Frustrated by Perfect Survirors
Please realise I am not I am not criticizing anyones cancer journey, their diagnoses, treatment, support, or what they have done to cope with having cancer. I am needing to have a vent... I am frustrated that all of the people that I see in my local community or in the media that have had treatment for breast cancer appear to the public to be the perfect role models - chirpy, people fund raised for them during their treatment, involved in anything cancer, promoting cancer workshops, mentoring other survivors, dressed immaculately, have lovely thick healthy hair that matches their age, are able to work their own hours... they seem to have come out the other side winning. I know what I see in public is not what might be happening behind closed doors, but I am none of those things. I am not ok. I am not ok most days. I recently started a fitness group for women affected by breast cancer. The lady running it is lovely, but she had cancer only 6 months before me and she seems perfect and is mentoring and helping me!! I am the same age, same timing of cancer treatment. I have **bleep**ty white thin hair, my face is getting brown splotches, my body is 15 years older than it should be, they seem surprised when I say I have to work fulltime. I just want to know that there are other people out there 5,6,7, 10 years after their cancer treatment that are still not ok. I feel seen as stupid --> it happened 6 years ago I should be back to my old self. I honestly don't remember who she wasIs 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.
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 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! 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 And if you need 'spirits lifted', we have a great Wise Words thread too: Wise words .... | BCNA Online Network 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 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!
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 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 ❤️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.
