Beloop bij een hersentumor - Walter Taal
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Beloop bij een hersentumor - Walter Taal
8 november 2019
Walter Taal
5B Palliative treatment
Anti-tumor treatment no longer possible
In case of a glioblastoma, almost always a phase is reached where
anti-tumor treatment is no longer possible. This period is also called
the ‘palliative phase’.
Symptoms during the palliative phase
In this phase the patient could experience (an increase in) symptoms
as an (in)direct result of the brain tumor. It is good to know that
treating these symptoms is possible.
You can read more about this below (5B).
Please note! A doctor can never predict how long someone
has to live.
Treatment of symptoms
As soon as anti-tumor treatment is no longer possible, the phase of
symptomatic or palliative treatment starts.
Letter for patients and proxies
At the bottom of this page is a link to a letter containing more information
about the end-of-life phase for patients with a brain tumor and their close
ones. This is information about the expected course of the final phase of
life and the care that can be provided in this phase. The letter also
provides advice and references in support of loved ones (and care givers).
More clarity gives less uncertainty and therefore a better quality of life.
Save the letter below however for later, if you are not up to it now. You
can also have the letter read by someone else first.
This is the end of this tool.
For questions or comments, contact us:
Phone: 06-22545185 of 06-33342008 (nurse practioners)
Email: hersentumorpoli@erasmusmc.nl
Click here for the letter
5A Symptoms in the
end-of-life phase
4B Possible 2nd and following
anti-tumor treatment
Tumor growth on the MRI scan
Since regular MRI scans are made, tumor growth is likely to be noticed
via imaging before patients experience (an increase in) symptoms.
Symptoms
Usually, the tumor grows back at the same location as before. Therefore,
it is likely that any symptoms patients might experience comply with
earlier symptoms (see 1A). Contact us in case you start experiencing
these symptoms again.
Epilepsy
(Recurring) epileptic seizures are not always a sign of tumor growth.
Many factors can cause epilepsy, such as stress and a lack of sleep.
An increased frequency of seizures is always a reason to contact your
physician.
Please note!
Not everyone with a glioblastoma experiences epilepsy.
Effectiveness of additional treatment
Treatments against the tumor will become less effective. The tumor
becomes more resistant, meaning it becomes less sensitive to treatments.
Side effects of additional treatment
Side effects can play a more prominent role, for example because of
deterioration of the patient’s condition.
Balance
The assessment about the feasibility of additional treatment is based on
the balance between the chance of success and the
chance of adverse effects. Besides prolonging the
life span, the quality of life plays an important role in
this decision. If the chance of success is small and
the chance of side effects if big, then another course
of treatment is not advised.
Decision
Every patient is discussed in a multidisciplinary meeting. This means that
different specialists (such as the neurologist, radiologist, radiotherapist,
oncologist and neurosurgeon) will attend this meeting. After the patient
has been adequately informed about the different options, he/she will
make the final decision together with the treating physician. Treatment
focused on symptoms (see 5B) is also a choice.
Side effects
Effectiveness
4A Symptoms in case of recurrent
growth of the tumor
More information ...
More information (only in Dutch)...
Personalized treatment
There is no standard treatment for a relapsed glioblastoma. The options
depend on multiple factors: your physical and psychological condition,
the location and size of the tumor and the (timing) of earlier treatments.
Additional to prolonging the life span, the treatment also focusses on the
quality of life. The patient makes the final decision about his/her
treatment, after he/she has been fully informed about the treatment
options. Choosing to treat only the symptoms is also a possibility.
Operation
Another operation has to be technically possible and reasonable. An
operation without additional chemotherapy and/or radiotherapy is usually
not feasible.
Radiotherapy
Generally, a second course of radiotherapy is not possible, unless the
first radiation was long ago or if the tumor has recurred at a different
location.
Chemotherapy
For some patients, another course of chemotherapy is useful.
for experimental treatments given in a study context.Talk to
your physician about the possibilities suitable for you.
Follow up
Click here
3B (period after) finishing first
anti-tumor treatment
Finishing chemotherapy
If there is no tumor growth and the patient does not experience
unacceptable side effects, 6 additional courses of chemotherapy
(temozolomide) will be given after finishing radiotherapy.
Follow-up
After finishing chemotherapy, you will remain in follow-up at the
outpatient clinic. The follow-up consists of regular (every 3-6 months)
MRI scans of the brain. As long as the tumor does not grow, no further
anti-tumor therapy is necessary.
No one can predict how long this phase lasts.
Alternative medicine
Complementary and alternative medicine (CAM) is the term for medical
products and practices that are not part of standard medical care.
However, alternative medicine can affect the regular treatment.
Therefore, discuss alternative medicine with your treating physician.
ATTENTION! There are commercial companies (especially abroad) that
make a lot of money from non-scientifically proven treatments.
More information ...
Please note! Not everyone experiences an early increase!
Symptoms in case of early increase
During or directly after radiotherapy (and simultaneous chemotherapy)
some patients experience a (temporary) increase in symptoms. This
can be the result of increased swelling of the brain tissue or the tumor,
caused by radiotherapy.
This is also known as pseudoprogression.
MRI scan in case of pseudoprogression
4 weeks after finishing radiotherapy, the first MRI scan is made. On this
first MRI scan, increased swelling can look like tumor growth. At this
time, it is unclear whether the tumor has grown or if these are the effects
of radiotherapy.
Follow-up early increase
In most cases, the treatment is continued. If your symptoms do not
increase any further and the MRI scan in the following months does not
show more growth (or even regression) of the tumor, then tumor growth
is certainly not the case.
Please note! Not everyone experiences early increase!
Continuation of chemotherapy during (pseudo)progression
In case of an increase in symptoms and/or tumor growth on the MRI
scan (4 weeks after finishing radiotherapy), treatment with additional
chemotherapy will generally be continued.
Dexamethasone for early increase
Sometimes, an increase in the dose of dexamethasone is necessary
to suppress the symptoms resulting from the increased swelling.
Second operation for early increase?
Very occasionally, a second operation is necessary. However, this has
to be technically feasible.
Use mouse or keyboard
2A (Temporary) early increase
2B Treatment during (temporary)
early increase
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Symptoms and scan
Treatment
A
B
1B First anti-tumor treatment
The medicine, dexamethasone
When you have many complaints, the first step is often prescribing
dexamethasone. The brain tumor may cause an inflammatory reaction.
Dexamethasone is an anti-inflammatory medicine and therefore reduces
the swelling, which offers more space to the repressed brain tissue.
The letter at the end of this overview (5B) provides more information
about dexamethasone.
Operation
The next step of treatment consists of an operation. Besides offering
certainty about the diagnosis, the aim of an operation is to debulk the
tumor, and to therefore reduce symptoms. Sometimes, an operation is
impossible because too much healthy brain tissue will be damaged. In
that case, some tissue is removed (a biopsy) for examination during the
operation.
Resuscitation
Before the operation, your preferences on resuscitation will be discussed.
Treatment after the operation
In case of a glioblastoma, complete removal of the tumor is impossible.
Therefore, additional treatment with radiotherapy and/or chemotherapy
(temozolomide) is necessary.
Your situation
This information is provided to you by your health care professional(s),
because you have been diagnosed with a malignant brain tumor: a
glioblastoma. You have probably already undergone surgery. This
information addresses the expected course of disease and treatment
for this tumor.
More clarity results in less uncertainty and therefore a better quality of
life. If you have any questions, discuss them with your relatives and
your treating physician.
Please note!
This document addresses mainly addresses the physical
effects and the treatment of a glioblastoma. For the emotional and
psychological effects we refer to:
www.abta.org/about-brain-tumors/living-with-a-brain-tumor/)
First symptoms and MRI scan
The first symptoms that you have depend on the location of the brain
tumor. Epileptic seizures, forgetfulness or character change can also
be the first symptoms. An MRI scan provides a lot of information, but
the diagnosis can only be certain after an operation.
Use mouse or keyboard
1A First symptoms and scan
Use mouse or keyboard
More information ...
More information ...
More information ...
More information (in Dutch only) ...
More information ...
Tumor size
Time
3C An interrupted line,
because the time until progression
is not predictable
4C An interrupted line,
because the time until progression
is not predictable
Size of the tumor, plotted versus time
The expected course of disease for a brain tumor patient
Use the arrow keys or mouse to click on the
Made by: Dr. W. Taal
Translation: E. van Diest
Tumor size
Time
Symptoms and scan
Treatment
A
B
3C An interrupted line,
because the time until progression
is not predictable
4C An interrupted line,
because the time until progression
is not predictable
The expected course of disease for a brain tumor patient
Made by: Dr. W. Taal
Translation: E. van Diest
Size of the tumor, plotted versus time
1B First anti-tumor treatment
4B Possible 2nd and following
anti-tumor treatment
5B Palliative treatment
1A First symptoms and scan
4A Symptoms in case of recurrent
growth of the tumor
5A Symptoms in the
end-of-life phase
2A (Temporary) early increase
Use the arrow keys or mouse to click on the
The expected course of disease
for patients with a brain tumor
The expected course of disease for patients with a brain tumor
The expected course of disease for patients with a brain tumor
The expected course of disease for patients with a brain tumor
Use the arrow keys (on the keyboard) or click on the screen
Dr. W. Taal
More clarity = less uncertainty = a better quality of life
It is possible that you do not feel ready for certain information.
In that case, save this information for later.
You could let someone else read this information first.
For questions or comments, contact us:
Phone number: 06-22545185 of 06-33342008 (nurse practitioners)
Email: hersentumorpoli@erasmusmc.nl
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