BRAIN TUMOURS
Last updated August 2024
By Dr Adam Wells,
Neurosurgeon in Adelaide, South Australia
Table of contents
Introduction
I've just been diagnosed with a brain tumour. What is the very first thing I should do?
Can you tell me more about brain tumours? Are they common? Do they spread?
What are the steps involved in treating brain tumours?
How do I find a good surgeon? And how can I get a second opinion?
What happens in hospital around the time of my operation?
What are the risks of brain tumour surgery?
What can I expect after I have gone home? Can I drive a car? Can I go to work?
What other treatment may I need for my brain tumour? What is radiation therapy and chemotherapy?
Will I need follow up?
Do brain tumours go into remission, and can they come back? What happens if my tumour comes back?
Am I going to die from my brain tumour?
Are there any other online patient resources where I can learn more about brain tumours?
Is there are research happening into brain tumour treatment right now?
More information
Introduction
The following guide has been produced with the aim to provide practical advice for people looking for more information about what happens after the diagnosis of a brain tumour. This is based predominantly on my own experiences as a Neurosurgeon treating people with brain tumours here in Adelaide, South Australia. I have aimed to focus specifically on the surgical and medical steps involved in the patient and family journey, but of course there are many additional psychological, spiritual and emotional aspects. This information is for educational purposes only; you should not make medical decisions based on this guide, and I encourage you to speak with your General Practitioner or specialist.
Being diagnosed with a brain tumour can produce a lot of emotions such as fear, panic, or even anger. Sometimes the diagnosis can come completely out of the blue and can be a real shock. It is natural to feel frightened to begin with, however you can empower yourself with the right knowledge about what to and how and when to do it. A brain tumour diagnosis is the beginning of a journey which will be unique for different individuals; there will be many ups and downs along the way, but if you have an experienced team of health professionals you can be guided through the rough patches and be provided with the best possible outcome. I hope this introductory guide will help you and your loved ones better understand what to expect with your journey.
I’ve just been diagnosed with a brain tumour. What is the very first thing I should do?
The first thing is very important: don’t panic. A brain tumour diagnosis can be scary, but don’t assume that it will result in a fatal outcome; treatment for brain tumours has come a very long way and continues to improve year by year, even for aggressive tumours.
The next thing to do is to connect with a team of doctors who are experienced with managing brain tumours. These generally consist of a Neurosurgeon (Brain surgeon), a Radiation Oncologist (Radiation therapy specialist) and a Medical Oncologist (Chemotherapy specialist). Of these, the Neurosurgeon is most important in the initial stages. If you have been diagnosed with a brain tumour and need an urgent appointment to see a Neurosurgeon please contact us on (08) 7127 2359. At your first consultation your Neurosurgeon will take a detailed history and perform a physical examination, and then discuss your scan results with you. A Neurosurgeon is experienced in looking at brain scans and can advise you whether you may need an operation or not, as well as what type of operation is most appropriate for you. Some brain tumours are benign and may not need surgery at all, whereas others can behave very aggressively and should be treated without delay. You will need a referral before you can see a Neurosurgeon, and your General Practitioner can arrange this.
If you have an operation and the results of your tumour confirm that it is of a type that requires further treatment your Neurosurgeon will refer you to both a Radiation Oncologist and a Medical Oncologist; this is called a multi-disciplinary approach, and is considered gold standard level of care for brain tumour treatment. The whole process, from diagnosis to surgery and completion of radiation therapy (if required) can take around 2 months, and chemotherapy generally continues for around 12 months but can continue sometimes even longer.
Can you tell me more about brain tumours? Are they common? Do they spread?
Brain tumours are very common; almost 4000 Australians will be diagnosed with a new brain tumour every year, and this rate is growing. There are many different types of brain tumours and with different grades of aggressiveness, and their treatment and prognosis can differ quite significantly. Very broadly we classify brain tumours as either primary or secondary, with primary brain tumours originating from the cells of the brain itself, and secondary tumours (metastases) originating from a tumour in another body organ such as lung or bowel and spreading by the blood stream into the brain. By definition, secondary brain tumours are aggressive and meet criteria to be called “stage 4” cancer, whereas primary brain tumours can vary in their aggressiveness from benign (World Health Organisation Grade 2), semi-malignant (WHO Grade 3) and malignant (WHO Grade 4, also known as Glioblastoma Multiforme, or “GBM” for short). Unlike secondary brain tumours, primary brain tumours do not spread around the rest of the body outside of the central nervous system however they can sometimes spread to the spinal cord.
There are other types of brain tumours that arise not from the brain tissue itself but from the supporting structures of the brain or the nerves coming from the brainstem. The most common of these tumours is called a Meningioma, which is a tumour from the lining or ‘skin’ of the brain called the meninges. Meningiomas are extremely common and can vary in aggressiveness like other primary brain tumours, however most meningiomas are benign (Grade 2). A large number of Meningiomas are very small and grow quite slowly if at all, and for patients with this type of tumour it may be appropriate to simply keep a watch on it with periodic scans. For larger Meningiomas, those that demonstrate rapid growth or those that are causing symptoms such as headaches, surgery is generally appropriate and in many cases provides a cure without the need for any further treatment.
In most cases your initial scans will be able to determine reasonably accurately what type of tumour you have, but in some instances the final diagnosis may be in doubt until the tumour has been removed and tissue has been analysed in a laboratory under a microscope. In that instance your surgeon will provide follow up with your results once they are available and make appropriate referrals for any further treatment required. Further information can be obtained about the genetic profile of individual tumours and this can influence response to chemotherapy and radiation therapy, your oncologist can discuss these results with you.
What are the steps involved in treating brain tumours?
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The first step is diagnosis. A brain tumour diagnosis is generally made with a brain scan, usually a CT scan initially and followed by an MRI scan which provides much more detail about the brain and the tumour than a CT scan does. Most people have symptoms that prompt their GP to order a CT scan, such as headaches, behaviour change, limb weakness, speech disturbance, or even seizures.
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Following diagnosis you will need a referral to see a Neurosurgeon. Once the diagnosis of a brain tumour has been made your GP will refer you to a Neurosurgeon, or sometimes a patient will be instructed to present to their local hospital Emergency Department. This is considered a high priority referral, and should not be delayed; if you have been diagnosed with a brain tumour and need an urgent appointment to see a Neurosurgeon please contact us on (08) 7127 2359.
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Next you will have your initial consultation. Your Neurosurgeon will take a history, perform a physical examination and go through your scan results with you. They will then explain if you need surgery or not and also what type of surgery is appropriate, taking into consideration risks specific to your scenario including the anatomical location where your tumour is.
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Surgery is arranged without delay. You will be admitted to hospital and have a planning MRI scan the day before your operation. You must fast for at least 6 hours before surgery, and all blood thinning medications need to be discontinued for up to a week prior. After surgery you will be taken to a Critical Care Unit for observation. You will most likely feel exhausted and sometimes very nauseous but with surprisingly little pain.
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You will spend up to a week in hospital recovering from surgery. You will have an MRI brain scan the day after your surgery. Physiotherapists will help you gently mobilise over the coming days. After you have recovered you will be discharged home, usually around 3-5 days after surgery but sometimes up to a week. Most surgery patients are prescribed a short course of the oral steroid medication Dexamethasone to help with brain swelling and this is gradually weaned after the operation. You may also be prescribed a medication to reduce the risk of you having a seizure, this is called an anticonvulsant.
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When you are ready you will be discharged home. You should take things quite easy for the first few weeks, including no work or study. Your sutures are dissolvable and will fall out by themselves as your wound heals. You cannot drive a motor vehicle after brain tumour surgery for a period of time of at least 3 months but potentially up to a year, often depending on whether or not you have had a seizure or black out. If you feel well enough you may go back to work or study after your initial rest period. Once your results are available your surgeon will contact you to explain them and to advise necessary next steps.
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If appropriate your surgeon will refer you to an oncology service. If your tumour is unfortunately of an aggressive type then you will almost certainly benefit from additional therapy, including chemotherapy and radiation therapy. In most instances chemotherapy can be administered as a tablet and can be taken at home without the need for hospitalisation, however radiation therapy must be performed in a specialist setting and treatment generally occurs daily for between 2 and 6 weeks. Your Neurosurgeon will refer you to both oncology specialists as part of the multidisciplinary approach to your care.
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You will need ongoing follow up. Almost all resected brain tumours require follow up, with face-to-face consultations and MRI scans. The frequency and duration of follow up varies between patients and tumour types, however as a rule of thumb it would be reasonable to perform 3-monthly scans for the first year after surgery, and assuming no concerning features identified on the MRI scan performed 12 months after surgery the interval between these scans can be stretched out. Your multidisciplinary team will advise on the best follow up plan for your individual scenario.
How do I find a good surgeon? And how can I get a second opinion?
Finding a surgeon that you are comfortable with can sometimes be difficult but doesn’t need to be. Most if not all consultant Neurosurgeons in Australia that hold unconditional qualifications as Fellows of the Royal Australasian College of Surgeons (FRACS) can perform brain tumour surgery. At a minimum your surgeon should be experienced in, and comfortable with, treating your tumour type, and should be part of a multi-disciplinary neuro-oncology team to provide you with the best possible care and outcome.
Some options in finding a Neurosurgeon include:
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Ask your GP. It is highly likely that your GP knows of a reputable Neurosurgeon and can refer you to one.
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Use the Royal Australasian College of Surgeons online ‘Find a Surgeon’ tool.
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Use the Neurosurgical Society of Australasia's 'Find a Surgeon' tool.
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Search for a local surgeon on Google with the search term “Neurosurgeon near (city)” or "Neurosurgeon near me".
Remember however, if you find your own Neurosurgeon without the help of your GP you will still need a doctor to write a referral for you before you can see your chosen surgeon.
The relationship you have with your surgeon will last a long time, so you should be comfortable with your choice. No two Neurosurgeons are the same and they all have different qualities, so make sure you are happy and that your surgeon meets your needs and expectations. You can also ask for a second opinion: it’s your body, it is always your choice. You might feel embarrassed about asking your surgeon for a second opinion, but please don't be! Your surgeon is a professional and will not get upset or take it personally if you ask about this. Your surgeon will likely also know other surgeons personally and may be able to make a suggestion to you, or even make the referral for you.
Of course, you may feel uncomfortable about asking your surgeon directly, which is completely understandable. In that instance you may wish to do your own research, such as using some of the methods mentioned above. You can also approach various online support group services, and I have listed a few relevant to South Australia below. If you have already had brain tumour surgery you should make this clear to your new surgeon, as well as any other treatment you may have had such as radiation therapy, and who your treating doctors were; this provides transparency and will ultimately improve your outcome. Sometimes more surgery is appropriate and sometimes it is not, and different surgeons may even provide different opinions about this. Personally, if I see a new patient who is dissatisfied with the advice provided by another surgeon I try and provide very objective advice taking in all the facts, and unbiased by the opinion of any other surgeons involved. What I find most helpful however is determining what a patient's goals and needs are, and how best I can meet these in my role as your Neurosurgeon. Many times the advice and management strategy I provide is similar or identical to that of the primary surgeon. You should not feel pressured at all to commit to treatment with any surgeon in particular; in fact many times after I have provided a second opinion a patient will return to their original surgeon to have their operation performed. Again, we are medical professionals, we do not take this personally! Our goals as surgeons is to provide the best possible outcome for our patients. We do not let our egos get in the way of this!
One final comment on second opinions. In some instances a patient may have had a brain scan following which their surgeon says there is no further treatment that they can offer. This can be a very emotional thing to hear. Asking your surgeon to discuss your case at a multi-disciplinary team meeting is a very reasonable thing to do, and there should be other surgeons present at this meeting who can provide opinions about whether any further surgery is appropriate or not. The outcome of a multi-disciplinary team meeting should be fed back to you. Finally, if you would like a second opinion about your tumour and are based in South Australia I would be happy to take a look at your case and your scans; please contact us with your relevant details via wells.admin@spine.com.au or call us on (08) 7127 2359 and we will get back to you as soon as possible.
What happens in hospital around the time of my operation?
The following description applies to the patient experience I provide at St Andrew’s Private Hospital on South Terrace in Adelaide, South Australia, but should be similar to the patient experience around the rest of Australia and many parts of the world.
Patients are generally admitted to hospital on the day before their planned surgery. Your surgeon and your anaesthetist will come and see you in your hospital room and talk with you and your family. If surgical consent has not yet been taken this is an appropriate time to do it, in which the risks of the surgery are explained in detail. Blood is taken for a pre-operative test, checking particularly for markers of bleeding and coagulation. An MRI brain scan is performed: this is a very important scan and is used by the surgeon to plan the operation and also to perform intra-operative navigation (more on navigation below). You will be instructed not to eat or drink anything after midnight; this is very important to keep your stomach empty, which makes placing the anaesthetic breathing tube much safer.
On the morning of your surgery you will put on a hospital gown and be taken to the operating theatre suites where your identity bracelet will be checked. Your surgeon and your anaesthetist will see you in the operating theatres holding bay area, and then you are wheeled into the operating theatre on your hospital bed. The theatre will already be prepared for your arrival: personnel in theatre include the surgeon and surgical assistant (also a doctor, generally someone very experienced in assisting the surgeon perform the operation), the consultant anaesthetist and anaesthetic nurse, two theatre nurses one of whom will be ‘scrubbed’ in for the operation, and sometimes medical student observers or trained representatives from specialist companies that provide equipment for the operation.
Once you are in theatre we perform something called a “World Health Organisation Team Time Out”; this is a critical step to help us ensure we are performing the correct surgery on the correct patient. You will have an intravenous line inserted by the anaesthetist, and then medications will be administered to drift you off to sleep. When you are asleep a breathing tube is placed in your trachea and a urinary catheter is placed in your bladder. You are then transferred from your bed to the operating table and your head is placed in the correct position for the type of brain tumour operation you are having. Your head needs to be very still for the operation, so it is placed in a special 3-pin fixation clamp device which holds it in place for the duration of the operation. Once your body and head are in position we then set up for Neuronavigation. The best way to think about navigation is just like GPS satellite navigation in your car. We use the scan taken the day prior as our “road map” to the tumour, and we register your head in real 3-dimensional life to a reference tool calibrated to the scan. In that way we know with millimetric accuracy exactly where we are in and around the brain and especially the tumour, and this makes your operation as safe as possible as well as helping the surgeon remove as much of the tumour as possible. The surgeon then shaves the hair over the proposed incision (we always put incisions behind the hairline for cosmetic reasons, or behind where the hairline should be in bald or receding patients), the skin is prepared with an antiseptic solution, and then sterile drapes are applied to cover you and only leave the operative field exposed.
The main steps in performing brain tumour surgery include making an incision, retracting the scalp skin, performing a craniotomy (removing a window of bone that is later replaced) with a very specialised high speed drill, opening the dura mater (the membrane or ‘skin’ of the brain), entering through the brain surface, identifying and resecting the tumour as much as safely possible, ensuring no ongoing bleeding within the resection cavity, stitching closed the dura, replacing and securing the removed bone with special small titanium plates and screws, stitching closed the skin, and finally placing a dressing and wrapping the head with a crepe bandage. This whole process can take several hours, with the longest part usually removing the tumour which is generally performed with the surgeon using some form of magnification (operating microscope or surgical loupes). The goal of surgery is maximal safe resection. This means that the Neurosurgeon will take as much tumour as they safely can and minimise injury to any nearby normal brain tissue. This can be very difficult! Sometimes a tumour can be very close or even include parts of the brain that are very important functional areas, such as speech, sight and limb strength, and sometimes these functions have already been impaired because of the growing tumour. A Neurosurgeon is highly trained to approach and resect the tumour as much as is safely possible without producing any additional functional deficit, however one of the risks of the operation is that a new deficit may occur because of surgery. Your surgeon will discuss these risks with you before your operation. Sometimes a tumour cannot be resected safely, and in that instance your surgeon may recommend you undergo a needle biopsy procedure instead; this will take a very small amount of tumour tissue via a special needle inserted using navigation through a small hole in the skull, enough to at least provide a pathological diagnosis of your tumour type, but the majority of tumour will be left in the brain. This is a much smaller operation than a tumour resection, and avoids the risk of a new functional deficit in areas of the brain that we term ‘eloquent’.
At the completion of the operation you are transferred back to your original bed, and the medications keeping you asleep are weaned off so you can wake up. You are transferred in your bed to a surgical recovery area where trained nurses closely watch and care for you as you emerge from your anaesthetic. As you wake your surgeon will assess you, paying particular attention to any possible harm or deficit he or she may have inadvertently caused from resecting the tumour. Once you are awake and stable your surgeon will telephone your nominated next of kin to let them know that your operation is finished. You generally spend a few hours in the recovery area before being transferred (in your bed) to the Critical Care Unit, where you will be closely monitored for the first night after your operation. You will most likely feel very tired and not very hungry, you may have a slight headache but generally it should not be too bad. Your family can visit you in Critical Care, however you may not feel like talking or interacting very much to begin with.
The following day you will probably feel a little bit better, you might feel hungry enough to try breakfast. You will be encouraged to sit out of bed, and a physiotherapist will start mobilising you, gently at first. Your urinary catheter can be removed, and many of the other intravenous lines that were inserted can also start to be removed. Later that day you will have another MRI brain scan; this is important to perform early so the surgeon can assess how extensive the tumour resection has been. If you are medically well enough you will be transferred out of Critical Care to a general surgical ward where you will probably get a better night’s sleep.
The next several days you will slowly start to feel a lot better. You will start eating and drinking normally again, and with the help of a physiotherapist you will start becoming more mobile. Your crepe bandage head wrap will stay on for a day or two, but the dressing covering your wound will stay on for at least 5 days. Once your dressing is removed you will see the sutures and the scar on your scalp; these are dissolvable sutures and will fall out by themselves, you don’t need to have them removed. Depending on the type of operation you have most people will go home by around the fourth post-operative day, so long as you are safe to go home and particularly if you have another responsible adult at home with you. Some people recover a lot slower or are not safe to be discharged directly home; for those people we generally arrange transfer to a rehabilitation facility, where you will slowly get better and stronger and can then be safely discharged to home.
Finally, your surgeon will contact you with your pathology results once they have become available. Most people have gone home by this stage, as sometimes it can take up to a week for the laboratory to provide a tissue diagnosis. This is very normal. Once we know what type of tumour it is we can then plan next steps, such as referral to a Radiation Oncologist or Medical Oncologist, your surgeon will generally arrange this for you.
What are the risks of brain tumour surgery?
No operation is risk free, whether it is brain surgery or any other type of surgery. To have a brain tumour operation requires a general anaesthetic, which always has some risk associated with it, including heart attack, stroke, and in very rare instances even death. The chance of any of these very serious complications is extremely small, much less than 1%. After the operation there are other general risks, such as chest or bladder infection, deep venous thrombosis (clots in the legs), and pulmonary embolism (leg clot travels to and lodge in the lungs impairing breathing).
There are risks of the operation itself. Cutting the skin risks bleeding and infection, but fortunately blood loss is not very much and the risk of a surgical incision infection is low. The replaced bone flap generally fuses to the skull with time but sometimes does not, and sometimes this bone flap can develop a chronic infection in which case it may need to be removed in a later operation; this is uncommon but can occur in immunocompromised patients. The riskiest part of a brain tumour operation is usually removing the tumour itself without damaging the normal adjacent brain, and the risk varies from person to person due to the anatomical location of the tumour. Every part of the brain is important, but some parts are more important than others. The analogy I often use as a comparison is bowel resection surgery: the bowel is a very long tube, and removing a small part with reconnection of the cut ends doesn’t affect its function. On the other hand, a Neurosurgeon cannot resect large parts of the brain without causing significant harm, which manifests as a neurological deficit in much the way that a person who has had a stroke may appear. Some parts of the brain control speech, some control sight, others are important for strength and motor function, and the location of the tumour dictates what function may be at risk with surgery. A Neurosurgeon is highly trained to know the anatomy of the brain, and can tell you what risks to expect with resecting your tumour. The surgeon will want to remove as much of the tumour as possible whilst leaving as much of the normal brain as possible to minimise the risk of harm from injury to the brain, which we call maximal safe surgical resection and which when combined with other therapies will improve overall survival for even the most aggressive tumours. Even if a new neurological deficit develops after surgery this often improves as the swelling and brain irritation subsides in the days after the operation. Other surgical risks include bleeding into the brain which may require taking a patient back to the operating theatre to remove a blood clot, seizures, fluid leaking from the wound, or fluid collecting in the brain that may need to be drained. Needle biopsy procedures are generally lower risk than tumour resection procedures, but can still be associated with infection and bleeding. Of course, there are also risks if surgery does not happen, which involves harm to the patient due to the tumour continuing to grow and invade the brain. An experienced surgeon can have a detailed discussion with you and your family about the expected risks and benefits of brain tumour surgery, as well as what other alternative treatment options may be relevant for you, in clear language that you understand.
What can I expect after I have gone home? Can I drive a car? Can I go to work?
You will probably be very tired at least to start with, and there will be a little bit of pain around the wound site. You will need plenty of rest and should not work or study for at least a couple of weeks. By Australian law you cannot drive a motor vehicle after brain tumour surgery, for a period of time of at least 3 months but potentially up to 12 months or even longer, mostly at the discretion of your surgeon. It is potentially unsafe to operate a motor vehicle or heavy machinery after brain surgery because of an increased risk of seizures or black outs which is dangerous to you or other motorists and pedestrians in the event that you pass lose control of the vehicle and have a crash.
As the days and weeks pass you will feel better and better, and you should be able to return to work or study once you feel well enough. If your surgeon has used dissolving sutures they won’t require removal, they will simply fall out with time, you can wash your hair before they fall out however. Any hair that was shaved for your surgery will slowly grow back, and once it has your scar should not be visible.
What other treatment may I need for my brain tumour? What is radiation therapy and chemotherapy?
Almost half of all new brain tumours diagnosed every year are of the aggressive type, including GBM, metastatic disease, and malignant meningiomas. For most of these we recommend other therapies in addition to surgery which we call adjuvant therapy and this has been demonstrated to increase overall and progression free survival. Typically, adjuvant therapy consists of both radiation therapy and chemotherapy. The goal of both of these therapies is to kill off any residual tumour cells that have not been resected by surgery. By different mechanisms these therapies attack any tumour cells that are rapidly dividing to stop of slow down tumour growth and minimise recurrence. This strategy works for most aggressive brain tumour types and is applied to almost all of them. Many studies have demonstrated that the combination of maximal safe surgical resection with adjuvant radiation and chemotherapy produces the best possible patient outcome with the longest possible survival, particularly when compared to no or partial treatment.
Radiation therapy is performed by a specialist doctor trained in administering it, typically in an outpatient setting in a hospital or specialist clinic. A trusted colleague of mine and fellow multi-disciplinary team member is Associate Professor Peter Gorayski at the Icon Cancer Centre in Windsor Gardens. There are different types of radiation therapy, and your Radiation Oncologist will discuss with you what is appropriate for your particular circumstance. Typically radiation therapy can commence once your scalp wound has healed usually a couple of weeks after surgery, any sooner increases the risk of a wound complication. Radiation is applied carefully to the head in a way that maximises the radiation beams directly to the tumour resection cavity to minimise radiation injury to the adjacent normal brain. Treatment usually happens Monday to Friday for a period of up to 6 weeks, which allows your Radiation Oncologist to divide the radiation in up to 30 separate ‘fractions’. Some side effects of radiation therapy include headaches and hair loss (which usually grows back), and you may need to take Dexamethasone steroid therapy during your treatment.
Chemotherapy most often can be performed at home with tablets, and no longer needs to be administered intravenously in a hospital setting. You will have an initial consultation with a Medical Oncologist around the same time that you meet with your Radiation Oncologist, and usually chemotherapy starts around the same time as radiation therapy commences or shortly after. I frequently refer patients to experienced Medical Oncologist Dr Nimit Singhal, a multi-disciplinary team member at the Icon Cancer Centre in Kurralta Park, as well as St Andrew’s Hospital. The most common type of chemotherapy used for aggressive brain tumours is called Temozolomide, and this is usually administered in tablet form. People often take Temozolomide continuously during their radiation therapy, and then continue with maintenance therapy by taking a tablet daily for 5 days, then 23 treatment free days, to make a 28-day treatment cycle. The number of cycles you will need depends on what your Medical Oncologist prescribes as well as how your tumour responds to treatment based on surveillance imaging, but in some cases can continue indefinitely. Common side effects include fatigue, nausea and vomiting, constipation and loss of appetite, and your Medical Oncologist will need to perform regular blood tests to ensure that your white blood cells (infection fighting cells) and platelets (blood clot forming cells) are not affected. Unlike other chemotherapy drugs hair loss is generally not a risk with Temozolomide however is a recognised rare side effect.
Will I need follow up?
Yes, ongoing follow up is recommended following surgery and adjuvant therapy for newly diagnosed brain tumours to monitor response to treatment, ensure no complications have developed, and most importantly to make sure that your needs are being met. Even benign brain tumours that have been completely removed should be monitored for evidence of delayed recurrence. Your treatment team, particularly your surgeon, will discuss how frequently you should be having surveillance MRI scans to look for evidence of tumour recurrence. Scans are often performed periodically for the rest of your life, but in some instances if scans have been performed for many years with no sign of tumour recurrence there would be a good argument to discontinue surveillance imaging and only perform another scan in the future if any concerning symptoms or signs develop. Your surgeon can discuss the frequency and duration of ongoing imaging with you, and this should be tailored to your individual needs and circumstances.
Do brain tumours go into remission, and can they come back? What happens if my tumour comes back?
It’s very unfortunate, but many brain tumours do recur even after successful surgery and treatment, and the more aggressive types generally almost always come back at some time in the future. For that reason we still do not have an effective cure for aggressive brain tumours like GBM, but we do have effective strategies that can prolong life and enhance progression free survival. For some tumours like benign meningiomas that have been completely removed this can sometimes be considered a cure, but this isn’t always possible. Doctors and nurses use the word ‘remission’ to mean that your symptoms or signs of cancer are reduced or gone completely, and for that reason we don’t generally classify brain tumours as being in remission or not; it’s a term we use much more commonly to describe cancer involving other parts of the body.
Following surgery and any other treatment your team will generally arrange ongoing follow up scans to look for any signs of tumour recurrence, but sometimes a recurrence is identified because of the development of clinical symptoms or signs. If a scan shows something concerning for tumour recurrence it is common to perform more specialised studies to see if this really represents recurrent tumour or if it reflects the brain’s response to radiation therapy, also known as radiation necrosis or “treatment effect”. Treatment effect is mostly benign and the symptoms it produces can often be managed with medications like Dexamethasone, however if a recurrent tumour is diagnosed then sometimes further surgery can be performed. If further surgery is felt to not be appropriate then generally chemotherapy is the only remaining treatment option, but this will be discussed with you and all treatment options should be explored.
Am I going to die from my brain tumour?
Many people diagnosed with a new brain tumour do not die because of it, but unfortunately a large number still do. Patients with resected mengiomas for instance are usually cured of their disease and rarely die from their brain tumour. Similarly, patients with low grade primary brain tumours (gliomas) don’t necessarily die because of their brain tumour. Benign tumours in the brain aren’t quite the same as benign tumours elsewhere in the body; because of the unique skull and brain anatomy, even a growing ‘benign’ brain tumour can still cause considerable harm if it becomes large enough, therefore the distinction between ‘benign’ and ‘malignant’ for brain tumours relates more to how fast they grow and how aggressive they behave, rather than their ability to spread around the body. We also rarely refer to brain tumours as ‘brain cancers’ although some people still use the term brain cancer, and that is not necessarily a bad thing.
Unfortunately many people with aggressive disease still ultimately die from their brain tumour. Without timely treatment people can sometimes succumb very quickly, but with modern treatment strategies consisting of maximal safe surgical resection, radiation therapy and chemotherapy, survival rates and life expectancies for even the most aggressive tumour types can be significantly extended. Without any treatment some people unfortunately die within weeks or months of their tumour diagnosis, but with maximal treatment the average life expectancy following diagnosis of a GBM for instance is around 16 months. It is extremely important to note here that any figures about life expectancy quoted on this website or anywhere in the literature are an average, which means that many people may in fact survive far longer than this, and what I tend to find most important is a person’s overall general health as well as their response to treatment to predict outcome and life expectancy.
Some people can live for many years, even decades, after successful treatment of less aggressive brain tumours, and in some cases such as low grade meningiomas that have been completely resected surgery can be considered a cure. Hopefully in the future we will find a way to further improve survival rates for people with aggressive brain tumours and transform it into a disease that people die with, rather than a disease that people die from. At some point along the journey it may become clear that more treatment is no longer appropriate and that goals should be targeted towards comfort and dignity, and in this instance referral to a palliative care service is often in the best interests of the patient and their family.
Are there any other online patient resources where I can learn more about brain tumours?
Yes, there are several excellent patient focused resources that are worth exploring. The Neurosurgical Research Foundation is an Adelaide based not for profit organisation founded in 1963 which funds research into the cause, diagnosis, prevention and treatment of disease or malfunction of the brain, spine and nerves. The NRF is active in brain tumour research and has a page on their website dedicated to links to local brain tumour information and resources. For full disclosure, the NRF supports me as the Abbie Simpson Clinical Fellow, including my clinical research at the University of Adelaide and the Royal Adelaide Hospital.
The Adelaide Brain Tumour Support Group was created by Annette Taylor in September 2017 after her diagnosis of a meningioma three years prior. Annette felt compelled to help and support other people going through a similar experience to what she did, as well as to create a safe space for patients, carers and loved ones of those touched by brain tumours. They have social events such as coffee catch ups on the 1st Saturday of every month around Adelaide, as well as other events particularly to raise support, awareness and fundraising for brain tumour research. They have a private Facebook group where participants can share their own stories and support others as they share theirs.
The Adult Brain Cancer Support Association is also Adelaide based, with aims to give support, encouragement, help and guidance to adults diagnosed with brain tumours, their families, friends and carers. This is an organisation made up of patients, families, carers, friends, and anyone else touched by brain tumours. They meet monthly and provide a safe and friendly environment to talk about the realities of living with a brain tumour diagnosis.
The Cure Brain Cancer Foundation is a leading organisation for brain cancer research, advocacy and awareness in Australia. They have a wealth of information about brain tumours, as well as providing support for brain tumour research including ways for everyone to get involved in finding a cure for brain cancer.
The National Brain Tumor Society is American organisation with a multi-faceted approach to achieve the greatest impact, results and progress for people with brain tumours. They have an excellent patient resource section with facts, news, support conversations and a description of the patient experience.
Is there any research happening into brain tumour treatment right now?
Yes, brain tumour research is a high priority for the Australian based Medical Research Future Fund and the National Health and Medical Research Council, as well as for many other research institutions around the world. Here in South Australia we are extremely lucky to be a part of several significant and ground breaking research projects into advancing our knowledge of brain tumours as well as some novel clinical trials. A lot of recent progress has been made in our understanding of genetic profiling of brain tumours, and this in turn we hope will translate into better patient outcomes.
The Neurosurgical Research Foundation recently launched Brain Tumour Research SA (BTRSA), with the objective to foster research into the cause, diagnosis, prevention and treatment of brain tumours. Importantly, BTRSA is a collaborative effort between brain tumour researchers and clinicians who treat brain tumours, all across South Australia. BTRSA is also a sponsor of the unique South Australian Neurological Tissue Bank (SANTB), which collects specimens of brain tumours kindly donated by patients undergoing brain tumour surgery at the Royal Adelaide Hospital and Flinders Medical Centre to better understand the pathology of tumour growth.
Making headlines recently was the announcement of a new ‘smart’ brain tumour biopsy needle developed in conjunction with Professor Robert McLaughlin from the Department of Nanoscale Biophotonics and Dr Adam Wells from the Department of Neurosurgery, both at the University of Adelaide. The tiny probe can be used in conjunction with existing technology in order to make brain biopsy surgery safer and faster and less likely to produce false positive results.
Finally, a new and exciting therapy to treat recurrent GBM has been developed by a group of South Australian researchers looking into a novel immunotherapy called CAR-T cells in which the patient’s own T cells are trained to find and attack the aggressive tumour cells. This group of researchers, together with Dr Adam Wells at the Royal Adelaide Hospital Department of Neurosurgery, are aiming to recruit patients with recurrent GBM for a phase one clinical trial testing CAR-T cell therapy against conventional treatment.
More information
Do you have any other questions about brain tumours and their management? Feel free to contact us on (08) 7127 2359, or email us at wells.admin@spine.com.au.