Jenny shares her experience of living with a grade 3 anaplastic astrocytoma, undergoing three brain surgeries and facing the challenges of treatment and recovery.
Being diagnosed with a brain tumour can change your life in ways you never expected. Alongside the diagnosis itself, there are decisions about treatment, concerns about surgery and questions about what life might look like afterwards.
For Jenny, her journey with an anaplastic astrocytoma, a grade 3 brain tumour, included undergoing three brain surgeries.
When Jenny joined me on the Aunty M Brain Tumours Talk Show, we spoke about her diagnosis, treatment and recovery, and what it means to live with the challenges a brain tumour can bring.
Her experience is an important addition to the astrocytoma stories shared here at Aunty M Brain Tumours. Although people may receive the same diagnosis, each person’s circumstances, treatment and recovery can be very different.
Watch Jenny tell her story in full in the Aunty M Brain Tumours Talk Show interview below, or keep reading for the written version
In this interview, Jenny shares her personal experience of being diagnosed with an anaplastic astrocytoma and undergoing three brain surgeries.
We discuss treatment, recovery and some of the challenges that can come with living with a high-grade brain tumour.
You can watch our conversation above or continue reading to learn more about anaplastic astrocytoma and where to find support.
Living With a Grade 3 Anaplastic Astrocytoma
An anaplastic astrocytoma diagnosis can bring a great deal of uncertainty.
There are questions about what the tumour’s grade means, whether surgery is possible, what additional treatment might be needed and how the diagnosis may affect everyday life.
For Jenny, one of the most significant parts of her experience was undergoing three separate brain operations.
Having brain surgery is a major event. Facing further operations can bring additional challenges, particularly when someone is also recovering physically and emotionally from earlier treatment.
Jenny speaks about her surgical experiences in our interview, offering an opportunity to hear about these challenges directly from someone who has been through them.
Three Brain Surgeries and the Road to Recovery
Brain surgery is often only one part of treating an astrocytoma.
Depending on the tumour, its location and how it responds to treatment, some patients may need further operations or other therapies.
Jenny’s experience involved three brain surgeries, making treatment and recovery an important part of her story.
Recovery can look different for everybody. Some people may need support with fatigue, movement, memory, concentration or other neurological difficulties. Others may experience different physical and emotional challenges.
Not everyone will have these difficulties, and Jenny’s individual experiences are best understood through her interview.
What her story reminds us is that recovery does not necessarily finish when someone leaves hospital.
For many patients, adjusting to life afterwards is an important part of the journey.
Life Beyond a Brain Tumour Diagnosis
A brain tumour diagnosis can affect much more than a person’s medical appointments.
It may influence relationships, confidence, independence, work and plans for the future.
There can also be uncertainty surrounding follow-up scans, treatment decisions and the possibility of needing further care.
These experiences are not always visible to people on the outside.
That is one of the reasons I believe it is so important to share personal brain tumour stories.
We can read about symptoms and treatments in medical information, but hearing somebody describe their own experience can help others understand the human side of a diagnosis.
Jenny’s interview adds another voice to that conversation.
About Jenny’s Tumour: What Is an Anaplastic Astrocytoma?
An anaplastic astrocytoma is a term historically used to describe certain grade 3 astrocytic brain tumours.
Astrocytomas belong to a group of tumours called gliomas, which develop from glial cells in the brain or spinal cord.
Grade 3 astrocytomas are considered high-grade tumours. They generally grow more aggressively than grade 2 astrocytomas and usually require specialist treatment and ongoing monitoring.
Modern classification also considers the tumour’s molecular characteristics, including its IDH mutation status.
For example, some tumours previously described as anaplastic astrocytomas are now classified as astrocytoma, IDH-mutant, CNS WHO grade 3.
However, not every tumour historically called anaplastic astrocytoma has that classification. The precise diagnosis depends on pathology and molecular testing.
Jenny’s interview uses the term anaplastic astrocytoma, so that is the terminology used in her story.
What Are the Symptoms of an Anaplastic Astrocytoma?
Symptoms depend on the size and location of the tumour and which areas of the brain are affected.
Possible symptoms include:
Headaches
Seizures
Nausea or vomiting
Changes in vision
Weakness or changes in movement
Speech or language difficulties
Memory and concentration problems
Changes in mood, behaviour or personality
Not everybody experiences the same symptoms, and many of these problems can have causes unrelated to a brain tumour.
New or worsening neurological symptoms should be discussed with a healthcare professional. A first seizure or sudden stroke-like symptoms require emergency medical attention.
How Is a Grade 3 Astrocytoma Treated?
Treatment depends on the tumour’s location, molecular characteristics, previous treatment and the person’s general health.
Possible approaches include:
Brain surgery: Neurosurgeons may aim to remove as much of the tumour as possible without causing unacceptable damage to healthy brain tissue.
Radiotherapy: Radiation may be recommended after surgery to treat remaining tumour cells.
Chemotherapy: Medicines such as temozolomide may be recommended for certain tumour types, depending on the pathology and specialist treatment plan.
MRI monitoring: Regular scans help the medical team assess the tumour and monitor the response to treatment.
Rehabilitation: Physiotherapy, occupational therapy, speech and language therapy or psychological support may be helpful for people experiencing changes after surgery or treatment.
Each person’s treatment plan is individual. Someone else’s treatment or outcome cannot predict what will happen to another patient.
Where to Find Support After an Astrocytoma Diagnosis
If you or somebody you love has been diagnosed with an astrocytoma, you may have questions about treatment, recovery and what happens next.
You do not have to find all the answers immediately.
Alongside your specialist medical team, several organisations provide information and support.
The Brain Tumour Charity
Offers information about astrocytoma diagnosis and treatment, along with practical and emotional support for patients and families.
Provides personalised support and guidance for people living with brain tumours, including help navigating treatment decisions and everyday challenges.
Your specialist team can provide information about your particular diagnosis, treatments and follow-up care.
If you are experiencing fatigue, seizures, problems with movement, speech, memory or emotional wellbeing, ask about appropriate rehabilitation or specialist support.
Read More Astrocytoma Stories
At Aunty M Brain Tumours, I share personal experiences from people living with different types and grades of astrocytoma.
You may also find these stories helpful:
Sophie’s Grade 3 Astrocytoma Story
Sophie shares how an unexpected seizure led to her diagnosis, followed by awake brain surgery, radiotherapy and chemotherapy.
Jenny’s interview highlights the challenges that can accompany a high-grade brain tumour diagnosis, including undergoing multiple operations and navigating treatment and recovery.
It is important to remember that there is no single experience of living with an astrocytoma.
Some people face difficulties during treatment. Others experience long-term effects. Every person’s situation is different.
By listening to these personal experiences, we can better understand how brain tumours affect people’s lives beyond the diagnosis itself.
If you have recently been diagnosed, hearing someone else’s story may help you think of questions to ask your medical team or find support that is right for you.
And if you have your own experience to share, I would love to hear from you.
Share Your Brain Tumour Story With Aunty M Brain Tumours
Medical information is provided for general awareness and does not replace advice from your own medical team.
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.
