Is there is anyone here with first hand experience of treatments offered and their effectiveness?
Any one with experience of brain mets? - OPA Palliative Ca...
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Any one with experience of brain mets?
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JohninKent
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I have always been confused by the long names that various types of brain tumours have.
I know that there is sometimes some discussion on the Macmillan site:
community.macmillan.org.uk/...
And do try our helpline on 0121 704 9860 or the Macmillan helpline 0808 808 0000
Thanks, Alan. I have been looking at the group, Brain, secondary cancer on macmillan. Though it is in my brain it is still oesophageal cancer. I thought I post here as well because if nobody actually posts it will never take off. I have found out most of the info I need about the treatments. My concern is that the MDT is meeting tomorrow and I am worried about what my options are if they don't come to the decision I am hoping for. I think I meet all the criteria but until I hear it is a worry.
John
I am pleased to say that they are going to do the treatment that I want.
Dear John
That is good news.
I contacted Cancer 52, an umbrella group for less common cancers, and they advised that 0808 800 0004 might be worth a ring - the information line for the Brain Tumour charity. thebraintumourcharity.org
All best wishes
Alan
The Brain Tumour Charity have also passed on to me some information on Stereotactic Radiotherapy that you may be interested in. This type of treatment is commonly used with brain metastasise as it does not radiate the whole brain with a large does of radiation and can therefore be used on more than one tumour. I have copied and pasted this from a .pdf file so please forgive the formatting. I do not know whether this will be relevant to you or not.
Stereotactic radiotherapy or SRT is a type of
radiation treatment - it delivers radiation
beams in a highly focused way to the site of
the tumour. Targeting the tumour in this way
limits the intensity of radiation delivered to
healthy tissue and aims to give fewer side
effects than conventional radiotherapy.
It is important to realise, however, that SRT
delivers a low level of radiation to more of
the brain. There are two main types of SRT:
stereotactic radiosurgery (SRS), where all
the treatment is given in one session, and
fractionated stereotactic radiotherapy
(FSRT), where the treatment is given over
multiple sessions.
How does SRT work?
Stereotactic Radiotherapy differs from conventional
radiotherapy only in the way it ‘localises’ the tumour - it does so
by ‘stereotaxy’. Whilst conventional treatment uses marks on
the patient’s skin or radiotherapy mask, in stereotaxy, a separate
frame (co-ordinate structure) is fixed rigidly to the patient and
this is used to locate the tumour. The box is fixed in one of two
ways: either it is firmly fixed to the skull (in which case a local
anaesthetic is given) or it is fixed to a face mask. Either way,
SRT will not be painful.
The advantage of SRT is it a more accurate treatment.
Treatment is delivered from many different angles around the
head aimed at the tumour. Where all the points meet and
overlap at the site of the tumour, they create a high dose of
radiation, and therefore destroy the tumour cells. Since
stereotactic treatment is more accurate than conventional
radiotherapy, higher doses can be given or fewer treatments
may be necessary.
Often only one high dose of treatment is needed - this is called
Stereotactic Radiosurgery (SRS). Conventional radiotherapy,
split over several sessions, can also be given using the same
technology. This is called fractionated Stereotactic
Radiotherapy (FRST).
The planning stages
Fractionated Stereotactic Radiotherapy (FRST)
It is very important that the radiation beams are aimed precisely
so that they target the tumour cells, rather than healthy cells.
To achieve this, various specialists (including radiographers,
radiotherapy physicists and technologists) work together as part
of a planning team to plan your treatment. To help keep you still
and in position during SRT, you will wear a mask that is tailormade
to fit your individual head-shape (see fact sheet on
Radiotherapy for more detail on the making of the mask).
Wearing the mask, you will have an MRI or CT scan (see fact sheet
on Scans for more information), which will help the specialists plan
your treatment. The specialists will work out from the scans
exactly where the tumour is and how to aim the beams. You will
often be asked to return to the planning team to have the
positioning checked before proceeding to treatment.
Stereotactic Radiosurgery (SRS)
Whilst some departments will use a mask as described above,
others will use surgery (known as invasive fixation) for SRS.
This comprises a series of four pins that are screwed a small
distance into the skin under local anaesthetic to hold the
stereotactic frame. They remain in place throughout the
scanning, planning and treatment delivery phases and are
removed at the end of the day. The planning is otherwise
much as for FRST.
The procedure
FRST
During the FSRT treatment itself, you will need to wear your
mask and be positioned on a treatment table. The localiser
box (which helps to locate the tumour) is attached to the mask
and the treatment is set up. This usually takes just a few
minutes, but can take longer if the treatment is complex.
Before the treatment begins, medical staff will leave the room,
but they will be able to see and hear you and you will be able
to hear them.
The treatment is given by a machine called a linear accelerator.
This gives numerous beams of radiation from different angles.
The beams all intersect (cross over) at the tumour, where they
create a high dose of radiation and destroy the tumour cells.
SRS
Treatment with Stereotactic Radiosurgery is much the same
as FSRT except that the treatment is given in just one session.
This is likely to take longer and may even take up to 4 hours
depending on the technology used (see overleaf).
After treatment
It is very common to feel tired for a few days after SRT. Some
people experience feelings of nausea, dizziness or faintness
directly afterwards, however, this is very uncommon. You will
be allowed to go straight home after treatment, but should
arrange transport so that you do not have to drive.
JohninKent in reply to
Thanks for this Alan. It is stereotactic radio therapy I am going to have. I was worried that as I have active cancer elsewhere they may have only considered WBRT which I did not want. I am meeting with the neuro-oncology team for the first time on Monday so I should find out soon exactly what the treatment will be and when. I was very worried when I found it had spread but I am now more relaxed about the future. Thanks again for posting the information.
John
Dear John
I just realised that there is a second page!:
Other types of SRS/SRT
The information in this fact sheet focuses on Linac based
delivery of SRT. Linac means that the treatment is delivered
using equipment called a linear accelerator. Other
technologies that work in similar ways are available.
These include:
Gamma Knife (Stereotactic Radiosurgery)
Rather than being an actual, physical knife, Gamma Knife is
named after the machine that administers it. Gamma Knife
is a type of SRT that uses gamma radiation to target and treat
the tumour. It normally offers only Radiosurgery. The
machine looks quite different to a linear accelerator but
the preparation, delivery and outcome are similar to SRS
on a linear accelerator.
Cyberknife (Stereotactic Radiosurgery)
Cyberknife is also named after the machine it uses. It has a
robotic arm that tracks the location of the tumour and any
movements the patient makes and adjusts its positioning
before delivering beams of radiotherapy. Treatment usually
takes around 30-90 minutes and requires 1-5 sessions.
What’s the difference between
Stereotactic Radiotherapy
and Radiosurgery?
Stereotactic Radiotherapy and Radiosurgery are both painless,
non-invasive techniques (i.e. don’t use surgery) that use
radiation beams targeted at the tumour in a very precise way.
Stereotactic Radiotherapy may deliver the treatment over a
series of sessions (called ‘fractions’), whereas Radiosurgery
tends to deliver it in a single session. It is important to realise
that Radiosurgery is only appropriate for certain types and
sizes (i.e. smaller ones) of brain tumour. Whilst FRST is
applicable to a wider range of tumours, there are, again,
limitations to the usefulness of this technique. Your doctor
will advise you about this.
What side effects can I expect?
It is common to feel tired after treatment. You may also feel
sick, dizzy or faint directly after treatment. These side effects
are generally short-lived. If you experience side effects that
you are concerned about, speak to your doctor.
Why is the word ‘knife’ used?
Despite the word ‘knife’ appearing in the names ‘Gamma Knife’
and ‘Cyberknife’ there is no actual knife used. The name was
chosen because the neurosurgeon who invented it, Prof. Lars
Leskell, felt that the treatment allows such precision, similar to
a surgeon’s scalpel.
Will the treatment hurt?
No, both Stereotactic Radiotherapy and Radiosurgery are
painless. There is no need for a general anaesthetic. You may,
however, need to wear the localiser frame for several hours,
which can be tiring.
How many sessions of treatment will
I need to have?
This depends on your treatment plan, which will be tailored to
your individual needs. Typically though, SRT can take around
6-25 treatment sessions or doses, whereas Radiosurgery is
given in a single session.
What are the benefits of SRT
and Radiosurgery?
SRT and Radiosurgery deliver radiotherapy beams from
various angles in a very precise manner targeted at the
tumour cells,. Where they overlap at the site of the tumour,
the dose of radiation is high and destroys the tumour cells.
As the radiation is only high enough to destroy cells where all
the beams cross, surrounding healthy tissue remains relatively
unaffected. This means that people generally experience
fewer side effects with SRT and Radiosurgery compared to
conventional radiotherapy.
Is SRT suitable for all types of
brain tumour?
While SRT is suitable for a range of different brain tumours, it
is not suitable for them all as precise localisation in this way
may carry no advantage. Your oncologist will be able to talk to
you about SRT and whether it is a suitable option for you.
Hi john, my brother had stage 4 oesophagus cancer which then went secondary to his brain. He was perscribed dexamethasone steroids which controls the headaches...he had a weeks treatment of radiotherapy which he managed quite well..Unfortunately my brother's cancer went to his blood stream, then bones and he ended up with clots on both lungs
. My brother sadly passed away last month aged 49.. I seen your post and felt I had to ask how you were getting on ?
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