Sharing your breast cancer experience with the media
Are you interested in sharing your breast cancer story?
BCNA exists to support and advocate for our members. The media (print, radio, TV and online) is one way we keep the wider Australian community aware
of what BCNA does and what more needs to be done to improve breast cancer treatment in our health system.
Our members have so many wonderful and important stories, and we want to help you to share them with a wider audience. We're creating a list of BCNA members who are keen to share their stories with the media, so we can draw on them if and when required.
Here are some examples of stories our media team has worked on with our members and the news media:
Long wait times for breast reconstruction surgery in Cairns, QLD:
http://www.abc.net.au/news/2017-10-27/breast-cancer-survivors-agonising-wait-reconstruction-north-qld/9089424
The impact of sexual side effects of breast cancer treatment (featuring @SoldierCrab):
https://www.sbs.com.au/topics/life/health/article/2018/02/26/breaking-taboos-talking-about-sexual-side-effects-breast-cancer-treatment
Men's breast cancer awareness day:
http://www.illawarramercury.com.au/story/5000764/wollongong-man-raises-awareness-after-mastectomy/
If you are willing to be interviewed please direct message either @Marianne_BCNA or myself @Sophie_BCNA with your name,
state and topic you’d like to speak about. It can be any topic related to your
breast cancer journey - good or bad, happy
or sad.
We fully respect that many people do not want to publicly
share their story which is why we will only contact people who register their
interest to be involved. You will be contacted by a BCNA staff member to check whether you are still interested before your details are passed
on to a journalist.
Comments
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Hi there love feel free to use the interview i did With Pippa Sheehan from channel 10 late last year about wait times for recon in Brisbane too if you like. Margie. Xx2
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I am happy to share my story. Anything to raise awareness and help save a life. Put me on the list BCNA.1
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Happy to share my story but you know that
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Happy to help1
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Not sure I have anything groundbreaking to say but happy to be interviewed. Have inboxed.1
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Perhaps ask the fellas too. @traveltext2
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Would like to share my experience of my breast cancer journey - Hasn't all be good, but one good thing that came out of my complaining to Breastscreen Qld on the Gold Coast that I felt I was pushed to use the Doctor who did my diagnosis at Breastscreen and pushed to use private health system, costing around $6000 our of pocket up to day after surgery, and Breastscreen have now introduced a sheet for people diagnosed at Breastscreen that lists ALL the breast surgeons on the Gold Coast , with their contact details and most importantly IF they operate in PUBLIC and/or PRIVATE system or both. The patient is also told not to panic and to discuss with their GP for a suitable surgeon, to Google or ask people, go on the bcna online forum before rushing into a decision. That was one problem I had encountered so I took steps to right it for the next patients coming through. I am hoping to do that along my way with this journey. The next big step is getting the costs of the out of pockets down to a manageable amount for EACH patient. My radiation quote was initially $15000+ but I stood firm and said in that case I would use the same company but go through the public system - I was then offered to pay $140+ per week for the 6 weeks of treatment. But I sat beside a lady at OUR measure up sessions for the radiation who had told me she had o sell her car to afford the radiation. THAT IS NOT OK!!!!!!!! The private system need to talk to their patients and realise that just because we have private health insurance it doesn't mean we have cash at bank - it just means we cut other expenses to ensure we have that private health insurance - BUT NO we do not month laying around - we are pensioners and should be treated well but charged what we can afford. Whoops got carried away there - But that's a part of my MEDIA IDEAS. Also the slackness I experienced through the private system with NO Breastcare NURSE, no follow up regarding lymphodema etc etc etc. Many complaints about the private lack of support vs seemingly support in most public system.8
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I would be happy to share1
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So interesting @sandramj. I went through a BreastScreen clinic in Melbourne. One dr for the call back, a different one for the diagnosis appointment. At the end of that meeting I had a very good feeling about this breast surgeon. So I went with him and am so glad I did.
He runs his own business with some other surgeons and their mission statement talks about how they want to offer women a better, swifter, more streamlined and more supportive treatment service than is otherwise available.
I met my breastcare nurse at my very first appointment in my surgeon's office, later in the day of my diagnosis. She gave me my Berlei bra, and visited me the next day in hospital after my first surgery. She sat with me for over an hour, when I was so very very angry.
My breast surgeon texts, emails; it feels contemporary, modern, and I feel well supported.
We have private health insurance, and as you say, sacrifice to make these payments. It's not easy with a household of seven people. I raised financial stress early and my BS immediately suggested ways to assist and work round it. He also charges a bare minimum gap for his surgeries. I asked him about it recently and he said he just didn't have the heart to charge more. I am truly lucky and blessed to have found him.
But it was completely random. I think there is much to what you say. Everyone woman should not have to rely on the kind of luck I had. Every woman should have informed choice. I am full of admiration for you, for your gumption to raise these issues and effect change. Bloody brilliant!7 -
There was a pilot '''Step Down" clinic at the local hospital here where woman who had a call back could go to get rescreened. After 12 months they closed it. Breast screen now sends a recalls a letter telling them to front up at Ringwood.
Predictably people dont question this, despite Maroondah Health being 4 hours away if you drive and 7, yes 7, hours away if you need to use public transport.This when there is a perfectly appropriate facility in located 50 metres away from where the original screen was taken.
So why are people being called to the big smoke? Money. Breast Screen gets paid for follow up services at Maroondah, and nothing if further tests are done locally. This is bloody disgraceful and I lobbied for years to get an addition to the recall letter stating it didn't matter where you went, you must needed further investigation. No, they wouldnt do it. Grrr.
Yes Breast Screen is a great service, but they don't always have the patients at the top of the priority list.
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Most of my journey is already on bnca but the diagnosis and surgery may not be. I have most of it on a word doc and happy to share.1
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Happy to share my story1
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If we can get the media at all interested in lymphoedema as a long term side effect, I would be happy to talk about that.
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