Will Roth had no warning that something was wrong until an unexpected seizure in 2016 led to the discovery of a grade 3 anaplastic astrocytoma. What followed was brain surgery, radiotherapy, chemotherapy and the challenge of managing severe fatigue. In this interview with Aunty M Brain Tumours, Will shares how treatment, palliative care, fertility decisions and support from those around him shaped his experience of living beyond brain cancer.

The Seizure That Changed Everything

Sometimes, a brain tumour diagnosis arrives without any obvious warning.

For Will Roth, life had seemed perfectly normal. He had not been experiencing symptoms that suggested he was living with a brain tumour.

Then, in 2016, he experienced an unexpected seizure.

One moment, he was living his ordinary life. The next, he was facing investigations that would reveal something he had never imagined.

Will was diagnosed with a grade 3 anaplastic astrocytoma, a type of high-grade brain tumour.

Suddenly, there were decisions to make about treatment, surgery and what the diagnosis could mean for his future.

For somebody who had previously felt well, the discovery was an enormous change.

But as Will explains in our interview, the diagnosis itself was only the beginning of what he would have to navigate.

Watch Will Share His Brain Tumour Story

Will joined me on the Aunty M Brain Tumours Talk Show to talk about his diagnosis, surgery, treatment and the challenges that followed.

In our conversation, we discuss the physical and emotional impact of a high-grade brain tumour, the importance of palliative care in managing treatment side effects, and why conversations about fertility should happen before treatment begins.

Watch Will’s full interview below, or continue reading his story. Watch on YouTube: https://youtu.be/Keyin6orOa4

Being Diagnosed With a Grade 3 Anaplastic Astrocytoma

Following his seizure, medical investigations revealed that Will had a grade 3 anaplastic astrocytoma.

Anaplastic astrocytoma was the terminology used for his tumour when he was diagnosed in 2016.

The diagnosis meant Will was dealing with a high-grade tumour that required specialist treatment.

He underwent brain surgery, but the operation was not the end of his treatment.

His medical team also recommended radiotherapy and chemotherapy.

For someone who had not experienced warning symptoms beforehand, there was a great deal to take in.

Brain tumour treatment can involve difficult decisions, uncertainty and the prospect of side effects that may affect everyday life long after an operation.

Will’s experience is a reminder that a diagnosis does not always follow months of obvious symptoms.

Sometimes a seizure is the first indication that something serious is happening.

Brain Surgery and Preparing for Further Treatment

Brain surgery was an important part of Will’s treatment.

Surgery for a high-grade astrocytoma generally aims to remove as much tumour as is safely possible while protecting healthy brain tissue.

However, astrocytomas can grow into surrounding brain tissue, meaning additional treatment is often needed even after an operation.

For Will, the next stages involved radiotherapy and chemotherapy.

These treatments were intended to help manage his brain tumour, but they also brought challenges of their own.

We often focus on the operation when discussing brain tumours, yet the weeks and months that follow can be equally important.

There may be repeated hospital appointments, periods of treatment, changes to daily routines and uncertainty about how someone will feel from one day to the next.

Will discovered that some of the hardest parts of his experience were not necessarily the things people could see.

Radiotherapy, Chemotherapy and the Fatigue That Followed

One of the most difficult side effects Will experienced was fatigue.

Fatigue associated with cancer and its treatment is not always the same as feeling tired after a busy day.

It can be persistent, overwhelming and difficult to relieve through ordinary rest.

For Will, fatigue became one of the toughest parts of undergoing treatment.

Radiotherapy and chemotherapy were important parts of his care, but managing their side effects was also essential.

This is something many people affected by brain tumours will recognise.

Family and friends may see somebody who has completed treatment or appears physically well and assume that life can return to normal.

But the impact of treatment can continue long afterwards.

Activities that once seemed straightforward may require more planning, rest or support.

Will’s experience shows why managing fatigue and other treatment effects deserves just as much attention as the treatment itself.

Why Palliative Care Made a Difference

One of the most important subjects Will discusses in our interview is palliative care.

It is a term that can frighten people, particularly when they associate it only with end-of-life care.

But palliative care can also be provided alongside active cancer treatment.

Its purpose is to improve quality of life by helping people manage symptoms and the physical, emotional and practical difficulties associated with serious illness.

For Will, palliative care became an important part of managing the side effects of treatment, particularly his fatigue.

Rather than focusing only on the tumour, this support addressed how Will was actually feeling and coping day to day.

That is an important distinction.

Treating a brain tumour and helping someone live as well as possible during treatment are both essential parts of care.

Will’s experience highlights why patients should feel comfortable asking what additional help is available when side effects become difficult to manage.

Palliative care is not simply about dying. It can also be about helping someone live more comfortably while receiving treatment.

Fertility Preservation: An Important Conversation Before Treatment

Another significant part of Will’s experience involved fertility preservation.

Before beginning treatment, Will and his medical team discussed the potential impact that cancer treatment could have on his future fertility.

This gave him an opportunity to consider his options before treatment began.

It is an aspect of brain tumour care that can sometimes be overlooked when everything is moving quickly.

When someone is facing a serious diagnosis, the immediate focus is understandably on treating the tumour.

But decisions made at the beginning of treatment can also affect life many years afterwards.

Some chemotherapy medicines and other cancer treatments can affect fertility.

For patients who may want children in the future, discussing fertility preservation before treatment is especially important.

Options depend on the individual’s circumstances and the treatment being planned.

Will’s experience is a reminder that patients should be given the opportunity to ask these questions, even when starting a family is not something they are thinking about immediately.

It is about having information and choices at a time when so much else may feel outside your control.

The Importance of Family, Friends and a Good Medical Team

Will speaks with gratitude about the people who supported him throughout his diagnosis, treatment and recovery.

His family, friends and healthcare team all played important roles.

A brain tumour diagnosis affects more than the person receiving treatment.

Family members may suddenly find themselves attending appointments, helping with daily activities, providing emotional reassurance and dealing with uncertainty about what lies ahead.

Friends can also make a difference through practical help, companionship and simply being available.

For Will, knowing he had people around him was important during some of the most challenging periods.

His experience shows how valuable it is to have support that goes beyond the medical treatment itself.

Sometimes that support is practical.

Sometimes it is emotional.

And sometimes it is simply having someone there who understands that you are going through something difficult.

Eight Years Later: Living With Clear Scans

One of the most encouraging parts of Will’s interview is the update he shares about his life following treatment.

At the time of our conversation, approximately eight years after his 2016 diagnosis, Will reported that his follow-up scans had remained clear.

After everything he had experienced, this was an important milestone.

It does not erase the fear, treatment or difficult side effects that came before it.

But it is a meaningful part of his experience.

For someone who was diagnosed unexpectedly after a seizure, the years that followed brought not only treatment but also the opportunity to reflect on everything he had been through.

Will expresses gratitude for the medical professionals and loved ones who helped him reach that point.

His experience also reminds us why it is important to share a range of brain tumour stories.

Some people are newly diagnosed.

Others are undergoing treatment.

Some are living with ongoing effects.

And others, like Will at the time of our interview, are able to look back over several years of follow-up scans and reflect on their journey.

Every experience is different, but each can contribute something valuable to the wider brain tumour community.

Finding Hope Through Brain Tumour Awareness

Will’s story is not just about what happened medically.

It is also about the importance of support, advocacy and continued research into brain tumours.

When somebody receives a diagnosis such as an anaplastic astrocytoma, information about the tumour can feel frightening or overwhelming.

Hearing another person’s experience may provide understanding, although their treatment or outcome cannot predict what will happen to someone else.

Will’s experience highlights the importance of access to specialist treatment, support for treatment side effects and conversations about life beyond the initial diagnosis.

He also shares his hope for continuing progress in brain tumour research.

These are important conversations for our community.

We need better treatments, but we also need people to receive the practical and emotional support that helps them live well during and after treatment.

About Will’s Tumour: What Is an Anaplastic Astrocytoma?

Will was diagnosed with an anaplastic astrocytoma, grade 3, in 2016.

An astrocytoma is a type of glioma, a tumour that develops from cells within the brain or spinal cord.

Anaplastic astrocytoma was historically the name given to certain grade 3 astrocytic tumours.

Grade 3 tumours are considered high-grade and generally grow more aggressively than grade 2 tumours.

Modern brain tumour classification uses molecular information as well as the appearance of tumour cells under a microscope.

For example, some tumours previously called anaplastic astrocytomas are now classified as astrocytoma, IDH-mutant, CNS WHO grade 3.

However, not every tumour historically labelled anaplastic astrocytoma has the same molecular characteristics.

Because Will was diagnosed in 2016, his original terminology has been retained in this article. His precise modern classification would depend on his pathology and molecular test results.

What Are the Symptoms of an Anaplastic Astrocytoma?

Symptoms depend on the location, size and behaviour of the tumour.

Possible symptoms include:

Seizures, which may be the first noticeable symptom
Persistent or worsening headaches
Nausea or vomiting
Weakness or changes in movement
Speech or language difficulties
Memory and concentration changes
Vision problems
Changes in behaviour, mood or personality

Will experienced an unexpected seizure that led to the discovery of his tumour.

Not everyone experiences the same warning signs, and many of the symptoms listed above can have causes unrelated to a brain tumour.

A first seizure or sudden stroke-like symptoms require emergency medical assessment.

How Is a Grade 3 Astrocytoma Treated?

Treatment is planned by a specialist team based on the tumour’s location, molecular characteristics and the person’s individual circumstances.

Brain surgery: Surgeons may aim to remove as much of the tumour as they safely can.

Radiotherapy: Radiation treatment may be recommended to target remaining tumour cells after surgery.

Chemotherapy: Medicines such as temozolomide may be used, depending on the tumour’s precise classification and treatment plan.

MRI monitoring: Regular scans help the medical team assess treatment response and monitor for changes.

Supportive and palliative care: Specialist support can help manage fatigue, pain, seizures, nausea, emotional distress and other difficulties associated with treatment.

Treatment options have developed since Will’s diagnosis, so newly diagnosed patients should discuss their specific pathology and current treatment recommendations with their neuro-oncology team.

Managing Fatigue After Brain Tumour Treatment

Will’s experience with treatment-related fatigue is particularly important because it is something many people continue to struggle with after surgery, radiotherapy or chemotherapy.

Cancer-related fatigue can affect energy, concentration, physical stamina and everyday independence.

It may not improve simply by sleeping longer.

Possible ways of managing fatigue include discussing symptoms with your medical team, identifying treatable causes, planning activities around energy levels and considering specialist rehabilitation.

Some people may benefit from individually tailored physical activity, while others need help managing cognitive fatigue or adjusting work and daily routines.

There is no single solution that works for everyone.

If fatigue is affecting your quality of life, you can ask your GP, oncology team or specialist nurse whether additional support is available.

Will’s experience demonstrates why patients should not feel they simply have to put up with difficult side effects.

Fertility and Brain Tumour Treatment: Questions Worth Asking

Fertility may not be the first thing someone thinks about after receiving a brain tumour diagnosis.

However, certain cancer treatments can affect reproductive health.

If you are preparing to start chemotherapy or radiotherapy and may want children in the future, it is worth discussing fertility preservation with your specialist team before treatment begins.

Questions you may wish to ask include:

Could my treatment affect my fertility?
Are fertility preservation options available?
Can I speak to a fertility specialist before treatment?
Are there time limits for making these decisions?
What are the potential costs and eligibility requirements?

Will’s experience is a reminder that these conversations matter.

They are not only about what happens during treatment, but also about protecting future choices wherever possible.

Where to Find Support After an Astrocytoma Diagnosis

If you or someone you love has been diagnosed with an anaplastic astrocytoma, there are organisations that can provide information and support.

The Brain Tumour Charity

Website: https://www.thebraintumourcharity.org/

Provides information about astrocytoma, brain tumour treatment, rehabilitation and living with a diagnosis.

The charity also offers practical and emotional support to patients, families and carers.

Brainstrust

Website: https://brainstrust.org.uk/

Provides personalised support for people living with brain tumours.

Brainstrust can help people navigate treatment decisions, prepare for appointments and find support during and after treatment.

Brain Tumour Support

Website: https://www.braintumoursupport.co.uk/

Offers emotional and practical support for people affected by brain tumours, including individual support and opportunities to connect with others.

Macmillan Cancer Support

Website: https://www.macmillan.org.uk/

Provides information and support around cancer treatment, fatigue, finances, emotional wellbeing and everyday life.

Macmillan also has resources about fertility and cancer treatment.

Brain Tumour Research

Website: https://braintumourresearch.org/

Funds brain tumour research and campaigns for improved treatments, awareness and greater investment in research.

Fertility and Specialist Support

If you are concerned about fertility before or after treatment, speak to your oncology team about a referral to an appropriate fertility service.

You can also ask about symptom management, cancer rehabilitation or palliative care support if treatment side effects are affecting your daily life.

Will’s Story: Why Support Matters Beyond Treatment

Will’s experience began with a sudden seizure and a diagnosis he had not seen coming.

What followed was brain surgery, radiotherapy and chemotherapy.

But his journey also brought attention to parts of brain tumour care that are not always discussed enough.

The fatigue that can follow treatment.

The importance of palliative care.

The difficult conversations about fertility and future plans.

And the people who stand beside you when life changes.

At the time of our interview, Will was reflecting on eight years since his diagnosis and the significance of his clear follow-up scans.

His experience offers one perspective on living beyond high-grade brain tumour treatment.

For me, one of the most valuable messages in Will’s story is that treating the tumour is only part of caring for the person.

The support someone receives throughout treatment and recovery can matter enormously.

That is why sharing these conversations is so important.

Every brain tumour story deserves to be heard.

This article shares Will Roth’s experience as described in his original interview. The medical information is provided for general awareness and does not replace advice from a specialist healthcare professional.

Claire Bullimore

Claire Bullimore is an influential figure in the brain tumour community. She embarked on her brain tumour journey and was diagnosed with an intraventricular meningioma. In response to her experiences, Claire founded ‘Aunty M Brain Tumours,’ a platform dedicated to sharing brain tumour stories. Based in London, England, Claire also identifies as a blogger and speaker for Aunty M Brain Tumours, shedding light on the challenges faced by those diagnosed and amplifying their voices for better awareness and support. Through her dedication and advocacy, Claire’s efforts have been recognized by Brain Tumour Research and other organizations, spotlighting her commitment to making a positive difference for individuals impacted by brain tumours.

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Will’s Anaplastic Astrocytoma Story