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Kiwi breast cancer survivors are being encouraged to look
out and seek help for long-term side effects of treatment,
as a charity delves into this under-researched field. Ahead
of World Cancer Day, 4 February, Breast Cancer Foundation NZ
(BCFNZ) is inviting survivors to share their experiences in
a new survey.
The investigation comes a year after
BCFNZ published research
showing breast cancer survival in New Zealand has improved
significantly. Thanks to major advances in screening and
treatment, the five-year risk of dying of breast cancer in
NZ has halved since 20031 and an estimated 49,000 Kiwi women
are alive today after a breast cancer diagnosis2. As more
people live longer after breast cancer, this raises
questions around how a new generation of long-term survivors
are dealing with ongoing health
problems.
International research shows that people
diagnosed with breast cancer can experience wide-ranging
side effects that last or develop long after surgery,
chemotherapy, radiation therapy and hormone treatment. For
example, between 15% and 50% of patients who have
chemotherapy have cognitive issues (“chemo brain”) for a
few years afterwards3, and 20% of breast cancer patients
develop lymphoedema (swelling of the arm after surgery to
remove lymph nodes, or after radiation)4. Other effects
include peripheral neuropathy (nerve damage), problems with
balance and walking, pain, infertility, fatigue, and heart
damage.
“We hear from survivors that they are so
grateful to have got through treatment, they feel that any
lingering effects are just something they have to live with.
Or, some might develop side effects many years after a
diagnosis so they – and even their doctors – have no
idea these symptoms could be related to the treatment that
saved their life,” says Ah-Leen Rayner, chief executive of
Breast Cancer Foundation NZ.
“We’re encouraging
breast cancer survivors to be vigilant about persistent or
delayed reactions to treatment and know that they don’t
have to cope with them without getting help. And to people
who are about to start treatment, don’t be afraid to ask
your specialists about how to minimise your chances of these
things happening to you.
“We also want to hear from
survivors about their experiences because right now this is
a poorly understood problem. By participating in this
survey, you’ll help us to inform doctors, the
Government’s Women’s Health Strategy and our own support
services to make sure more Kiwis live well after breast
cancer,” Rayner adds.
Jude McCulloch, a mum and
primary school teacher from Waiuku, was diagnosed with
breast cancer in February 2020, at the age of 43. Two years
after finishing treatment, Jude is still dealing with
lingering effects from surgery, chemotherapy and radiation
treatment. These include lymphoedema, alopecia, peripheral
neuropathy, fatigue and memory problems – all causing
difficulties with everyday life.
She says:
“There’s an expectation that beating cancer means
you’re happy all the time. Yes, I have survived, but
it’s taken a lot – there have been things I’ve lost
and things I’m still dealing with and people don’t see
that. They don’t realise that quality of life
post-treatment is also important.
“I’ve found ways
to manage my long-term side effects, like paying privately
for a good lymphoedema therapist, calling the Breast Cancer
Foundation nurses for advice and joining a breast cancer
support group. But I’ve had to be proactive and hunt out
practical advice about how to cope.
“My advice to
other survivors is to seek help. Sometimes as women we get
stuck in a rut of not wanting to make a fuss and just
getting on with things. There are things that can help but
you have to be a squeaky wheel. If you’re not your own
advocate, nothing will happen.”
BCFNZ’s survey for
breast cancer survivors who have finished treatment can be
found online at: www.breastcancerfoundation.org.nz/long-term-effects-survey
Later
this month, BCFNZ is hosting a webinar where healthcare
professionals and breast cancer survivors will offer
information and practical advice about long-term and late
side effects of treatment. Keep an eye out for more details
soon at www.breastcancerfoundation.org.nz
References:
1.
Breast Cancer Foundation NZ. 2022. 30,000
voices: Informing a better future for breast cancer in
Aotearoa New Zealand.
2. Institute for Health
Metrics and Evaluation. 2021. Global
Burden of Disease Study 2019.
3. Vardy J and
Tannock I, “Cognitive function after chemotherapy in
adults with solid tumours”, Critical Reviews in
Oncology/Hematology 2007, Vol 63 Issue 3, Pages
183-202
4. Gillespie T, “Breast cancer-related
lymphedema: risk factors, precautionary measures, and
treatments” Gland Surg
2018;7(4):379-403
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