OurStoryBank: Erika talks about recurrence
Erika was thriving as a GBM survivor until it came back. She’s finding out that the options for recurrent GBM are few.
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You can feel alone and isolated, but help is at hand. Find out about the GBM Standard of Care, important questions to ask your doctor, tissue collection and requesting a second opinion.
Getting a GBM diagnosis can be terrifying and fill you with numerous emotions and questions.
You can feel alone and isolated, but help is at hand. Find out about the GBM Standard of Care, important questions to ask your doctor, tissue collection and requesting a second opinion.
HOW IS GBM DIAGNOSED
AND WHAT ARE THE SYMPTOMS?
The majority of brain tumors are diagnosed following the appearance of symptoms such as headaches, tiredness, confusion or problems with walking or talking, all the way to seizures. For fast growing tumors, the onset of symptoms can be quite sudden. Brain tumors cause increased intracranial pressure, which can lead to headaches or strokes in more serious cases.
People with GBM can have different symptoms depending on the location of the tumor, because the functions of nearby brain regions are more likely to be affected. Sometimes the first sign of a tumor comes through an optician spotting an irregular presence during an eye test.
Brain scans are used to detect tumors. A magnetic resonance imaging (MRI) scan is most commonly used for diagnosis. This can not only confirm the presence of a tumor, but also provide information about the size and which area of the brain it occupies.
For people who cannot undergo MRI scans, computerized tomography (CAT) scans can be used for diagnosis.
GBM STANDARD OF CARE.
You’ll hear this phrase, ‘standard of care’, a lot. Typically, newly diagnosed patients will undergo the standard of care – this involves following a series of pre-established guidelines for treatment of GBM.
The standard of care is surgery to remove as much of the tumor as possible, followed by daily radiation and chemotherapy pills for six weeks, then a six-month period of chemotherapy pills taken five days in every month.
The first step involves surgery – the goal being to remove as much as the tumor as possible without damaging surrounding tissue. This first surgery also acts as the biopsy: a sample of the tumor will be taken to confirm diagnosis and provide more information about your specific tumor type.
If you are able to talk to your surgeon before the operation, we strongly encourage you to ask about collecting and storing tumor tissue which could be invaluable later. See below.
Once healed from surgery, the next stage of your treatment is likely to involve a number of rounds of radiotherapy and chemotherapy using the drug temozolomide (TMZ). Chemotherapy is usually continued once radiotherapy is finished.
The specific course of treatment provided for you can vary based on factors such as your Karnofsky performance status – a standardised way of measuring ability to perform basic tasks – age and type of tumor.
To find out more about management options for people with glioblastoma, see the current NICE guidelines and their visual summary.
The standard of care for GBM is viewed as ‘sub-optimal’ by many as it is limited in its ability to treat GBM – a notoriously difficult illness to combat.
GBM is a very aggressive form of cancer. A GBM tumor forms tendrils that extend into the healthy surrounding tissue and as a result its boundaries are not clearly defined. This makes it difficult to surgically remove all of the tumor.
GBM tumors display a high level of heterogeneity, meaning that a single tumor can consist of many different types of cells, making it difficult to target all of them at once. If any tumor cells survive treatment, they can multiply and form a new tumor with greater resistance to treatment – which is when doctors talk about ‘progression’ of the disease (they may also use the word ‘recurrence’).
For this reason, many people explore treatments beyond the standard of care. To find out more about GBM treatment through the NHS, read this free PDF booklet from brainstrust.
12 QUESTIONS TO ASK YOUR DOCTOR
OR NURSE SPECIALIST
Your first visits to a doctor, or neuro-oncologist, will be critical in setting the direction and nature of your GBM journey. Being in a room with an expert – whether it’s a doctor or a nurse specialist who can often be a more effective source of information as they tend to respond more quickly – can be a daunting experience. But remember, this is your journey, and you have agency in your treatment.
In most cases GBM begins as a primary glioblastoma, meaning it has developed where it began. But it can also develop over time from a low-grade tumor, known as a secondary glioblastoma. Being able to describe your tumor using the correct medical terms will be beneficial when doing your own research. So ask your doctor for a clear and detailed description of the tumor that you have.
It is important to check your doctor’s previous experience. GBM is such a complex tumor the more specialist knowledge your surgeon, doctor or neuro-oncologist has in dealing with it the better.
GBM can impact a range of brain functions depending on the location of the tumour. Different areas of the brain are responsible for different functional processes such as balance, memory, vision, speech and so on. The processes controlled by the area of the brain containing the tumour are likely to be impacted first, which can give an indication of symptoms that might develop. As the tumour grows and spreads symptoms will progress and knowing where the tumour is spreading can act as an early warning of what difficulties lie ahead. So ask your doctor about the size and location of your tumour, and what you should expect in terms of possible impacts on you should the tumour spread.
Whilst most people receive the standard of care, certain factors might mean that you need a variation of this. Understanding the treatment your doctor is recommending for you will enable you to do your own research and might influence your decision around seeking a second opinion. Travel can be an issue – are you willing and able to travel sometimes large distances to get state-of-the-art treatment? How would that impact your finances and your daily or family life? Identifying nearby treatment centers and those that might be more suitable but are further out, will help you make sometimes difficult decisions about where you want to be treated.
Radiation can lead to fatigue, nausea, hair loss and headaches. Common side effects of chemotherapy can include nausea, loss of appetite and constipation. Your doctor should be able to help you manage these side effects, but asking about them in advance can help you prepare and keep ahead of them. Longer term side effects can include increased risk of stroke due to potential vascular damage from radiation. Radiation can also cause cognitive loss. Again, asking your doctor about side effects and how you can manage them can help you have a more complete understanding of the journey ahead.
Getting a second opinion about your treatment can be critical, particularly from a major brain tumor center. It is common for people to request a second opinion for serious conditions such as GBM, so you shouldn’t worry about causing offense by asking your current doctor. You are very unlikely to be refused a second opinion, so ask for guidance on who to approach, ideally a specialist in a major brain tumor center.
Freezing is the best storage method for tumor tissue. Tissue needs to be frozen after removal to be used in some types of genomic testing and for treatments such as dendritic cell vaccinations – personalized vaccines geared to your own tumor. These are cutting-edge experimental treatments that scientists believe might offer a way forward in combatting GBM, though the work is still in its infancy.
Genomic testing provides a more detailed analysis of the tumor compared to standard pathology tests. It is performed on fresh tumor tissue and gives information about the specific mutations present. Knowing what mutations are present can indicate how the tumor might respond to various treatments and paint a clearer picture of what treatments or trials will be suitable for you, including experimental new approaches.
Find out whether your medical advisor offers genomic sequencing. If so, ask when and how you will be informed about what it reveals. If they do not, then ask for advice on how you can get the sequencing done another way.
As the standard of care for GBM is ‘sub-optimal’ (see above) you might want to consider pursuing additional treatments. One such novel treatment option includes personalized immunotherapies, which are designed to help the body identify tumor cells and mobilize the body’s own immune response to fight them. Your doctor may be able to offer advice in finding additional therapies.
Optune is a relatively new treatment for GBM produced by Novocure. It is a wearable, portable device that creates low-intensity electrical fields, known as Tumor Treating Fields, to disrupt the division of cancer cells. The treatment has been shown to extend survival in some GBM patients. In the US the Optune device has been approved by the FDA to treat people who have been newly diagnosed with GBM when it is used together with a regimen of chemotherapy. It has also been approved to treat GBM progression should your tumor come back. Ask your doctor whether it is an option for you. (Novocure, the company that produces Optune, has generously supported OurBrainBank through its community outreach program.)
Clinical trials are research studies that investigate the effect of new treatments on GBM patients. Not all trials will be suitable for all patients as GBM tumors can be very varied and respond differently to treatments, so you should check with your doctor how they will assess your eligibility for a trial. Ask whether there are any trials open to you that would be particularly relevant to your type of tumor and its genomic make-up (see above).
People living with GBM often explore additional ways of coping with the illness, such as taking on an exercise regime, changing their diet, or taking supplements. You should discuss any changes you are considering with your doctor. Ask them whether the change is safe, whether they think it might be beneficial, and check with them the dosages of any supplements.
READ THIS BEFORE SURGERY:
TISSUE COLLECTION.
During surgery it is important to get tumor tissue collected and stored. Tumor tissue is used to identify the tumor type, but fresh tissue is also needed for genomic testing and for some treatments such as dendritic cell vaccinations – the experimental personalized vaccines.
It is important that enough tissue is taken and that this is stored under the correct conditions. Before surgery you should discuss with your surgeon what you might want to use your tissue for, how much tissue you will need and confirm the conditions under which it will be stored.
You should also ask your doctor whether the fluorescent dye 5-ALA will be used during the surgery. This compound can be taken as a liquid solution and causes the tumor cells to fluoresce. This improved visibility helps the surgeon remove more of the tumor.
REQUESTING A SECOND OPINION.
You might want to discuss your condition and treatment plan with another doctor to get an additional viewpoint. This can be a good step to feel more empowered in your care, open up different approaches to combating the disease, and provide some much needed reassurance.
Everybody is entitled to ask their healthcare provider for a second opinion, and you shouldn’t worry about causing offense by doing so. While getting a second opinion isn’t a legal right, it is unusual to be refused one. To get a second opinion you should ask your current doctor and they can refer you to another consultant. Alternatively, you may wish to go to a private doctor if that is an option for you.
STORIES.
Adam Hayden: writer, philosopher, husband, father and long-term glioblastoma survivor (1982-2025)
Remembering Adam Hayden, a giant in the glioblastoma community (1982-2025)
STORIES.
OurStoryBank: Erika talks about recurrence
Erika was thriving as a GBM survivor until it came back. She’s finding out that the options for recurrent GBM are few.
Adam Hayden: writer, philosopher, husband, father and long-term glioblastoma survivor (1982-2025)
Remembering Adam Hayden, a giant in the glioblastoma community (1982-2025)
