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Thread: The Unique & Often Unmet Needs of Non-Malignant Brain Tumor Patients -

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    Default The Unique & Often Unmet Needs of Non-Malignant Brain Tumor Patients -

    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 WWW.ABTA.ORG 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.” __

  2. #2

    Default post op issures

    Wow you are right on as a retired RN and survivor of colloid cyst removal, I agree with you assessment of our procedure. I was 29 and had 4 children ages 7, 6 and 2 year old twins. There was no discharge planning or questions as to... would my children be safe when my husband returned to work after a week off at home with me. Did I feed them lunch did I take my pills, and did I write that check. I had profound short term memory deficit and my 7 year old son was my memory "stik" as to who got fed, desert etc.. I did return to critical care nursing 1 year later and worked in the field for 35 more years.
    Donna

  3. #3
    New Community Member
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    Default

    I always love reading your story because it gives me hope that A)The cyst won't necessarily come back and B)You can lead a fairly normal life following craniotomy.

    My cyst DID come back after the first endoscopic procedure in 1992, and I'm hoping that after the craniotomy in 2007 I won't have to deal with it again. I also hope that I can continue to lead a fairly normal life. I returned to my job as a mechanical engineer, and so far so good, but I continually deal with the effects of an impaired short-term memory. It's just another one of life's hurdles that I need to deal with. In the larger scheme of things, I'm pretty fortunate.

    Glenn

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