REBUILDING MY IDENTITY AFTER BREAST CANCER - COVER STORY - TOWARDS 2025: Breast Cancer Network ...
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ISSN 1834-5921
SHARING THE
STORIES OF
FIRST PEOPLES
COVER STORY
REBUILDING MY
IDENTITY AFTER
BREAST CANCER
Supporting and
empowering
LGBTIQ+
communities
TOWARDS 2025:
OUR PLAN TO CREATE CHANGE
BREAST CANCER NETWORK AUSTRALIA’S MAGAZINE | ISSUE 90 | MARCH 2022
Letter
CONTENTS LISTEN, WATCH, READ
3
NEWS
4
Letter from the CEO
BCNA News
FROM
THE CEO
W
STORIES PODCAST SERIES elcome to the first edition of The If you ever need further information or clarification,
Beacon for 2022. I hope you had a please call our Helpline on 1800 500 258 or email
5 Pedalling towards a wonderful summer surrounded by contact@bcna.org.au. You can also join our online
purposeful future loved ones and have eased into the network, where you can speak to others going
Accessing Support for Breast Cancer new year. through a similar situation.
6 Rebuilding my identity
after breast cancer + in Regional and Remote Locations We were delighted to hear of the wonderful news In this Beacon you’ll find a variety of stories including
Project 528 of our former CEO Maxine Morand AM, who was an Ask the Expert about lymphoedema, how a young
honoured this Australia Day with a Member of the mother of two rebuilt her identity after breast cancer,
Advance Care Planning – Order of Australia for her significant service to the our new content for our First Peoples and LGBTIQ+
8 Keeping abreast of the
latest COVID advice Taking Control of Your Future Parliament of Victoria and to community health. communities, what’s happening in our policy and
Additionally, we would like to congratulate Professor advocacy space, and much more!
10 2022 Pink Bun campaign Hormone-Blocking Therapy – Jane Turner AM and Professor Prue Francis AM on
As we have discovered, a new year brings new
their Australia Day Honours. They have both made
Balancing Quality of Life and and ongoing challenges, but also gives BCNA the
12 Supporting and significant contributions to breast cancer research,
opportunity to continue to lead, advocate, bring
empowering LGBTIQ+ Risk of Recurrence treatment and support. Thank you to each of these
awareness and support all Australians affected by
communities women for their ongoing contribution to BCNA and
breast cancer. We know that we are stronger together
support to all Australians affected by breast cancer.
and staying connected as a community will be
14 Sharing the stories of I would also like to congratulate Monique Bareham, essential to help all those affected by breast cancer.
First Peoples who has been named South Australia’s 2022 Local
Hero. Monique was left with lymphoedema after a
16 Ask the Expert – CONFERENCE: Breast Reconstruction – cancer diagnosis and successfully lobbied to have
Lymphoedema compression garments subsidised in South Australia
Options and Expectations
for people with the debilitating condition. Monique
18 Towards 2025: Our plan to continues to be focused on ensuring all Australians
create change CONFERENCE: Thriving Together – have access to good care for lymphoedema services Kirsten Pilatti
Living Longer, Living Stronger and reducing the stigma for all those living with Chief Executive Officer
19 Share your experience and lymphoedema.
help with breast cancer
research and support As a new year is upon us, we understand that
COVID-19 is still causing ongoing anxiety about how
your treatment may be impacted if you get COVID,
20 Calling for change on
and how you will cope with COVID if you do get it.
breast cancer issues
We also acknowledge that, in some parts of Australia,
22 Around the network health services have been affected including delays
to non-urgent elective surgeries such as breast
The Role of Radiotherapy in the reconstruction surgery. We know from the calls to our
Treatment of DCIS and Early Breast Cancer Helpline that this is causing stress and uncertainty and
is adding to the long waiting times in public hospitals.
We have addressed this issue in the COVID-19
Information article in My Journey. If you haven’t
Editor: Amelia Cox already, don’t forget to tune into Dr Charlotte Tottman’s
Designer: Justin Dymott 10-part podcast series What You Don’t Know Until You
ASK THE EXPERT
Contributor: Jeanie Watson and Do, where she discusses a range of topics that may
Lisa Berger help you on various stages of your journey.
BCNA has continued to work closely with COVID
INTERACTIVE DIGITAL EVENT working groups, Cancer Australia and other
Breast Cancer Network Australia stakeholders to ensure our voice is heard. We
Level 1, 293 Camberwell Road, will continue to keep our COVID information and
TRIPLE NEGATIVE BREAST CANCER
Camberwell VIC 3124 vaccination articles in My Journey regularly updated
to ensure you always have the most up-to-date
1800 500 258
contact@bcna.org.au
DR NICK ZDENKOWSKI information to make informed decisions about your
treatment and care. We’ve added a What’s New section
bcna.org.au MEDICAL ONCOLOGIST to the top of the COVID-19 Information article to make
it a bit easier for you to find the latest updates.
2 March 2022 | Issue 90 Breast Cancer Network Australia bcna.org.au Issue 90 | March 2022 3
News
BCNA Pedalling towards a purposeful future
A
nthony Chan enjoys fixing things. As a ‘A secondary diagnosis changed the game significantly, not
mechanic for his local bike store 99 Bikes in only with regards to her treatment options but also our outlook
Blackburn, Victoria, he draws on his experience on life,’ says Anthony. ‘Her illness shone a light on priorities.’
as a mechanical engineer to help people get
One of the ways they reprioritised was deciding Anthony
back on their bikes as quickly as possible.
would leave his full-time job to stay home and look after his
It’s rewarding work, made even more so thanks to the family so Melissa could continue in the career she loved as an
BCNA’S ANNUAL REVIEW organisation’s Earn to Give program, which has recently
seen staff make a generous donation of more than $22,000
engineer for Yarra Valley Water.
‘Melissa always wanted to do things, even during her illness –
2020–21 NOW AVAILABLE
to BCNA.
she never wanted to sit around passively,’ he says. ‘Her major
‘Not only does 99 Bikes support employees with personal priority was to make life as normal as possible for the kids. Her
development every year, but they offer us all the option of 13-year journey meant the kids really got to know her. She was
donating an extra 1 per cent of our salaries to a charity of our always helping others and she really instilled that quality in
BCNA SUBMISSIONS TO PBAC choice,’ says Anthony.
With a list of around 40 charities to choose from, staff can
our children.’
During Melissa’s illness, Anthony realised how unhappy he’d
usually find a cause close to their heart. become in his own career. He decided to do what he enjoyed
As part of BCNA’s commitment to reduce most – tinkering in a workshop, surrounded by tools. He quit
‘I lost my wife Melissa to breast cancer in 2019. Naturally,
the financial burden of breast cancer, we his job as a mechanical engineer and started approaching bike
I wanted to support BCNA, but it wasn’t on the list, so I
regularly make submissions on behalf of our stores. Eventually, 99 Bikes took him on.
nominated it to be added. Now we have around 50 staff across
members to the Pharmaceutical Benefits Australia who choose to donate to BCNA,’ Anthony says. ‘I’m so much happier at work now,’ he says. ‘Plus, every day,
Advisory Committee in support of new I know I’m also helping BCNA to continue its important
His connection to BCNA started when Melissa was diagnosed
breast cancer treatments. The PBAC is the work supporting people diagnosed with breast cancer. It’s a
in 2006 at the age of 36. Their lives changed in an instant.
authority that makes recommendations to the good feeling.’
Along with the support of her medical team, BCNA’s resources
Australian Government on which drugs should
helped Melissa and her family understand what was happening. Workplace Giving is one of the easiest ways to support BCNA.
be subsidised through the Pharmaceutical
By contributing a small amount of your pre-tax salary, you can
Benefits Schedule (PBS). While she worked and cared for her young family, Melissa
make a big difference. You can give as much or as little as you
Our latest Annual Review for 2020–21 is now underwent treatment and a mastectomy. For a while, things
In the last three months, BCNA has made like, and because your donations are pre-tax, you will receive
available. Tracking the first 18 months of the seemed to have settled down, but in 2008 she was diagnosed
submissions in strong support of two breast the tax benefit immediately, rather than having to wait until the
pandemic to BCNA’s new June financial year-end, with metastatic breast cancer. The cancer had spread to her
cancer treatments being included on the PBS: end of the financial year. Learn more about BCNA’s Workplace
it reflects the strength and determination of our bones. Anthony says BCNA’s Hope & Hurdles resource was
Giving Program.
• Trodelvy® (sacituzumab govitecan) – This particularly useful.
network to meet the challenges of the times.
treatment offers improved progression-free
During this time, BCNA pivoted to respond to the survival rates in people with triple negative
critical needs of our network, seamlessly delivering metastatic breast cancer, a group which has
information and support and raising our collective traditionally seen poorer outcomes and fewer
voice to address disruptions in the health sector that treatments available to them.
affected those diagnosed with breast cancer.
• Verzenio® (abemaciclib) – This treatment
Highlights included: is for people with HR-positive and HER2-
negative invasive early breast cancer.
• Receiving more than 2,300 responses to our
Verzenio is already on the PBS for people I’m so much happier
COVID-19 consumer survey, which helped us
advocate to keep the needs of people with breast
with metastatic breast cancer, and we are at work now. Plus,
excited at the possibility of increasing the
cancer on the COVID-19 health response agenda
number of those who are eligible for this every day, I know
• Nearly 10,000 people registered for My Journey, subsidy.
our Helpline answered 16,000 calls for assistance,
I’m also helping
Access programs are being run for both
our podcasts were downloaded 25,000 times, and
treatments, and BCNA recommends speaking
BCNA to continue
nearly 5,000 people participated in our
first digital conference directly to your oncologist or treating team if its important work
you have questions regarding these treatments
• The unwavering support of our long-term partners, or your eligibility to access them.
supporting people
sponsors and supporters, who gave us much-needed
certainty during an uncertain time We are expecting the outcomes of these
diagnosed with
• Expanding our reach and keeping people informed,
submissions over the coming months, and will breast cancer. It’s a
keep our network informed and up-to-date
which resulted in more than 300,000 visits to both
on all available and emerging treatments. good feeling.
our Online Network and website and 3.1 million social
BCNA thanks the consumers who offered their
media impressions.
insight into these submissions and are helping
Thanks to our engaged network, committed partners us to advocate for affordable breast cancer
and dedicated staff, BCNA continues to be a vital treatments in Australia.
influencer and change-maker.
4 March 2022 | Issue 90 Breast Cancer Network Australia bcna.org.au Issue 89 | October 2021 5
COVER STORY PROJECT 528:
Identifying the needs of
the global young breast
cancer community
BCNA is pleased to be involved in an emerging
international project focusing on the experiences
of young women living with breast cancer.
Our Consumer Representatives participating in the
project, Naveena Nekkalapudi and Jodie Lydeker,
are both young women living with breast cancer.
They share their thoughts about Project 528:
‘Being diagnosed with breast cancer as a young
woman (under 40) and managing the longer-
term impacts of treatment can present unique
Her year of focusing on family instead turned into a year challenges in the areas of family planning/fertility,
of 16 rounds of chemotherapy, followed by a lumpectomy career progression and relationships. Project 528
and 20 sessions of radiotherapy. It took a toll. represents the estimated 528,000 young women
‘Being an active person, suddenly I was struggling to living with breast cancer around the world each
get up in the morning,’ Lauren says. ‘I also felt like I lost year. As Consumer Representatives for BCNA, it
my identity. I had no hair and no periods. Everything fell is an exciting time to participate in this first ever
away. I felt really masculine.’ attempt to identify the commonalities and service
The changes to her body and appearance affected her gaps of young women, their carers and their
relationship with her husband, Stewart. healthcare providers across multiple countries.’
‘I felt like my body had shut down to focus on fighting We will share more information about how young
the cancer. I felt very physically distant from Stewart,’ women in BCNA’s network can participate in
she says. ‘Thankfully, I also felt more emotionally the survey when it is conducted later this year.
connected to him and, in many ways, cancer has The outcomes of the survey are expected to be
brought us closer.’ revealed in 2023 and will help to guide further
Despite the challenges of her diagnosis, including discussion about how BCNA can support and
the loneliness of having cancer treatment during advocate on behalf of young women to improve
a pandemic, it didn’t diminish Lauren’s naturally their experience and health service practices.
optimistic attitude.
For more information, visit the
‘Ninety-nine per cent of the time I felt positive, but
REBUILDING MY IDENTITY AFTER BREAST CANCER
Project 528 website.
sometimes the one percenters would creep in. I’d let
myself feel all the emotions, but I also knew it was really
L
important to lift myself out of it,’ she says.
auren Pack was 36 years old with two young children and in the middle of moving house The support of her family and friends and excellent
when she felt a lump while she was breastfeeding. She shares her experience of being a care of her multidisciplinary team helped her to
young woman diagnosed with triple negative early breast cancer and the impact it had on her maintain her optimism. She also sought support from a
relationships and sense of identity. nutritionist and psychologist. Recent test results show
At the end of 2020, Lauren accepted a redundancy from her busy sales and marketing role in a the best possible outcome – Lauren had a pathological
corporate environment. With her second child due in the new year, she wanted to focus on her new home complete response to treatment, which means she is
and growing family. now cancer-free.
A few months later, she felt an unusual lump in her right breast. Initially, she put it down to breastfeeding but Lauren says the best medicine unexpectedly came in
continued to have a strong feeling something wasn’t right. She went to her GP, who sent her for an ultrasound the form of a small business she bought, called The
and then referred her to a surgeon. A biopsy confirmed Lauren had stage 3 triple negative breast cancer. Junior Edit, while she was in the thick of treatment.
‘When the surgeon told me, I just went numb,’ she says. ‘I thought, why me? I’ve always been fit and healthy. ‘The business gave me purpose outside of the home
There’s no cancer in my family. How am I going to do this?’ and helped take my focus away from the cancer world,
which was completely out of my control,’ she says. ‘I am
Searching the internet revealed very poor outcomes for triple negative breast cancer. However, her thankful for my diagnosis. It’s taught me to reprioritise
diagnosis felt less daunting once she was under the care of a multidisciplinary team and found trusted my life and focus on the things that are really important
resources such as BCNA’s website. to me. I feel empowered.’
Lauren’s treatment put her into temporary early menopause. She decided not to pursue fertility For more information about young women with early N
aveena Nekkalapudi (left) and Jodie Lydeker
preservation because of the urgent timing. breast cancer, check out BCNA’s My Journey.
6 March 2022 | Issue 90 Breast Cancer Network Australia bcna.org.au Issue 90 | March 2022 7
COVID-19
KEEPING ABREAST OF THE LATEST COVID ADVICE
A
ustralia’s approach to COVID-19 has To be up-to-date with your COVID vaccine status have the same level of protection as someone with a
changed and it’s understandable you those aged 16+ need to have a booster dose three more robust immune system.
might be confused or concerned about months after their two-dose primary course. This is
what this means for you. BCNA is here because there is waning immunity after the primary It is recommended you continue to follow the general S
usannah Morris
to help you wade through all of the course, and an extra dose increases your protection public health messages regarding maintaining safe
information and provide the latest, most relevant against symptomatic infection and serious illness. distances from others, practising good hand hygiene
advice for our network. and wearing masks in public spaces.
Some people will need more doses because they have ARE THERE ANY TREATMENTS FOR COVID-19?
The Beacon spoke with one of our Consumer a suppressed or compromised immune system so are Some people who are more at risk from COVID-19 may
choose to reduce their exposure to others even when Some antiviral drugs have received approval from the
Representatives, Susannah Morris about some of likely to have had a weaker immune response to the
there are no general restrictions on movement. This is Therapeutic Goods Administration. Some are already
the questions our members have about COVID-19. original two primary doses of the vaccine.
a personal choice. available in hospital settings, and some will become
She has previously assisted with developing national
The Australian Technical Advisory Group on available for use at home in Australia.
frequently asked questions about the COVID-19
vaccine for people diagnosed with breast cancer and Immunisation (ATAGI) recommends a third WHAT SHOULD I DO IF I TEST POSITIVE TO These treatments will be for people who are more at
other cancers. You can also find the most up-to-date primary dose of a COVID-19 vaccine for severely
COVID-19 advice online via My Journey. immunocompromised adults between two to six COVID-19? risk of developing a severe illness if they get COVID-19.
These drugs must be started within five days of
months after their first two doses. They will also need
Resources are being developed for the broader developing COVID-19 symptoms to be effective.
a booster (fourth) dose of a COVID-19 vaccine to be
WHY HAS AUSTRALIA’S APPROACH TO considered up-to-date. community to help them prepare for getting COVID-19
Consider talking to your clinicians about your
COVID-19 CHANGED? and manage it at home. The Royal Australian College
of General Practitioners has developed this guide: COVID-19 risk profile at your next planned
Most of the population is now vaccinated and so has
HOW DO I KNOW IF I’M IMMUNOCOMPROMISED? Managing COVID-19 at home with assistance from consultation. This will ensure you know ahead of time
your general practice. The Global Healthy Living if you are likely to belong in the category of people
greater protection against developing severe illness Talk to your clinician about whether they consider you
Foundation’s COVID-19 self-care guide for people who will be given access to these treatments when
or dying from COVID-19. There is now less risk from to be immunocompromised based on the type, stage
with chronic health conditions includes tips such they are available.
allowing people to move around more freely. and treatment you are having for your cancer.
as making sure you have an adequate supply of
Importantly, these treatments are not an alternative to
However, for those who have had, or are currently For people who are on longer-term breast cancer medications, masks and sanitiser.
vaccinations and other protective measures.
having, cancer treatment COVID-19 is still a concern as treatments such as hormone therapies, you are not
they remain potentially more vulnerable to COVID-19, For those with reduced immunity, it is particularly
considered immunocompromised, and ATAGI does
even if they are up-to-date on their vaccinations. not recommend extra doses. However, if you are
important that your healthcare team knows you are I HAVE OTHER QUESTIONS AND CONCERNS ABOUT
potentially at risk of severe illness. You need to know
concerned, talk to your GP.
how to contact your clinicians, particularly your GP, if
COVID-19 – WHO CAN I TALK TO ABOUT THEM?
WHAT IS THE LATEST ADVICE ABOUT you test positive, as you may be eligible for treatment.
COVID-19 VACCINES FOR PEOPLE WHO WHAT ARE THE BEST WAYS TO PROTECT MYSELF BCNA is your voice. We can help direct you to the
right information, and advocate for changes that
It is also important that your breast cancer treatment
HAVE BREAST CANCER? AGAINST COVID-19? team is notified if you test positive for COVID-19, as
benefit our members. Send your questions and
concerns to contact@bcna.org.au or call our helpline
Having your vaccinations is your best protection. this may affect your cancer treatment.
Vaccination continues to be recommended in on 1800 500 258.
general because it reduces your risk of severe illness, However, it’s important to remember that even a
hospitalisation or death from COVID-19. vaccinated immunocompromised person does not
8 March 2022 | Issue 90 Breast Cancer Network Australia bcna.org.au Issue 90 | March 2022 9
PINK BUN 2022
You can support this year’s Pink Bun campaign by:
• Buying a Pink Fun Bun 6-Pack at your local
Bakers Delight bakery
• Hosting a Pink Bun Party with friends,
IT’S ALMOST TIME FOR BAKERS DELIGHT BAKERIES ACROSS THE COUNTRY TO TURN PINK! family or colleagues
• Posting your support on social media
using #PinkBunsForBCNA
• Thanking the team at your local Bakers Delight
Sam was diagnosed with stage Feeling vulnerable, Nick was grateful
three breast cancer in 2014 and to BCNA for connecting him with other
metastatic breast cancer in 2019. males diagnosed with breast cancer. ‘It
made me feel like I was not alone which
She says metastatic breast cancer
was really reassuring and comforting
comes with many challenges. ‘The
to me.’
biggest challenge for me was knowing
that it’s incurable, and then facing the He hopes this year’s Pink Bun campaign
mental challenge of time and being on will raise more awareness for men
medication for the rest of my life.’ diagnosed with breast cancer. ‘Breast
cancer doesn’t only affect women. It’s
She also says there is a common
on the increase for men, and supporting
misconception regarding metastatic
BCNA will continue to allow them to
breast cancer, as you often look well.
provide valuable, targeted resources for
‘It’s difficult. When I’m struggling and
other men like me.’
dealing with pain, if people don’t know
I have breast cancer because I look well Buy a Pink Fun Bun 6-Pack at your
and have all my hair, people think that local Bakers Delight between 28 April
I’m fine.’ and 18 May, and 100 per cent of the
money will go to BCNA.
Stable for a year and a half now, Sam
Megan Sam Nick hopes the medication she’s on gives her
more time and better quality of life for
her and her son.
Y
ou can help BCNA fact that people with disabilities get ‘I wouldn’t have access to the
continue to be the breast cancer too. ‘Breast cancer medication I am on if BCNA wasn’t
voice for all Australians does not discriminate. It can impact advocating for people like me. It’s
affected by breast cancer anybody.’ Following her diagnosis, almost like a guiding angel, you can
by supporting our 2022 she faced many challenges like rest assured that someone is already Breast cancer doesn’t
Pink Bun campaign. For three weeks, fighting the fight for you, before you’re
from 28 April – 18 May, 100 per cent
finding alternative ways to access
People with disabilities even diagnosed. I’m fortunate enough only affect women.
information and communicate with her The biggest challenge
of the money from every Fun Bun medical team. and breast cancer need
to be one of those who receives the
It’s on the increase for
sold will go to BCNA. for me was knowing benefits of all the hard work BCNA has
She says BCNA has been her voice.
extra support. You can already done.’ men, and supporting
This year’s campaign shares the stories ‘They provided me with the latest and that it’s incurable, and
of BCNA members Megan, Sam and accurate information. As someone who help BCNA be that
Nick was diagnosed with breast BCNA will continue to
Nick as they talk about the challenges then facing the mental cancer in April last year. ‘I didn’t know
is Deaf and legally blind, I need access
support for people like anything about male breast cancer, so allow them to provide
of a breast cancer diagnosis, and why to information in different formats and challenge of time and my diagnosis came as quite a shock. I
BCNA’s information and support is so BCNA has given me that so I can make me by visiting your thought the lump was from walking into valuable, targeted
important to them and many others. being on medication for
informed decisions about my breast
local Bakers Delight and
a tree branch while cutting the lawn a resources for other men
Megan was diagnosed with breast cancer treatment and beyond.’ the rest of my life. couple of weeks earlier.’
cancer in 2018. She had a double
Megan says buying a Pink Bun this purchasing a Fun Bun. Initially, he didn’t want to tell many
like me.
mastectomy and reconstruction,
year has never been more important. – Sam people that he had breast cancer
followed by chemotherapy and
radiotherapy, and is currently on
‘People with disabilities and breast – Megan because it is often seen as a woman’s – Nick
cancer need extra support. You can disease. ‘It was too uncomfortable
hormone-blocking therapy. to say, “I’m a male and I have breast
help BCNA be that support for people
Profoundly Deaf and legally blind, like me by visiting your local Bakers cancer.” It was easier to just say, “I have
Megan is keen to shine a light on the Delight and purchasing a Fun Bun.’ a lump in my chest.”’
10 March 2022 | Issue 90 Breast Cancer Network Australia bcna.org.au Issue 90 | March 2022 11
communities
SUPPORTING AND EMPOWERING LGBTIQ+
Laurie and Elizabeth
Ro Tess
S
ince BCNA began in 1998, Our LGBTIQ+ Advisory Group, Along with the Advisory Group’s Professor Jane Ussher from • a welcome video featuring of the ‘Out with Cancer’ study
we’ve achieved so much formed in 2021, is helping us advice, we have included the Western Sydney University was people who identify as and explore disclosure. We will
for people affected by address the content needs of voices and experiences of LGBTIQ+ the lead researcher. She says: ‘This LGBTIQ+. Each person speaks also hear from LGBTIQ+ Advisory
breast cancer. However, the LGBTIQ+ communities and people living with breast cancer new content will fill the gaps in about their breast cancer Group member Mel Krollig and
we know some groups members affected by breast cancer. in the review and development current breast cancer information diagnosis, the feeling they her partner Riki Owens-Bennet in
of people have continued to feel The group of eight members from of new, specific content to meet by providing targeted information experienced and how My the podcast, Through a Rainbow
invisible and alone, including the across Australia provides insights their needs. that is directly relevant to LGBTIQ+ Journey assisted them on their Lens – Navigating Breast Cancer
LGBTIQ+* communities. and ideas about topics that may experiences of cancer diagnosis, own journey, and welcomes the as an LGBTIQ+ Couple, where
These lived experiences and
be of interest, identifies strategies treatment and living with cancer. new user to My Journey and the they discuss Mel’s experience of
According to Professor Jane Ussher challenges were captured through
to increase our engagement, This includes addressing LGBTIQ+ BCNA community breast cancer, how Riki supported
at Western Sydney University, our recent research partnership
provides feedback for planned specific needs and concerns, her and the challenges the couple
research shows these communities with Western Sydney University • content exploring topics such
such as coming out to healthcare faced together.
‘face unique challenges after a content including our events researchers. The Australian as coming out and disclosure,
professionals, body image, sexuality
cancer diagnosis, such as higher and podcasts, and advises us on Research Council (ARC) funded coping with cancer as an This is just the beginning as we
and fertility, legal rights, palliative
rates of cancer-related distress preferred terminology. the ‘Out with Cancer’ Study which LGBTIQ+ person, fertility, continue to do all we can to provide
care, and the needs of transgender
and sexual concerns, lower levels explored LGBTIQ+ experiences legal issues, LGBTIQ+ friendly a safe and welcoming space for
For Advisory Group member Ro and intersex people. The content
of family support, difficulties in with cancer from the perspective services, palliative care, LGBTIQ+ communities, where they
Woods, joining the group has given also includes quotes from LGBTIQ+
accessing general healthcare or of cancer survivors, their carers and sexuality and intimacy, and feel represented, supported and
her the chance to give back. people with breast cancer who took
cancer services, gaps in patient healthcare professionals. social support. empowered to make informed
part in the study, to let people know
provider communication, and lower ‘I’m proud to be a member of the decisions throughout their breast
A BCNA representative from they are not alone.’ We will also be launching two
satisfaction with cancer care’. LGBTIQ+ Advisory Group and share cancer journey. Stay tuned
our Seat at the Table program, new Upfront about Breast Cancer
my experience of breast cancer Some of the new content includes for more!
LGBTIQ+ communities have Natalie Halse, was a community podcasts for the LGBTIQ+
to help support others within my updates to My Journey, which will *We use the term LGBTIQ+ in the broadest sense,
always been part of BCNA, but we stakeholder member of the communities, including LGBTIQ+
community. It’s my hope that with soon feature: to represent all sex, sexuality, and gender diverse
recognise they have not always Western Sydney University advisory Experiences of Breast Cancer and people. It stands for Lesbian, Gay, Bisexual, Trans,
Intersex and Queer.
had a wide range of resources that BCNA’s support we will all be group, and BCNA also helped • additional gender and sexuality Cancer Care, in which Professor
address their individual needs. We treated with respect in sickness and recruit LGBTIQ+ people to take part identity options when people Jane Ussher and BCNA Consumer The ‘+’ sign is used to encompass other gender,
sex and sexually diverse people not covered by the
are working to change that. in health,’ she says. in the research. sign up Representative Natalie Halse LGBTIQ acronym.
discuss some of the key findings
12 March 2022 | Issue 90 Breast Cancer Network Australia bcna.org.au Issue 90 | March 2022 13
Sharing the stories of
First Peoples
Aunty Pam Pedersen
and Erica
BCNA RESOURCES
FOR FIRST
PEOPLES
AFFECTED BY
BREAST CANCER
E
veryone who is These findings continue to drive important thing is that our people Upfront about Breast
diagnosed with BCNA’s purpose and commitment need to feel culturally safe.’ Cancer podcast:
breast cancer may to do better for our First Peoples. Navigating a breast cancer
First Peoples Advisory Group
face challenges, but diagnosis as an Aboriginal
Our conversations with Aboriginal Member Leah Lindrea-Morrison
some Aboriginal and or Torres Strait Islander
and Torres Strait Islander agrees.
Torres Strait Islander peoples
communities are ongoing as we First Peoples Online
experience additional barriers ‘Our Aboriginal community is
work together to address the Network Group
such as accessing the best really important because we can
specific needs and concerns of
possible information, treatment support each other, we know each My Journey
First Peoples.* Our First Peoples
and care. BCNA is determined to other and it’s important that we
Advisory Group – comprising
help change this. share information. However, it’s Aunty Pam Pedersen
members from around Australia
important we do it in the right
In 2018, we travelled across who have a lived experience of
way as some people may not want
Australia to understand the breast cancer – provide their
people to know. I think BCNA
impact of breast cancer and we feedback, cultural guidance and
bringing Aboriginal and Torres Strait Islander peoples who have We are pleased to soon be We continue to represent First
heard directly from people who recommendations. With their input,
Strait Islander women together experienced a breast cancer launching new content featuring Peoples through our campaigns,
identified as Aboriginal and/or we are ensuring that we provide
is fantastic as we can share our diagnosis, and how this would be the voices and experiences of online events and media activities
Torres Strait Islander about the specific and relevant information
journeys and support each other.’ provided. First Peoples, including: as another way to ensure no one
additional barriers they face. and support services for those
who identify as Aboriginal and/or Hearing about the experience of feels alone while experiencing
We shared our findings in the According to BCNA Project • Tailored information on My
Torres Strait Islander. others is crucial – for those going breast cancer.
State of the Nation report, which Officer Emily Darnett, using a Journey, including a welcome
through a similar experience and collaborative approach is key. video featuring Aboriginal and By harnessing the strength of our
highlighted the disparity of First Peoples Advisory Group
for us here at BCNA – so we can Torres Strait Islander women network, we will keep sharing the
care and outcomes for our First member Aunty Pam Pedersen is a ‘Since colonisation, Aboriginal and
understand the experiences of who have had breast cancer diverse experiences of all people
Peoples. It showed that Aboriginal Yorta Yorta Elder and passionate Torres Strait Islander peoples have
all Australians. Last year, BCNA affected by breast cancer and
and Torres Strait Islander women about helping BCNA ensure her consistently been asked to adapt • A suite of videos in which
invited a group of First Peoples to strive to improve the experiences
are less likely to be diagnosed people have access to the support and assimilate to this westernised First Peoples share their
a yarning circle in Townsville. This and outcomes for our First
with breast cancer but, once they want. world introduced by the settlers. stories and experiences of
included people who had been Peoples and their communities.
diagnosed, are more likely to die BCNA is changing this approach breast cancer. The videos –
‘I love being involved. I can’t diagnosed with breast cancer and
from breast cancer compared by embracing the strengths of with themes such as family * BCNA uses the collective term First Peoples
do enough ... I must bring in the healthcare professionals who to refer to Aboriginal and Torres Strait Islander
with non-Indigenous women. They the Aboriginal and Torres Strait and support, connection to
Aboriginal people so BCNA can care for them. peoples, while also acknowledging the unique
are also less likely to participate Islander culture to understand culture, and questions to differences between Aboriginal and Torres Strait
help them as well. It’s important Islander communities, culture, traditions and
in breast screening and more The yarn focused on the support how we can adapt our content to ask your health care ceremonies.
to learn about our culture and
likely to feel culturally isolated in and information that may be better meet the needs of these professionals – complement
the things we face. The most
hospitals and clinics. beneficial to Aboriginal and Torres communities,’ she says. our written content.
14 March 2022 | Issue 90 Breast Cancer Network Australia bcna.org.au Issue 90 | March 2022 15
ASK THE EXPERT LYMPHOEDEMA
RESOURCES
LYMPHOEDEMA My Journey
Understanding
lymphoedema following
M
breast cancer treatment
arch is Lymphoedema Awareness Month. works for them, where to find clothes that fit and what
Lymphoedema can be a side effect of funding is available for compression garments and Webcast: Living with
some breast cancer treatments, such other treatments.
as surgery and radiotherapy, due to lymphoedema – the
We know the general medical community lacks
damage to the lymphatic system for conversation continues
knowledge about lymphoedema, so having the support
the breast or arm or removal of lymph nodes from the
of an accredited lymphoedema practitioner is crucial.
armpit or breast. It can cause swelling and discomfort, Find an accredited
and can be serious if left untreated. Are there any advances in technology in lymphoedema
The Beacon invited two experts to share their advice treating lymphoedema? A
ssociate Professor Elizabeth K
im Toyer - accredited
on how to live well with lymphoedema. Associate Dylke - President of the lymphoedema therapist practitioner
Until recently, the lymphatic system has been poorly
Professor Elizabeth Dylke is President of the Australasian Lymphology
studied, but now there is a lot of research happening
Australasian Lymphology Association, a not-for- Association
in this field. As our understanding of the lymph system
profit organisation for lymphoedema practitioners improves, treatments will improve. Surgery and other
and those working or interested in lymphoedema. treatment options are being explored, and there is also lymphoedema. Other tools include they are just experiencing normal and also some outdated messages
She is passionate about lymphoedema research, recent research into using compression garments as a protecting the lymphoedema swelling due to chemo or treatment- that put unnecessary limitations on
including supporting new researchers and clinically preventative measure. affected area from damage or injury related weight gain. what people with lymphoedema
driven projects. so you can pursue hobbies you can do.
What is the Australasian Lymphology Most need help with manual
How important is an early diagnosis enjoy, such as gardening.
lymphatic drainage, which helps Our understanding of lymphoedema
Association doing to help people
of lymphoedema? Compression garments need reduce swelling and discomfort if has changed over time, so check
with lymphoedema? to fit snugly to be effective. An done effectively. with a trusted and knowledgeable
Early diagnosis is critical because it gives people more
Our new mission statement is ‘excellence in healthcare accredited therapist will provide the source to see if the advice you
treatment options. It can also limit progression of the For those who have had
for people with lymphoedema’. This includes equity best fitting garment because they were given in the past has changed
swelling and prevent skin changes, which can be hard lymphoedema for a long time, there
of access to the right treatment and support. We are can measure and customise it for based on evidence-based research.
to manage once they start. may be something new for them to
growing the lymphoedema community and ensuring you. Like everything you wear and
wash regularly, your compression
explore. In the past five to 10 years, What other lymphoedema
What are the signs and symptoms of the medical community is trained and educated in new options, new products and
lymphoedema, which will lead to better understanding garment will need to be replaced in treatments are available?
lymphoedema people should be aware of? new devices have come on to the
and care for people with lymphoedema. a timely fashion, and if your weight The majority of people will do
market as our understanding of the
Breast cancer-related lymphoedema generally occurs fluctuates, you may need to get a
Kim Toyer is an accredited lymphoedema therapist lymphatic system has improved. very well with personalised
in the arm, hand, chest wall and breast area on the new one fitted.
and helps guide people to be active in all aspects of evidence-based strategies like
treated side. What can people
lymphoedema care from early detection to coping If you’re doing your own manual those mentioned above. Other
Early signs and symptoms to look out for are swelling with chronic dysfunction. She is on the Australasian lymphatic drainage, this is likely to expect from a lymphoedema treatments include
and skin changes. Be aware of the way your clothes Lymphology Association’s Board and works at need to be slow, firm and directional lymphoedema therapist? low-level laser therapy (sometimes
feel on your body, particularly your arm. Does your arm the Macquarie University’s ALERT Program, which massage, generally towards your called photo-biomodulation),
feel swollen or heavy or do your sleeves feel tighter? A therapist can work with you negative pressure therapy, and
provides evidence-based treatment for all stages of armpit for arm lymphoedema
Can you see the veins on the back of your hand? Do to find out what works for you sequential pumps for manual
lymphoedema, education for health professionals and caused by breast cancer treatment.
your rings or watches fit like they used to? and your lifestyle in terms of lymphatic drainage at home.
translational research to guide treatment and education. This change in drainage region
managing the condition. Different
is a recent update and applies to
A lymphoedema therapist can assess any changes and What can people do at home to most women at risk of or with arm
therapists and clinics offer different How can people
let you know if it is lymphoedema. options. Some focus on lymphatic find an accredited
manage lymphoedema? lymphoedema after breast cancer
drainage, while others focus lymphoedema therapist?
A lymphoedema diagnosis can affect There is no one way of treating lymphoedema. The
treatment. Some people prefer
more on education, exercise and
people’s physical and mental wellbeing. to have a regular session with a
management of your lymphoedema needs to fit in with compression for self-management, The Australasian Lymphology
therapist for this, and some choose
What can help? your lifestyle, needs and preferences.
occasional sessions when their arm,
so find the one that meets your Association has an online directory
needs. A therapist can also assess to help you find an accredited
Once you develop lymphoedema, it requires lifelong Having the right tools in your personalised toolbox will chest or breast feels fuller.
how you’re moving and treat any lymphoedema therapist near you.
management because there is no cure for it yet. This can help you manage your lymphoedema on a daily basis.
Why do people see a tight areas to keep you moving well. Find someone who you connect
have a significant impact on you physically and mentally. These tools could include the best skin care for you,
with and trust. Don’t hesitate to
the right compression garment, a form of exercise that lymphoedema therapist? Are there common myths
It’s helpful to build a good community around you. shop around until you find one that
is safe and enjoyable, and manual lymphatic drainage
This might include finding a lymphoedema therapist, Some people are concerned that or misunderstandings meets your needs.
(often called massage). they are developing lymphoedema.
connecting with another person with lymphoedema, about lymphoedema? Is there a topic you’d like to ask
or talking to a psychologist or counsellor. There are Being active, building muscle and strength, maintaining Sometimes they do have early
There is a lot of misinformation an expert about? Let us know by
also active Facebook communities for people with a healthy weight and keeping your blood pressure lymphoedema and we can act quickly
about what causes lymphoedema, emailing contact@bcna.org.au.
lymphoedema where they share tips about what in check will help you manage and live well with to limit its progression. Sometimes
16 March 2022 | Issue 90 Breast Cancer Network Australia bcna.org.au Issue 90 | March 2022 17
TOWARDS 2025 SHARE YOUR EXPERIENCE AND MAKE SURE YOUR
EXPERIENCE IS
HELP WITH BREAST CANCER REPRESENTED IN
OUR PLAN TO CREATE CHANGE RESEARCH AND SUPPORT THE LATEST
RESEARCH
Y
ou’re invited to join ‘It is a great way of hearing about,
BCNA’s Review & and then having the possibility of Research studies
Survey Group. It’s being involved in, new and emerging
for BCNA members fields of research and development often need to include
Despite progress in breast cancer care over the past decades, gaps and inconsistencies in treatment and care still the experiences of
who are interested for breast cancer diagnosis. I’d
remain. With these concerns in mind, BCNA has developed a new Policy & Advocacy Strategic Plan, Towards 2025, that
aims to address these gaps.
in participating in breast cancer recommend becoming a member people who:
research projects, lived experience of the Review & Survey Group if
Towards 2025 outlines our ambitious yet achievable goals of: reference groups and other you have the capacity and interest • have been recently
opportunities. It also ensures BCNA in making a consumer-based diagnosed with
stays in touch with what really contribution to improving outcomes early and metastatic
reducing the costs for those diagnosed with breast cancer matters to our members. for those diagnosed with breast breast cancer (within
cancer,’ says Cindy.
When you join the Review & Survey the past three years)
Group, you’ll receive opportunities The input from members helps
to participate in all forms of countless researchers across • have a culturally or
improving equity of access to optimal breast cancer care research, including: Australia. Here is what some linguistically diverse
• online surveys
of them have to say about the background
involvement of Review & Survey
• focus groups Group members. • live in rural or
improving the experiences of living well with and beyond breast cancer. Joanne Shaw from the University
remote locations.
• clinical trials
of Sydney says, ‘BCNA’s Review &
• reviewing new breast
Survey Group has been invaluable to
cancer resources.
You can read our Policy & Advocacy Strategic Plan: Towards 2025 online here. our psycho-oncology research. The
There are opportunities to be group’s ongoing support ensures
We have started to implement the plan with a focus on the key issues of concern in our advocacy work.
involved, no matter what type of that our research is clinically
‘This plan will build on our recent successes, such as our advocacy efforts late last year in relation to securing a long-term breast cancer you have, and you relevant to the concerns of people
commitment to telehealth,’ says our Director Policy, Advocacy & Member Support Vicki Durston. ‘This outcome is just can choose to participate only in living with and beyond cancer.’
one example of how the voice of consumers influences decisions relating to financial burden, equity of access and living opportunities that interest you.
Michelle Peate from the University
well with and beyond breast cancer.’
In 2021, Review & Survey Group of Melbourne says, ‘BCNA’s Review
We will continue to speak up on the issues that are important and impact people affected by breast cancer. Read more members participated in studies & Survey Group members have
about how we are calling for change in the lead-up to the federal election on pages 20 and 21. that involved research into topics been integral for my research
such as: into the fertility and menopausal
How can you help us achieve our Towards 2025 goals? experiences and concerns of people
• managing pain and fear
We are determined to continue to make real progress on these key issues for people affected by breast cancer. But we with cancer – it is through your
of recurrence
can’t do it alone. voices that I have been able to get
• mental and physical health research funding to develop tools
We want to partner with those who are equally and wellbeing that will make a difference.’
passionate about creating real change and to achieve
success with our Strategic Plan: Towards 2025. • metastatic breast cancer Poorva Pradhan from the University
of Sydney says, ‘I’m really grateful
Here are some of the ways you can help us extend our • alternative medicines that BCNA distributed two of
reach and impact: and treatments my PhD studies in their Review &
• Does your organisation or your lived experience
This plan will build on our • lymphoedema. Survey Group, including a clinical
align with the goals of Towards 2025? Let’s talk! recent successes, such The findings and outcomes of
trial. The members in this group are
immensely supportive of research.
Email policy@bcna.org.au. these projects help improve the
• Are you a researcher looking for trained consumer
as our advocacy efforts experiences of breast cancer
Thanks to BCNA and the amazing
women in Review & Survey Group
representatives or people who have a lived
experience of breast cancer? Email satt@bcna.
late last year in relation patients across Australia. for helping me in my PhD.’ IF YOU REPRESENT
Review & Survey Group ANY OF THE
org.au, or find out more on our Information for to securing a long-term members, such as Cindy, often
If you’re interested in sharing ABOVE GROUPS,
Researchers webpage. tell us they found these research
• Have you been diagnosed with breast cancer?
commitment to telehealth. opportunities interesting,
your experiences to help
with the latest breast cancer
WE PARTICULARLY
Consider using your voice for change by joining meaningful and rewarding.
research, please complete the ENCOURAGE YOU TO
our Review & Survey Group. You will have the form to join BCNA’s Review & JOIN THE REVIEW &
opportunity to choose to participate in surveys, Survey Group.
focus groups and clinical trials related to breast SURVEY GROUP.
cancer. Find out more on page 19.
18 March 2022 | Issue 90 Breast Cancer Network Australia bcna.org.au Issue 90 | March 2022 19Calling
for change
‘With this in mind, BCNA has Reducing the financial BCNA wants to ensure that
established some priority areas burden of breast cancer Australia’s public health system
where further commitment is sustainable and capable of
is needed from the federal The financial burden of breast delivering the best possible care
government to improve outcomes cancer has been a longstanding to those with breast cancer and
on breast
for those with breast cancer,’ priority for BCNA. Our 2021 Breast will be calling for investment in
she says. Reconstruction in Australia Report the future of the specialist cancer
highlighted the high out-of-pocket workforce and for changes that
Some of these areas are: costs experienced by women address the significant elective
• greater mental health support accessing breast reconstruction in surgery backlog.
for those with cancer the private system, and our 2017
Financial Impact of Breast Cancer Best use of telehealth
cancer
• reducing the financial burden report outlined impacts in areas
of a breast cancer diagnosis Our network has reported the
ranging from Medicare rebates to benefits of more flexible care
• investment into health system private health insurance. delivery through telehealth.
recovery and sustainability The burden of having cancer, It has helped those who are
• best use of telehealth. treatment and feeling crap was geographically isolated, or
issues
sitting on one shoulder and the, vulnerable to COVID-19. However,
The success of BCNA’s advocacy ‘Oh, my God, I’ve got no money, BCNA does not consider telehealth
to date has always been to not what am I going to do?’ burden an appropriate replacement for
only identify problems but, most was sitting on the other one. It just face-to-face care, particularly for
importantly, to be involved in became this pervasive horrible those receiving a cancer diagnosis
their solutions. As we progress thing that never went away. – or with inadequate access to digital
work ahead of the 2022 federal Georgie, BCNA’s Financial Impact technology.
election, we will be making of Breast Cancer report.
specific recommendations to ‘Telehealth appointments were
those contesting the election for Reducing the financial burden of not as reassuring or did not
meaningful policy changes that breast cancer is BCNA’s year one feel as supportive as face-to-
we know will improve outcomes priority in our Policy & Advocacy face appointments face-to-face
Strategy: Towards 2025 (see page appointments.’ – COVID-19 impact
Never doubt that a small group of thoughtful, committed citizens for those with breast cancer.
18) and will heavily influence our survey respondent.
We’ll share more about these
can change the world. Indeed, it is the only thing that ever has. recommendations once the election advocacy leading into this year’s BCNA welcomed the long-
has been announced, along with election. BCNA will not only be term commitment to telehealth
– Margaret Mead (1901–1978) some practical ways you can help. calling for policy changes to announced at the end of 2021,
increase and expand subsidies but continued to advocate for
Improved mental for important breast cancer immediate changes to retain
health support for those treatments, but initiatives that the flexibility of this service as
with cancer facilitate greater access to financial COVID-19 cases increased. This
T
support as well. advocacy was successful with the
his well-known quote Our network understands the impact The Australian Institute of Health
Investment in COVID-19 reinstatement of longer telephone
above is a timely of policy decisions and how policy and Welfare has reported that
telehealth consultations on the
reminder of people translates into action at a local level. the demand for mental health health system recovery and Medicare Benefits Scheme in
power as BCNA reflects Lessons learnt during the COVID-19 support has increased substantially future resilience January this year. We will continue
on our advocacy pandemic also mean we know that compared with pre-COVID periods.
The health environment has to call for further investment to
efforts over the past few months evidence-informed policy action Many within our network are
changed rapidly and drastically fully realise telehealth’s potential
and we look ahead to this year’s can have meaningful and immediate struggling with the strain of the
across Australia to respond to the and consider how optimal care can
federal election. impacts when implemented with pandemic combined with the
COVID-19 pandemic. We know that be maintained regardless of how it
consumers at the centre. existing psychological impacts of
The 2022 federal election presents cancer care has been impacted by is delivered.
a breast cancer diagnosis, creating
an opportunity for us to advocate ‘BCNA has been at the forefront increased burden on limited workforce shortages, staff burnout,
for improvements to Australia’s of Australia’s ongoing response
How you can help
specialist mental health resources. reallocation of health resources,
healthcare system and health to COVID-19 over the past two and the effects of high COVID-19 Add your voice to our call for action
policies in the interests of people years,’ says Vicki Durston, BCNA’s BCNA addressed some of these hospitalisations. on the issues that matter most to
diagnosed with breast cancer. Director Policy, Advocacy and needs through resources such as people with breast cancer. Stay
Charlotte Tottman’s podcast series, Over the last two years, BCNA has
Member Support. ‘We know that tuned for opportunities to engage
With over 160,000 members across ‘What You Don’t Know Until You worked with various stakeholder
this response is both causing and with and support our election asks,
Australia, we are an extensive and Do’, launched in 2021. Ahead of the groups and been the voice for our
exaggerating unacceptable gaps including getting in touch with your
influential network that offers election, we will be calling on policy network on issues ranging from
in access to breast cancer optimal local politicians and candidates.
unique insight into the lived makers to consider the unique needs elective surgeries, lockdowns, the
care, and our health systems are
V
icki Durston experience of breast cancer. of those with a cancer diagnosis. COVID-19 vaccine, and access to
experiencing unprecedented strain.
supportive care.
20 March 2022 | Issue 90 Breast Cancer Network Australia bcna.org.au Issue 90 | March 2022 21You can also read
