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 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!Compass (ABC) The Breast Decision - NOW - should be on iView soon
Sun 18th May - Compass: The Breast Decision - now available to watch on ABC iView https://iview.abc.net.au/video/RN2411H008S00 BCNA was 'shown' in one segment. Charlotte Tottman is interviewed re her own decision on choosing to go flat and how her breasts were very important in her sex life with her husband - but they'd 'done their job' on raising her 4 children .... Yes, She misses them - but in her words, she looks in the mirror every morning for 5 secs and says she 'is not too shabby'. She encourages women to look at themselves every day for 5 secs - and to also share their scars with their partners & even their children, so that they are 'a part' of the recovery.
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.Listening to Raelene Boyle's podcast is well worth it, as well as Charlotte Tottman's!
We often recommend that new members have a listen to Charlotte Tottman's podcasts on dealing with a breast cancer diagnosis http://www.drcharlottetottman.com.au/my-podcast.html. and I've only just listened to Raelene Boyle's - and it is terrific! SO ... If you've never listened to the interview with Raelene Boyle .... it is well worth listening to. Raelene was diagnosed at the same time that Lyn Swinburne was first starting her support for women with breast cancer (out of a Bakers Delight office!) just under 30 years ago. She was then diagnosed with Ovarian Cancer, twice! She is still going strong & is an Ambassador and founding board member of BCNA https://www.bcna.org.au/resource-hub/podcasts/upfront-about-breast-cancer/upfront-about-breast-cancer/episode-21-raelene-boyle-on-pulling-herself-out-of-the-darkness/
Election called
Hi everyone - it has been a while since I have posted myself but as always I love the many messages you share with each other that I have a chance to read. Last week Vicki (our Director of Policy, Advocacy and Support Services) and I were in Canberra meeting with both the Minister for Health and Shadow Minister to take them through our policy priorities. I hope you have had a chance to read them: https://www.bcna.org.au/latest-news/bcna-news/bcna-policy-priorities-2025/ These are driven by your experiences and where our Network wants the Australian Government to invest. Keep any eye out on our social media and through the Online Network on updates on commitments the parties may make. Love your work KP
Adelaide-based members: Opportunity to participate in Breast Cancer documentary
Hi everyone! I'm sharing an opportunity to participate in a documentary being created as part of a second-year film project at the Academy of Interactive Entertainment (AIE). The focus of the documentary to share women’s experiences of breast cancer, including diagnosis and treatment with the goal to highlight resilience and offer support to others through real stories. The project is looking for women at different stages of their diagnosis to interview. All stories are welcome, and the project can be adapted to different experiences. You can take part in this study if you: Have been diagnosed with or are living with breast cancer Live in Adelaide What will participation involve? The filmmaker is seeking six women to interview for this documentary. Filming will take place over three consecutive days, with scheduled dates between February 28 and March 28. Specific dates will be confirmed closer to the time. The documentary will have 2 key ideas: Frank interviews about their breast cancer diagnosis experience A fun photo shoot full of colour, laughter and positivity Interviewees will be provided lunch and there will be a Mental Health Nurse available on set for the full shoot days to provide care and support to both the volunteer participants and the crew. Please note, as this is a university project, there is no budget available for reimbursements. At this stage, this documentary will be for internal use only. If you would like to register your interest, please fill out the Google Form here. Thanks! Erana BCNA Consumer Engagement Coordinator
Diagnosed Today
Hi all, I'm new here. I'm 48. I had my last Mammogram in November 2022, and was due for my next December 7th....however.... I went to the GP in November after feeling a breast lump for 10 days which I was hoping was hormonal. It didn't go away so I got it checked. GP didn't seem concerned but she appreciated that I was and ordered mammogram & ultrasound. Appointment was in 2 weeks. On Wednesday 4/12 I had the scans, the mammogram lady went quiet, later with the sonographer I said 'I'm just not sure if it's in my head or if I'm being hyper-vigilant' He said 'I'd say you're being the right amount of vigilant', then told me he would go and get the Dr who would need to check me. The Dr started telling me that I'll need a biopsy and that the statistics in Australia in particular are very successful for treating breast cancer. He went on to say that he'll get his report to my GP straight away and if we decide to use them for biopsy they'll get me in straight away and to contact my GP. So I drove home and on my way I stopped at the GP, the receptionist could not get me in till the next day to see the GP. I left in tears and went home. I decided to do some work and 2hrs later I got a call to say the GP wanted to see me immediately. I drove back and saw the GP who gave me a referral for urgent biopsy. I went straight to the local ultrasound place to see if they could book me an appointment at their sister site, that I attended earlier that day. They said they'd need to speak to their Dr and would call me. Within an hour they called me, and said their Dr would come to my local clinic and do the biopsies there for me the very next day, saving me the 45minute drive. Thursday 5/12 I had the biopsies of my breast and lymph node done. That was pretty smooth sailing and the Dr said he didn't want me waiting a week at the other clinic so came up here especially for me. All the staff were SO lovely and I'm eternally grateful for their care and concern - however the urgency is absolutely scared the crap out of me 🫣 Today 10/12 I got my biopsy results and am officially diagnosed with Breast Cancer. No idea what most of it means but basically 👻 Invasive Carcinoma NST; and 🐝 Metastatic Adenocarcinoma 🍃 ER/PR Positive 🍂 HER2 Positive (Amplified) An hour after j left the GP, the local Cancer Centre phoned me, so I have: Medical Oncologist Appt: next Monday Radiology Oncologist Appt: next Thursday I don't understand what NST means, and it wasn't staged on pathology...is that usual? I haven't told my children, and am hoping to hold off till after sons' birthday and grandsons first Christmas. One thing I have to say is that I am SO incredibly grateful for the swiftness of care I've received and am receiving. It's a crappy club to be a part of 😭 but I look forward to 'meeting' you all xx
Choosing a surgeon (Melb) -New diagnosis overwhelm
Hi there, Im 49 and had my first routine mammogram in September- no family history or symptoms. They discovered calcifications, had a biopsy then 5 days ago I was told I had breast cancer. Stage 2-3 6cm aggressive.That’s all I can remember to be honest as I was in so much shock. Got referred to my GP in the afternoon and had to get referrals to a surgeon. With no time to think and still in shock our GP recommended Dr Sarah Kemp at Cabrini Malvern and a friend (and gp) recommended Dr. Melanie Walker at the Epworth in Richmond. It was so overwhelming and fast. Im someone who can’t make even the smallest of decisions eg what shoes to wear in the morning! lol We have met one surgeon as they had an apt the next morning. Do I meet the other as well? Keen to know is anyone had experiences with these breast surgeons and their team? How do I choose? Any advice would be very much appreciated. Feeling very overwhelmed and stressed! also worried about work and finances… I guess that’s another question!
Newly diagnosed - feeling lost despite stuff happening.
I was diagnosed a few weeks ago, rarer invasive mucinal carcinoma. Coping well with what I know is happening but not so well with what I need to do, or where to get explanations. I’m having a Scout clip implanted tomorrow because I can’t have the MRI my surgeon requested. I have a CRT (heart) device and MRI was requested because the cancer is not well defined. So now I won’t know extent, lumpectomy, mastectomy, until the operation. Operation is on 28th. I guess my main thing is who to talk to about what will happen next. Having Pre Op stuff at GP next week, but do I just wait until the hospital gives me more detail? Do I ask to see a breast care nurse, there’s one at the surgeons office? Seeing GP I have so much to ask and take in because I’m on lots of drugs for too many health issues and I have to stop some, take less of others. And my normal confidence has flown the coop. Is this just a normal reaction?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.