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breastscreen saw something so I had biopsies last Wednesday, my gp was supposed to get the results by Monday, got a ph call from breastscreen to say the pathologist wanted to do more staining and my gp would get the results on Tuesday so I should see him Wednesday. and Im so depressed and scared and such about the whole thing. wouldn't be so bad but theres just me and my autistic daughter left now , friends I thought I had I dont and not a friendly neighbourhood I tried when we came here but was ignored. I have never felt so alone in my lifeAustralian women denied knowledge of their increased breast cancer risk
Approximately 10% of women have high breast density. At this point in time, thousands of Australian women are being denied important information about their breast health which could empower them to better understand and manage their risk of breast cancer. BCNA’s Director of Policy, Advocacy and Support Services, Vicki Durston, says Australia’s approach to population-based screening is not keeping pace with growing evidence that supports routine reporting of breast density. This due to the absence of national reporting standards and a lack of software in publicly funded screening services that can effectively measure breast density. “Every woman has the right to know and understand her breast cancer risk through standardised breast density reporting,” she says. “For those identified as high-risk or with high breast density, it is essential that clear options and pathways are available to support early detection and proactive risk management.” Breast Cancer Network Australia (BCNA) is currently advocating for a unified national approach to reporting breast density through Australia's national population-based breast screening program – BreastScreen. Mammography images showing the difference between spotting cancer in a fatty breast (top) vs dense breast (bottom). It's like "spotting a snowman in a snow storm". You can read BCNA's media release via the link Australian women denied knowledge of their increased breast cancer risk Read ABC's feature piece on our advocacy efforts: Mandatory breast density reporting
5 months since diagnosis
Hi, I have posted a bit of my story here but thought I'd post a more complete summary here for posterity. I turned 50 in Jan24 and moved from Melbourne to Adelaide in Mar24. Shortly after arriving I got a letter from BreastscreenSA offering free screening and basically ignored it, Then I started a new job in Aug24 and there are BreastscreenSA flyers on the doors in the ladies' loo and those faces kept looking at me everyday so in Nov24 I buckled and book in for a screen in my lunchbreak. I was in and out in 10 minutes, it was a little uncomfortable but not painful. I thought nothing more of it until I got a call 3 weeks later saying after reviewing the images a spot had been noted and I should come in for enhanced imaging, ultra-sound and based on the outcome of those, possibly a biopsy. The appointment was booked in for 2 weeks later. I didn't tell anyone, partner included, and tried not to think about it. I was in the 'its probably nothing' phase. At the appointment I was shown the original mammogram images pointing out the bright spot in my right breast they thought looked suspect. It was small, quite high up and at the back away from the nipple. I had the 3D mammogram and based on that they went ahead with an ultra-sound. They showed me the same spot on the ultra-sound and recommended a biopsy. I went ahead. I had no choice at that point to tell my other half as I came out with a wedge shaped bruise and dressing on my boob I was not going to be able to explain away. I should also say that being a normally healthy person I hadn't bothered registering with a GP since relocating so I had to call around and settle for the only place that was accepting new patients and could do an appointment the next day. 4 days after the biopsy and 9 days before christmas, I went back to the BreastScreenSA assessment centre for my results. It wasn't good news, I had a ~6mm, Grade 2 IDC ER/PR + HER2 -, and very dense breast tissue. The nurse called the GP on my behalf to make an appointment for the next day for a referral for surgery. I was referred to the RAH and had my first appointment with the surgeon and met with the Breast Care nurse just under 2 weeks later, this was 30Dec. The surgeon talked me though the treatment plan. It was to be a lumpectomy with a sentinel node biopsy followed by a course of radiation therapy rounded out with 5 years on Tamoxifen. No chemo required. I'm sure I should have asked more questions about the treatment plan, but to be honest I was so relieved I wouldn't need chemo and he wasn't suggesting a mastectomy I just accepted what he was telling me. I had another ultrasound and they placed a carbon track for the surgeon to follow. I was also booked in for an MRI due to the density of my breast tissue to check for anything the mammogram and ultrasound may have missed. That happened 2 weeks later and thankfully I didn't have to wait long for the results, 2 days later I was told there was nothing else identified on the MRI so we would proceed with the treatment plan which meant surgery 2 weeks later on 30Jan. I had the surgery on the Thursday, up to this point I hadn't really been too emotional or anxious. I was taking each day as it came and going by the 'it is what it is' principle so I wasn't overthinking it. My partner was also determined not to let me give into anxiety and worry, we are both of the British stiff upper lip type, we rarely get over-emotional and the approach worked well. Until I walked into the operating theatre, lay on the bed and burst into tears! It just all became very real and I started sobbing, they asked me to confirm the procedure they were going to be doing, which I did, then all I remember is the nurse holding my hand telling me they would take good care of me and me blubbing 'I know'. Then I woke up in recovery and started crying again, this time with relief. I was in the hospital overnight, I had very little pain - probably due to the pain killers, and I was discharged the next morning. I was given a prescription for some strong painkillers but I didn't need them, I was able to manage with just paracetamol. I was back at work on the Tuesday. I only told 2 of my closest colleagues about my diagnosis, one I sit opposite so I felt it only fair to explain why I might seem 'a little distracted' and was having so many medical appointments. The other is a friend. The only issues I had in the days following surgery was difficulty sleeping as I had to sleep on my back rather than my side/front which I prefer and some swelling which turned out to be a seroma that was drained when the dressing was removed. The special little pillow I was given by the BC nurse was helpful for sleeping a little more comfortably too. I had my post-op follow-up 10 days after surgery and got the news that they had removed a 9mm tumor with clear margins and the lymph nodes were also clear, so no further surgery required. The dressing and stitches were removed and the seroma drained. I was given a prescription for Tamoxifen then too, with instructions to start them sometime after the radiation therapy was finished. Then it was all quiet after that for a few weeks, I was left to heal and I was feeling pretty good, I still had numbness in my underarm area but the swelling was coming down and the bruising fading. 5 weeks after surgery I had my first appointment with the radiation oncologist who explained I would be having 15 fractions over 3 weeks. The planning CT was scheduled the following week, I had my little tattoos and treatment started 2 weeks after that. Call me weird, but I actually rather enjoyed the daily ritual of going to the hospital for my little 10 minute lie down. I might have felt differently if it hadn't been so convenient. I can get to the hospital from home in less than 40 minutes and it is only 10 minutes from where I work, so travelling wasn't an issue and I was able to have the sessions scheduled either before work or during my lunch break. I had very few side effects from the radiation, the only one of note being my nipple itched like crazy, I used the sorbalene I was given and the nurse gave me some silicone dressings that really helped, anti-histamine worked wonders when the itchiness was at its worst. My only other side-effect from treatment so far is a little bit of cording in my right arm which is being managed with massage and exercise through a lymphoedema physio. That brings me right up to the present. The only visible signs are a single scar about 6cm long in the crease of my right breast just below my underarm that is smoothing out and fading nicely, and some residual discolouration from the radiation that is also fading. Yesterday I went to the pharmacy to fill the tamoxifen prescription and took the first tablet this morning. My next appointment is in early August. I'll post more if/when side effects of the tamoxifen kick-in. This the phase of treatment I have been most worried about. I feel well and would rather just leave the whole thing behind me. But I know I can't do that. It was dumb luck that I went for that first mammogram when I did, that the BC was picked up when it was, and was able to be treated to simply. I feel very lucky to have come this far with so little disruption to my life, knowing it could easily have been so much worse. This was a very long post so thank you for persevering if you are still reading, and thank you to all that post, reply and like the posts on this forum. I've read so many stories that just reinforce the gratitude I feel for the support that is their for us all as we travel this journey.
Is there a 'waiting on results' section? If not, this is re 'calcifications' on mammo high risk.
Hi everyone, I feel like I'm 'jumping the gun' here in 'newly diagnosed'. Could have sworn I saw a 'waiting on results' area but maybe I'm confusing my searches. I am considered high-risk and have been attending the highrisk clinic for approx. 15 years. This year, they called me back into the mammo room and asked to take more pictures and the technician showed me the calcifications they were concerned about. Approx 5 very small but bright spots fairly close together. It was last Friday so I was told they would send the pics on to 2 specialists and I would get a call if anything further is needed. I feel positive that - suspicious or not - I'll be called back due to my high risk. I can't even sneeze without getting referred to someone so I don't think they'll feel confident saying 'wait and see' with me. So, of course now and I am googling DCIS and similar. There are a few 'prongs' to this question so not sure where the post fits. I am a candidate for prophylactic surgery. I always had this theory that I would continue high-surveillance, and not entertain the thought of surgery unless 'something came up'. And then, strangely enough, about 6 months ago I decided to make the appointments purely to be properly informed about surgery - I was so sick of urban myth and staff-room conversations where people with no idea think they can make stupid ill-informed comments. Anyway, I had the appointments and decided not to go any further with queries. Hmm, so here we are. Way too early I know but I am wondering about how much gets excised for removing DCIS, lumpectomies, etc. Too vague / too big a question. Maybe I'm looking for ppl who've had prophylactic surgery without ever being diagnosed - anyone 'fit-that-bill' here? Gosh, not sure what I'm asking but this is where I'm at. Hopefully tomorrow (Monday) I'll get a call either way. thanks.Follow-up screening post surgery
Moderator moved @Cobi post to main discussion area of the forum: Cobi Regional QLD Member Posts: 1 New Member 10:17AM Options Hello, my name is Cobi and I was diagnosed with ILC HER2 positive in January 2023. Since then I have had a double mastectomy. 2/3 of my lymph nodes were removed. I am now well and cancer free but have lost all faith in screening. I am really curious about post operative screening for potential reoccurrence.Launch of the Australian Cancer Plan
Hello Online Network members, We heard from our BCNA staff members attending the Clinical Oncology Society of Australia (COSA) Annual Scientific Meeting, that the 'Australian Cancer Plan' has been launched today. To learn more about the new Australian Cancer Plan, which aims to improve prevention, screening, treatment and management of all cancers for all people across Australia see Australian Cancer Plan website.
Policy & Advocacy Update - Vicki Durston - Feb26
As we continue to move through 2026, there’s a real sense of progress building across breast cancer outcomes - both here at home and internationally. I want to share two important moments that highlight how evidence, leadership, and advocacy are shaping a better future for those affected by breast cancer. ✨ Why AI in mammography can’t wait Eric Topol’s recent article, “Why All Mammograms Should Incorporate AI,” brings together powerful evidence showing that AI in breast screening is no longer a future idea - it’s part of modern, effective care today. One of the strongest examples is the large MASAI trial from Sweden, involving more than 105,000 women. When radiologists used AI as support, the outcomes were remarkable: 👉 29% more cancers detected 👉 24% more invasive cancers found 👉 No increase in false positives or recalls 👉 44% reduction in radiologist workload Two-year follow-up findings were equally compelling: fewer interval cancers, fewer invasive cancers, and fewer aggressive types such as triple negative and HER2-positive cancers. What international evidence now shows International evidence is telling a very consistent story. Large trials and real-world evaluations show that AI-supported mammography can safely increase cancer detection while reducing radiologist workload, without increasing false positives or unnecessary recalls. This matters in a system already under pressure. AI is also changing how we think about risk. New image-based risk models can analyse a mammogram that appears “normal” to the human eye and still identify women at higher risk of developing breast cancer in the next few years. This opens the door to more personalised, risk-stratified screening, rather than the one-size-fits-all model we rely on today. Here in Australia, BreastScreen is a highly respected program, but it was designed more than 30 years ago. While Victoria and NSW are now piloting AI within their services, we still lack a coordinated national approach for integrating AI into breast screening that reflects today’s evidence. What BCNA is calling for We are now at a decision point. The question Eric Topol poses - “If not now, then when?”- is the same challenge facing Australia. For BCNA, this is not about chasing technology for its own sake. We are calling for AI to be treated as a core part of the evolution of breast screening, not an optional add-on. That means: Embedding AI research, evaluation and implementation within BreastScreen Ongoing, in-program national investment in screening research and quality improvement Ensuring that the benefits of new technology are delivered equitably, so no woman is left behind because of where she lives or her background If we get this right, AI won’t replace the program Australians trust - it will strengthen it, helping detect cancers earlier, supporting an overstretched workforce, and moving us closer to truly personalised, risk-stratified screening.🔬 Current Research Exploring the Role of AI in Breast Cancer
There’s been a bit of buzz lately about artificial intelligence (AI) and how it might play a role in breast cancer screening and risk prediction. For many of us, AI can feel a bit mysterious or even intimidating - so let’s explore it! 👀AI Might Help Spot Breast Cancer Breastcancer.org explains that AI programs are being trained to look at mammograms (sometimes millions of them) to learn what typical breast tissue looks like and what might be a sign of cancer. The idea is that AI may pick up tiny changes or patterns that are easy for the human eye to miss. Researchers hope this could help radiologists detect cancer earlier or decide which images need to be reviewed first. AI is also being tested on other scans like ultrasounds and MRIs. It’s already being used in some parts of Europe, though it’s not standard everywhere yet. At this stage, it’s not about replacing radiologists but supporting the - almost like having an extra pair of very detail‑focused eye. Read more here 🧬Using AI to Understand Personal Risk Another interesting development is happening here in Australia. The VCCC Alliance is sharing early work from the BRAIx project, which uses AI to help predict a person’s risk of developing breast cancer. The system looks at mammogram images from more than 95,000 women and uses advanced computer models to estimate who might be at higher risk in the future. The hope is that AI could help create more personalised screening, meaning people who need extra monitoring might be identified earlier, while others might avoid unnecessary tests. The project is also exploring how AI might help reduce false alarms and missed cancers, two challenges in current screening processes. Read more here ✨Why This Is Interesting (and Why We’re Still Watching Closely) All of this raises some very natural questions: Could AI one day help detect cancers earlier? Might it offer more tailored screening for individuals? How do we make sure it’s safe, fair, and reliable? Researchers are excited about the possibilities, but they also emphasise caution. AI needs ongoing testing and real‑world evaluation before it becomes part of everyday care. For now, it’s simply an area worth watching with curiosity. It may one day become another useful tool in breast cancer screening and risk prediction but like all medical advances, it will take time, evidence, and thoughtful conversation. 💬Let us know your thoughts on this in the comments!BCNA Policy Priorities 2025
Every day, 58 Australians are diagnosed with breast cancer. Too many face high financial costs, and ongoing emotional and health challenges. That’s why BCNA is calling on the Government to make treatment more affordable, improve early detection, provide better support, and invest in vital cancer data. 🔗Read our policy priorities via the link BCNA Policy Priorities 2025
