Dr Nadège Presneau’s Haemangiopericytoma Story

From Cancer Researcher to Brain Tumour Patient

Dr Nadège Presneau was a cancer genetics researcher and university lecturer when she began experiencing unexplained exhaustion, headaches, seizures and changes in her personality. In 2019, an emergency CT scan revealed a brain tumour. What followed was six hours of surgery, radiotherapy and a new understanding of what it means to live with a rare diagnosis.

When a Cancer Researcher Became a Brain Tumour Patient

Dr Nadège Presneau had spent much of her professional life studying cancer.

As a senior lecturer specialising in molecular pathology, cancer genetics and genomics at the University of Westminster in London, she understood the science behind cancer diagnoses.

But in 2018, she began experiencing symptoms that she could not explain.

She felt exhausted and unwell almost every day.

Then came headaches, changes in her mood and personality, problems with her balance and episodes of losing consciousness.

At the same time, Nadège was grieving the death of her father from cancer.

She initially wondered whether stress, grief or another health condition might explain what was happening.

But her symptoms continued getting worse.

In early 2019, an excruciating headache during a university teaching session finally led to an emergency hospital visit.

A CT scan revealed a suspicious mass in her brain.

On 7 March 2019, Nadège underwent a six-hour craniotomy to remove the tumour.

Although doctors initially suspected a meningioma, further investigations identified a grade 2 haemangiopericytoma–solitary fibrous tumour (HPC-SFT).

For Nadège, who had spent years studying cancer, suddenly receiving her own molecular pathology report was a very different experience.

Her story demonstrates that even someone with extensive medical and scientific knowledge can find a brain tumour diagnosis frightening and overwhelming.

The First Signs Something Was Wrong in 2018

Nadège’s symptoms began during 2018.

She was feeling unusually tired and generally unwell.

Because of her background in cancer research, she was particularly aware that unexplained symptoms sometimes need further investigation.

She visited her GP and underwent blood tests.

These revealed low thyroid hormone levels.

After discussing the results with her doctor, Nadège began thyroid hormone replacement treatment.

However, her exhaustion continued.

Around the same time, a pelvic ultrasound revealed an endometrial polyp.

Surgery was arranged to remove it later that year.

Nadège hoped that investigating and treating these medical conditions might help explain why she was feeling so unwell.

But the situation was becoming more complicated.

Her father had died from cancer, and she was struggling emotionally with the loss.

Then, just weeks later, she experienced an episode that she would only later recognise as a seizure.

The Seizure Nadège Did Not Recognise

Towards the end of September 2018, Nadège suddenly lost consciousness in her kitchen.

It was a frightening experience.

She went directly to her GP, hoping to understand what had happened.

However, an urgent brain scan was not arranged.

Blood tests identified anaemia, and she was prescribed iron tablets.

At the time, Nadège did not realise that the episode of losing consciousness had been a seizure.

Looking back, she recognised it as an important warning sign.

Her symptoms continued.

She felt increasingly anxious and depressed, and she began noticing changes in her personality.

Because she had recently lost her father, Nadège initially attributed some of these changes to grief and the pressures of work.

It was an understandable explanation.

But something else was happening.

When Her Personality Began to Change

By late 2018, Nadège was struggling with more than physical exhaustion.

Her emotions were changing.

She felt increasingly depressed, anxious and unlike herself.

For someone who had previously managed a demanding academic career, these changes were unsettling.

In November 2018, she underwent surgery at University College Hospital London to remove the endometrial polyp.

The operation went well, and the pathology confirmed that the polyp was benign.

However, the surgery did not resolve her other symptoms.

Her headaches continued.

She also developed worsening balance problems and bladder difficulties, including incontinence.

Over time, her coordination deteriorated.

Nadège became increasingly clumsy, sometimes tripping on stairs or falling while cycling.

She also experienced further seizures, although their cause had not yet been identified.

By early 2019, her personality changes were becoming more obvious at work.

She sometimes burst into tears while teaching.

Nadège knew something was wrong, but she still did not have an explanation.

The Headache That Finally Led to a Brain Scan

The turning point came during a university teaching session in early 2019.

Nadège developed an excruciating headache.

The pain was unlike her usual discomfort, and ibuprofen provided no relief.

Her colleague and friend Miriam recognised that she needed medical attention.

Miriam took her to the accident and emergency department.

At the hospital, doctors arranged a CT scan.

The results revealed a suspicious mass in Nadège’s brain.

After months of exhaustion, seizures, headaches and changes in her behaviour, she finally had an explanation.

But the news was frightening.

The following day, Nadège was transferred by ambulance to the National Hospital for Neurology and Neurosurgery at Queen Square in London.

She was now preparing for major brain surgery.

Initially Thought to Be a Meningioma

When Nadège’s tumour was first discovered, doctors believed it might be a meningioma.

Meningiomas are tumours that develop from the membranes surrounding the brain and spinal cord.

Because some haemangiopericytomas and solitary fibrous tumours can appear similar to meningiomas on scans, distinguishing between them may require examination of the tumour tissue.

For Nadège, the final diagnosis was not yet known.

Her immediate priority was surgery.

On Thursday, 7 March 2019, she underwent a craniotomy.

The operation lasted approximately six hours.

Her surgeons achieved a total resection, meaning they removed all the tumour that was visible.

This was an important milestone.

However, Nadège would soon discover that the tumour was not the type doctors had originally suspected.

The Molecular Pathology Report That Changed Everything

Following surgery, Nadège was contacted by the oncology team.

She received her molecular pathology report.

For most patients, a pathology report contains unfamiliar medical terminology that needs explaining.

But Nadège was a specialist in molecular pathology and cancer genetics.

She understood the scientific language.

She knew what tumour classification meant, why different diagnoses behaved differently and how the findings could influence treatment.

That knowledge was helpful.

But it was also frightening.

The report identified a grade 2 haemangiopericytoma–solitary fibrous tumour, rather than a meningioma.

Nadège was told that her tumour required further treatment because of the risk of recurrence and spread.

For a scientist whose work involved studying cancer, receiving this information about her own brain tumour was an extraordinary reversal of roles.

She was no longer simply interpreting cancer research or teaching students about molecular pathology.

She was the patient.

When Medical Knowledge Can Make Diagnosis More Frightening

Nadège described her professional background as both helpful and difficult.

Her scientific knowledge allowed her to ask detailed questions and understand the information her clinicians provided.

But it also meant she was more aware of the possible complications and uncertainties.

Sometimes, knowing more made her feel more frightened.

It is an important part of her story.

We might assume that healthcare professionals and scientists feel more confident when they become patients themselves.

But understanding the medical facts does not remove the emotional impact of receiving a serious diagnosis.

For Nadège, being knowledgeable did not mean she was immune to fear.

Radiotherapy Following Brain Tumour Surgery

Although surgeons had removed all the visible tumour, Nadège’s medical team recommended radiotherapy.

The purpose was to reduce the risk of the tumour returning.

She described undergoing a course of radiotherapy following her operation, with treatment completed in mid-November 2019.

Before treatment, Nadège had been anxious about what radiotherapy would involve.

However, she found the experience less frightening than she had anticipated.

She felt she had coped relatively well.

Fatigue remained an important side effect.

But despite the exhaustion, Nadège was determined to return to her work.

By the beginning of December 2019, she felt well enough to resume her position as a university lecturer.

For someone whose academic career was such an important part of her life, returning to teaching and research was a significant achievement.

Returning to Work After Brain Tumour Treatment

Following surgery and radiotherapy, Nadège returned to her work in cancer genomics, genetics and molecular pathology.

She also continued her breast cancer research.

Her diagnosis had given her an entirely different perspective on the subject she had spent years studying.

Cancer was no longer something she understood only through laboratory research, pathology reports or scientific publications.

She now knew what it was like to experience the uncertainty of diagnosis and treatment herself.

Nadège was grateful that she had survived surgery and had not experienced more severe neurological disabilities.

But this did not mean her life had returned entirely to the way it was before.

She continued living with focal epileptic seizures.

And the possibility of tumour recurrence remained a source of anxiety.

Living With Focal Seizures After Brain Surgery

One of the lasting effects of Nadège’s brain tumour was epilepsy.

She required medication to manage focal seizures.

A focal seizure begins in a specific area of the brain and can cause different symptoms depending on the region involved.

Not every focal seizure causes a complete loss of consciousness.

Some people remain aware during an episode, while others experience altered awareness, movements or unusual sensations.

For Nadège, seizures were a continuing reminder of everything she had experienced.

Even though her treatment had finished and she had returned to work, she was still managing a neurological condition.

Her experience highlights something that many brain tumour survivors understand.

Finishing treatment does not always mean the end of the medical and emotional effects of a diagnosis.

The Anxiety of Waiting for MRI Results

Nadège also spoke openly about the anxiety surrounding follow-up scans.

Solitary fibrous tumours of the central nervous system can recur, sometimes years after treatment.

Regular surveillance is therefore important.

For Nadège, knowing that the tumour might return made each MRI scan emotionally difficult.

She understood why monitoring was necessary.

But that knowledge did not make the waiting easier.

The period between a scan and receiving its results could bring uncertainty about the future.

This is an experience many brain tumour patients describe as scanxiety, or scan anxiety.

Some people find it most difficult immediately before the scan.

Others struggle while waiting for results.

For Nadège, the ongoing possibility of recurrence meant she could not completely put her diagnosis behind her.

How a Brain Tumour Changed Nadège’s Outlook on Life

After surgery and radiotherapy, Nadège began looking at life differently.

She felt grateful to be alive.

Having experienced serious illness herself, and having previously lost her father to cancer, she had become more aware of how uncertain life could be.

She tried not to allow everyday frustrations to upset her as much as they once had.

Things that might previously have seemed important no longer carried the same weight.

Instead, she wanted to appreciate the life she had.

Nadège spoke about trying to enjoy each day rather than taking the future for granted.

Her outlook was not about pretending that everything was fine.

She continued experiencing anxiety about scans and managing her seizures.

But she also recognised how precious ordinary life could be.

When Her Sister Was Also Diagnosed With a Tumour

One particularly striking part of Nadège’s experience involved her sister.

Approximately a year after Nadège’s own diagnosis, her sister was diagnosed with a spinal cord meningioma.

Nadège’s increased awareness of neurological symptoms helped her support her sister when she became unwell.

For Nadège, this reinforced the importance of recognising concerning symptoms and seeking appropriate medical advice.

She had already experienced the difficulty of living with worsening symptoms before receiving a diagnosis.

Now someone else in her family was facing a tumour affecting the central nervous system.

It strengthened Nadège’s determination to raise awareness.

However, their two diagnoses should not automatically be assumed to have a shared genetic cause.

Haemangiopericytoma–solitary fibrous tumour and meningioma are distinct tumour types, and the diagnoses alone do not establish an inherited condition.

Using Her Experience to Raise Brain Tumour Awareness

Following her diagnosis, Nadège became increasingly interested in helping other people affected by brain tumours.

Her scientific background had already made cancer research central to her professional life.

But becoming a patient gave that work additional personal meaning.

She wanted to contribute to the discovery of better treatments and a greater understanding of rare tumours like hers.

She also wanted to encourage people to take unusual or worsening symptoms seriously.

Nadège’s own experience had involved months of exhaustion, seizures, headaches, balance difficulties and emotional changes before the tumour was discovered.

She hoped that sharing her story might encourage others to seek medical advice when something did not feel right.

Her message was not that every headache or personality change indicates a brain tumour.

It was that persistent, progressive or unexplained symptoms deserve proper assessment.

Nadège’s Advice for People Facing a Rare Brain Tumour Diagnosis

When Nadège was asked what advice she would give to someone facing a frightening diagnosis, she emphasised the importance of connection.

Don’t Try to Face Everything Alone

A rare brain tumour diagnosis can feel isolating.

There may be unfamiliar medical terms, uncertainty about treatment and difficulty finding people with similar experiences.

Nadège encouraged patients to speak with others rather than keeping everything to themselves.

Find People With the Same Diagnosis

Because haemangiopericytoma–solitary fibrous tumour is rare, it can be difficult to meet someone who understands the diagnosis.

Nadège found online support groups helpful, including Facebook communities for people with the same type of tumour.

Sharing experiences can provide reassurance and opportunities to ask practical questions.

However, medical decisions should always be made with an appropriate specialist team.

Ask Questions and Seek Reliable Information

Nadège’s professional knowledge helped her understand her pathology report and communicate with her clinicians.

Not everyone has that background.

But every patient deserves clear explanations of their diagnosis, tumour grade, treatment options and follow-up care.

It is reasonable to ask questions, take notes or bring someone you trust to appointments.

Take New or Worsening Symptoms Seriously

Nadège also encouraged people to recognise when symptoms are changing or becoming more severe.

Persistent headaches, unexplained seizures, progressive weakness or changes in neurological function should be assessed by a healthcare professional.

For someone experiencing a first seizure or sudden severe neurological symptoms, urgent medical assessment is particularly important.

Why Dr Nadège Presneau’s Story Matters

Nadège’s story began in 2018, when she started experiencing fatigue and feeling generally unwell.

Her initial investigations revealed thyroid and blood-related abnormalities.

At the same time, she was grieving the death of her father.

As her symptoms progressed, she experienced seizures, severe headaches, balance problems, bladder difficulties and changes in her personality.

But it was not until an excruciating headache during a teaching session that an emergency CT scan revealed a brain tumour.

In March 2019, Nadège underwent six hours of surgery.

Although the tumour was initially suspected to be a meningioma, pathology identified a grade 2 haemangiopericytoma–solitary fibrous tumour.

She subsequently received radiotherapy and returned to teaching and cancer research.

Her life continued, but it was different.

She needed medication for focal seizures.

She experienced anxiety about future MRI results.

And she had developed a much more personal understanding of the uncertainty that accompanies a cancer diagnosis.

What makes Nadège’s story particularly important is that being a cancer researcher did not prevent her from experiencing the fear, confusion and uncertainty of becoming a patient.

Her scientific knowledge helped her understand the diagnosis, but it could not remove the emotional challenges.

Today, her original account remains a valuable reminder of why brain tumour awareness, research and patient support all matter.

Thank you to Dr Nadège Presneau for sharing her experiences with Aunty M Brain Tumours and helping others understand the reality of living with a rare haemangiopericytoma–solitary fibrous tumour.

This article reflects Nadège’s experiences following her 2019 diagnosis and treatment. It is not an update on her current health, treatment or professional circumstances.

What Is a Haemangiopericytoma (Solitary Fibrous Tumour)?

A haemangiopericytoma, now generally classified as a solitary fibrous tumour (SFT), is a rare tumour that can occur in the membranes surrounding the brain and spinal cord.

These tumours belong to a different family from meningiomas, although their appearance on MRI scans can sometimes be similar.

The name used for this tumour has changed over time.

• Historically, some tumours were called haemangiopericytomas.
• In 2016, the WHO classification used the combined term solitary fibrous tumour/haemangiopericytoma.
• In 2021, the WHO adopted solitary fibrous tumour as the preferred name.

This means people diagnosed several years ago may have been given terminology that differs from what specialists use today.

Nadège’s original diagnosis was grade 2 haemangiopericytoma–solitary fibrous tumour.

Her historical diagnosis has been preserved in this story.

Is a Haemangiopericytoma Cancerous?

Solitary fibrous tumours of the central nervous system can behave differently depending on their grade and biological characteristics.

They may be classified as CNS WHO grade 1, 2 or 3.

Some grow relatively slowly, while others have a greater risk of recurrence or spread.

A tumour that has been completely removed may still require long-term monitoring.

Your specialist team can explain the meaning of your particular pathology findings and tumour grade.

What Are the Symptoms of a Haemangiopericytoma?

Symptoms depend on the tumour’s location, size and effect on nearby brain or spinal cord structures.

Possible symptoms include:

• Persistent or worsening headaches
• Seizures
• Balance or coordination problems
• Changes in mood, personality or behaviour
• Weakness or altered sensation
• Cognitive or concentration difficulties
• Visual problems
• Bladder or bowel symptoms in some circumstances

For Nadège, symptoms included seizures, headaches, personality changes, imbalance and bladder difficulties.

These symptoms have many possible causes and do not automatically indicate a tumour.

However, progressive neurological symptoms require medical assessment.

How Is a Solitary Fibrous Tumour Treated?

Treatment depends on the tumour’s location, grade, whether it can be safely removed and the person’s individual circumstances.

Options may include:

• Surgery to remove as much tumour as safely possible
• Radiotherapy in selected cases
• Regular MRI scans for long-term monitoring
• Further treatment if the tumour recurs

Because some solitary fibrous tumours can recur or spread, long-term specialist follow-up is important.

Treatment decisions should be made by a multidisciplinary team experienced in managing rare central nervous system tumours.

Read More Rare Brain Tumour Stories

Every brain tumour story is different.

Some people are diagnosed after seizures or headaches. Others discover their tumour unexpectedly during investigations for another condition.

Treatment, recovery and long-term effects also vary.

Explore more brain tumour survivor stories on Aunty M Brain Tumours

If you have been diagnosed with a haemangiopericytoma or solitary fibrous tumour, hearing about Nadège’s experiences may help you feel less alone.

However, another person’s diagnosis or outcome does not determine what will happen to you.

If You Have Recently Been Diagnosed With a Haemangiopericytoma

If you have landed on this page after receiving a haemangiopericytoma or solitary fibrous tumour diagnosis, please know you are not alone.

You may be trying to understand why your pathology report uses a different name from the one you have found online.

You may also have questions about surgery, radiotherapy, recurrence and long-term MRI monitoring.

Every person’s experience is different.

Some people undergo surgery and require regular scans. Others need additional treatment or ongoing support for neurological symptoms.

Try not to compare your journey too closely with anyone else’s.

Reading personal experiences can offer comfort, but treatment and outcomes depend on individual medical circumstances.

Ask your specialist team about your precise diagnosis, grade, treatment options and follow-up plan.

Take things at your own pace, and remember that support is available.

Where to Go After a Haemangiopericytoma Diagnosis?

If you or someone you care about has been diagnosed with a solitary fibrous tumour or haemangiopericytoma, these organisations can provide information and support.

The Brain Tumour Charity

Provides information about brain tumour diagnosis, treatment, living with a brain tumour and long-term effects.

It also offers support for patients, families and carers.

Visit The Brain Tumour Charity

Brainstrust

Offers personalised emotional and practical support for people living with brain tumours.

Its services include information, coaching and help managing uncertainty around diagnosis and follow-up scans.

Visit Brainstrust

Brain Tumour Support

Provides practical and emotional support for people affected by brain tumours, including their loved ones.

Visit Brain Tumour Support

Brain Tumour Research

Funds research into brain tumours and campaigns for greater awareness, scientific investment and improved treatments.

Visit Brain Tumour Research

National Cancer Institute

Provides information about brain and central nervous system tumours, specialist treatment and research.

Visit the National Cancer Institute

NHS Neuro-Oncology and Neurology Services

Your specialist medical team can help explain your tumour grade, pathology results, treatment options and follow-up MRI schedule.

Depending on your needs, additional support may include:

• Neurology or epilepsy services for seizures
• Psychological support for anxiety and scan-related worries
• Neuropsychology for memory or concentration difficulties
• Physiotherapy or occupational therapy
• Clinical nurse specialist support
• Specialist review of any new or changing neurological symptoms

Ask your GP, specialist nurse or neuro-oncology team about appropriate referrals.

Would You Like to Share Your Rare Brain Tumour Story?

At Aunty M Brain Tumours, I believe every person’s experience deserves to be heard.

Whether you have recently been diagnosed, undergone surgery or radiotherapy, are living with long-term effects or attending regular scans, your experiences could help someone else feel less alone.

Find out how to share your brain tumour story

Medical disclaimer: This article shares Nadège’s personal experiences and provides general information for awareness and peer support. It does not replace individual medical advice, diagnosis or treatment from a qualified healthcare professional.