Feeling lost
I am newly diagnosed and just feel lost. My appointments and tests have been so close to each other. I have had mammogram, ultrasound, biopsy of the breast, FNA of my lymph node, a pet scan and having a mri tomorrow. My diagnosis is invasive carcinoma NST (invasive ductal carcinoma), grade 3, triple-positive (ER+/PR+/HER2+), with associated high-grade DCIS. The ki-67 is 60%. I have been told the I will have 4 months of Chemo, then surgery, radiation and long term medication after. I met with the breastcare nurse and found her extremely unhelpful. I just don’t know what to expect and how to feel at the moment. Has anyone been on a similar journey who can tell me what to expect?Is it ‘have’ or ‘had’ breast cancer?
Im newly diagnosed and waiting on the results of an MRI before my surgeon finalises my plan going forward. As it stands now, I’ll be having a lumpectomy, followed by radiotherapy and then hormone therapy. My question is a bit out of the box and was hoping for some insight. After having surgery, and hopefully the surgeon is confident that margins are clear and lymph nodes are clear, do I then refer to having ‘had’ breast cancer or do I still ‘have’ breast cancer? So basically, when do I transition from ‘present tense’ to ‘past tense’? I know this question is a bit out there but I’m just wondering how do I describe my condition after a hopefully successful surgery.reconstruction or remain flat?
Hi everyone, Back in March, I had an ultrasound and a 3D mammogram because I experienced bloody nipple discharge. The ultrasound showed an abnormality in one of my milk ducts, so I underwent a small surgery. The pathology came back as DCIS and florid LCIS. Shortly afterward, I had a second breast-conserving surgery (lumpectomy). Unfortunately, the pathology still showed extensive florid LCIS and positive margins. At that time, my doctor suggested starting radiotherapy after about a month. However, before I began radiation, I had another episode of bloody nipple discharge, so I had a breast MRI. The MRI showed abnormalities in both breasts, and I then underwent biopsies. The biopsy results showed that I still have florid LCIS in my right breast, while the lesion in my left breast turned out to be a benign papilloma. I also underwent genetic testing and transferred my care to Peter Mac. My new surgeon told me that I need a right mastectomy, including removal of the nipple. As for the left breast, we're waiting for the genetic test results. If the results are negative, the current plan is to only remove the right breast. I have a fairly small chest, and to be honest, I don't feel a strong desire to have reconstruction. At the same time, I'm worried that I might regret not doing it later. I'd really like to hear from people who have had a mastectomy, both those who chose not to have reconstruction and those who did. What were your reasons for your decision, and how have you felt physically and emotionally after surgery? For those who chose reconstruction, I'd also love to hear from people who had autologous (flap) reconstruction versus implant reconstruction. What has your experience been like, and are you happy with your decision? This is such a difficult decision, and hearing about your real-life experiences would mean a lot to me. Thank you so much for taking the time to share.
Survivorship: The Part We Don’t Talk About — But Should
I’m 11 years post my second breast cancer diagnosis, and I’m grateful every single day to still be here. I work five days a week, I show up, I contribute, and I keep moving forward. I’m proud of that. But I’ve also learned that survivorship is far more complex than anyone prepared me for. After Taxol, 5‑FU, and a DIEP flap, I now live with: permanent hair thinning, weight gain, early menopause, neuropathy, hand‑function issues, all‑over body cramping, heart failure, cataract, blocked tear ducts, damaged veins, and numbness from nerve damage. I’ve adapted. I’ve rebuilt not just physically but mentally/emotionally. I’ve learned to live in a body that’s different from the one I had before. But here’s the truth: we don’t talk about this part. Not with friends. Not with colleagues. Often not even with each other. We carry the long‑term effects quietly. We push through because that’s what survivors do. We’re grateful — deeply — but gratitude doesn’t erase the challenges. I’m sharing this to encourage honest conversations. Because survivorship is real work. Because so many of us are navigating long‑term effects in silence. Because speaking up helps others feel less alone. If any of this resonates with you, your experience is valid. We can be strong, grateful, and resilient — and still tell the truth about what survivorship really looks like.
Dense breast tissue and what it conceals.
My recent lumpectomy revealed multiple tumours that did not show on mammogram or ultrasound. Manual palpation led to a core biopsy and on to lumpectomy. I am awaiting results of a follow up MRI after the pathology report post lumpectomy and will be discussing with my surgeon further surgery and treatment. I am daunted by the thought as I have been busy researching and translating the results of my lumpectomy pathology. I am an inveterate student and feel more able to cope with what is to come if I understand what has eventuated up to now. Not my favourite 79th birthday surprise!Skin changes post radiation
After radiation on my left breast I noticed a large 15cm bruise like mark on my back (same side as the radiation treatment area). My radiation oncologist didn't believe it had anything to do with my radiation and she suggested I use a topical steroid cream to see if it clears it...it didn't 😒 I tried an antifungal cream as it is a little itchy however this also doesn't seem to be working. I was wondering if anyone had experienced such an issue? I understand my immune system has taken a hit and quite possibly it's just an immune response from treatment. I'm just perplexed as my breast skin didn't change at all post treatment. Thanks in advance 😊🎧 Have you connected with our podcast: Upfront About Breast Cancer
Within our Online Network, we know how important it is to feel informed, supported, and connected at every stage of a breast cancer experience. One of the many ways we support our community is through our Upfront About Breast Cancer podcast. This is a resource created for you, where real stories, expert insights, and practical guidance come together in a way that is easy to access whenever you need it. A much loved part of the podcast is the What You Don’t Know Until You Do series, hosted by Dr Charlotte Tottman. Dr Tottman is a psycho oncologist who has supported many people through the emotional impact of cancer and, following her own breast cancer diagnosis. Her thoughtful and compassionate approach creates a space where the emotional side of breast cancer can be explored openly, helping listeners better understand their own responses and feel less alone in what they are experiencing. 💬 Real conversations from our community Upfront About Breast Cancer brings together the voices that matter most. People with lived experience share their stories alongside healthcare professionals and experts, creating conversations that feel both genuine and reassuring. These discussions reflect the reality of breast cancer. They explore the shock of diagnosis, the emotional highs and lows, and what it can take to adjust to life during and after treatment. For many, simply hearing someone else say “me too” can make a powerful difference. 🌱 Supporting you at every stage We know that every experience is different, which is why Upfront About Breast Cancer is designed to support people across all stages. Whether you are newly diagnosed, living with metastatic breast cancer, supporting a loved one, or moving through life after treatment, there is something here for you. Episodes cover important topics such as what to expect after diagnosis, how to communicate with your healthcare team, managing side effects, and navigating the healthcare system. This means you can return to the information in your own time, absorb it at your own pace, and feel more prepared for the next step in your journey. 👉 Listen to Upfront About Breast Cancer podcast here. 🌸 A gentle reminder Some topics may feel emotional or challenging. Please take things at your own pace and look after yourself as you listen. Support is always available, the online community and our Helpline on the phones are here for you. Have you listened to Upfront About Breast Cancer? We'd love if you shared: an episode that stayed with you something new you learned a conversation you would like to hear in the future 💪 Your experience may help someone else going through a challenging part of their journey. We are stronger, together.📢 Have you ever faced a big bill, or a long journey just to get a diagnostic breast scan? We want to hear from you.
When you find a concerning lump or notable change in your breast, one of the most important things that you should be able to access quickly and safely is the answer to: is this breast cancer? We know that for too many people in our community, the pathway to diagnosis is full of barriers: high out‑of‑pocket costs, long waitlists, no public imaging options, or hours of travel just to access essential scans. ✨ As part of our End‑of‑Financial‑Year national advocacy campaign, we’re calling for fair and equitable access to diagnostic imaging for all Australians. To do that, we need real people to share their experiences and stories that show what is happening right now. BCNA is seeking lived experiences from anyone who has faced challenges such as: 🔸 Travelling long distances or interstate for a diagnostic breast scan 🔸 No public diagnostic facility available in your region 🔸 Significant out‑of‑pocket costs for essential imaging 🔸 Long waitlists that delayed your diagnosis 🔸 Impacts on treatment, health outcomes, or mental wellbeing due to these delays. 💪 Your story is powerful. It can help us demonstrate that access to a diagnosis is not a luxury - it’s a right. Your story will help us advocate for a system where every Australian gets the answers they need, regardless of their bank balance or their postcode. If you’re interested in having your voice heard and suppotring BCNA's advocacy efforts, please complete our Expression of Interest form here; 👉 https://formstack.io/907FC All stories will be handled with the utmost care and confidentiality by our Communications department. Thank you for helping us shape a better system where every Australian can get timely, equitable access to the diagnostic care they deserve ❤️📢 Have you ever faced a big bill, or a long journey just to get a diagnostic breast scan? We want to hear from you.
When you find a concerning lump or notable change in your breast, one of the most important things that you should be able to access quickly and safely is the answer to: is this breast cancer? We know that for too many people in our community, the pathway to diagnosis is full of barriers: high out‑of‑pocket costs, long waitlists, no public imaging options, or hours of travel just to access essential scans. ✨ As part of our End‑of‑Financial‑Year national advocacy campaign, we’re calling for fair and equitable access to diagnostic imaging for all Australians. To do that, we need real people to share their experiences and stories that show what is happening right now. BCNA is seeking lived experiences from anyone who has faced challenges such as: 🔸 Travelling long distances or interstate for a diagnostic breast scan 🔸 No public diagnostic facility available in your region 🔸 Significant out‑of‑pocket costs for essential imaging 🔸 Long waitlists that delayed your diagnosis 🔸 Impacts on treatment, health outcomes, or mental wellbeing due to these delays. 💪 Your story is powerful. It can help us demonstrate that access to a diagnosis is not a luxury - it’s a right. Your story will help us advocate for a system where every Australian gets the answers they need, regardless of their bank balance or their postcode. If you’re interested in having your voice heard and suppotring BCNA's advocacy efforts, please complete our Expression of Interest form here; 👉 https://formstack.io/907FC All stories will be handled with the utmost care and confidentiality by our Communications department. Thank you for helping us shape a better system where every Australian can get timely, equitable access to the diagnostic care they deserve ❤️
