International Brain Tumour Awareness Week

International Brain Tumour Awareness Week (29 October to
5 November 2022) is a global campaign where the
international brain tumour community comes together to raise
awareness about brain tumours.

This year, Brain Tumour
Support NZ is showcasing the stories of five ordinary Kiwis
who are adding their voices to the global chorus advocating
for increased awareness, more research, and better
treatments for brain tumour patients.

Chris Tse, chair
of Brain Tumour Support NZ, says: “Despite brain tumours
having one of the lowest survival rates of any cancer, and
being responsible for around 270 cancer deaths each year in
Aotearoa New Zealand, brain cancer tends to fly under the
radar.”

“This lack of awareness often manifests
itself in delayed or mis-diagnosis of many patients because
doctors don’t think about the possibility of a brain
tumour and tend to offer up a diagnosis of migraines,
strokes or epilepsy instead,” Tse says.

“Even when
a diagnosis has been confirmed, the lack of effective
treatments, especially for the most malignant brain tumours
such as glioblastoma, result in a poor prognosis. Pharmac
has not funded any new medicines for glioblastoma in over
sixteen years, so it is a wonder that survival rates have
not changed during that time,” Tse adds.

Brain
tumour patients in Aotearoa have suffered under the stresses
and strains of the health system more than most these past
few months. Christchurch baking entrepreneur, Renee
Prescott, had to endure three cancelled surgeries before
finally having her brain tumour removed last month. She
starts a six-week course of radiation treatment next week,
followed by a break over Christmas before starting
chemotherapy in the new year.

The brain tumour
diagnosis has come as a real shock to Renee, who previously
had no serious health issues before suffering a grand mal
seizure in May this year. A naturally positive person, she
has found dealing with the treatment delays very
hard.

“It’s been a long, emotional and confusing
road so far with many cancelled appointments, MRIs and
surgeries along the way. The planning, getting organised and
being mentally prepared prior to the surgery is pretty
exhausting, that’s the annoying thing about it,” she
says.

Eight-year-old Elyse Johnson and her family are
all too familiar with the world of brain surgeries, hospital
visits and MRI scans. Elyse has been battling a DIPG
(diffuse intrinsic pontine glioma) since the age of two.
This is the same type of tumour which took the life of
Wellington teen and research campaigner, Jemima Gazley, in
2021.

Mum, Casey Johnson, has ridden the rollercoaster
of Elyse’s brain tumour journey every step of the way. She
rates the challenge of crowdfunding to raise money for the
unfunded medicines which are keeping her daughter alive as
“the biggest pain of all”.

Hamilton woman, Sandra
Kivell, is also self-funding her treatment for a
glioblastoma, the most common and aggressive form of primary
brain tumour in adults. Sandra’s brain tumour was
discovered after she suffered a grand mal seizure on
Father’s Day in 2021. Her cancer failed to respond to
standard treatments so her oncologist prescribed
bevacizumab, a drug commonly used to treat glioblastoma in
the United States, Australia and many other countries, but
which is not funded by Pharmac.

The response was
dramatic, with Sandra regaining her energy levels and
feeling like her old self again almost immediately. She
continues to self-fund her bevacizumab treatment, travelling
to Auckland for infusions every two weeks. Her improved
quality of life has allowed her to spend precious time with
family and friends and she feels strongly that bevacizumab
should be funded so that more brain tumour patients can
access it.

Louise Curtis was a fit and healthy
42-year-old wife and mother, working two jobs in the health
and fitness industry, as well as running her own business,
when her brain cancer was diagnosed in 2013. Surgery,
radiotherapy and chemotherapy have managed to keep the
tumour at bay but life for Louise has not been without its
challenges as she has had to deal with pain, fatigue, PTSD
and depression since her diagnosis.

No longer able to
work due to the tumour and its treatment effects, Louise has
turned to cycling, as a mode of transport, for exercise and
to fundraise for charity. For the 2022 International Brain
Tumour Awareness Week she aims to ride 500km in one week,
raising money for Brain Tumour Support NZ.

Also giving
back, in more ways than one, is Dunedin nursing student,
Nicole White. Nicole was diagnosed with a rare brain tumour
in 2017 when she was just 17 years old, having experienced
seizures for more than a year. She has since endured two
brain surgeries and still takes an oral chemotherapy
daily.

While this is a lot for any teenager to handle,
Nicole has battled through the tough times and is looking
forward to completing her nursing studies at Otago
Polytechnic this year. “Although the journey is hard, you
will learn so many amazing life lessons that will shape who
you are as a person and who you will be as a nurse,” she
said.

Nicole hopes to inspire other young people who
may be going through a similar experience as hers. She has
signed up as a volunteer for Brain Tumour Support NZ and
recently ran the Dunedin half-marathon, raising over $4,400
for the charity.

“Nicole is exactly the type of
nurse who brain tumour patients want to care for them during
their treatment,” says Chris Tse. “This impressive young
woman has overcome her own health issues to display the
commitment, compassion and caring nature which will make her
an excellent health professional.”

“Brain Tumour
Support NZ deeply appreciates the courage and generosity of
all the people who have shared their stories to raise
awareness and help improve outcomes for brain tumour
patients in Aotearoa New Zealand,” Tse
said.

 

ABOUT BRAIN TUMOURS

• In
  2020, 373 New Zealanders were diagnosed with a malignant
  brain tumour.
• Each year around 270 people die from
  brain cancer in New Zealand, making it the 10th most fatal
  cancer.
• Brain cancer is the biggest cancer killer of
  children in New Zealand, being responsible for 38% of all
  childhood cancer deaths (the next largest is leukaemia with
  25%)
• Brain tumours can affect anyone, of any
  ethnicity, and at any age.
• Survival rates for brain
  cancer have not improved significantly in the last 30 years.
  The 5-year survival rate for glioblastoma, the most common
  form of brain cancer, is just 6% and the median survival is
  15 months.
• The causes of most brain tumours are
  unknown which means there are no preventative measures and
  population screening is impractical.

ABOUT BRAIN
TUMOUR SUPPORT NZ

Brain Tumour Support NZ is a
registered charity formed in 2019 to provide much needed
support, information and advocacy to brain tumour patients
in New Zealand. Our Vision is that everyone living with a
brain tumour has the support, information and access to best
treatments, so they feel less afraid, less alone and more
empowered.

© Scoop Media