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 ❤️
A big welcome to all New Online Network Members .....
A warm welcome to all new Online Network members - to the club that no-one really wants to join! Here, You can raise ANY issue, and get helpful replies from those who’ve gone before you, cos we 'get it'. Nothing is off limits. We have ‘private groups’ for some more personal discussions .... so feel free to join any of them, if they suit you. Category: Groups | BCNA Online Network We are happy that you found us - as we were in the same boat not that long ago. The members here are just wonderful and will provide you with as much support as you need. Just ask away! If you put your story in the 'Newly Diagnosed' Thread, we'll have a better understanding of what you are going thru - and don't forget to add your 'town or region' in your Profile info - we may have members nearby who you can meet up with for a chat and a coffee. https://onlinenetwork.bcna.org.au/categories/newly-diagnosed We all know the absolute turmoil that comes with a BC diagnosis .... specially after a ‘clear mammogram’ and no family history. This was my story. My MG was clear just months before my wonderful GP found it, by accident! I had lumpectomy, Rads and now finished after 7 years of AI Tabs. If you can, take someone with you to your appointments for support - as it can be daunting sitting there alone. A 2nd set of ears also picks up points raised that you may have missed - and ask relevant questions too (as did my Sister in Law with me.) Also, consider recording your meetings on your mobile phone - so that you can go over it again later, if you have to, to query a statement, or just to have as a record. Your whole world is turned upside down in a millisecond, as you navigate unknown areas of our health system! It is almost a conveyor belt! First you do this, then this, then go there and do that, then come back here and do this .... and it may take a year or two for your life to settle down. It is totally 100% ok to skip between anger, denial, sadness - but if you find the sadness is overwhelming you, please seek professional help! Your GP may be able to refer you to a psychologist ... or your local Breast Cancer Centre May have help there .... where you are more likely to find a bc specific psychologist who is more familiar with BC issues. Just talking about it openly and sharing it with a professional should be able to give you coping mechanisms ... Also, consider listening to Charlotte Tottman's Podcasts on her own experience with BC - she is a specialist breast cancer Counsellor - and was surprised at her own reaction to the news, when she'd been counseling others for many years & thought she 'knew it all'! She has done 2 'seasons' ... check out the 1st season, right from her diagnosis onwards and how she coped. She is very easy to listen to & you'll probably recognise your own reactions in many of the podcasts. http://www.drcharlottetottman.com.au/my-podcast.html Also consider ringing our Helpline, for a confidential, one on one chat - just phone 1800 500 258, Mon-Fri, 9-5 You will make new friends who will support you (specially on this forum) and may lose some old ones, who just do not understand what you are going thru. Most of us here, have found wonderful friends within the group and have even met up with them in ‘real life’ before this Covid thing and since - hopefully they'll get on top of it soon & our lives return to a 'new normal'! If there is anything you want to discuss in a more private manner, you can message a member (or a group of members) and chat in total privacy. Personally I found that it mucked with my BRAIN more than anything else! And sometimes that is very hard to control, as it has a mind of its own! Keeping BUSY doing things is the secret .... get back into your hobbies or take up a new one - even more so now with Covid as we can’t get together with buddies as readily as before. Try & keep your sense of humour 'up there' - we have a really good 'funnies page' (called Friday Funnies, but we add them every day!!) Just click on the link to add pics and posts ... https://onlinenetwork.bcna.org.au/discussion/19116/friday-funnies#latest If you are into arts & crafts, we have a 'Creative Corner' https://onlinenetwork.bcna.org.au/discussion/14979/creative-corner#latest and if into your garden, a Gardening post as well!! https://onlinenetwork.bcna.org.au/discussion/comment/186078#Comment_186078 And we now have a Fishing post, as that is one of my passions! https://onlinenetwork.bcna.org.au/discussion/19494/fishing-brag-pics If you are an artist or a knitter or do chrochet or other art & craft stuff ..... whack up a picture here!: https://onlinenetwork.bcna.org.au/discussion/14979/creative-corner#latest ; If you have 'fur kids' - put their pic here & describe their funny antics ... https://onlinenetwork.bcna.org.au/discussion/comment/92526#Comment_92526 We even have a funny Xmas page .... feel free to add any that you’ve seen! https://onlinenetwork.bcna.org.au/discussion/20086/christmas-funnies-put-them-up-here-for-a-laugh#latest Try not to use Dr Google too much (difficult tho it is) as there is just so much conflicting information out there (and much of it is REALLY OLD & OUT OF DATE), and every BC case is totally 'unique' and it will only scare the pants off you! If you haven't had your surgery yet, we have some posts here on what to take with you to hospital, to make it 'easier' on you. https://onlinenetwork.bcna.org.au/discussion/16442/prep-for-surgery/p1 And for your annual checkups, here are some ‘tick sheets’ to help you put your questions together for your medical team. (Make sure you click on the documents at the BOTTOM of the post, as the others are only sample pages.) https://onlinenetwork.bcna.org.au/discussion/21973/questions-to-ask-post-surgery-of-yourself-to-your-specialists-tick-sheets-self-assessment/p1 Take care, and all the best to you!
Partial Breast Radiotherapy
Hello 👋 community I was diagnosed with breast cancer, and while it has been surgically removed, I’m now entering the next phase of treatment. I would like to know if anyone has experience with partial radiotherapy and what side effects—both short-term and long-term—you may have encountered. I'm feeling a bit anxious about this process.
Today's feelings in poetry
Lucky So lucky, people say. That they caught it when they did That it hasn’t spread That they got it all That I have insurance So, so lucky. That my friend told me about her cancer That I finally moved my arse and Went and had that mammogram That I live in the lucky country So lucky That my prognosis is good That my job will be there for me That I am surrounded by family and friends With their love, soup and casseroles. Lucky. That my new set are perkier Smaller, Scar-rier, numb-ier. A bit lopsided Like me. Some days though, I just feel A tiny bit Unlucky.
