I may look OK, but I’m not”
The Unique and Often Unmet Needs of Non-Malignant Brain Tumor Patients
American Brain Tumor Association Spring - Summer 2011
When Denise Corrin was recovering fromsurgery to
remove a non-malignant brain tumor, her physical
therapist asked her if she could walk up a flight of stairs.
Corrin, who was in good shape physically and a self-professed
over-achiever, ran up and down two flights of
stairs. Soon after, she was released fromthe hospital.
Two years later, Corrin, 55, of Long Beach, Calif.,
feels like she is just now starting to recover, with the
help of a neuropsychologist, from the physical and
emotional effects of a meningioma.
“What they didn’t consider was the psychological
part.How someone comes back into the real world after
suffering what I suffered,” said Corrin. In the two years
preceding her brain tumor diagnosis, Corrin lost jobs,
was divorced, arrested for drunk driving (she later
passed a breathalyzer test) and was misdiagnosed before
she was finally taken to the emergency room in 2008.
And while many of her behavioral and cognitive symptoms
subsided following the surgical removal of a 5-centimenter
tumor from the right side of her brain, she still
struggles with hand-eye coordination, ataxia (lack of
muscle coordination), depression, anxiety and fatigue.
Corrin’s friends and family expected her to resume
her old life, and to go back to being the same person
she was before the brain tumor.
“People couldn’t tell anything was different, but I
could,” said Corrin.
“Friends and family members may assume that just because the brain tumor has been
removed that all the problems have been solved,” said
Paula Sherwood, R.N., Ph.D., C.N.R.N., associate professor,
University of Pittsburgh Schools of Nursing
and Medicine. “Patients are happy it’s not malignant;
happy it’s been taken out. And some do very well with
few side-effects. But there are others who have significant
side-effects.”
Even though a benign brain tumor is not cancerous,
the diagnosis can result in damaged brain tissue from
the tumor itself and/or the treatment which typically
involves surgery and sometimes radiation and
chemotherapy. Related symptoms, which may be longterm
and even life-threatening, can include seizures;
hormonal disorders; difficulty with memory, thinking
and hearing; visual difficulties; fatigue; and weakness
or coordination difficulties in the arms and legs.
According to the Central Brain Tumor Registry of
the United States (CBTRUS) non-malignant, or
“benign,” brain tumors (typically meningiomas,
ependymomas and pituitary tumors) account for 65
percent of primary brain tumor diagnoses (most often
in women) each year. An estimated 40,470 Americans
will receive a benign brain tumor diagnosis in 2011.
“Because of a lack of research and data,we have no idea
whether people with benign tumors are able to return to
work, engage in the same social situations and/or resume
their familial obligations,” said Sherwood.“Something as
simple as balancing the checkbook – depending on where
the tumor is located –may be something that someone
can’t do anymore.”
“Benign is a tough word. It conjures up the
sense that everything is going to be
OK,” said Terri Armstrong,
Ph.D., associate professor
at the
AMERICAN BRAIN TUMOR ASSOCIATION Only registered and activated users can see links., Click Here To Register... 3
University of Texas-Health Science Center School of
Nursing and adjunct professor at the M.D. Anderson
Cancer Center. “I get the sense that patients are not
adequately prepared” for the reality.
“There is still a lot of misinformation and misunderstanding
about the impact of non-malignant brain
tumors, particularly when their effects can be life
threatening,” said Nancy Conn-Levin, a 15-year brain
tumor survivor, author and facilitator of a large brain
tumor support group for the past 10 years. “Especially
for those brain tumor survivors who appear ‘fine’ (not
visibly disabled), their challenges often go unnoticed,
sometimes even by close friends and family members.”
In fact, a recent study found that many
benign brain tumor patients do not
receive, yet greatly need, supportive care
services following a benign brain tumor
diagnosis and subsequent treatment. The
study, conducted at a Toronto hospital,
assessed 29 patients monitored over a
two-year period following a benign brain
tumor diagnosis.
Many of the patients “would have benefited
in the short-term peri-operatively
(before and after surgery) from support
services that are routinely available to
cancer patients but not to patients with
benign tumors,” said JaniceWong, a third
year medical student at TorontoWestern
Hospital, and the co-author of the study,
“A qualitative assessment of the supportive
care and resource needs of
patients undergoing craniotomy for
benign brain tumors,” appearing in the
October 2010 issue of the journal
Supportive Cancer Care.
“It was especially important for many
patients to know what to expect from the
surgery and beyond, and to communicate
with others with similar diagnoses,”
saidWong.
The study recommends extending
existing and well-developed resources designed for
patients with malignant brain tumors to those with
benign brain tumors. In addition, a patient’s health
care team should strive to be aware of specific factors
that may modify patient support needs and make
appropriate recommendations for community support
resources.
“Many people with non-malignant
brain tumors feel somehow
less entitled to support and
helpful resources (i.e., rehabilitation
services, vocational counseling,
transportation assistance,
etc.),” said Conn-Levin, who is
speaking at the ABTA Patient-
Family Connections Meeting &
Retreat in July (see page 5). “Even
those survivors of non-malignant
brain tumors who are moderately to
severely disabled may find themselves
having difficulty getting the support they
need or even knowing where to ask for
support. Following my own brain tumor
surgery, I received no information at all
about rehabilitation services, neuro-psychology
testing, brain tumor support
groups or any other type of assistance. I
also was not told about the importance
of lifelong follow-up care, to be certain
that any potential recurrence was diagnosed
at an early stage.”
Sherwood suggests that if problems are
suspected, persons with a benign tumor
should receive an evaluation from a clinical
neuropsychologist, even if it means
traveling to a major medical center to do
so. “A neuropsychologist can identify
areas of deficit; things that the person has trouble
doing, like remembering day to day activities and figuring
out problems.“ And while these deficits may continue
“there are a lot of compensatory strategies that
can help minimize their effects.” She also recommends
that patients strictly adhere to follow-up visit schedules
with all members of the health
care team.
“Patients need to know that
they are not alone,” said
Armstrong. “There are available
resources, and it’s OK and
important to let your health care
team know if you are having difficulties.”
Sharmyn McGraw, 49, a pituitary
tumor survivor, said “a professional
therapist, counselor or spiritual practitioner,”
are often very good resources for patients. “Finding a
support team is important; however, the patient needs
to be selective when choosing friends or family as part
of that team. Not everyone is in a position to understand
a patient’s needs and this can make it difficult for
the patient, friend or family member that is trying to
be supportive.”
Corrin recommends counseling for family members
and caregivers. “They can’t understand what’s in a
person’s mind, but if they are given the support and
other tools, it can help.”
She also suggested returning (if possible) to the
activities that you loved before the brain tumor. “I’m
an athlete and I returned to the gym five days a week as
soon as possible. It brought me comfort and helped
with my hand-eye coordination.”
Corrin does crossword puzzles and routinely plays
board games to keep mentally fit. She joined a support
group from a list obtained through ABTA, and read the
educational materials on benign brain tumors at
abta.org.
“I feel like I made a miraculous recovery,” said
Corrin. “Every day that I can enjoy the sun and watch
my children grow is a miracle.” __
The Unique and Often Unmet Needs of Non-Malignant Brain Tumor Patients
American Brain Tumor Association Spring - Summer 2011
When Denise Corrin was recovering fromsurgery to
remove a non-malignant brain tumor, her physical
therapist asked her if she could walk up a flight of stairs.
Corrin, who was in good shape physically and a self-professed
over-achiever, ran up and down two flights of
stairs. Soon after, she was released fromthe hospital.
Two years later, Corrin, 55, of Long Beach, Calif.,
feels like she is just now starting to recover, with the
help of a neuropsychologist, from the physical and
emotional effects of a meningioma.
“What they didn’t consider was the psychological
part.How someone comes back into the real world after
suffering what I suffered,” said Corrin. In the two years
preceding her brain tumor diagnosis, Corrin lost jobs,
was divorced, arrested for drunk driving (she later
passed a breathalyzer test) and was misdiagnosed before
she was finally taken to the emergency room in 2008.
And while many of her behavioral and cognitive symptoms
subsided following the surgical removal of a 5-centimenter
tumor from the right side of her brain, she still
struggles with hand-eye coordination, ataxia (lack of
muscle coordination), depression, anxiety and fatigue.
Corrin’s friends and family expected her to resume
her old life, and to go back to being the same person
she was before the brain tumor.
“People couldn’t tell anything was different, but I
could,” said Corrin.
“Friends and family members may assume that just because the brain tumor has been
removed that all the problems have been solved,” said
Paula Sherwood, R.N., Ph.D., C.N.R.N., associate professor,
University of Pittsburgh Schools of Nursing
and Medicine. “Patients are happy it’s not malignant;
happy it’s been taken out. And some do very well with
few side-effects. But there are others who have significant
side-effects.”
Even though a benign brain tumor is not cancerous,
the diagnosis can result in damaged brain tissue from
the tumor itself and/or the treatment which typically
involves surgery and sometimes radiation and
chemotherapy. Related symptoms, which may be longterm
and even life-threatening, can include seizures;
hormonal disorders; difficulty with memory, thinking
and hearing; visual difficulties; fatigue; and weakness
or coordination difficulties in the arms and legs.
According to the Central Brain Tumor Registry of
the United States (CBTRUS) non-malignant, or
“benign,” brain tumors (typically meningiomas,
ependymomas and pituitary tumors) account for 65
percent of primary brain tumor diagnoses (most often
in women) each year. An estimated 40,470 Americans
will receive a benign brain tumor diagnosis in 2011.
“Because of a lack of research and data,we have no idea
whether people with benign tumors are able to return to
work, engage in the same social situations and/or resume
their familial obligations,” said Sherwood.“Something as
simple as balancing the checkbook – depending on where
the tumor is located –may be something that someone
can’t do anymore.”
“Benign is a tough word. It conjures up the
sense that everything is going to be
OK,” said Terri Armstrong,
Ph.D., associate professor
at the
AMERICAN BRAIN TUMOR ASSOCIATION Only registered and activated users can see links., Click Here To Register... 3
University of Texas-Health Science Center School of
Nursing and adjunct professor at the M.D. Anderson
Cancer Center. “I get the sense that patients are not
adequately prepared” for the reality.
“There is still a lot of misinformation and misunderstanding
about the impact of non-malignant brain
tumors, particularly when their effects can be life
threatening,” said Nancy Conn-Levin, a 15-year brain
tumor survivor, author and facilitator of a large brain
tumor support group for the past 10 years. “Especially
for those brain tumor survivors who appear ‘fine’ (not
visibly disabled), their challenges often go unnoticed,
sometimes even by close friends and family members.”
In fact, a recent study found that many
benign brain tumor patients do not
receive, yet greatly need, supportive care
services following a benign brain tumor
diagnosis and subsequent treatment. The
study, conducted at a Toronto hospital,
assessed 29 patients monitored over a
two-year period following a benign brain
tumor diagnosis.
Many of the patients “would have benefited
in the short-term peri-operatively
(before and after surgery) from support
services that are routinely available to
cancer patients but not to patients with
benign tumors,” said JaniceWong, a third
year medical student at TorontoWestern
Hospital, and the co-author of the study,
“A qualitative assessment of the supportive
care and resource needs of
patients undergoing craniotomy for
benign brain tumors,” appearing in the
October 2010 issue of the journal
Supportive Cancer Care.
“It was especially important for many
patients to know what to expect from the
surgery and beyond, and to communicate
with others with similar diagnoses,”
saidWong.
The study recommends extending
existing and well-developed resources designed for
patients with malignant brain tumors to those with
benign brain tumors. In addition, a patient’s health
care team should strive to be aware of specific factors
that may modify patient support needs and make
appropriate recommendations for community support
resources.
“Many people with non-malignant
brain tumors feel somehow
less entitled to support and
helpful resources (i.e., rehabilitation
services, vocational counseling,
transportation assistance,
etc.),” said Conn-Levin, who is
speaking at the ABTA Patient-
Family Connections Meeting &
Retreat in July (see page 5). “Even
those survivors of non-malignant
brain tumors who are moderately to
severely disabled may find themselves
having difficulty getting the support they
need or even knowing where to ask for
support. Following my own brain tumor
surgery, I received no information at all
about rehabilitation services, neuro-psychology
testing, brain tumor support
groups or any other type of assistance. I
also was not told about the importance
of lifelong follow-up care, to be certain
that any potential recurrence was diagnosed
at an early stage.”
Sherwood suggests that if problems are
suspected, persons with a benign tumor
should receive an evaluation from a clinical
neuropsychologist, even if it means
traveling to a major medical center to do
so. “A neuropsychologist can identify
areas of deficit; things that the person has trouble
doing, like remembering day to day activities and figuring
out problems.“ And while these deficits may continue
“there are a lot of compensatory strategies that
can help minimize their effects.” She also recommends
that patients strictly adhere to follow-up visit schedules
with all members of the health
care team.
“Patients need to know that
they are not alone,” said
Armstrong. “There are available
resources, and it’s OK and
important to let your health care
team know if you are having difficulties.”
Sharmyn McGraw, 49, a pituitary
tumor survivor, said “a professional
therapist, counselor or spiritual practitioner,”
are often very good resources for patients. “Finding a
support team is important; however, the patient needs
to be selective when choosing friends or family as part
of that team. Not everyone is in a position to understand
a patient’s needs and this can make it difficult for
the patient, friend or family member that is trying to
be supportive.”
Corrin recommends counseling for family members
and caregivers. “They can’t understand what’s in a
person’s mind, but if they are given the support and
other tools, it can help.”
She also suggested returning (if possible) to the
activities that you loved before the brain tumor. “I’m
an athlete and I returned to the gym five days a week as
soon as possible. It brought me comfort and helped
with my hand-eye coordination.”
Corrin does crossword puzzles and routinely plays
board games to keep mentally fit. She joined a support
group from a list obtained through ABTA, and read the
educational materials on benign brain tumors at
abta.org.
“I feel like I made a miraculous recovery,” said
Corrin. “Every day that I can enjoy the sun and watch
my children grow is a miracle.” __
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