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90. Are
there specific support groups for brain tumor patients? How do I find one?
M.L.'s comment:
Yes, there are many
good support groups available for brain tumor patients. Some people think
that all support groups are the same, but that isn't necessarily true. I
have been to a number of different support groups and have found that each
of them are as different as the people who are in them. Brain tumor support
groups can provide an opportunity to share practical information, offer
wisdom, or hear other stories of survival.
I would strongly
recommend that if you're interested in attending a brain tumor support group
that you do so. Support groups can provide tremendous benefit for the
patient and the caregiver. Plan to try out a group a few times. If you
don't like a particular group, try another one.
There are a number of
ways to locate a support group in your area:
*Ask your
doctor, nurse or social worker
*Ask your
cancer treatment center or hospital
*Contact the
American Brain Tumor Assn. (see question 100 for web site information)
*Check your
local newspaper or telephone book
*Ask others
that you may know that are dealing with brain cancer
Keep in mind that if
you live in an area that doesn't have a support group for cancer patients,
it's still possible to get information and support from brain tumor chat
rooms on the Web. This can be a bit tricky, as some people have a tendency
to offer medical advice based on their own experience, but it can still be a
positive experience for patients and caregivers.
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91. What
records do I need to keep about my treatment? What is the best way to stay
organized?
Although each of your
doctors have a record of your treatment, keeping track of what has happened
over the course of your treatment is helpful to you, especially if you
change doctors or treatment facilities. Some patients write everything down
in a calendar, and some patients keep reports in an envelope. Many people
have found it convenient to use a loose-leaf notebook with dividers to stay
organized. You may want to keep separate sections for pathology reports,
laboratory reports, scan reports, notes from clinic visits, and insurance
correspondence. Your doctors will usually be happy to give you copies of
your reports at your clinic visits. Many patients like to keep a one-page
summary in their purse or wallet with their current medications, drug
allergies, past medical history, and the names and phone numbers of their
doctors. Make sure the summary includes the dates of your operations and
radiation therapy, as well as a list of all the chemotherapy drugs you have
received. This can be extremely helpful if you have to go to an emergency
room when you are away from home.
M.L.'s comment:
I've met a number of
people who had impressive record keeping systems, including bulky binders
with color-coded tabs and graphs of everything from white counts to bowel
movements! I can certainly see why so much detail is necessary for some
patients. Some people may be having a lot of toxicity. By keeping careful
records of all the variables involved in their treatment, patients can try
to determine what they can change in their treatment to help avoid such
toxicity. Fortunately, I didn't have any major problems with toxicity while
I was on chemotherapy.
Initially, keeping
tract of all the medications that I was on was quite a challenge. I found it
helpful to keep a list of all of my medication, how often I was to take it, and when
I was supposed to take it. This was especially important when I was on
chemotherapy because I had to take certain medications in a particular order
at a particular time. In addition to listing all of my medications, I also
listed the day and date so I could check off when I took my medications for
that day. When you're taking as many as 10 to 15 pills per day, this type of
timetable can be valuable. By keeping this record, I was assured that I
wouldn't miss any of my medications.
One thing that was
very helpful was to take my daily planner with me to every appointment. This
was great because it had my calendar already in it, along with important
names and addresses and extra paper for me to write on. My daily planner
also gave me easy access to a list of important questions that wanted to ask
my doctor, and I could write down the answers that my doctors gave me during
my visit. For moral support, my husband always went with me to my
appointments. If there was something that I missed, he would always remember
what was said to me.
I also created a list
of my doctors, their telephone numbers, and the names of their nurses or
assistants. This became extremely useful when I was receiving radiation
treatments because I came in contact with at least six other people in that
office (not including my radiation oncologist!) Having my calendar available
during radiation treatment helped me keep track of how many weeks I had been
receiving radiation therapy and the appointments that I had for MRI scans. I
was able to keep track of the dates of when I would be taking chemotherapy.
I'd also be able to make a note to remind myself to have my blood taken the
week before chemotherapy, so my oncologist could review the results before I
started taking any of the drugs.
Having all of this
information available right in my calendar made it so much easier for me to
communicate information to my doctors. I found that many times the
neurosurgeon, radiologist, and oncologist asked me the same questions. Being
able to flip to my calendar without having to remember all of the
information off the top of my head was invaluable to me.
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92. My
oncologist told me that even though I'm doing well my tumor will probably
come back at some point. He said, "Hope for the best, but prepare for the
worst." I'm hoping for the best, but how do I prepare for the worst?
There are many ways
that you can mentally and physically prepare yourself for the possible
recurrence of your tumor. Follow up with your doctor regularly for physical
examinations and possible re-evaluation by MRI. If your tumor recurs and it
can be surgically resected, you should not assume that the second operation
will be identical to the first. Some patients heal more slowly following
radiation therapy, but some recover sooner because the recurrent tumor was
smaller than the original. In some cases, the tumor may change to a
different subtype more aggressive than the original tumor. This may require
additional treatment after surgery.
If your tumor recurs
and cannot be removed, your doctor may refer you to a clinical trial or
offer you treatment with radiation therapy or chemotherapy, if you have not
already had these treatments.
Patients with a long
interval between their original tumor and a recurrent tumor may be surprised
to find that a new treatment is available that had not been available
previously. Therefore, it is important to discuss with your doctor at the
time of recurrence how you should be treated.
It is far more
difficult to prepare mentally for a recurrent tumor, especially if your
treatment options are limited or the recurrent tumor causes severe
disability. It is sobering to consider that you may lose the ability to
speak or comprehend speech, but some patients do. Finding someone who will
make decisions on your behalf and speak for you is critical. A Durable
Power of Attorney for Medical Care (DPA) allows you to appoint a person
who will assume medical decision-making for you if you become disabled. Your
DPA should have a thorough understanding of your tumor, your prognosis, and
your wishes for further treatment, should you become incapacitated.
Remember that your doctor must be able to contact your DPA if you become
incapacitated; it is a good idea to give a copy of your DPA document to your
doctor with current phone numbers.
Another "worst case
scenario" you should consider is the possibility of sudden incapacity that
requires life support. Sometimes complications, such as pulmonary embolus,
stroke, and seizure require temporary support from ventilators, cardiac
resuscitation, and intravenous nutrition. If you do not want to receive life
support indefinitely, tell your DPA. You may want to develop an advanced
directive, a legal document that specifies whether you want specific
kinds of supportive care and for how long. Most hospitals now ask patients
on admission if they have a DPA for medical care and an advanced directive.
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93. I did
not have a neuropsychological evaluation before surgery, but my neurologist
recommended that I have one now that I have completed radiation therapy. How
can neuropsychological tests help me?
M.L.'s comment:
After my surgery, my
neurologist suggested that I see a neuropsychologist for testing in order to
find out if my surgery caused any temporary or permanent neurological
damage. This evaluation process lasted all day. The tests that were
performed went beyond the basic testing that was done when my brain tumor
was first discovered. The neuropsychological evaluation primarily consisted
of a series of paper and pencil question and answer tests that are designed
to examine various aspects of how the brain functions. My neurologist felt
this type of testing was critical in determining whether I would have
problems performing common tasks such as balancing my checkbook. The tests
would also determine how my short- and long-term memory had been affected by
the surgery, if I would be able to return to work, what limitation I may
have, and how I would be able to address those limitations.
Some of the tests were
very challenging and frustrating at times, but they varied in content and
were NOT scored on a pass/fail basis. Therefore, I knew that it was
important for me to put forth my best effort on all of the tests.
I was pleasantly
surprised when I got the results back. I was expecting the worst, but the
results indicated that my memory (verbal and recall) was very good. I was
ranked in the 95th percentile! My attention span and capacity had also
remained very strong, but the neuropsychologist strongly recommended that I
not push myself too hard because tiredness could affect my attention span.
This turned out to be true. When I don't take frequent breaks from the
computer or when it's late in the afternoon and I've had a fairly busy day
with a lot of meetings, my planning and organization skills "slow down" a
bit. I'll end up filing something in the wrong folder or I will forget where
I put an important document. Because I'm aware of this potential problem, I
try to make sure that I do take frequent breaks from my computer. I also try
not to schedule intense or long meetings after about 2 p.m.
I have had a few
occasional challenges is in the area of "language skills." In general, the
test results indicated that my language skills were very good to excellent,
however because my tumor was in my temporal lobe, the area of the brain
where language and memory functions are located, there are times when I
search for a particular word and I just can't find it. The neuropsychologist
warned me that I might encounter this problem. However, the impact has been
minimal. I just get a little frustrated at times. I'm usually the only one
who really notices it anyway!
Initially, I wasn't
looking forward to the neuropsychological tests (for obvious reasons), but
when I look back I'm so glad that I took them. The results have given me so
much insight in terms of what to expect with my recovery. If I hadn't taken
the tests, I wouldn't have known what problems to expect and, more
importantly, how to deal with them. The neuropsychologist was excellent in
preparing me for my return to a normal life. I learned that when issues do
come up, I shouldn't panic or let my emotions get the best of me. I would
strongly recommend a neuropsychological evaluation for all brain tumor
patients.
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94. How do I
discuss prognosis with my doctor?
Prognosis
is the expectation of survival related to the presence of a disease. Your
doctor relies on knowledge obtained from the medical literature and personal
experience to guide a patient and family through treatment. Doctors are
typically reluctant to discuss prognosis until several facts are known: the
exact type of tumor, how much of it can be surgically removed, and whether
any complications or conditions might impact on treatment.
If you are a newly
diagnosed patient, you are probably unfamiliar with many of terms, such as
remission, partial remission, response, stable disease, disease progression,
and disease-free survival, which doctors used to describe the cancer
treatment process. Doctors don't use these terms to avoid discussing cure;
they use such terms to more accurately define the probability that the tumor
is present, even when it may not cause symptoms or appear on scans.
Patients often want to know if they can be cured. The answer to that
question is never "no," but it may be "it is unlikely." Even in patients
with slow-growing brain tumors, the goal of treatment may be to control the
symptoms and prevent neurological disability rather than cure the disease.
The word "cure" is
elusive because it is difficult to prove that a tumor will never recur, even
after years of remission. There are some tumors that appear to be stable
for months or years, only to later grow rapidly into a large mass. For this
reason, obtaining scans at regular intervals does not guarantee that a
recurrence will be found while the tumor is still very small.
Some patients and
their families have been told at the time of diagnosis, "he has two years"
or perhaps, "weeks to months." Not surprisingly, a patient's reaction may
be disbelief, anger, grief, or fear. Some patients immediately seek a second
opinion, hoping to hear a better prognosis. In some cases, this is probably
a good idea. The first doctor may have been right, but the timing
(immediately after surgery) may have made it difficult for the patient and
family to understand and accept the gravity of the situation. A second
opinion may help patients accept the situation.
If your doctor informs
you that you have a tumor associated with a good prognosis with treatment,
the prognosis is given with the expectation that you will pursue therapy.
For example, patients with primary central nervous system lymphoma can
achieve complete remission that can be sustained for years, but the disease
is rapidly fatal without treatment.
Your doctor may be
reluctant to give you an exact time frame for life expectancy. The type of
tumor, its rate of growth, its response to therapy, and the presence or
absence of other medical problems may all impact survival. If a doctor gives
a range of weeks, months, or years, this range is based on the expected
behavior of the tumor, not the possible complications that may occur.
M.L.'s comment:
Two of the most
important things that I learned were (1) DON'T be intimidated by your
doctors, and (2) ask questions. I have found that most patients and
caregivers have many questions and concerns, and they need to get answers to
all of them. Your doctors and nurses are the people you should look to for
answers. Although the Internet is an incredible resource for information,
keep in mind that it's fairly general. It isn't likely to provide answers to
some of your specific questions. Every brain tumor is different. Treatment
can be different for each patient. I encourage you to ask your doctors and
nurses questions that are specific to you and your situation.
My husband and I had
so many questions. Our questions were very specific to the tumor type, at
first. Then we wanted to know what (if any) additional treatment would be
needed after surgery. We had questions about radiation therapy,
chemotherapy, medications and all of the associated topics within each of
those areas. We weren't afraid to ask questions, so we asked every question
we had. We felt like we deserved to know the answers. Sometimes I would
become frustrated when we would go to a doctor's appointment because my
husband would ask so many questions that I couldn't get an opportunity to as
mine. There were a few times when I said, "Hey, do you think you two could
be quiet for a minute while I ask a few questions?" Of course, I said it in
a joking way.
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95. My
doctor told me I have a year to live, but I feel fine now. What will happen
to me during the next year? How will I die?
While it may be too
much to assume that your doctor is correct, for the purpose of this
discussion we will assume that he based his opinion on knowing the type of
tumor you have and its expected response to treatment. Keep in mind that
your tumor could respond much better to treatment, or much worse, than he
anticipates; and therefore his estimate of twelve months may be little more
than an educated guess.
There are some
patients who have very large tumors or multiple tumors at the time of
diagnosis. If the tumor cannot be surgically removed safely, the remaining
tumor must be successfully treated with another form of therapy if the
patient is to survive. Radiation therapy may or may not stop the growth of
the tumor. Another form of therapy, such as chemotherapy, may sometimes
succeed where radiation failed. However, if the tumor continues to grow
through all attempts at treatment, it will ultimately prove fatal.
Patients who have
successful surgery to remove the majority of the tumor, a gross total
resection (see Section 4), may still have regrowth of the tumor. This may
occur locally (in the same area of the brain as the original tumor), or it
may spread to another part of the central nervous system. The
ability to control the growth of a new tumor may be limited by the treatment
of the original tumor. Further radiation may not be possible or the patient
may have developed a resistance to chemotherapy. The symptoms caused by an
enlarging tumor may be slowly progressive, such as the gradual onset of
weakness and incoordination. Sometimes patients with enlarging tumors have a
more rapid onset of weakness, confusion, or imbalance. In a few instances,
the sudden change may be related to bleeding within the tumor.
Patients with all
types of cancer may become more vulnerable to complications such as
infection, blood clots, and malnutrition. In addition, patients with primary
or metastatic brain tumors may suffer seizures, headaches, vomiting, and
difficulty swallowing. These conditions may bring on new problems that
result in even further disability. A patient who has difficulty swallowing,
for example, may choke on food or fluids, which can lead to pneumonia.
Pneumonia may cause shortness of breath, fever, and loss of appetite. A
patient who feels short of breath is unlikely to have enough energy to keep
physically active, but the lack of activity may increase the risk of blood
clots in the vessels of the legs. Swelling and pain in the legs may also
limit physical activity, confining the patient to bed. Unfortunately, these
complications may require frequent hospital or emergency room visits. It may
be difficult to anticipate and prevent these complications, or to reverse
many of these conditions once they occur. It is estimated that 70% of cancer
patients die of complications such as infection rather than the cancer
directly.
No one likes to think
about such complications when he is feeling well, but it is helpful
nonetheless to talk frankly with one’s doctor about the possibility of
becoming progressively disabled. The patient and doctor can agree on a
hospital that will be used, if necessary, and a nursing service that can
provide care at home. It is also important to discuss with family members
the aggressiveness of supportive care desired. Advanced directives
(see Question 92) are instructions to doctors and caregivers
specifying whether life support equipment, artificial nutrition, and other
supportive measures should be used if you become too disabled to direct your
further care.
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96. My
neurosurgeon, radiation oncologist, neurologist, and medical oncologist
don't always agree. Who is in charge?
The answer might
surprise you: you are in charge. Although your doctors may have
several years of experience in their respective specialties, it is still up
to you to weigh their recommendations. If your doctors are giving you
conflicting answers, make sure you find out why.
A common area of
disagreement among doctors is in regards to the frequency of follow-up MRI
scans. Your neurosurgeon may suggest that you have scans done at three month
intervals. Your oncologist, on the other hand, may recommend that you have
scans done after a specific number of cycles of chemotherapy. Some drugs,
such as BCNU and CCNU, are given every 6 to 8 weeks. Other drugs, such as
Temodar, are given in 4-week cycles. Your oncologist may change the time
between scans to coincide with your chemotherapy cycles. Keep in mind that
your doctors may differ in their recommendations for appropriate follow-up,
so you may need to remind one doctor of the follow-up procedures your other
doctor has already scheduled. For example, if you don't remind your
radiation oncologist that your neurologist has already ordered an MRI, you
could be scheduled for MRIs on different days at different facilities!
Another area of vital
importance is your medication profile. Although all of your doctors want and
need a current medication profile, it is up to you to know exactly which
medications you are taking. You are also responsible for making sure that
you have enough refills. If you are taking anticonvulsant medication, your
neurologist may ask for blood tests to check the level of the drug. If you
are also taking chemotherapy, you may be able to arrange that such blood
tests can be done at the same time as the laboratory tests that your
oncologist wants done. If you make sure all of your doctors are aware of the
laboratory tests you need, you might be able to save yourself some time and
a needle stick.
Some specialists keep
their colleagues informed of a patient's progress through letters and phone
calls. Others depend on the patients to relay information to the other
doctors involved in the their care. If you find that one of your doctors
seems to be unaware of recommendations that another doctor has made, bring
this to the doctor's attention immediately. It may be a simple matter of a
delay in the transcription and mailing of dictated letters or notes. By
keeping copies of your scan reports and laboratory tests, you can update any
of your doctors who are temporarily "out of the loop."
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97. My
doctor told me that my treatment is not working and that I should consider
hospice. If I choose hospice, isn't that just giving up?
Hospice services vary
in different communities, but in general, hospice allows patients to receive
care for the symptoms of their disease when treatment options to cure or
control the disease are unavailable or no longer effective. For example, a
woman who has a recurrent brain tumor has undergone surgery, radiation
therapy, and chemotherapy. During her last chemotherapy cycle she had
frequent complications requiring hospitalization. This particular patient
may not benefit from additional therapy because her quality of life has been
compromised by complications. If there are no further treatment alternatives
that are likely to be of benefit, or if all treatment options appear to be
equally toxic, this patient may be offered hospice.
Hospice services
provide care for patients in the home or hospital setting. Hospice nurses
work closely with doctors so that symptoms such as seizures, headache,
fever, shortness of breath, and pain are controlled with medications or
other interventions. Hospice services may be paid for by government programs
or by private insurance. Some communities have hospice services available
for indigent patients.
Do not think of
hospice services as giving up an opportunity for effective treatment.
Doctors typically do not refer their patients to hospice care if further
treatment is likely to succeed. Acceptance of this prognosis is an important
requirement for patients entering hospice.
Hospices commonly have
social workers, counselors, and chaplains available to help patients discuss
financial concerns and end-of-life decisions. Patients and hospice workers
often develop close friendships because of their frequent contact. This
relationship can be a great comfort to many patients. Hospice workers also
work with surviving family members following the death of the patient to
help them deal with the loss.
Remember that hospice
workers are trained to alleviate symptoms. They do not do anything to hasten
death. However, the use of intravenous fluids, intravenous antibiotics, and
artificial feedings is generally discouraged in terminally ill patients
because these measures do not ease suffering.
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98. I was
told that my tumor is rare and it has been difficult to find information
about it. How can I find out more about my tumor?
Trying to find
information about any kind of brain tumor can be a daunting task. The
Internet has simplified the process greatly. People who were diagnosed with
a brain tumor just ten or fifteen years ago did not have this valuable
resource available to them. Web resources, such as Yahoo, AltaVista, and
Google, offer easy-to-use search tools that will lead you to numerous Web
pages focusing specifically on brain tumors. Of course, you can always
consult your local library or the medical library at your local hospital or
university, but by far the fastest way to find information is via the
Internet.
When researching your
tumor, you must know the exact name of it. You can find the tumor name in
your pathology report. For example, it is not enough to know that you have a
pineal tumor. Your tumor may be a pineocytoma, a pineoblastoma, a germ cell
tumor, or another type. If your pathology report uses a modifier such as
"anaplastic," "malignant," or "metastatic," you must include these terms in
your search.
If you enter the term
"central neurocytoma" into the search engine at www.google.com, the site
retrieves 739 references. You can refine these search results by adding
other key words or phrases. In this example, adding "surgical resection" to
the search terms, and modifying the search results to include only Web pages
in English that have been updated in the past 6 months drops your search
results down to a more manageable 49 references.
Many of the Web pages
in your search results will be neuropathology, neurosurgery, or other
medical Web sites. However, there are patient resources also available.
Neurosurgery://On-Call is provided by the American Association of
Neurological Surgeons and Congress of Neurological Surgeons. This review of
brain tumors contains a paragraph describing the location of central
neurocytomas, the age range of patients, and an explanation of treatment
options.
Finding more detailed
information about central neurocytomas is also possible through medical
databases such as Medline or Cancerlit, but if you are interested in a broad
discussion of the treatment of central neurocytoma (surgical resection,
radiation therapy, and long term prognosis) you should consider limiting
your search to review articles. For most medical literature, only a short
summary of the article (the abstract) is available on line, but the entire
article can be obtained from a medical library.
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99. Why has
there been so little progress in fighting brain tumors?
Brain tumors are
relatively uncommon, especially when they are compared with lung cancer,
breast cancer, and prostate cancer. These "big three" cancers are
responsible for 44% of all cancers diagnosed in the United States. Brain
tumors constitute less than 2% of the total number of cancers diagnosed.
Because of effective screening, breast and prostate cancers are often
diagnosed at earlier stages, and less than 20% of patients die of their
disease. In contrast, 77% of brain tumor patients will die of their tumor or
complications related to their tumor. There are no effective screening
strategies for the common adult brain tumor, glioblastoma multiforme, and
even "early" diagnosis of a small, resectable tumor may not associated with
a favorable prognosis.
The many different
subtypes of brain tumors require different treatment strategies. Ideally,
new treatment approaches would be developed in a clinical trial that
monitors all patients for response to therapy and the toxicity of treatment.
However, only about 4% of all cancer patients are enrolled in clinical
trials. Even the most promising new therapy must be rigorously tested before
it can be offered to all patients, but if few patients participate in
clinical trials, new therapies cannot become the standard of care.
Assuming that a new
drug has been well studied in clinical trials, there are often other hurdles
that limit access to the drug. For example, drugs that have been
FDA-approved for one type of tumor may be considered off label for the
treatment of brain tumors, and some insurers will not cover the cost of the
drug in these cases. Patients who cannot find a way to support the high cost
of the drug lose out on a possible treatment option.
Brain tumor patients
also have traditionally had less exposure in the media. Celebrities who have
been diagnosed and treated for a brain tumor rarely make public statements
concerning the need for further research funding. Although some brain tumor
survivors have neurological deficits that disable them from employment,
thousands of others work full time, raise families, and contribute to their
communities. Despite these achievements, there has yet to be any national
recognition of the efforts of brain tumor survivors.
Brain tumor patients
and their families and friends can do much to promote public education about
brain tumors. Encouraging financial support for brain tumor research,
participating in national brain tumor advocacy groups, and keeping up with
brain tumor information by visiting Web sites such as
www.virtualtrials.com are all ways to further brain tumor research and
education.
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How to Survive
a Brain Tumor
1. Know your
enemy. The more you know about your enemy's strengths and weaknesses, the
better you can fight it.
2. Know your
strengths. Keep healthy and fit.
3. Know your
weaknesses. If there's something that you can improve, do it. If you can't
change it, accept it and move on.
4. Know your
allies. If you don't think your doctor is 100% dedicated to the battle, you
may need to find another one.
5. Know your
weapons. Some treatments for brain tumors sound pretty scary (and pretty
toxic), but if they work against the enemy, that's what you need.
6. Maintain
your arsenal. Don't run out of the medications you need. Don't let your
insurance lapse; if it does, look for as many different funding resources
you can.
7. Find some
comrades in arms. No one else really knows what it's like to be in the
trenches, and some of the best friends are made on the battlefield.
8. Take time
for rest and relaxation. You need it to keep fighting.
9. Remember
that an army moves on its stomach. If you don't get adequate nutrition,
you'll be defeated.
10. Look to
experienced leaders in your treatment team for guidance. Respect them, work
with them, and remember your common objective.
11. Check your
position from time to time. Those follow-up appointments, labs, and MRIs
keep the enemy under scrutiny.
12. Don't be
afraid to use whatever weapons are available. Unconventional weaponry (such
as clinical trials) can surprise the enemy.
13. Anticipate
occasional setbacks. Keep mentally prepared to engage more vigorously with
the enemy if necessary.
14. Don't ignore
warnings from your body. Fever, pain, and shortness of breath require
immediate attention!
15. Scout for
locations of refuge if you ever need one. Hospitals that are ill-equipped to
deal with your enemy aren't good places to be.
16. Keep the
folks back home informed about how the battle is going.
17. Be patient
with others who don't know the enemy as well as you do. They have other
battles to fight.
18. Kiss your
sweetheart as often as possible and always with the thought that it could be
the last.
19. Pray for
your comrades, your family, and yourself. Pray for you to have courage and
then act as if your prayer was already answered.
20. Remember
that the enemy can take your life, but not your spirit. Make sure that you
spread your spirit around so many places that the enemy can never destroy
it.
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100. Where can
I go for further information?
Many hospitals and
cancer centers have patient libraries and resource centers with booklets and
reading lists about specific topics. The National Cancer Institute and
National Institutes of Health publish a wide variety of books about clinical
trials, cancer diagnosis and treatment, and nutritional support for cancer
patients. Booklets are available free of charge by calling 1-800-4-CANCER
and can be viewed online at
www.cancer.gov.
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National Organizations for
Brain Tumor Patients
American Brain Tumor Association
2720 River Road, Suite
146
Des Plaines, Illinois
60018
847-827-9910
www.abta.org
Provides
information free of charge about brain tumors, and sponsors research grants
and regional “Town Hall Meetings.” The gray ribbon “brain tumor awareness”
lapel pin is available from the ABTA store.
National Brain Tumor Foundation
414
Thirteenth Street
Suite 700 Oakland, California 94612
510-839-9777
www.braintumor.org/
A non-profit
organization which sponsors several community Angel Adventures, which raise
funds for brain tumor research and provide an opportunity for brain tumor
patients and families to participate in a walk together.
The Brain Tumor Society
124 Watertown Street
Suite 3H
Watertown, MA
02472-2500
1-800-770-8287
www.tbts.org
A web site that
includes information about events and conferences, including teleconferences
and live web casts. An extensive book list about brain tumors and brain
tumor survivors is available by request and online.
Pediatric Brain Tumor Foundation of the U.S.
315 Ridgefield Court
Asheville, North
Carolina 28806
800-253-6530
www.pbtfus.org
Promotes public
awareness of pediatric brain tumors and raises money in support of adult and
pediatric brain tumor research.
Brain Tumor Foundation for Children, Inc.
1835 Savoy Drive,
Suite 316
Atlanta, Georgia 30341
770-458-5554
www.btfcgainc.org
A non-profit
organization to promote awareness and support research for children with
brain tumors.
Candlelighters Childhood Cancer Foundation
7910 Woodmont Avenue
Suite 460
Bethesda, Maryland
20814
800-366-2223
www.candlelighters.org
A resource for
families of children with cancer.
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Other Useful Resources and
Web Sites
National Center for Complementary and
Alternative Medicine
P.O. Box 8218
Silver Spring,
Maryland 20907
301-435-5042
www.nccam.nih.gov
This site contains
information about complementary and alternative medicine, including current
clinical trials using these methods.
American Cancer Society
1599 Clifton Road, NE
Atlanta, Georgia 30329
800-ACS-2345
www.CANCER.org
This is a web site that is easy to use and has
information on a wide variety of topics, including chemotherapy and
radiation therapy
Musella Foundation for Brain Tumor Research and
Information
http://www.virtualtrials.com/
This is a fantastic
resource for anyone newly diagnosed with a brain tumor, anyone starting
chemotherapy or radiation therapy, or someone who’s looking for a clinical
trial. It is well organized, regularly updated and may be the only brain
tumor resource you’ll ever need. It also has links to many other useful
sites.
http://www.NeedyMeds.com/
If you can’t afford
your medication, this site can give you some useful resources, sometimes
free from the manufacturer.
Oncolink
www.Oncolink.com
This site sponsored
by the Abramson Cancer Center of the University of Pennsylvania, contains
information on a wide variety of cancer topics including clinical trials.
Vital Options International
www.vitaloptions.org
An international
organization for young adults with cancer, hosting a weekly syndicated radio
show and web cast on a variety of topics.
Cancercare
www.cancercare.org
Cancercare is a
nonprofit organization providing free professional help to patients with all
types of cancers. This web site includes information for financial
assistance, support groups, cancer and sexuality, and many other topics.
CancerSource.com
www.CancerSource.com
This is a
well-illustrated and comprehensive resource for cancer patients and families
about diagnosis and treatment options, including more advanced topics for
nursing and medical professionals. This site allows you to receive a
personalized e-mail newsletter. It is partnered with Jones and Bartlett
Publishers, allowing purchase of books on-line.
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Selected United States Cancer Centers with
Brain Tumor Programs
Children’s National Medical Center
Washington,
D.C.
202-884-2120
www.cnmc.org
University of Alabama at Birmingham
www.braintumor.uab.edu
Cedars-Sinai Maxine Dunitz Neurosurgical
Institute
Los Angeles,
California
310-423-7900
www.cedars-sinai.edu/mdsni
UCLA Medical Center
Los Angeles,
California
310-825-5074
www.neurooncology.ucla.edu
University of Southern California
Los Angeles,
California
323-226-7421
www.usc.edu/medicine/neurosurgery
University of California at San Francisco
San Francisco,
California
415-353-2966
www.ucsf.edu.nabtc.org
University of Colorado Health Sciences Center
Aurora, Colorado
720-848-0116
www.uch.uchs.edu/uccc/patient/neuroonc.html
H. Lee Moffitt Cancer Center and Research
Institute
Tampa, Florida
813-632-1730
www.moffitt.usf.efu/clinical/nonc/index.htm
Brigham & Women’s Hospital
Boston, Massachusetts
617-732-6810
www.boston-neurosurg.org
Massachusetts General Hospital
Boston, Massachusetts
617-726-7851
www.brain.mgh.harvard.edu
Johns Hopkins Hospital
Baltimore, Maryland
410-955-0703
www.nabtt.org/johns.html
National Cancer Institute
Bethesda, Maryland
301-402-6298
www.dcs.nci.nih.gov/trials
Henry Ford Hospital
Detroit, Michigan
313-916-1340
www.nabtt.org/henry.html
University of North Carolina
Chapel Hill,
North Carolina
919-966-1374
Duke University Medical Center
Durham, North Carolina
919-684-5301
www.cancer.duke.edu/btc
Dartmouth-Hitchcock Medical Center
Lebanon, New Hampshire
603-650-6312
www.dartmouth.edu/dms/nccc/brain.htm
Memorial Sloan-Kettering Cancer Center
New York, New York
800-525-2225
www.mskcc.org
New York Presbyterian Hospital
Weill Cornell Medical Center
New York, New York
212-746-2438
Children’s Hospital of Philadelphia
Philadelphia,
Pennsylvania
215-590-3129
Children’s Hospital of Pittsburgh
Pittsburgh,
Pennsylvania
412-692-5881
www.neurosurgery.pitt.edu
St. Jude Children’s Research Hospital
Memphis, Tennessee
901-495-3604
www.stjude.org/brain
Presbyterian Hospital of Dallas
Dallas, Texas
214-345-4200
www.phscare.org
M.D. Anderson Cancer Center
Houston, Texas
713-794-1285
www.mdanderson.org
University of Utah
Salt Lake
City, Utah
801-581-6908
University of Wisconsin Medical School
Madison, Wisconsin
608-263-5009
www.humonc.wisc.edu
Fox Chase Cancer Center
Philadelphia,
Pennsylvania
215-717-3005
www.neuro-oncology.org
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Other Helpful Organizations
American Institute
for Cancer Research
1759 R Street NW
Washington, DC
20009
800-843-8114
202-328-7744
www.aicr.org
Americans with
Disabilities Act
U.S. Dept. of
Justice
950 Pennsylvania
Avenue
Washington, DC
20530
800-514-0301
www.usdoj.gov/crt/ada/adahom1.htm
National Coalition for Cancer Survivorship
1010 Wayne Avenue
Suite 505
Silver Spring, MD
20910
877-NCCSYES
(622-7937)
www.cansearch.org
Acts as a
clearinghouse and helps cancer survivors, their families and friends find
local support groups, learn health insurance options and prevent employment
bias.
National Family
Caregivers Association
10400 Connecticut
Avenue, #500
Kensington, MD
20895
800-896-3650
www.nfcacares.org
Provides education,
support, respite care and advocacy for caregivers. Their toll-free
information line provides referrals to caregiver support groups as well as
information on how to start a caregivers support group.
National Hospice
Organization
800-658-8898
www.nho.org
Promotes quality
care for the terminally ill and their families. Their helpline refers
callers to local hospices and they can also inform callers whether a
facility is licensed and Medicare certified.
Patient Advocate
Foundation
739 Thimble Shoals
Boulevard
Suite 704
Newport News, VA
23606
800-532-5274
www.patientadvocate.org
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