treated 15-20 years ago are
adults now and they're out living their lives.  What are some
of the things that are different about them, from a medical and a
non-medical standpoint, than their next-door neighbor or anyone
else out there?Kadan-Lottick
 It is very important to cure the cancer first, but often this
comes at a cost because many therapies are toxic. They are needed
in the short term to sustain life, but in the long term they can
cause enduring problems in different organs such as the lung and
the heart, and it can increase a person's risk of having heart
disease, early heart attacks, having kidney problems, having
ovaries and testes that do not function, problems with going
through puberty and having children later in life.  Another
area that can be effected is the thyroid because radiation in the
head and neck area causes the endocrine glands not to function
well, especially the thyroid, but it can affect other endocrine
areas.Miller
 Do the majority of survivors have these problems, or do you think
that your estimation is of the minority?Kadan-Lottick
 The newest estimate we have for that is a study called the
Childhood Cancer Survivor Study, of which I am one of the
investigators.  This is a multisite study around the country
following 12,000 childhood cancer survivors in adolescence and now
into adulthood.  The oldest people in the cohort are in their
50s. From following them every two years we have learned that
two-thirds of survivors have at least one medical problem,
one-third will have none, and one-third will have at least one
severe problem.  On the optimistic side you can say that
two-thirds of survivors will have no problems, or only a mild
problem, but one-third will have a severe problem that requires
regular medication, regular monitoring or even surgery or more
extreme types of care.  In general people are doing well, but
what this does inform us of is that this population continues to
have special health needs, and to maximize well being we need to
make these survivors aware of the their unique health needs so that
they can get specialized screening and specialized anticipatory
guidance to help them. The good news is that many of these
conditions are treatable and amenable to early screening.Miller
 What kind of problem might they present with that you can help
them with and you can have an impact on, what are some
examples?7:28into mp3 file 
http://www.yalecancercenter.org/podcast/Answers_Mar-09-08.mp3Kadan-Lottick
 One example would be a young man who just got married a couple of
years ago and is unable to father children. Actually what is
interesting is that often these individuals do not even realize
that this difficulty can be related to their past cancer diagnosis.
Our technology has improved so much in reproductive endocrinology
that even if the young man's sperm count is very low, using
assistive technologies such as artificial insemination and in vitro
fertilization, it is possible to father a child even with less
sperm. It is important to do so in a timely way because the sperm
count can vary in the periods after treatment and one would not
want to wait too long.  That is one example with
reproduction.  Another very important example where it is good
to catch something early is that children who have had radiation to
the head for leukemia or brain tumors have growth hormone
deficiency. Often that is a clinically silent condition because it
does not cause him to feel bad in any way. What will happen is that
they will grow a bit with puberty, but not at the rate that they
should so their final height will be much reduced. If we are aware
that they had these treatment exposures, we can monitor their
growth hormone production with more specialized testing. If someone
is at risk of lower growth hormone production, we can replace that
growth hormone in time so that their final height is not effected.
But once your growth plates are too close during puberty, it is too
late. Sometimes it is a matter of six months or a year that you
have to catch this before it is too late.Miller
 Do you get a sense that oncologists, pediatric oncologists and
clinicians, are more aware of these long-term issues in
survivorship than they used to be?Kadan-Lottick
 Pediatric oncologists have led the way and I think that is because
we have seen more quickly the strides in survival. We have had the
privilege of enjoying watching our children grow up and that has
led to the observation that as adults and adolescents these
individuals are having certain problems. In that way my colleagues
are becoming more aware, but I do think it is still a challenge and
that is why I am so delighted to be on this radio show and to do my
work at Yale, because it is something that is still not generally
known in the oncology field.  Many oncologists are still
focused only on the time to cure because this has been the struggle
for so many decades, and they do not have the same experience or
awareness of current research in the time after the cure has
happened.  Another challenge is that many of these conditions
are silent, so survivors do not identify themselves as having
unique health needs.  It is not as if they are going to feel
sick like they did with their cancer, and that is important.Miller
 We would like to remind you to email your questions at canceranswers@yale.edu. 
We are going to take a short break for a medical minute. Please
stay tuned to learn more about pediatric cancer survivorship with
Dr. Nina Kadan-Lottick from the Yale Cancer Center.Miller
 Welcome back to Yale Cancer Center Answers.  This is Dr. Ken
Miller.  I am here with Dr. Nina Kadan-Lottick who is Director
of the HEROS Clinic at the Yale Cancer Center.  Nina, I am
going to ask the million-dollar question, how did you get the name
HEROS Clinic, I think it is a great name.Kadan-Lottick
 I have to tell you, we did it backwards.  We loved the name
HEROS because that is how we think of our patients and the family
members, so we made it work. Thinking backwards, HEROS stands for
Health, Education, Research Outcomes, and Survivors. It is a name
that really resonates with our patients and that makes our clinic a
positive experience which is really what we intend for it to
be.Miller
 It is an amazing name and it is great that you are able to make it
fit so well.  What happens when a patient comes to the HEROS
Clinic, what is that experience like?Kadan-Lottick
 It really starts a few weeks before they even come.  We
request all the medical records from the cancer therapy from the
other treating institutions and the nursing staff and I review this
in great detail and create a treatment summary that calculates all
the specific chemotherapies and radiation they got and from that we
have a pre-clinic conference that is attended by a psychologist,
endocrinologist and an internist, as well as our pediatric oncology
staff, in which we present each patient and discuss what specific
issues that patient is at risk for. Then we plan the clinic visit,
what studies we will do, what areas we will focus on in our
discussions with the patient, and then a couple of weeks later we
will have the clinic visit which lasts about an hour. During that
visit the patient will spend time getting education from the nurse,
talking and being examined by the physician, and also being
interviewed by the psychologist for problems with depression and
anxiety. They are also screened for problems in learning function
because we have recognized that many of the therapies can result in
problems in working memory, being able to focus and being able to
organize one's thoughts. These can be subtle effects but can
actually really affect the person's quality of life.Miller
 It sounds like a lot of the work is done before you even see the
patient.Kadan-Lottick
 It has to be because each survivor is different.  Their care
depends on what specific therapies they got and what specific
toxicities they experienced during therapy. The good news is that
there are many patients who actually are not at increased risk for
many of these problems, and they need to hear that. For those
people we focus on general wellness strategies, nutrition, and
exercise.  Other individuals may be at a particular risk for
issues and we try to highlight for each15:14into mp3 file 
http://www.yalecancercenter.org/podcast/Answers_Mar-09-08.mp3individual what they need to do in their lives in terms of
specialized healthcare and healthy habits that will make a
difference for them.Miller
 Let me ask you a bit more about the wellness part of it. Someone
has been treated for cancer and there is a lot of anxiety and worry
about it. You mentioned the word wellness, so in terms of wellness
what are some things you would like to stress for your survivors of
childhood cancer?Kadan-Lottick
 I try to stress the idea that knowledge is power and that knowing
they may be at an increased risk for certain problems does not mean
that they are going to get the problem, but that they should be
prepared to prevent the problem and to screen for the problem. In
that way they have control over their destiny.  I also stress
that all the things that are recommended for all of us go up double
and quadruple for them.  We focus on eating more than five
fruits and vegetables a day and trying to exercise at least 3 hours
a week because there is good data that these interventions reduce
the risk of cancer and also reduce the risk of cardiac disease and
other health problems. In fact, we now have some data back from a
study done in cooperation with Dr. Santacroce, one of the nurse
practitioner faculty in our clinic, looking at how well our clinic
is changing health habits in patients. We have found that there has
been an incredible increase in healthy behaviors because of our
clinic experience comparing what they report at the clinic visit to
what they report at a phone follow-up weeks and months later.Miller
 I am going to make a guess here, are they exercising more?Kadan-Lottick
 They are exercising more; they are smoking less; they are getting
the recommended screenings such as mammograms and in some cases
early colonoscopy.  For some of our patients we recommend very
early mammograms, as early as 25 depending on the exposure, but we
are seeing that these patients are doing it.  We are also
seeing that they are using sunscreen more and avoiding midday sun
exposure which we are delighted about. What this really tells us is
that these individuals can improve their health by having
specialized care that focuses on these issues.Miller
 You are a relatively small group of very dedicated researchers on
childhood survivorship issues. Tell us a little bit about some of
the latest research you are working on.Kadan-Lottick
 My main areas of research are in how survivors do in terms of
neurocognitive function later in life, and how they do in terms of
depression and anxiety.  We know from other studies that
childhood cancer survivors are twice as likely to live with their
parents as adults, less likely to graduate from high school and
more likely to be underemployed relative to their potential. I am
very interested in learning what the contributing factors for this
are.  My hypothesis has been that it is the subtle learning
problems I discussed earlier, because all of those are important
areas of thinking in order to be able to function and live
independently. I was not sure if there was a greater role played by
anxiety or depression, which we also know occurs in cancer
survivors at higher rates than other survivors.19:08into mp3 file 
http://www.yalecancercenter.org/podcast/Answers_Mar-09-08.mp3Some of my more recent research is suggesting that the more
important factor seems to be the ability to have good short-term
memory and to organize one's thoughts.  These are preliminary
studies, but I hope to test this in wider and larger samples
because I would then like to focus on interventions that could
improve neurocognitive functioning.Miller
 If a child had to have chemotherapy or radiation therapy and does
have short-term memory deficit, or a sort of executive functioning,
are there other strategies to deal with that?Kadan-Lottick
 An effective strategy is accommodation; helping the child, young
adult or adult to have other tools to do this task. That includes
learning how to organize one's day, choosing a career path that
involves doing goal-oriented work instead of lots of multitasking
so that one can be successful and use one's potential, using PDAs
and choosing work where you have very organized structured days
because then you can really succeed.  The other part that can
be helpful for some individuals is to take stimulants. A lower dose
stimulant, such that are used traditionally for ADHD, seemed to
also help with these areas of function.  I have found that
many of my survivors, after having had years of taking some new
medicines, are hesitant to take medicines. While it is an effective
strategy, we are finding in many studies that it may not be
practical for many people because of the receptivity. We are also
exploring whether some of the computer tools that are being
investigated in older patients with early Alzheimer's, which
ironically enough we have seen some of the same processing
difficulties in early Alzheimer's, problems with working memory,
organization of thoughts and ability to concentrate, can be used in
our younger patients to improve areas of function.Miller
 For young children are you optimistic that in fact you can help
them overcome some of these issues?Kadan-Lottick
 That is our hope.  We know that the brain actively develops
into a person's thirties, in terms of just developing into the
mature brain. After that, we are learning that even with older
patients, there is plasticity in terms of being able to heal from
trauma and stroke, so one would hope, or hypothesize, that in
younger people that would be even more so. That would be an
exciting strategy because it could be something that could engage
the family in a very positive way in helping their children.Miller
 I am going to ask you about a different topic which has to do with
survivors of childhood cancer moving on. Most of them go on and
live long happy lives, but what about the risk of other cancers, is
it higher, lower or is it the same?23:29into mp3 file 
http://www.yalecancercenter.org/podcast/Answers_Mar-09-08.mp3Kadan-Lottick
 It is higher.  From the Childhood Cancer Survivor Study, the
12,000-member cohort that I discussed with you earlier, we have
learned that survivors in general are about 6 times more likely
than other people of their age and gender to get cancer.  That
is a much increased risk.  It is particularly high for certain
groups, such as those who have gotten radiation, particularly those
with Hodgkin's and sarcomas. But this does invite an area to feel
empowered because if an individual   is aware that they
can monitor their skin and tissue in the radiation field, and if
they notice any lumps or bumps, they would be more likely to go to
a doctor early on when something can be handled very easily rather
than wait till it's progressed.  The other issue we are
learning about is that because of the second cancers, survivors are
about 10 times more likely to have an early death than their peers,
most of which is attributed to second cancers, but also cardiac
disease and pulmonary disease. That is why, again, we think
screening is very important. Earlier intervention for cardiac
disease, maximizing lipids and exercise are very helpful strategies
to decrease that.Miller
 Thirty years ago some of these issues did not exist because
childhood cancer survivors did not make it to be adults. So, on the
one hand it is a blessing, but it is also a challenge.Kadan-Lottick
 Absolutely, but I look at it in a hopeful way.  It is a real
privilege to be able to take care of cancer survivors because no
one would want that diagnosis, or want their child to experience
such a trauma, but in reality I often see, in many of our patients,
that while they would not have chosen this experience, it has made
these individuals realize that it gives their life purpose and that
they are interested in accomplishing even more and using their
experience to help others to go farther in life. Many of them also
feel like they are not going to sweat the small stuff. They know
what matters in life, and they are remarkable individuals making
the most of their survivorship. That is really why I am so
interested in this field.  Anything we can do to improve their
quality of life is going to help us bank on all the hard work we
did in curing these individuals in the first place. It behooves us
as clinicians to remain invested in these patients throughout their
lives and to make sure that they make the most of them.Miller
 Are you saying, in a sense, that for some people there are
positive side effects of having cancer?Kadan-Lottick
 There are, and some investigators have called this posttraumatic
growth. It goes with the idea that, what does not kill you makes
you stronger. I find that many individuals have found more
spirituality in life, more meaning in life and have really engaged
their social support groups and brought communities and families
together. While we would not have chosen this for any child,
looking back we can see how it has made these individuals truly
remarkable.Miller
 How old is the oldest patient in your survivorship program?Kadan-Lottick
 I love saying this.  I have a patient in her 50s who is a
grandma in my clinic who comes down from Hartford.  It really
shows us the whole spectrum of survivorship and what we are aiming
for.Miller
 Hopefully we will have a chance to talk again on the air, and each
year I will probably ask you about her.  She is a hero, and so
are you for that matter.  Nina, I want to thank you for
joining us on Yale Cancer Center Answers.27:16 into mp3 file 
http://www.yalecancercenter.org/podcast/Answers_Mar-09-08.mp3Kadan-Lottick
 Thank you so much for the opportunity to share my work with
you.Miller
 Until next week, this is Dr. Ken Miller from the Yale Cancer
Center wishing you a safe and a healthy week.                             
If you have questions, comments, or would like to subscribe to our
Podcast, go to www.yalecancercenter.org,
where you will also find transcripts of past broadcasts in written
form.  Next week, you will meet oncology nurses Judy Grasso
and Marianne Davies.