The Role of Psycho-oncology

Dr. Jimmie Holland, The Role of
Psycho-oncology July 20, 2008Welcome 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
Dr. Miller is a Medical Oncologist specializing in pain and
palliative care and he also serves as 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 we look at
the growing field of Psychooncology with Dr. Jimmie Holland. 
Dr. Holland is the Wayne E. Chapman Chair of Psychiatric Oncology
at Memorial Sloan-Kettering Cancer Center and begins with the
description of the field.Holland
This area is the part of cancer care that deals with the
psychological; the emotional reaction to this illness at all stages
of disease for the patient, family, and the staff who have their
own burden in taking care of this.  The flip side to it is the
psychological, social, and behavioral issues that have an impact on
cancer incidence and survival, for example, smoking. We would like
to look at both sides of it; what cancer does to people and what
people may do to influence getting cancer or surviving.Miller
Along those lines, there was the feeling 10 to 20 years ago that
stress caused cancer. If someone said, "My family is a pain in the
neck," then that person would end up with head and neck cancer. Can
you talk a little bit about that?Holland
That was a very unfortunate part of our cultural adaptation to
cancer and our reactions to cancer. There is always a tendency,
when you do not know the cause of a disease, to blame somebody for
getting it.  Tuberculosis, for example, we used to think had a
psychological cause until we found the bacteria.  Cancer has
been much the same way, and it was such a shameful disease to have
so people kept it as a secret and did not talk about it. It was the
feeling that they must have done something awful to bring this on
themselves, and that added to the burden of not only having the
disease, but having to keep it a secret. Society supported that
idea that they had done something awful to get it, so they blamed
the victim very often.Miller
From your perspective, have we moved beyond that?Holland
We have moved a long way beyond it, in part because we know the
causes of cancer and we know cures for several cancers. As the
knowledge about the disease improves, the mystique of it
disappears.  We have a microcosm of this with AIDS.  If
you remember, starting in the early 80s, we were all frightened to
death.  We had no idea how you caught it or how to treat it.
Now AIDS is very much confined to certain kinds of behaviors and
people do not worry about getting it anymore.3:12into mp3 file 
http://www.yalecancercenter.org/podcast/Answers_July-20-08.mp3Miller
 Looking at the flip side of that, the things that people can do to
manage stress, participating in support groups, positive thinking,
and positive imagery and guided imagery, what role do they have in
the process of getting better?Holland
Let me speak first on positive thinking.  I have called this
the tyranny of positive thinking because there is this sense in
society that if you do not think positively, you are letting your
tumor grow faster.  Who can be positive when they are
nauseated and vomiting and going through arduous treatments? 
Of course you are going to feel depressed and sad and nervous. We
would like to get away from the idea that positive thinking is good
for all people, for those who are more cynical, quiet and reserved,
putting that on them that they have to be positive is another
burden.  In terms of guided imagery, all kinds of relaxation
and meditation are helpful techniques to some people. There is no
one size fits all for coping with cancer.  Some people like
counseling, they like to talk about it either with a counselor or
with other people who have the same disease, but not everybody
does. We get into trouble when we say this is the one way to cope
with cancer, so I try to say to families to respect how the person
in the family is coping with it.  That is the best for
them.  We cannot change people in the middle of the road when
they have a disease, you look for the strengths the person has and
you enhance those strengths. You do not say that they are coping in
a wrong way.Miller
As you are talking I am thinking that people have their own path
and their own trajectory in terms of the illness so what may work
for one person may not be helpful for someone else.Holland
Very true.  The challenge is changed over time.  The
diagnosis is one set of problems, what is the best treatment, who
is the best doctor, how do I get started with treatment? As time
goes on it becomes, how do you cope with the side effects of
treatment, and then, how do you cope with having it be all over?
Interestingly enough, when the treatments are over people
get a kind of paradoxical new level distress.  They are
not being treated any longer and they think, what if it comes
back?  These kinds of things are adaptation to survival that
we are beginning to know much more about and realize there is a
baggage that goes along with being cured of cancer.Miller
Let me ask you a little bit more about that because you are
actually here this week at Yale as our keynote speaker for a
survivorship conference. That baggage that people carry after
cancer, can you give us some examples that tell more about
it?Holland
The first thing is, anyone who has ever had cancer has a nagging
fear that6:20into mp3 file 
http://www.yalecancercenter.org/podcast/Answers_July-20-08.mp3it could come back. It gets less over the years, but it is
always there.  This disease is one that you can never be quite
sure about, so the fear of recurrence is always there.  Some
people will have posttraumatic symptoms from the treatments,
particularly something very arduous like a bone marrow transplant
where they may have been isolated for a month or six weeks in the
hospital with multiple infections and difficult treatment. They may
think back on that and have nightmares, become anxious or be
startled by loud noises. These are typical symptoms that were first
seen with Vietnam Veterans, and that was when the term
posttraumatic stress was coined. Some of those symptoms can surface
years later.  It is not so prominent now, but some patients,
if they get a reminder of the chemotherapy that they had, like a
smell of alcohol or even looking at a room that looks like the
treatment room,  they can feel anxiety and a sense of nausea.
We see it less because the drugs we have to control nausea and
vomiting are so powerful and effective today. Miller
Let me ask you more about posttraumatic stress.  Does that get
labelled with other terms of someone with cancer, six months later,
12 months later, who is having a lot of these reactions?  Does
that get misdiagnosed?Holland
It probably is not called posttraumatic stress.  The patient
themselves are saying, "I do not know why I am more worried now and
more nervous now that the treatment is all over.  I should be
opening the Champagne bottle and I do not feel like that, I feel
like I am more worried than ever." That comes across as reactive
anxiety, maybe due to some depressive symptoms, but I think there
is an aspect of that that is clearly posttraumatic.Miller
On the flip side of depression, are people diagnosed with an
anxiety or mood disorder when in essence it is a reaction to
distress?Holland
Absolutely it can be.Miller
I know that you refer to stress as the sixth vital sign, what does
that mean?Holland
One of the things that happened is that pain management has
improved enormously in this country, and it improved essentially
because the doctors began to ask their patients how their pain was
on a scale of 0 to 10. Patients began to get the idea although they
did not like it to start. They can tell you, my pain is an 8 right
now, it was only 2 yesterday and there is an algorithm if it is
over 5, you have to look at pain management medications.  So
that became the fifth vital sign, doctors have to look at9:40into mp3 file 
http://www.yalecancercenter.org/podcast/Answers_July-20-08.mp3blood pressure, temperature and respirations, but in addition,
they must ask about pain at every visit and pay attention to
it.  We feel that the most neglected area of care is what we
have called distress, this whole psychological side. Because it is
so neglected it is often not asked about in patients visits. What
we have proposed is for patients to just use the word
distress.  How is your distress level today, 0 to 10? 
What we found is if the patient says more than 5, that is a sign to
ask more questions. Is it something at home, whatever it is, we
need to know. The oncology nurse or the oncologist should ask those
questions, or the social worker. We have proposed that a sixth
vital sign should be distress, after pain, how is you distress
level, 0 to 10?  This has been initiated in Canada and they
have, across their cancer care guidelines, the sixth vital sign as
distress.  The US could learn something from Canada.Miller
From what you have heard about and seen in the Canadian system,
when the patients are asked, what numbers are they giving, 7, 8, 9,
and 10, or is it different across the board?Holland
It is highly variable.  The numbers that are very high,
that is a red flag because this is someone who needs to be
further explored quickly.  We tried to use a very short
question just to find out if a person is distressed, and obviously
they want to know why, and that is a second level, but this first
level is very helpful and many people say, "I am a 1 or 2, or it's
not worth talking about." But you may find somebody who says, "Yes,
I am scoring high, but I know why today and I will be fine
tomorrow."  You have to go beyond the number, but the reason
why it is helpful is that patients do not want to sound like they
are wimps, they do not want the doctor to think they are not coping
well. They are embarrassed to say that they are not sleeping well
or that they are not having sex. And the doctors are busy and they
are not knocking themselves out to ask more questions because they
have 25 people sitting out in the clinic.  The opportunity to
talk about this is so limited, and the word psychological is so
frightening to people, that we hit upon the word distress.
Obviously you have stress if you have cancer, it is normal to be
stressed, but you can be a lot distressed, and that is what we need
to know.Miller
Are you depressed, are you anxious, would those be terms that would
have stigma?Holland
I think they do.  Unfortunately, they should not, but they do.
Distress is a very neutral word and so that is how we came to use
it as a vital sign rather than nervous or anxious.12:56into mp3 file 
http://www.yalecancercenter.org/podcast/Answers_July-20-08.mp3Miller
 Pain is certainly well understood and something people can
certainly rate, but if the patient asks what it means, how would
you define it for them?Holland
I do not care what the feeling is, just give me what it feels like,
0 to 10.  If yesterday you were calm and okay, how are you
today? And they can give you a number and this has been
validated.  It is being used in a lot of countries around the
world. Anything that is above a 5 should be followed up on. 
The patients are pretty good.  They are more reliable than we
used to think.Miller
We would like to remind you that you can e-mail questions to us,
myself and Dr. Jimmie Holland, at canceranswers@yale.edu. 
We are going to take a short break for medical minute. Please stay
tuned to learn more information about the emotional side of cancer
with Dr. Jimmie Holland from the Memorial Sloan-Kettering Cancer
Center.Miller
Welcome back to Yale Cancer Center Answers.  This is Dr. Ken
Miller and I am here with Dr. Jimmie Holland who is a Professor of
Psychiatry and Director of the Psychiatric Oncology at the Memorial
Sloan-Kettering Cancer Hospital.  Jimmie lets talk about the
mind and body connection.  It is a very popular thing to think
and talk about, but what does that mean?Holland
We live in a "can-do" culture, so we would like to think that our
mind can control what is going on in our body.  It is a very
appealing idea and there is certainly that appeal about cancer. We
went through an era in which there was the idea that if you could
visualize your immune cells killing off the cancer cells you were
enhancing your immune function.  I think that is more fantasy
than reality.  Clearly, the mind and the body are all in one
mechanism and they interact all the time, however, I do not think
that there are psychological mechanisms that are going to alter
cancer growth.  Now, it is quite possible that psychological
activities alter behavior like16:03into mp3 file 
http://www.yalecancercenter.org/podcast/Answers_July-20-08.mp3smoking, and that in itself alters cancer risk.  It is also
true that our psyches have to do with whether we adhere to the
treatment the oncologist recommends. If you are there everyday to
get your radiotherapy, you are certainly going to have a better
outcome than the person who says it is not for them. So, yes, the
psyche affects the cancer treatment but by way of behavior not by
any kind of mystique or mysterious mechanism within the body that
we can identify.Miller
It is helpful hearing it from you as an expert in this field. 
You have written a wonderful book called The Human Side of
Cancer, Living with Hope, and Coping with Uncertainty.
 How do people cope with uncertainty in this setting?Holland
That is the cornerstone of the illness for most people with cancer
who get the diagnosis, and it is very hard for the doctor to say,
you are 100% cured, or you are 100% not cured and you are not going
to make it. People live in a limbo between being hopeful and that
uncertainty that they may not have gotten it all. Finding a way to
deal with that uncertainty and putting it into a context that lets
you go on with your everyday life is really the essence of the
coping.  I had a wonderful young man who had a graphic way of
telling me about it.  He said, "I have these three little
gremlins in my head.  One of whom says, 'You are not going to
make it buddy you are sick', and the other one on the other side
says 'Come on miracles happen, you are going to be fine.' And I
have this third little gremlin in the middle who has to keep the
other two quiet so I can put one foot in front of the other and
manage my daily life." Graphically that is what I think happens as
people cope with uncertainty.Miller
It is wonderful. Related to that, one word that I think we never
use in the clinic is the word cure.  It is almost like a dirty
word.  Have you noticed that?Holland
I think that has changed, people used to talk about cure. 
Surgeons would say, "Okay your breast is cured, good bye." And
there was a kind of certainty about that which was very
appealing.  Today, a woman gets all these statistics, well you
are 85% safe, but there is that 15% so we are going to see you
every 4 months forever.  You do not walk away with the
certainty that you used to in the older days. That certainty was
not quite so certain, but it gave you a sense of being alright for
now.  Given today's very careful follow-up with people, it
keeps the cancer in the forefront of their mind. I see people who
tell me they get psychotic the week before all their scans, once
every 4 months, and I call it their pre-scan psychosis. After the
scans are over and they are negative, they are fine until the
next19:35into mp3 file 
http://www.yalecancercenter.org/podcast/Answers_July-20-08.mp3scan. Yes we need to be following people, but I am not sure
sometimes if they are too excessive with the scans.Miller
That makes me wonder as well.  One of the biggest concerns of
patients when diagnosed with cancer is their children and their
loved ones in general.  What is your advice in terms of how
people can share this information with their child?Holland
It is a very important question. Sometimes little ones are sort of
neglected when one of the parents becomes ill.  Our experience
is that children do well as long as they feel they are on the team
and they are being told what is happening. They do most poorly when
it is a secretive thing, like something is happening and the child
feels excluded. Children will imagine the very worst rather than
the best, so parents are not really protecting the child when they
keep the information at a distance. The child will do much better
if he or she feels like they are trusted enough to be told what is
going on.  "I am going to the hospital, I am going to have
this little operation, I am going to lose my hair and yeah, it is
not going to be fun, but we will get through it." Then the children
feel they are part of what is going on and they handle it.Miller
In terms of spouses and significant others, what have you seen in
terms of how people can partner well together?Holland
We say cancer is a family disease.  It affects not just the
person who has it, but everyone around them. A couple who has a
good marriage will probably get closer.  If it is a troubled
marriage at the time the cancer occurs, it can be very difficult
with a lot of conflict. But they need one another and it is a very
difficult time when marital situations are not very good. We have a
counseling center and we offer family counseling and we offer
counseling to children. It is not a sign of weakness to ask for
help.  There is still this kind of stigma that asking for
counseling or some kind of psychological help means they cannot
cope with it. This is not true at all.  We can help people
sort these things out and help them deal with the issues in
constructive ways rather than destructive ways.Miller
There is the term posttraumatic stress, and there is also
discussion of posttraumatic growth, what does that mean?Holland
That is a good point to bring up.  I have certainly talked to
people who have said, "As bad as cancer was I am glad it happened
to me because it changed my life. I stop to smell roses, I
appreciate the little things, and it really was a life-changing
event for me."  People realize all kinds of things22:54into mp3 file 
http://www.yalecancercenter.org/podcast/Answers_July-20-08.mp3
 they are now going to do with their lives.  I have had other
people who say that is a lot of garbage and they do not think it
changed their life at all, except in a bad way. People perceive it
very differently, but I do think that many people who survive a
crisis, a car accident that brings them to near death, or any kind
of near death experience that is very frightening, start thinking
about who they are and what the meaning of life is. It is not just
with cancer that this happens, but there is a sense of growing from
crises.  We use adversity often times as a means of personal
growth.Miller
Recently, The Institute of Medicine, which is very well respected
organization in Washington, showed a very important report on the
emotional side and psychological side of cancer.  Can you tell
us what their findings were? Holland
I am delighted to tell you about that.  The Institute of
Medicine carried out a 2-year study of what the barriers are for
patients getting good psychological/psychosocial care in the course
of their cancer treatment. What they found is that people in the US
have the best cancer treatment in the whole world, but the
psychological side of it is very poor.  It is very lagging
beside the technical side of care. The Institute of Medicine report
says that there is strong evidence that the psychosocial side is
important in care, and it has been proven to be important by their
interventions. Bottom line, psychosocial needs must be integrated
in routine cancer care if it is to meet quality standards
today.  That is a whole new world because we never had that
level of acknowledgement and support before.  While it's a top
down kind of change, at least there is a standard out there. It has
an impact that can be followed up and implemented by
recommendations from oncologist's offices. They must include in
their workup of a new patient, how much stress they have, if they
are having trouble coping with this illness. There are a lot of
free resources in this country that are not used adequately, for
example, the wellness communities. There are 20 of them around the
country that offer totally free counseling and help of all
kinds.  There is Gilda's Clubs, there is the National
Coalition of Cancer Survivorship, and the American Cancer Society,
and all of these have free counseling by telephone. We have our
American Psychosocial Oncology Society that has a help line, which
is APOS-FOR-HELP. We will help you find a counselor in your own
community.Miller
So you are saying that whether it be in a community practice or an
academic setting, people are entitled to that help and it sounds
like it is often available?Holland
It is available and people need to know that this is their right
and this is26:46 into mp3 file 
http://www.yalecancercenter.org/podcast/Answers_July-20-08.mp3
 part of their care that has to be there to help them get through
the illness in the best possible way.Miller
You have been doing this for over 30 years, do you find yourself
more optimistic or less optimistic by getting those services out
there to people?Holland
I am very optimistic.  Things change slowly.  We have
seen the stigma of cancer diminish over the years so that people
are now not so frightened of it. They are still frightened, but
they understand it better.  I think the psychological side is
still a little stigmatized.  People do not want to admit that
they might need a counselor.  That too is improving, and I am
an optimist and I figure if we just hang in long enough, we will
finally get there.Miller
It is terrific.  I want to remind our listening audience that
survivorship programs, like the ones we have at Yale, are available
at other cancer centers as well. Counseling services are available,
and as Dr. Jimmie Holland was saying, that is your right. 
Jimmie, I want to thank you for joining us on Yale Cancer Center
Answers.  Until next week, this is Dr. Ken Miller from the
Yale Cancer Center wishing you a safe and 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, we will discuss the process of helping
spouses of cancer patients with Dr. Maria Loscalzo.  I am
Bruce Barber and you are listening to the WNPR Health Forum from
Connecticut Public Radio.