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When Stu was diagnosed with glioblastoma in January 2021, we very quickly learnt the phrase "standard of care". Essentially, it means the established treatment pathway offered for a particular condition. For glioblastoma in the UK, that usually starts with surgery or biopsy where possible, followed for many patients by radiotherapy and chemotherapy with temozolomide.
At the beginning, standard of care felt reassuring. There was a plan. There were doctors who knew what they were doing and a sequence of treatments we could follow. What we didn't understand was how much could happen around that pathway, how quickly some decisions needed to be made and how useful information gathered right at the beginning could potentially become later.
If you or someone you love has only just been diagnosed and surgery hasn't happened yet, there are things on this page I would want you to know before the operation. Not because I think you should refuse or delay standard treatment, but because with hindsight there are questions I wish we'd known to ask while we still had every option open to us.
SURGERY OR BIOPSY
For a suspected glioblastoma, surgery is usually considered where it is possible to remove tumour safely. The aim is generally to remove as much of the tumour as possible without causing unacceptable damage to healthy brain tissue. Where resection isn't considered safe or possible, a biopsy may be carried out instead so that tissue can be examined and a diagnosis made.
Stu was originally considered operable. But between the tumour being detected, the MDT meeting taking place and his surgery being scheduled, it grew into the midline of his brain and we were told it had become inoperable. He had a biopsy instead. At the time we accepted that this was simply what had happened. We didn't know that a delay could change the situation so drastically and we didn't know we could immediately seek another neurosurgical opinion. With hindsight, I would have done that the moment the tumour was found.
That doesn't mean another surgeon would definitely have operated or that the outcome would have been different. I will never know that. But knowing what I know now, I would have wanted another specialist neurosurgeon to look at the scans while surgery was still potentially an option rather than discovering afterwards that the window had closed.
GLIADEL WAFERS
Gliadel wafers are small biodegradable implants containing the chemotherapy drug carmustine. They can be placed directly into the space where a brain tumour has been removed during surgery, allowing chemotherapy to be delivered locally as the wafers gradually dissolve. They aren't suitable for everyone. NICE guidance recommends carmustine implants as an option for people with newly diagnosed high-grade glioma where at least 90% of the tumour has been surgically removed.
This wasn't an option for Stu because his tumour couldn't be resected and he had a biopsy rather than surgery. But it's another example of something I would want to know about before an operation rather than afterwards. If surgery is planned, I would ask the neurosurgical team whether Gliadel wafers are relevant to your particular situation and why they are, or aren't, being considered.
BEFORE SURGERY: ASK ABOUT YOUR TUMOUR TISSUE
This is probably one of the most important things I've learnt since Stu died, and it is something I wish someone had explained to us before his biopsy. Ask what is going to happen to the tumour tissue that is removed. Tumour tissue is needed for diagnosis and molecular testing, and pathology teams need enough appropriate tissue to do that essential work. But the way additional suitable tissue is preserved can also matter later. Tumour samples are commonly preserved using formalin and paraffin wax for routine pathology. Fresh-frozen tissue, or tissue preserved through other appropriate pathways for genomic testing, can potentially be useful for additional molecular analysis, whole genome sequencing, research, clinical trials and some personalised treatment approaches.
That does not mean every piece of tumour should just be frozen, that fresh-frozen tissue is appropriate or available in every situation, or that storing it guarantees access to a future treatment. Diagnosis comes first and decisions about tissue have to be made by the relevant surgical and pathology teams. But this is the bit I think patients should know: If surgery or biopsy hasn't happened yet, ask before it does.
Ask your team:
The answers will vary depending on the hospital, the operation, how much tissue can safely be obtained and what is clinically appropriate. The important thing is knowing that these questions exist while there is still time to ask them.
WHY TUMOUR TISSUE MATTERS
I didn't understand any of this in 2021. I thought a biopsy was a biopsy. They took some tumour, told us it was glioblastoma and then we moved on to treatment. I had no idea that the tissue itself might later become relevant when we started looking beyond standard treatment. By then, of course, Stu's tumour was inoperable.
This issue has become much more prominent since his diagnosis. There is now an active UK campaign, Owain's Law calling for suitable brain tumour tissue to be routinely fresh-frozen and for patients to be properly informed about what happens to their tissue.
The campaign was started by Ellie James after her husband Owain died from brain cancer in 2024. Only a small amount of the tumour removed during Owain's surgery had been fresh-frozen. His family later discovered that this affected the amount of suitable tissue available when they pursued a personalised vaccine treatment. I find stories like Owain's incredibly difficult because they highlight something I feel very strongly about after our own experience: patients cannot ask questions they don't know exist.
In 2026 there is still variation between NHS pathology services in England in how fresh tissue is handled and whether fresh-freezing is available. Work is underway nationally around freezer capacity, sample handling, tissue-retention guidance and consent, but there is not currently one routine approach that means every suitable brain tumour sample is automatically fresh-frozen. So until that changes, I would ask.
PATHOLOGY AND MOLECULAR TESTING
One thing that has changed since we were thrown into this world is the importance given to the molecular characteristics of brain tumours. A brain tumour diagnosis isn't based simply on what the cells look like under a microscope. Molecular information helps doctors classify the tumour more accurately and can provide information about prognosis and treatment.
Current NICE guidance says all high-grade glioma specimens should be tested for MGMT promoter methylation. MGMT became incredibly important to us because it can help predict how likely a glioblastoma is to benefit from temozolomide. There are other molecular characteristics that can also matter to diagnosis and classification, including IDH status, and additional genomic testing may reveal further information depending on the individual tumour and the testing available.
This is an area where the landscape has moved on considerably since Stu was diagnosed. On our original website I wrote that the level of genetic testing we eventually pursued privately wasn't offered as standard care. That reflected our experience in 2021, but I wouldn't write it that way now because molecular testing is much more embedded within modern glioma diagnosis and NHS genomic pathways have developed.
That doesn't mean every patient automatically receives every possible genomic test or that every molecular finding leads to a treatment. Those are very different things. But I would absolutely want to understand what has been tested, what the results mean and whether any further testing might be useful and ask your medical team for all the possible tests.
RADIOTHERAPY
Radiotherapy uses high-energy radiation to damage cancer cells. For many people with newly diagnosed glioblastoma who are well enough for treatment, radiotherapy forms part of the standard pathway following surgery or biopsy.
For appropriate younger and fitter patients, current NICE guidance recommends 60 Gy of radiotherapy given in 30 fractions alongside temozolomide, followed by further cycles of temozolomide. Different schedules may be recommended depending on factors including age, performance status and MGMT status.
OUR EXPERIENCE OF RADIOTHERAPY
In Stu's case, radiotherapy was described to us as palliative because his tumour couldn't be resected.
We asked whether there was a more targeted radiotherapy option available rather than the treatment he was being offered, but at the time we were told there wasn't one available to him at our local hospital. Initially radiotherapy appeared to be working incredibly well. Stu's speech improved and his thinking came back. For a while it felt as though we were getting him back.
Then, two days after the six weeks of radiotherapy finished, the symptoms of swelling began. He developed excruciating headaches and it had a huge impact on his quality of life. Trying to balance controlling the swelling with keeping his steroid use as low as possible became incredibly difficult.
Stu hated being on steroids and was particularly concerned about their effect on his immune system because of some of the other treatments we were exploring. Other patients we knew talked to us about Boswellia and we began looking into that too.
On the original version of this page I wrote that, given the opportunity again, we would push for proton beam therapy because I believed it would have caused less damage and swelling. I wouldn't make that claim now. Radiotherapy technology and suitability are far more complicated than I understood at the time, and proton beam therapy is not automatically a better treatment for glioblastoma just because it can target radiation differently.
What I would do is ask more questions about the radiotherapy plan, why that particular technique was being recommended, what alternatives existed and whether there was any reason to seek an opinion from a specialist neuro-oncology radiotherapy centre.
TEMOZOLOMIDE
Temozolomide, usually shortened to TMZ, is the chemotherapy most closely associated with standard treatment for newly diagnosed glioblastoma. For appropriate patients it is given alongside radiotherapy and then continued afterwards in treatment cycles. This combined approach is often called the Stupp protocol, after the trial that established it as standard treatment in 2005.
More than twenty years later, surgery where possible followed by radiotherapy and temozolomide remains the backbone of standard NHS treatment for newly diagnosed glioblastoma. That fact still stops me in my tracks.
There has been an enormous amount of research since 2005, and there are clinical trials, newer technologies and experimental approaches being explored, but research existing is not the same as a treatment being routinely available to the person sitting in an NHS consulting room after a glioblastoma diagnosis.
OUR EXPERIENCE OF TEMOZOLOMIDE
Stu took temozolomide every day during his six weeks of radiotherapy. He then had a four-week break before starting the higher-dose adjuvant schedule, taking it for five days followed by 23 days off. Eventually we had to pivot to a different chemotherapy when temozolomide was no longer working.
By this point we were already looking far beyond the standard pathway. We'd started speaking to doctors elsewhere, exploring molecular testing and trying to understand whether the biology of Stu's particular tumour could help us make more individual treatment decisions. This was when the difference between treating glioblastoma as a disease and understanding the particular glioblastoma growing inside Stu's head became very important to me.
WHAT HAPPENS AFTER STANDARD TREATMENT?
This was another thing I didn't understand at diagnosis. I think somewhere in my head I imagined there would always be a clear next treatment. You did treatment A, then treatment B and if that stopped working the doctors moved you on to treatment C. Glioblastoma isn't that tidy.
People are monitored with clinical reviews and MRI scans, and if the tumour progresses or returns, the options depend on things including where the tumour is, previous treatment, performance status, molecular characteristics and the individual person's circumstances.
Further surgery or radiotherapy may sometimes be considered. Chemotherapy options can include drugs such as lomustine or further temozolomide in appropriate circumstances. Clinical trials may also be relevant.
But this is also the point at which many families discover that some of the treatments they've been reading about aren't routinely available through the NHS, aren't suitable for their particular tumour or are only available through a clinical trial, privately or abroad. We learnt that very quickly. And when you're dealing with an aggressive cancer, trying to research all of that after you've been told the current treatment has stopped working is a horrible position to be in.
2026 UPDATE
The science around glioblastoma has moved forward since Stu was diagnosed in 2021. Molecular classification is increasingly important, NHS genomic pathways have developed and researchers are investigating everything from personalised treatments and immunotherapies to new drug combinations and ways of matching treatments more closely to tumour biology.
But the routine treatment available to many newly diagnosed glioblastoma patients remains remarkably familiar. For appropriate patients, maximal safe surgery or biopsy followed by radiotherapy with temozolomide and then further temozolomide is still the backbone of NHS standard treatment. What has changed for me is my understanding of everything that needs to happen around that pathway.
I would want molecular results explained properly. I would ask about whole genome sequencing where appropriate. I would ask what was happening to the tumour tissue before surgery. I would seek another specialist opinion early rather than waiting until we needed one. And I would start learning about trials and other options while standard treatment was still working, rather than assuming we'd have plenty of time to investigate them later. None of that means abandoning standard treatment. It means understanding that standard treatment is one part of a much bigger picture.
HINDSIGHT
WHAT WE KNOW NOW THAT WE WISH WE'D KNOWN THEN
If I could go back to January 2021, I would still want Stu to receive evidence-based treatment, but I would approach those first few weeks very differently. I wouldn't assume that the first medical team we were given represented the only view available to us, or that we needed their permission or approval to look elsewhere.
Our experience with Stu's first NHS team was difficult. We often felt dismissed when we asked about anything beyond the standard pathway, and Stu found his consultant particularly patronising. There were eye rolls when we brought up things we had researched and, when we sought a second opinion, his consultant wanted to write to the doctor we had approached. For us, that rather missed the point. We weren't looking for two doctors to agree with each other. We wanted another specialist to look independently at Stu, his scans and his tumour and tell us what they thought.
We felt really let down at times, both by how limited the standard treatment options for glioblastoma were and by the unwillingness of some of the doctors we encountered to even discuss anything beyond them. That doesn't mean I distrust conventional medicine or the NHS, and it certainly doesn't mean I believe there was a secret cure somewhere that doctors were keeping from us. We subsequently met some extraordinary doctors and nurses, both within the NHS, outside it and outside the UK, who cared for Stu beautifully. What I learnt is that medicine isn't one voice, one doctor doesn't have every answer and access to specialist knowledge shouldn't depend on where you happen to be treated.
With hindsight, I would have sought a second neurosurgical opinion immediately while surgery was still potentially possible, and we would have explored second opinions, repurposed medications and the more extensive molecular testing we eventually pursued through CeCaVa much earlier. I would ask what would happen to the tumour tissue obtained during surgery or biopsy, what would be needed for diagnosis and what could appropriately be retained or preserved for future testing. I would ask for molecular testing and genomic sequencing before we desperately needed the information, find out what clinical trials existed at diagnosis rather than waiting for recurrence and start building the wider team of people we eventually found much earlier. Not because any of those things offered a guaranteed answer, but because with such an aggressive disease I wanted us to understand every reasonable avenue available to Stu rather than discovering them one by one as his options became more limited.
Most of all, I wouldn't assume that if there were other useful questions to ask, someone would automatically tell us. The NHS pathway has boundaries, individual hospitals have different resources and expertise and the clinicians treating you are working within the options available to them. That doesn't mean those are the only questions you can ask or the only opinions you can seek. My hope is that increasingly personalised cancer care, better research and better access to specialist neuro-oncology expertise will give future patients more options than Stu had.
If you're at the beginning now, I'm not suggesting you need to investigate everything or make every possible decision today. A brain tumour diagnosis is overwhelming enough without feeling as though you've suddenly been given another full-time job. But there are some things that are much easier to explore while you still have time and options, and I wish we'd known that sooner. Tumour tissue is one of them. Getting another specialist opinion can be another. You are allowed to ask questions, you are allowed to seek another view and you don't need to feel difficult for doing either.
Ask the questions. Get copies of your reports. Understand what has been tested. Ask whether another opinion would help. Find out what happens next before you desperately need there to be a next. And then make the decisions that are right for you.
CURRENT INFORMATION
The standard treatment pathway for glioblastoma can vary depending on age, general health, performance status, tumour location and molecular characteristics. NICE's current guidance covers surgery, radiotherapy, temozolomide, molecular testing, treatment at recurrence and follow-up. NHS information about malignant brain tumours also explains the main treatment options, including surgery, radiotherapy and chemotherapy.
For tumour tissue specifically, the situation is still developing. In 2026 the Department of Health and Social Care confirmed that fresh-freezing practices vary between pathology services in England and that NHS England has completed a gap analysis of freezer capacity. Work is also underway around tissue-retention guidance, consent and improving access to genomic testing.
The Campaign for Owain's Law is campaigning for suitable brain tumour tissue to be routinely fresh-frozen and for patients to be properly informed about tissue preservation before surgery.
You can also read our pages on Second Opinions, CeCaVa, Repurposed Medications and the other doctors, organisations and treatments we explored during Stu's illness.
This page shares our experience and what I've learnt since. It isn't medical advice and decisions about surgery, tissue handling, testing and treatment need to be discussed with your own neurosurgical, oncology and pathology teams.
At the beginning, standard of care felt reassuring. There was a plan. There were doctors who knew what they were doing and a sequence of treatments we could follow. What we didn't understand was how much could happen around that pathway, how quickly some decisions needed to be made and how useful information gathered right at the beginning could potentially become later.
If you or someone you love has only just been diagnosed and surgery hasn't happened yet, there are things on this page I would want you to know before the operation. Not because I think you should refuse or delay standard treatment, but because with hindsight there are questions I wish we'd known to ask while we still had every option open to us.
SURGERY OR BIOPSY
For a suspected glioblastoma, surgery is usually considered where it is possible to remove tumour safely. The aim is generally to remove as much of the tumour as possible without causing unacceptable damage to healthy brain tissue. Where resection isn't considered safe or possible, a biopsy may be carried out instead so that tissue can be examined and a diagnosis made.
Stu was originally considered operable. But between the tumour being detected, the MDT meeting taking place and his surgery being scheduled, it grew into the midline of his brain and we were told it had become inoperable. He had a biopsy instead. At the time we accepted that this was simply what had happened. We didn't know that a delay could change the situation so drastically and we didn't know we could immediately seek another neurosurgical opinion. With hindsight, I would have done that the moment the tumour was found.
That doesn't mean another surgeon would definitely have operated or that the outcome would have been different. I will never know that. But knowing what I know now, I would have wanted another specialist neurosurgeon to look at the scans while surgery was still potentially an option rather than discovering afterwards that the window had closed.
GLIADEL WAFERS
Gliadel wafers are small biodegradable implants containing the chemotherapy drug carmustine. They can be placed directly into the space where a brain tumour has been removed during surgery, allowing chemotherapy to be delivered locally as the wafers gradually dissolve. They aren't suitable for everyone. NICE guidance recommends carmustine implants as an option for people with newly diagnosed high-grade glioma where at least 90% of the tumour has been surgically removed.
This wasn't an option for Stu because his tumour couldn't be resected and he had a biopsy rather than surgery. But it's another example of something I would want to know about before an operation rather than afterwards. If surgery is planned, I would ask the neurosurgical team whether Gliadel wafers are relevant to your particular situation and why they are, or aren't, being considered.
BEFORE SURGERY: ASK ABOUT YOUR TUMOUR TISSUE
This is probably one of the most important things I've learnt since Stu died, and it is something I wish someone had explained to us before his biopsy. Ask what is going to happen to the tumour tissue that is removed. Tumour tissue is needed for diagnosis and molecular testing, and pathology teams need enough appropriate tissue to do that essential work. But the way additional suitable tissue is preserved can also matter later. Tumour samples are commonly preserved using formalin and paraffin wax for routine pathology. Fresh-frozen tissue, or tissue preserved through other appropriate pathways for genomic testing, can potentially be useful for additional molecular analysis, whole genome sequencing, research, clinical trials and some personalised treatment approaches.
That does not mean every piece of tumour should just be frozen, that fresh-frozen tissue is appropriate or available in every situation, or that storing it guarantees access to a future treatment. Diagnosis comes first and decisions about tissue have to be made by the relevant surgical and pathology teams. But this is the bit I think patients should know: If surgery or biopsy hasn't happened yet, ask before it does.
Ask your team:
- What tests will be carried out on the tumour?
- How will the tissue be preserved?
- Will any suitable tissue be fresh-frozen or otherwise preserved for genomic testing?
- Is whole genome sequencing appropriate or available?
- Will there be tissue retained after the diagnostic tests are complete?
- Could retained tissue potentially be used for further testing, research or clinical trials later?
- If fresh-freezing isn't available at your hospital, are there any other options that can be discussed before surgery?
- Who should you speak to about consent and future use of the tissue?
The answers will vary depending on the hospital, the operation, how much tissue can safely be obtained and what is clinically appropriate. The important thing is knowing that these questions exist while there is still time to ask them.
WHY TUMOUR TISSUE MATTERS
I didn't understand any of this in 2021. I thought a biopsy was a biopsy. They took some tumour, told us it was glioblastoma and then we moved on to treatment. I had no idea that the tissue itself might later become relevant when we started looking beyond standard treatment. By then, of course, Stu's tumour was inoperable.
This issue has become much more prominent since his diagnosis. There is now an active UK campaign, Owain's Law calling for suitable brain tumour tissue to be routinely fresh-frozen and for patients to be properly informed about what happens to their tissue.
The campaign was started by Ellie James after her husband Owain died from brain cancer in 2024. Only a small amount of the tumour removed during Owain's surgery had been fresh-frozen. His family later discovered that this affected the amount of suitable tissue available when they pursued a personalised vaccine treatment. I find stories like Owain's incredibly difficult because they highlight something I feel very strongly about after our own experience: patients cannot ask questions they don't know exist.
In 2026 there is still variation between NHS pathology services in England in how fresh tissue is handled and whether fresh-freezing is available. Work is underway nationally around freezer capacity, sample handling, tissue-retention guidance and consent, but there is not currently one routine approach that means every suitable brain tumour sample is automatically fresh-frozen. So until that changes, I would ask.
PATHOLOGY AND MOLECULAR TESTING
One thing that has changed since we were thrown into this world is the importance given to the molecular characteristics of brain tumours. A brain tumour diagnosis isn't based simply on what the cells look like under a microscope. Molecular information helps doctors classify the tumour more accurately and can provide information about prognosis and treatment.
Current NICE guidance says all high-grade glioma specimens should be tested for MGMT promoter methylation. MGMT became incredibly important to us because it can help predict how likely a glioblastoma is to benefit from temozolomide. There are other molecular characteristics that can also matter to diagnosis and classification, including IDH status, and additional genomic testing may reveal further information depending on the individual tumour and the testing available.
This is an area where the landscape has moved on considerably since Stu was diagnosed. On our original website I wrote that the level of genetic testing we eventually pursued privately wasn't offered as standard care. That reflected our experience in 2021, but I wouldn't write it that way now because molecular testing is much more embedded within modern glioma diagnosis and NHS genomic pathways have developed.
That doesn't mean every patient automatically receives every possible genomic test or that every molecular finding leads to a treatment. Those are very different things. But I would absolutely want to understand what has been tested, what the results mean and whether any further testing might be useful and ask your medical team for all the possible tests.
RADIOTHERAPY
Radiotherapy uses high-energy radiation to damage cancer cells. For many people with newly diagnosed glioblastoma who are well enough for treatment, radiotherapy forms part of the standard pathway following surgery or biopsy.
For appropriate younger and fitter patients, current NICE guidance recommends 60 Gy of radiotherapy given in 30 fractions alongside temozolomide, followed by further cycles of temozolomide. Different schedules may be recommended depending on factors including age, performance status and MGMT status.
OUR EXPERIENCE OF RADIOTHERAPY
In Stu's case, radiotherapy was described to us as palliative because his tumour couldn't be resected.
We asked whether there was a more targeted radiotherapy option available rather than the treatment he was being offered, but at the time we were told there wasn't one available to him at our local hospital. Initially radiotherapy appeared to be working incredibly well. Stu's speech improved and his thinking came back. For a while it felt as though we were getting him back.
Then, two days after the six weeks of radiotherapy finished, the symptoms of swelling began. He developed excruciating headaches and it had a huge impact on his quality of life. Trying to balance controlling the swelling with keeping his steroid use as low as possible became incredibly difficult.
Stu hated being on steroids and was particularly concerned about their effect on his immune system because of some of the other treatments we were exploring. Other patients we knew talked to us about Boswellia and we began looking into that too.
On the original version of this page I wrote that, given the opportunity again, we would push for proton beam therapy because I believed it would have caused less damage and swelling. I wouldn't make that claim now. Radiotherapy technology and suitability are far more complicated than I understood at the time, and proton beam therapy is not automatically a better treatment for glioblastoma just because it can target radiation differently.
What I would do is ask more questions about the radiotherapy plan, why that particular technique was being recommended, what alternatives existed and whether there was any reason to seek an opinion from a specialist neuro-oncology radiotherapy centre.
TEMOZOLOMIDE
Temozolomide, usually shortened to TMZ, is the chemotherapy most closely associated with standard treatment for newly diagnosed glioblastoma. For appropriate patients it is given alongside radiotherapy and then continued afterwards in treatment cycles. This combined approach is often called the Stupp protocol, after the trial that established it as standard treatment in 2005.
More than twenty years later, surgery where possible followed by radiotherapy and temozolomide remains the backbone of standard NHS treatment for newly diagnosed glioblastoma. That fact still stops me in my tracks.
There has been an enormous amount of research since 2005, and there are clinical trials, newer technologies and experimental approaches being explored, but research existing is not the same as a treatment being routinely available to the person sitting in an NHS consulting room after a glioblastoma diagnosis.
OUR EXPERIENCE OF TEMOZOLOMIDE
Stu took temozolomide every day during his six weeks of radiotherapy. He then had a four-week break before starting the higher-dose adjuvant schedule, taking it for five days followed by 23 days off. Eventually we had to pivot to a different chemotherapy when temozolomide was no longer working.
By this point we were already looking far beyond the standard pathway. We'd started speaking to doctors elsewhere, exploring molecular testing and trying to understand whether the biology of Stu's particular tumour could help us make more individual treatment decisions. This was when the difference between treating glioblastoma as a disease and understanding the particular glioblastoma growing inside Stu's head became very important to me.
WHAT HAPPENS AFTER STANDARD TREATMENT?
This was another thing I didn't understand at diagnosis. I think somewhere in my head I imagined there would always be a clear next treatment. You did treatment A, then treatment B and if that stopped working the doctors moved you on to treatment C. Glioblastoma isn't that tidy.
People are monitored with clinical reviews and MRI scans, and if the tumour progresses or returns, the options depend on things including where the tumour is, previous treatment, performance status, molecular characteristics and the individual person's circumstances.
Further surgery or radiotherapy may sometimes be considered. Chemotherapy options can include drugs such as lomustine or further temozolomide in appropriate circumstances. Clinical trials may also be relevant.
But this is also the point at which many families discover that some of the treatments they've been reading about aren't routinely available through the NHS, aren't suitable for their particular tumour or are only available through a clinical trial, privately or abroad. We learnt that very quickly. And when you're dealing with an aggressive cancer, trying to research all of that after you've been told the current treatment has stopped working is a horrible position to be in.
2026 UPDATE
The science around glioblastoma has moved forward since Stu was diagnosed in 2021. Molecular classification is increasingly important, NHS genomic pathways have developed and researchers are investigating everything from personalised treatments and immunotherapies to new drug combinations and ways of matching treatments more closely to tumour biology.
But the routine treatment available to many newly diagnosed glioblastoma patients remains remarkably familiar. For appropriate patients, maximal safe surgery or biopsy followed by radiotherapy with temozolomide and then further temozolomide is still the backbone of NHS standard treatment. What has changed for me is my understanding of everything that needs to happen around that pathway.
I would want molecular results explained properly. I would ask about whole genome sequencing where appropriate. I would ask what was happening to the tumour tissue before surgery. I would seek another specialist opinion early rather than waiting until we needed one. And I would start learning about trials and other options while standard treatment was still working, rather than assuming we'd have plenty of time to investigate them later. None of that means abandoning standard treatment. It means understanding that standard treatment is one part of a much bigger picture.
HINDSIGHT
WHAT WE KNOW NOW THAT WE WISH WE'D KNOWN THEN
If I could go back to January 2021, I would still want Stu to receive evidence-based treatment, but I would approach those first few weeks very differently. I wouldn't assume that the first medical team we were given represented the only view available to us, or that we needed their permission or approval to look elsewhere.
Our experience with Stu's first NHS team was difficult. We often felt dismissed when we asked about anything beyond the standard pathway, and Stu found his consultant particularly patronising. There were eye rolls when we brought up things we had researched and, when we sought a second opinion, his consultant wanted to write to the doctor we had approached. For us, that rather missed the point. We weren't looking for two doctors to agree with each other. We wanted another specialist to look independently at Stu, his scans and his tumour and tell us what they thought.
We felt really let down at times, both by how limited the standard treatment options for glioblastoma were and by the unwillingness of some of the doctors we encountered to even discuss anything beyond them. That doesn't mean I distrust conventional medicine or the NHS, and it certainly doesn't mean I believe there was a secret cure somewhere that doctors were keeping from us. We subsequently met some extraordinary doctors and nurses, both within the NHS, outside it and outside the UK, who cared for Stu beautifully. What I learnt is that medicine isn't one voice, one doctor doesn't have every answer and access to specialist knowledge shouldn't depend on where you happen to be treated.
With hindsight, I would have sought a second neurosurgical opinion immediately while surgery was still potentially possible, and we would have explored second opinions, repurposed medications and the more extensive molecular testing we eventually pursued through CeCaVa much earlier. I would ask what would happen to the tumour tissue obtained during surgery or biopsy, what would be needed for diagnosis and what could appropriately be retained or preserved for future testing. I would ask for molecular testing and genomic sequencing before we desperately needed the information, find out what clinical trials existed at diagnosis rather than waiting for recurrence and start building the wider team of people we eventually found much earlier. Not because any of those things offered a guaranteed answer, but because with such an aggressive disease I wanted us to understand every reasonable avenue available to Stu rather than discovering them one by one as his options became more limited.
Most of all, I wouldn't assume that if there were other useful questions to ask, someone would automatically tell us. The NHS pathway has boundaries, individual hospitals have different resources and expertise and the clinicians treating you are working within the options available to them. That doesn't mean those are the only questions you can ask or the only opinions you can seek. My hope is that increasingly personalised cancer care, better research and better access to specialist neuro-oncology expertise will give future patients more options than Stu had.
If you're at the beginning now, I'm not suggesting you need to investigate everything or make every possible decision today. A brain tumour diagnosis is overwhelming enough without feeling as though you've suddenly been given another full-time job. But there are some things that are much easier to explore while you still have time and options, and I wish we'd known that sooner. Tumour tissue is one of them. Getting another specialist opinion can be another. You are allowed to ask questions, you are allowed to seek another view and you don't need to feel difficult for doing either.
Ask the questions. Get copies of your reports. Understand what has been tested. Ask whether another opinion would help. Find out what happens next before you desperately need there to be a next. And then make the decisions that are right for you.
CURRENT INFORMATION
The standard treatment pathway for glioblastoma can vary depending on age, general health, performance status, tumour location and molecular characteristics. NICE's current guidance covers surgery, radiotherapy, temozolomide, molecular testing, treatment at recurrence and follow-up. NHS information about malignant brain tumours also explains the main treatment options, including surgery, radiotherapy and chemotherapy.
For tumour tissue specifically, the situation is still developing. In 2026 the Department of Health and Social Care confirmed that fresh-freezing practices vary between pathology services in England and that NHS England has completed a gap analysis of freezer capacity. Work is also underway around tissue-retention guidance, consent and improving access to genomic testing.
The Campaign for Owain's Law is campaigning for suitable brain tumour tissue to be routinely fresh-frozen and for patients to be properly informed about tissue preservation before surgery.
You can also read our pages on Second Opinions, CeCaVa, Repurposed Medications and the other doctors, organisations and treatments we explored during Stu's illness.
This page shares our experience and what I've learnt since. It isn't medical advice and decisions about surgery, tissue handling, testing and treatment need to be discussed with your own neurosurgical, oncology and pathology teams.
standard of care
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