American Brain Tumor Association Webinar
Coping with Anxiety, Depression and a Brain Tumor
>> Hi, everyone. Welcome to the American Brain Tumor Association's webinar series. Thank you for
participating in today's free educational webinar. Today's webinar is on Coping with Depression, Anxiety
and a Brain Tumor. It will be presented by Mary K. Hughes, CNS, RN. Please note that all lines during the
webinar today are muted. If you have a question you would like to ask, type and submit it using the
question box in the control panel on the right-hand side of your screen. Ms. Hughes will answer
questions at the end of her presentation. Tomorrow, you will receive an email asking you to evaluate
this webinar. It is a very brief survey. Please take a few minutes to share your comments. Your feedback
is important to us as we plan for future webinars. Today's webinar is being recorded. The recording will
post today on the ABTA website shortly. Participants will receive the webinar link in a follow-up email
message once the webinar is available. Let's pause for a moment so that we can begin the webinar
recording here.
>> The American Brain Tumor Association is pleased to welcome you back to our webinar series. Our
webinar today will discuss coping with depression, anxiety and a brain tumor. My name is Andrea
Garces, program manager here at the American Brain Tumor Association. I am delighted to introduce
you to our speaker today, Mary K. Hughes, CNS, RN. Mary K. Hughes earned her bachelor's and master's
degrees from Texas Woman's University and is certified in Thanatology. She is on clinical faculty at Texas
Women’s University Houston Center and has been a clinical nurse specialist in the psychiatry
department at the University of Texas, MD Anderson Cancer Center since 1990. She lectures
internationally and nationally about quality of life issues of cancer patients and has published on these
subjects. Thank you for joining us, Ms. Hughes. You may now begin your presentation.
>> Thank you so much. I was very honored when I was invited to present this webinar. I have presented
this information several times at the Brain Tumor Association Conference for patients and now, I am so
glad that I can present to even more people. So this is a big topic: Depression, Anxiety and a Brain
Tumor. So, why do we even want to talk about this? If somebody has depression or anxiety, it may
increase their time in the hospital and, of course, that will increase the cost. It may cause treatment
delays. If someone is very depressed or anxious, they may not be adherent to the treatment plan. And
of course, the caretakers are more stressed when their loved one is dealing with depression or anxiety.
Some studies show that it may even affect the course of the disease. Of course, there will be poor
quality of life for anyone who is depressed or anxious. It does affect their quality of life. So when we
intervene and we treat the depression or anxiety, it reduces it, hopefully, it helps the person improve
the coping mechanism and then more people want to be around them to help them and also, then, they
can ask for more help.
>> So what is depression? Everybody experiences depression. It is a common, everyday experience in
life. Or it can be a psychological reaction to stress or loss in life. That’s grief. I think that everybody I see,
and everybody I see that has cancer, is grieving. The first thing you grieve for is your health. And then
depending on how the disease or the treatment affects you, you grieve your losses as a result of that.
Also, depression is a neuropsychiatric disorder with characteristic psychological and physical symptoms.
Almost every day for three weeks, this is not just for one day you wake up and you feel terrible and it is
a bad day. This is something that continues for at least two weeks. You feel depressed. You feel sad. You
feel empty. Maybe you do not want to sleep. You cannot sleep. Or all you want to do is sleep. Often for
people with depression, they wake up around 3 AM. They are not having pain. They do not have to go to
the bathroom. They just wake up. This is a classic symptom of depression. There is hopelessness. When I
ask people, what do you look forward to? What are you hoping for? People that are depressed, do not
have any hope. They feel hopeless about things. They may think about suicide. They might feel that their
family would be better off if they were dead. That is not the same thing as suicide as thinking about
actively doing something to end your life. Because often people think that they are what they do, if they
cannot work, if they cannot do the chores that they are used to doing, they may feel worthless. They
may feel guilt because they brought cancer into the family. And they do not enjoy things. Maybe they
used to enjoy reading or they used to enjoy gardening and now they do not enjoy anything. Often,
people tell me that they just go through the motions of life.
>> Depression is not just being slow; it also can be agitated. There is an agitated depression where it is
hard to sit still and you move around a lot. Fatigue may also go with depression, loss of energy.
Disinterest in sexual activity. Often, this may take a person to the doctor because they do not know why
they are not interested in sex and when they go to the doctor, the doctor does the workup and finds out
they have depression, and that is why they are not interested in sexual activity. Because they are not
interested in any activity. There may be a change in appetite. Often men quit eating. Women will maybe
eat more because that comforts them -- they eat more comfort food. Maybe it is hard to think or
concentrate. And it is hard to make a decision. And of all times, when you're dealing with cancer, that is
the time when you need to be able to make a decision. Now, some of these may sound like side effects
of your treatment. Often, people feel fatigued. They are not hungry. They are not sleeping well, which
can be side effects of the treatment. But they also can be depression if a person is feeling hopeless and
not interested in anything.
>> So how do you treat depression? Antidepressants work very well. But antidepressants take about
three weeks to start working. There is no one certain antidepressant for everybody. It is a matter of trial
and error. There may be an antidepressant that works very well for you, but for somebody else, that
antidepressant does not work very well. Often, the antidepressants start at a low dose because then
there are less side effects and sometimes, all it takes is a very low dose of antidepressant to work. Then
if it does not work, then the doctor will keep increasing it until they get to the maximum dose before
they decide to try a different antidepressant. Sometimes, if there are side effects that a person can’t
tolerate, the antidepressant will also be changed. Prescription stimulants like Provigil or Newvigil or
Ridalin can also help with depression. Steroids, they can also help. Non-prescriptive therapies, they can
also help with depression. Sometimes people find it helpful if they can distract to focus on something
else, to focus on helping other people. Sometimes, that can help with depression.
>> Now, what about fears? You remember when you were first diagnosed with a brain tumor. One of
the very first things you probably thought is, “I am going to die.” That is a huge fear that you are going to
die. Or when you are feeling bad, you fear that you will never get better. Or, and I know with brain
tumors, sometimes you are on treatment for a very, very long time, you feel like the treatment is never
going to end. Or if you are having side effects from the disease or the treatment, you are afraid that you
are always going to feel sick. And sometimes people tell me that they are afraid that they are going to be
abandoned. Unfortunately, men abandon women with cancer more than women abandon men. So they
are afraid if they cannot do what they used to do, that their family is going to leave them, and they are
not going to come and help them.
>> Also, a big fear that most people have, men and women, is that they are going to be a burden. A
physical burden and a financial burden. They are especially afraid about what happens if they run out of
money? How can they get treatment? Some people are able to continue working with cancer. So they
have a fear, what’s going to happen when I cannot work anymore, because then I will lose my
insurance? Also there is fear about how their appearance is going to change. As you know, with certain
medications, especially steroids, your appearance changes. After you have had surgery, depending on
what was done, you may notice that you lose your hair with treatment or with radiation. So people are
afraid that their appearance is going to change and it will never get any better.
>> So what is fear? We are always talking about fear. What is fear? It is an instinctive emotion. It is to be
afraid of some expected evil. To suspect. Or to doubt. Also, it can be an unpleasant agitation. Or a
perception of danger. Most people do not like to be walking in the dark at night in the city because they
fear that there is danger. And also when people are afraid, they want to hide or escape. Lerner said,
“Fear is an uninvited guest.” No one chooses to be afraid. It just is a feeling.
>> So think about what your biggest fear is. Maybe your fear has changed since you've been diagnosed
with a brain tumor. Some people tell me that their biggest fear is the treatment will stop working.
Others say that their biggest fear is that the cancer will come back. For some people, their biggest fear is
they will not live to see a child graduate or somebody's wedding or somebody's retirement. So
everybody has different fears. Think about what yours is. Sometimes people tell you, do not think about
your fears. But sometimes, by thinking about what your fear is, then you realize, that is very unlikely to
happen. That can help you deal with that fear.
>> Henry Ford said, “One of the greatest discoveries a man makes, one of his great surprises, is to find
he can do what he was afraid he could not do.” I am sure if you all look back to before you were
diagnosed with a brain tumor, you never imagined that you would be able to go through what you have
gone through. Some of you are just starting your treatment. Some of you are ending your treatment.
Some of you are survivors and it has been a while since you have been in treatment but when you look
back, you think, how did I ever do that? You found out that you can do more than you thought and that
you were much more resilient than you thought you were.
>> So what does fear do? It protects you permanently. Because you know the fire can burn, you would
not put your hand in a fire. You would not go try to walk through a fire. That protects you permanently
because you are afraid of fire. Also fear can protect you until you can deal with the reality of the
situation. For instance, when you were diagnosed and they told you, you had a brain tumor, that fear -all you could think about was, I have a brain tumor. And it was so overwhelming, it might have been very
difficult for you to deal with the reality of the situation. So, sometimes the doctor will tell you all of the
different treatments that they can give you. You might not have heard what the doctor was saying
because you were still trying to deal with the fact that you had a brain tumor. So that is what fear did. It
protected you until you were emotionally ready to deal with that situation.
>> Also fear can paralyze you. Now, this is difficult because if you are paralyzed with fear, you are not
able to get out of harm's way. Hopefully, you have never been that fearful, where you could not move.
You see it in movies and on the television - somebody is so afraid and everyone is saying, “Run!” and the
person cannot run or move because they are paralyzed with fear. Also what fear does, it heightens the
imagination. You are thinking about, what if? What if this happens? What if this does not work? What if
this happens? That’s because of the fear, your imagination is heightened. What does it look like? How
do you know when somebody is afraid? For some people, they get very anxious. They may get irritable,
and they may get angry. Other people, when they are afraid, they feel very sad. They may feel
depressed.
>> Fear takes a lot of energy. So it is going to make you feel tired, fatigued. Some people get physically ill
from fear. I saw a couple the other day and he [the partner] is going to go through a big surgery but
during the session, when I was saying that, she [the other partner] started vomiting because she was so
fearful. She was not sick. She says that is what she does when she gets fearful, she starts vomiting. Some
people, when they get fearful, they distance, they pull away from people because they want to be alone.
Then, there are other people who are clingy. They do not want to be alone. They always want to be with
somebody because they are afraid. Crying can also be because of fear.
>> Your body can change with fear. Because of fear, you might not be able to sleep. You are lying there
worrying about things. You may notice your heart is beating really fast. You may notice that you have
muscle tension in your shoulders. Some people get headaches because they have a lot of muscle tension
and it causes them to have headaches from fear. Other people have shoulder pain. There are some
people, like the lady I was describing, that have G.I. syndrome. She was throwing up. Other people may
have diarrhea when they get afraid. H.P. Lovecraft said, “The oldest and strongest emotion of mankind is
fear. And the oldest and strongest kind of fear, is fear of the unknown.” When you think about it, you
are not afraid of what you know. You are afraid of what you do not know. Because you have no idea
what it is going to be, how it is going to affect you, and when you start thinking about, what if? What if
this happens? What if that happens? Those things have not happened. That is not the present, is it? It is
the unknown future.
>> When do people become more fearful? When you have a suspicious symptom. Before you had a
brain tumor, if you had a headache, it was not a big deal. After your brain tumor, when you get a
headache, often you are afraid, oh no, does that mean that the brain tumor is growing?
>> Before you had a brain tumor, you occasionally may have stumbled and it was no big deal. But
afterwards, if you stumble, you are thinking, oh no, maybe that is bad. When you are waiting for a
workup, you have had an MRI and it is time for your MRI – that’s hard. Because after your brain tumor is
treated, you know you continually have periodic MRIs and so even though you might not have any
symptoms, it’s time for that MRI and you start getting fearful again. Any time that you are waiting for
the results of a test, that is very difficult. And often, I'm sure that you have noticed that your test is on
Friday, and you will not get the results until Monday, and that is the longest weekend you have probably
ever had to go through.
>> Anytime there is a change in your treatment modality, maybe you had surgery, and now it is time to
have radiation, so anytime there is a change from one type of treatment to another treatment, that can
be fearful. When you go from radiation to chemotherapy, even if it is oral chemotherapy, it is something
new and different, so that is going to make you more fearful. Also, and I'm sure that you can all
appreciate this, at the end of treatment, people become more fearful. Often that’s when suddenly
people come to see me in psychiatry. Their treatment is over and they are so surprised because they are
so fearful. They were able to go through all of the different treatments that they had to and now that it
is over, now what? So their fears have gone up and they sometimes need help with that.
>> Also, the anniversary of a diagnosis. You may not remember many anniversaries in your life. You
might not be able to tell me when your oldest child’s birthday is, or when your wedding anniversary is.
But every one of you can tell me the day you were diagnosed with a brain tumor. And even though you
might not be consciously aware of it, when that time comes around, you may notice that you are a little
bit more fearful and then you realize, oh yeah, 10 years ago today is when I was diagnosed. When you
hear about someone else getting diagnosed with cancer, or somebody that you know maybe you went
through treatment together, they have more cancer. Or, especially when you hear about people who
died from cancer. Different types of cancer. Maybe they are newsmen or stars that died from cancer
and you say, oh no – that reminds you that you can die from cancer. Even though they might not have
the kind of cancer you had, it just reminds you that people do die from cancer.
>> Marylyn Ferguson said ultimately, we know deeply that the other side of every fear is freedom. So
when you are fearful about your work up and you get an MRI and everything is stable, then you feel
free, don't you? Yay, I am free. I'm cancer free right now. Everything is stable. Now, people who have
depression or anxiety do not choose to have those conditions. It is not a choice. But these are both
treatable conditions. But they cannot be treated overnight. It takes time to treat them. And patience
and understanding. Often when someone has depression, the family says, “All you need to do is get up
and do something.” Well, I'm sure you are thinking, if I could get up, I would get up. Nobody likes feeling
that way. One of the important things to do is ask for help. All the way from 10% of people with cancer
to 99%, depending on what study was done and where the cancer site was, people have depression or
anxiety or depression and anxiety. They can come together.
>> So what is anxiety? It’s excessive, uncontrollable worry. You may find yourself worrying occasionally
about certain things like, it’s time for my MRI, so I am a little worried about that. But if you worry every
day, if the worry interferes with your life, that is excessive. Every day for almost 6 months you worry
about things. Physically it may affect you. Psychologically it may affect you. Sometimes I asked the
person, is there a day that goes by that you do not think about cancer? And for people that are anxious,
no. I think about it every day, all the time.
>> But it must affect a lot of your activities or other domains of your life. At least three of these
symptoms, chronic apprehension, you’re always afraid that something is going to happen. You are afraid
for your children. You are afraid for your siblings, afraid for your friends. You worry about everything.
Some people tell me that they came from a family of worriers. And unfortunately, it can be learned
behavior. You cannot relax. Every time you relax, you may startle – you think of things that you need to
do. Things that have not been done. Some people experience chest pain, shortness of breath. There are
people that have got to the hospital, thinking that they have had a heart attack when what they are
having is an anxiety attack. An anxiety attack does make you feel like that. Your heart races, it may be
hard for you to breathe and you think that something horrible is going to happen. You go to the hospital,
they do an EKG, they do a workup and find that you are not having a heart attack, so it must be an
anxiety attack.
>> Sometimes this can wake you up in the middle of the night. Not because you are thinking about
something, but it’s just your body's way of reacting to stress. Some people obsess -- obsessing is when
you keep thinking about the same thing over and over and over and ruminating. You keep thinking
about the same thing. Maybe somebody said something to you, and you did not say what you want to
do and you think, I should have said this and you keep going over and over the scenario again and again.
It may be difficult to concentrate. One of the ways that you can test your concentration -- are you able
to watch a 30 minute television show? Can you watch one hour television show? And stay -- keep the
characters in the show -- you know what is going on? Can you watch a movie? People that have difficulty
concentrating have a great deal of difficulty watching movies because they lose interest. People that
used to like to read books and books and books -- if they have difficulty concentrating, they cannot read
books anymore because there is too much information that they have to stay focused on. They may be
able to read a magazine, as you know magazines are a lot of pictures and short articles, but they are not
able to concentrate on reading a book. It may be difficult to sleep because the worrying is keeping you
awake. Or when you wake up, you start worrying. Crying may be part of anxiety. But not always.
>> And rituals. When you think about your closet, maybe men have their shirts and pants together and
women have all of their dresses together. Somebody told me they have their clothes organized by the
colors of the rainbow. Other people fold their towels a certain way and want them a certain way on the
shelf. Other people have their spices alphabetized and their pantry -- all of the corn is together and the
peas. And then there are people who sweep and clean the floor every day. There is a lady I saw that
washed her sheets every other day. Some people are “checkers” - they go and make sure to check that
they have turned the stove off or check that they made sure to turn the hairdryer off and that they put
the garage door down.
>> These are rituals that people have learned to do and those rituals help them control their anxiety. By
controlling their environment, they control their anxiety. That is not obsessive-compulsive behavior,
unless it interferes with your life. But it has obsessive compulsive tendencies to it.
>> What happens when a person is being treated for cancer, is that often the fatigue interferes with
their ability to do those rituals. Or somebody comes in and hangs their clothing in the wrong place, does
not fold the towels the right way, and that might make them feel more anxious. So all their life, they
have probably been dealing with anxiety but they found ways to control it. By making lists, by doing
these different things. That helped them control their anxiety, and when they cannot do these rituals
anymore, it increases their anxiety.
>> How do you treat anxiety? It depends on the cause. Often, if you cannot breathe well and you're not
getting enough oxygen, you are going to feel real anxious and agitated. If you have an infection, you are
going to have high fever and that’s gonna make you agitated. If you have pain, of course, nobody can
relax when they are having pain. There are certain drugs that can have side effects that look like
agitation. Drugs people take for nausea like Phenergan, Compazine and Reglan. Those drugs work very
well for that, but some people get agitated with the drugs and they need to get different drugs. Pain
medicine -- if someone is having pain, that can help and when the pain’s taken care of, that takes care of
the anxiety. Right? Because you are not hurting anymore.
>> Antianxiety drugs can work very well. Most of these drugs are short-acting like Ativan or Lorazepam
and they work for about four hours and takes the anxiety way, and then help you to focus on other
things. Antidepressants are often for depression, as well as anxiety. Once again, they do not work for
about three weeks. Anti-seizure drugs can be helpful. Also, antipsychotic drugs in very tiny dosages can
help with anxiety and the nice thing about those drugs, is you do not build up a tolerance and they are
not addictive at all. So sometimes people take Seroquel, Zyprexa in small doses that help them sleep and
with their anxiety. Of course, if somebody is having shortness of breath, oxygen can help and once they
get enough oxygen, they’re not going to feel anxious anymore. Antihistamines -- if somebody is allergic
to medication – will help. I talked about antipsychotics, supportive psychotherapy can be very helpful.
Sometimes people are so anxious, they need medication so that they can participate in therapy.
>> Cognitive behavioral techniques can help. For instance, people that are anxious have a great deal of
difficulty being in the present. They are very focused on, “What if?” What if the treatment does not
work? What if the cancer comes back? So rather than focusing on the unknown, you focus on the
present. So right now, if you are in treatment, the only thing that you know is right now, I know my
cancer is being treated. That is all that you know. That is all that your doctor knows. If you are through
with treatment, and your disease is stable, right now you know, my disease is stable. If you know that
you do not have cancer anymore, then you know that, “I don't have cancer.” That is what you know
right now. By going to the unknown, “What about if my cancer comes back?” Then you are living like
you have cancer today.
>> Rather than live that way, when you have a free time, when you do not have active disease, focus on
what you have right now. I don't have cancer. I don't have active disease. Or, I am taking therapy now, it
is treating my cancer. “Yeah, but what if it does not work?” No. That is not what you know, is it? Focus
on what you know. Right now you know why cancer is being treated.
>> Occupational therapy can also help. Especially if you have some deficits in being able to bathe
yourself or drive or doing activities, daily living. Occupational therapy can help. Then that can take away
the anxiety because you can take care of yourself. Recreational therapy can also help because it
provides distraction. Often people like helping other people. If they can volunteer for short periods of
time, that helps them because they help other people.
>> What is coping? We talk about coping, right? Coping depends on what type of cancer you have, what
stage your cancer is, what treatments you are getting. Sometimes the type of cancer you have can be
treated by surgery, and that is all. Sometimes you need several different types of treatment. It depends
on what symptoms you have. If your symptom of your brain tumor was a seizure, and you had surgery,
and that’s gone and you are not having seizures anymore, then that is not interfering with your life.
Sometimes your symptoms may leave you with mobility issues and so that is going to make it a bit
difficult to cope. And how the course of your disease progresses that also affects your coping. And the
prognosis: the prediction for how your cancer is going to do.
>> Coping also has to do with their [the patient’s] prior level of adjustment. What happened in your
past? How did you adjust to it? Like I was saying a while ago, those of you who are through with
treatment and you look back on the past and you never ever thought that you would be able to go
through what you have gone through and you adjusted and you went through it, also has to do with
your personality. There are some people whose personality is very easy going and they kind of just roll
with the punches. Other people are much more agitated and everything seems to be a drama. Well, that
is how they cope. What they're coping style is.
>> For some people, they do not have a very healthy coping style. What they do -- maybe they smoke
more or they drink more or they use illicit drugs. That is a very unhealthy coping style. Other people's
coping style might include prayer, they may use meditation, help other people. Your prior experience
with loss can also help you with coping. It does not mean that you ever get used to dealing with loss. But
as you know, living with cancer and having a cancer diagnosis is a lot of loss. And depending on what
kind of side effects and how your cancer presents itself, there are things that you lose in life and then,
how do you live with the new normal?
>> Also your disease may be a threat to obtain education. Often I see people who are in college and
maybe they were late, in their 40s, and went back to school. Now, they have cancer and so they have to
drop out of school. Other people may have been planning to get married. But because they have cancer,
they are not going to get married because they do not want to bring that burden to their loved one.
>> While other people get married when they have cancer because the person really wants to marry
them and support them. For some people, they are not in a relationship and they are afraid that this is
going to affect their dating. For some people, they delay pregnancy. The woman wants to get pregnant
but she is afraid because she has cancer, so it is very important to find out how pregnancy fits in with
her diagnosis.
>> Sometimes they are young parents and they are dealing with young children. This is interfering with
their ability to raise their children because somebody has to help them. If somebody has teenagers, that
in itself is very difficult without having cancer on top of it. So all of this is going to interfere with child
rearing. Sometimes people are just starting their career and now they have cancer. They have to drop
out because they have to get cancer treatments, so it is going to interfere with their career. I have seen
people who thought that they would retire early, but now they have cancer and they decided that they
need to work as long as possible so they can have insurance. Then, often, people think, when I retire, I
am going to travel. Well, when they have cancer, they have to stay close to where they are getting
treatment to deal with the side effects. So that is going to interfere with their ability to travel.
>> Coping also has to do with attitudes. Your attitudes come from your culture, the culture you grew up
in, what spiritual attitudes you have, and what religious attitudes you have. Spirituality is a vertical
connection to a higher being. Your religion is the horizontal connection to other people with like
religious views. It also has to do with emotionally supportive persons. If there are people in your life
who are emotionally supportive. Sometimes people tell me, their husband will bring them to their
appointments but their husband is not emotionally supportive. They just are physically there. Often,
there are other people who are emotionally supportive for them. Also, depending on what side effects
you have and how the disease or the treatment affected you, there is potential for rehabilitation. Then
you know you can get better if you go through rehabilitation. That gives you hope, that there is hope for
the future.
>> There are tasks involved with coping. The very first task, is you have to believe that you have a brain
tumor. You have to integrate the diagnosis. It is very hard to believe because you might have been
feeling well. Often people with brain tumors tell me, they were not so surprised because they had
symptoms. They might have had headaches. Or weakness. Or seizures. So they were not so surprised,
but it is just overwhelming to think they have a brain tumor. So they have to integrate that diagnosis
and believe they have it. Once they do that, then that helps them deal with whatever treatment plan
there is. They have to be able to tolerate stress. I'm sure that most of you are shaking your head yes. It is
extremely stressful to go through cancer treatment. Just to go through every appointment, just to
understand what the doctor is saying. And understand what is next after you have had this treatment,
and then what is next. Tolerate the stress of getting to the doctor, of bloodwork, all the different tests
that you have and then to adjust to the healthcare system. You have to learn a whole new language. I
am sure that most of you had no idea nor any desire to learn the words that you have learned about the
glioblastoma multiforme or astrocytoma, or all of those different cytomas that you can have. You never
thought about learning what those meant. About different medications that you are taking and what
they are for. What your blood count means.
>> Then, you have to be able to make treatment decisions. Very difficult treatment decisions that only
you can make. Your family is supportive of whatever decision you make, because you are the one that
has to go through the treatment. You are the one that has to go through the side effects of the
treatment. Often people tell me, I really did not want to go through treatment but I do not want to let
my family down. I am doing this for my family. Now, I will ask them, “Does your family know that?”
[They say], “No. I don't want to tell them. I'm doing it for my family. If it was up to me, I would stop the
treatment.” I encourage them to talk to their families to make sure that they are on the same page.
Also, and this is very difficult, to communicate what your diagnosis is and what it means to other people.
Especially with a brain tumor. You may be in treatment for many years. And it is hard for people to
understand, well, I had a friend with breast cancer and she was treated for a year and now she is not
getting treatment anymore. That is a different kind of cancer. People are talking apples to oranges
instead of, “This is a brain tumor.” Depending on where it is, what type it is, it is very difficult to tell
people.
>> Always ask a person, “Who was the hardest person you had to tell about your cancer?” For parents, it
might have been their children. For some people, if they have older parents, it was telling their older
parents. Then there are people I know who would not tell their older parents that they had a brain
tumor because they are afraid that that would make them die. I reminded them, your mother is 86 years
old. She survived for 86 years and I'm sure she did not have an easy life all of these 86 years, so she will
be able to tolerate that. You are her daughter. It is important for her to be able to know and to be able
to help you in any way that she can. People want to do things. They want to do things for you but they
do not know what to do. Sometimes it is really simple things, like, “Can you go to the grocery store for
me? Here is my list. Here is some money.” It is simple things like that. People want to do things and they
do not know what that is. Sometimes it is taking you to your treatments and driving you there so that
your family member can go to work. Simple things and people want to help. I know that it is very
difficult to ask for help.
>> Denis Waitley says, “Time is an equal opportunity employer. Each individual has exactly the same
number of hours and minutes every day. Think about it. We have 60 minutes in one hour. Rich people
cannot buy any more hours. Scientists cannot invent new minutes. And you can’t save time to spend it
on another day. Even so, time is amazingly fair and forgiving. No matter how much time you have
wasted in the past, you still have tomorrow.” So you do not want to waste your time worrying about
what if it comes back, when today, you are either getting treatment or you are through with treatment,
because that is the only time that you have. Build your support team: caregivers, family, friends, support
groups. The American Brain Tumor Association offers a lot of different webinars. Physicians and your
healthcare team. Spiritual support. Psychosocial clinicians.
>> Think about who your support team is. Some of you may have one person but that is still part of your
support team. When you start thinking about it, you may have more people than you think on your
team. Why do you need a team? Well, it makes you feel more secure. You do not feel as isolated and
you are also not as vulnerable to depression when there are people you know that care about you and
want you to get better. When you take someone to appointments with you, you get better information
processing and management. Because they may hear what you did not hear, and you may hear
something that they did not hear.
>> Being able to take you to and from the treatment -- that is physical and logistical support. It increases
your likelihood of successful coping if you have a support team and resources, like the American Brain
Tumor Association’s mentoring program. CanCare is another support program, Cancer Counseling
Incorporated, MD Anderson Network, the American Psychosocial Oncology Society, a medical
psychiatrist, psychologist, social workers and nurses that help people with cancer, medical social
workers, mental health professionals, brain tumor support groups – in your local institution, you may
have brain tumor support groups. I would advise you to go to them, they can be very helpful. Private
counseling can also be helpful.
>> Now, back to the support groups. There are some people that really, really go to support groups and
it really helps them. Other people -- when they go to support groups, they get really depressed because
they take on the pain of the other members. If that is the case, maybe a support group is not best for
you. Other people feel like, “If I can go to a support group, it helps other people.” And those are people
that need to be in support groups because they do help each other. Religious organizations are also a
resource. Control what you can. There are a lot of things in life we do not have control over. In fact, a lot
of things. But you can control what you eat. You can control how much you exercise. You can control
drinking and smoking. You can stop that. You can control what you do for fun. If you have been doing
something for a long time and you used to enjoy it and you do not anymore, then do not do it anymore.
Just say, “What am I doing this for?” Just because every Monday you’ve gone to yoga, if you don’t enjoy
it or if you feel like you’re not getting anything out of it, then you can find something else to do. Weight
management. This is very difficult. Do what you can. Get help from dietitians. Adherence to treatment.
Do what they tell you to do and then you know you have done everything that you can to keep your
disease under control.
>> Control your stress. Find what relieves your stress. Eleanor Roosevelt in 1960 (and you know that she
has been through a lot) said, “You gain strength, courage, and confidence by every experience in which
you stop to look fear in the face. You are able to say to yourself, I have lived through this horror. I can
take the next thing that comes along.” It is important that you have lived through this and whatever
comes along, you will deal with it when it comes along because there is no way that you can anticipate
what is going to happen. Right? You could have never predicted that you were going to get a brain
tumor and all of the treatment so that you would have to go through to get through it. But you did. You
went through it. And whatever comes along next, you can get through it. I would like to thank all of you
and hopefully, this was helpful. Hopefully you have some questions for me.
>> Thank you, Ms. Hughes for that wonderful presentation. Ms. Hughes will now take questions so if you
have a question you would like to ask, please type and submit it using the question box in the webinar
control panel on the right hand of your screen. Mary, we have one question here, what happens if the
depression goes undiagnosed or untreated, posttreatment, for an extended period of time?
>> Well, it won't go away and often it gets worse. Depression is curable. That is our goal when we treat
people for depression. Our goal is to cure them of depression. It is not just, take care of it for a little
while. What we tell people is, when we give the medication, that once the medication starts working
and your depression is gone, you will need to be on the medicine for at least six months to make sure it
is gone.
>> At the end of six months, we will look at getting you off of the medication. But what I have found is
that often people tell me, once they are not depressed on medication, they have been depressed all
their life and did not realize it until they finally were not depressed. For some people, they need
antidepressants forever. It is sort of like if you are diabetic, you are going to need insulin forever. It is
part of what you need to be able to function in a healthy way.
>> Thank you for that. Another question that we have is, can you talk about the role of hormones on
depression and tumor growth?
>> Well, that is a good question, because there are different kinds of hormones. There are female
hormones, estrogen, and male hormones, testosterone and steroids – those are considered hormones,
too. Often, in fact, always people that I see with brain tumors, if they have radiation to their ahead, they
are going to get steroids which decreases the swelling in the brain. Often people that take
chemotherapy will get steroids because it decreases the side effects of the chemotherapy. Sometimes
people get different types of steroids to increase their appetite. It depends -- if you are talking about a
breast tumor, if it is estrogen-receptive, then the hormone estrogen will make the tumor grow. But for
brain tumors, I am not familiar with any connection between estrogen and testosterone and brain
tumors.
>> Thank you. Another question we have here. For those who have libido issues as well as a total lack of
patience with their spouse or their relationship that they are in, what are some suggestions that you
have for them of what to do next?
>> Okay. That is an excellent question and that has to be one of my specialties is sexuality and candor.
So for women that have low libido, it may be because they were thrown in early menopause. Men with
low libido, it is very important to get their testosterone level checked. If it is below normal, then you get
sent to an endocrinologist and the doctor may want to supplement your testosterone with a patch or
with gel. Studies have shown that the men who take testosterone do not have an increased risk for
getting prostate cancer. Women even have testosterone and it’s what mediates desire, sexual desire.
Not only with desire, but if women are in menopause they may have vaginal dryness and men,
depending on how the treatment affects them, they may have erectile dysfunction and they may need
to check with a doctor. If they’re not on nitrates, they can take any of the PDE5 inhibitors like Cialis or
Viagra or Levitra. They may need help with other things to help them sexually. But the first step is to talk
about it with your partner. Often, if the brain tumor is in the frontal lobe, it may cause personality
changes and they may be angry, not just angry with their partner but angry at themselves because they
cannot perform like they used to.
>> Thank you. Another question we have here. Do you find that brain cancer affects people's anxiety
and depression in a different way than other cancers, as it has a direct impact to the brain?
>> Not necessarily. But depending on where the tumor is, if it is in the frontal lobe, it is your personality.
So sometimes that can be the first sign of a brain tumor. The personality is changed. For some people,
because they have a frontal lobe tumor, it changed their personality. It may make them more anxious or
may make them depressed, there’s not necessarily a difference. They do respond to medication like
someone without a brain tumor that has depression and anxiety, but that may be the first time that they
ever get it because of where the tumor was.
>> Great. Thank you. And for those who are currently under care for anxiety and depression, one worry
is that sometimes the doctors diminish the depression symptoms because they had those before they
had the brain tumor. Do you have best practices for presenting your depression-related issues to your
physician, related to the brain tumor?
>> Well, for us in psychiatry at MD Anderson, if someone had depression before they had a brain tumor,
they are highly likely to have more depression after the brain tumor, so it needs to be treated regardless
of if they ever had a brain tumor or not. The depression needs to be treated. So you had it before. Well,
now there is even more reason to treat it so that you can get rid of it and get rid of depression while you
are focusing on dealing with a brain tumor. You can ask for a psychiatric referral. Hopefully, the
institution that you are in or the doctor has a psychiatrist that they refer to and you and you can go see
the psychiatrist and they can get your depression treated. Because in psychiatry, we are experts at
treating depression and anxiety. We would never give you any cancer medicine. Often all different kinds
of doctors feel free to treat depression when that is not their field of expertise.
>> Thank you for that. Also, are there any holistic remedies for treating depression?
>> There is -- that is also a good question because I have been asked to speak at the integrative
medicine conference several times and I have looked up all of the different holistic treatments for
depression and none are evidence-based. They will give the herb and give a placebo and people did not
do any better on one than they did the other. So as of right now, there is not any evidence-based holistic
treatment for depression.
>> And another question was what are some of the best drugs you know to treat depressive and
negative symptoms?
>> I can name all of the drugs and some drugs work very well. I know that if you had a brain tumor, they
will likely not give you a drug called Wellbutrin because it can lower your risk of seizures. Lower the
seizure threshold so that is one drug and it is in a family all by itself. So you will not be given that drug.
The drugs that are specific serotonin reuptake inhibitors, SSRIs, like Prozac, Zoloft, Paxil, Lexapro, Celexa
-- we use those a lot. And the SNRIs, like Effexor and Cymbalta and Pristiq, those drugs, especially
Cymbalta can help with neuropathic pain. If you have that as a side effect from your treatment, you may
be given Cymbalta but Effexor can work and Pristiq. Those are in that family. There are some old drugs
like Trazodone, Triptyline, Amitriptyline. Those, in low doses can be used for sleep and you do not build
up any tolerance to that. At high doses, they treat depression but they can cause low blood pressure and
really bad dry mouth. Sometimes doctors will give low doses, especially Trazodone, for sleep.
>> Thank you. I think we have time for one more question. This one is -- if someone has sought help in
this area with both the neuropsychologist and psychologist, but they are always looking for tips on how
to handle stress at work, for managers who really do not understand some of the problems created by
brain tumors -- if you have any tips on how to handle these types of stresses.
>> Well, I do know that if you have mobility problems that all workplaces are obligated to provide you
with whatever special devices you need to work. Like if you need a wheelchair or -- whatever devices
you need. And you may talk to your manager that these things you are dealing with are permanent.
They are long-term. They will not go away just because your brain tumor has gone away. You are left
with some residual side effects. If you know what you need, if you need more time to work on a project.
If you need to be able to work less hours, and go home and you could work at home, depending on what
you need, you can ask them for what you need and you can also go to HR and ask them. Certain jobs
have certain criteria that you have to be able to -- you need to be able to lift 10 pounds or whatever it is.
There is some criteria and if you cannot do that, then that is the job description. So it is very difficult
when you are talking with a manager that does not understand. What I found is that when managers
have somebody in the family with cancer, they are much more understanding.
>> Great. Thank you so much, Ms. Hughes. That is all the time that we have today. Thank you all for
joining us and thank you once again to Mary K. Hughes for her wonderful webinar presentation. For
more information, oh go ahead >> If there are more questions -- you can always email them to me through the American Brain Tumor
Association.
>> Great. Thank you so much and also for more information on brain tumors, to help patients and
caregivers process the diagnosis, understand new and difficult vocabulary and access resources to help
make informed decisions, you can also call the ABTA CareLine at 800-886-2282. Let's pause for just a
moment to conclude our webinar recording.
>> We invite you all to continue to check back at our website, www.ABTA.org for the ABTA's library of
free on-demand webinars that feature experts addressing a range of brain tumor topics from treatment
options and tumor types to diets and coping with a diagnosis.
>> Our next webinar is Understanding the Diagnosis and Treatment of Acoustic Neuroma, which will
take place Tuesday, December 8 from 1-2 PM CT. Acoustic neuroma, also known as vestibular
Schwannoma is an uncommon, slow-growing benign tumor. It develops along the main nerve from the
inner ear to the brain. Which may directly impact one's balance and hearing. Join Elizabeth B. Claus,
M.D., PhD, from Brigham and Women's Hospital and Yale University School of Public Health who will
discuss the current treatment options and the latest patient trends. This webinar will also include an
interactive Q&A with Dr. Claus.
>> This concludes our webinar. Thank you all so much for joining us and please be sure to complete the
evaluation survey which you will receive by email tomorrow. You may now disconnect. Have a great day.
[Event Concluded]