Share your views: Information and support needs of people following treatment of breast cancer
Hi everyone, Erana from BCNA here! I’d like to invite you to participate in a research study opportunity led by James Cook University. Please see details below. If you can't access the QR code you can also follow this link Qualtrics Survey | Qualtrics Experience Management. If you have any questions or concerns regarding this research, please contact the research lead Tracey Ahern at tracey.ahern@jcu.edu.au This study has been approved by the James Cook University Australia Human Research Ethics Committee (#H9326).
Public patient Private radiation (Toowoomba)
Hi everyone, Just wanted to share a useful bit of info for anyone going through something similar. My nearest radiation facility is 4hrs drive away in Toowoomba, but it’s private & I am a public patient. I went for my planning appointment this week & at the end I was taken aside into a small office & given my ‘Estimated Fees’. The admin officer asked if I had means to pay $6000 on day 1 upfront, and that would then be rebated through Medicare. The grand total of 3 weeks treatment was $15000. I said that I could maybe borrow money from a relative. I felt very patronised & have been stressing for the past few days about how to get that money upfront. To top it off my (old) car broke down on the trip home, so now I need to buy a new one - ugh! I went to see my wonderful GP today to ask him to sign a Compassionate release of Superannuation form. He said ‘You shouldn’t have to touch your super, you’re a public patient!’ He rang the private hospital and clarified that it would be difficult to access money (particularly after being off work for surgery & chemo since May 2024). A lovely admin phoned me afterwards & explained that Medicare can fund the upfront payments. I just have to sign a form that they email me & each week of treatment I will have the funds from Medicare land in my account & it will then transfer across to the private hospital. I will only have to pay a total of $1000 over the course of my treatment. Phew! I was so stressed about this. Apparently this is not an option for all patients, but I think it’s important info if anyone else is in the same boat. The last thing we need is extra stress!
Podcasts are awesome!
Hi there Gail here. This is my first post. I was diagnosed on 24 May (7 weeks ago today) and had surgery 2 weeks later on 7 June. I start radiotherapy on 29 July. After that, on to hormone blockers, which I am most definitely not looking forward to. The past 7 weeks have been a whirlwind and it is only this week that I have felt up to starting to access some of the resources on BCNA's amazing website. I have been listening to the Upfront podcast series 'What You Don't Know Until You Do' and am up to episode 7 of season 1. Based on the first 6 episodes, I cannot recommend highly enough. So insightful, engaging and comforting. I find myself constantly nodding my head because much of the discussion resonates so strongly with my cancer experience to date. It's nice to be able to make some sense of it all and to know I'm not alone. Cheers, Gail 🥳
Looking for hope - (ENHERTU next treatment path)
Moderator moved @Kosta post from 'Activity Section' to 'General Discussion' Section: My name is Kosta and my wife was diagnosed with breast cancer in 2018, and it came back in 2021. As you all know it’s been a traumatic time, and now a few more spots have appeared which has us concerned and in an as it seems hopeless space. I'm not sure as to what I am asking, but maybe some hope?
Exchange Surgery and 4th Cancerversary 💗
Hello to everyone and Happy Easter 🐣🐇🪺. I’ve been a bit quiet on here, just focusing on life after breast cancer I guess, going back to work, trying to get healthier etc. Today I’m posting again because it’s my 4th cancersary 🎉, and I’m also 2 weeks post my third surgery since this whole ride started. This was the surgery I was most excited about though, because it was my recon surgery, i.e. bilateral exchange of expanders to implants (I’ll be posting a picture story soon in the private recon group for those interested). I had my expanders in for a record time, just shy of 4 years 🤦🏻♀️😄 (surgery kept being postponed for various reasons) so I might be able to enter the Guinness Book of Records 😅. The thing is, I’m absolutely terrified of surgery and pretty traumatised too, due to what happened after my DMX. It took a change of surgical teams 4 years ago and lots of counselling to be able to get to this state of being ready for it again. Thanks to all my hard work and my BRILLIANT specialist team, I got there, and I can’t even express how happy I am with the results 😃. My breasts now look like my original ones, albeit perkier 😏😁. They were an absolute mess from the 4 years of expanders, but my surgeon fixed my pockets perfectly and used implants that look very natural. The whole experience, despite stress from my previous trauma, was very easy and smooth sailing. I am beyond thankful and grateful to my team (Dr Eva Nagy ♥️ and Fred 💙) because without them this wouldn’t have been possible 🙏🏻🙌🏻🍀. It might seem like something so simple, but it is so important to healing as anyone going through this (all of you) will know and understand, because it means getting my body back to what it was (or to a new normal for those not choosing recon). Actually, better than what it was because I was going to the gym for a year prior, to prepare myself physically for this, and so I am stronger than I’ve been in a long time. Silver linings everywhere 😁. So now, every year on this day, I do something special for myself, as a thank you to ME for everything I’ve endured. One thing this cancer taught me is that I need to prioritise myself, because I was putting myself last before all this. Well, not anymore. It’s a work in progress for sure, but I’m now putting myself at the top of my list more and more often. My message, especially to all the newbies, is that it does get better. It gets a whole lot better. There will be a day and time when you won’t be thinking about cancer all day, every day - believe me! There will even be a day when you’ll forget you ever had it. You do get reminded again because it’s a bit of a ‘gift that keeps giving’ situation, but you find the strength again and keep moving on. It might not always seem like it and I definitely encourage venting and getting all the anger out, and asking for help when ever you need it!! However, there are lots of beautiful days as well ☺️. One more piece of advice: choose your medical team very carefully, because they will either break you or make you (speaking from experience). You are responsible for your life and wellbeing, but with the right medical team, you will have the support you need to do wonders. So, don’t rush this decision. Do research before choosing, and always seek a second or even third opinion if it doesn’t feel right. *Pictured are myself, the day after my surgery so please don’t judge me for looking so terrible, and my beautiful magician of a surgeon on the right 🌸. Lots of love and fantastic health to all 🧿🪷♥️, M XxxWelcome New Members - 5th October 2023
Welcome to our new members joining the Online Network recently: @MadeleineD @Robin_D @Gloria62 @Tess7 @Jnet @Moomus @Bronwyn_S @An13 @Ineke @TJC @pompeygirl75 @CMJ @Ead @lookingupwardsalways @LKeogh @leita @Mhizyelh @Brabo @HelenlovesSnoopy @Nadia @michelle79 @lekirk @sbtacey @Angpabo @Isabella16 @Swanie @smerdot @sagregor2 @SamL890 @Beccy @mel_bell @Skye_Lea @kj1974 @QuiltyGirl63 @Clancy @Lou23 @galley @Amyfan @lucygoose @christine_m @Dashi @mjacks03 @Raa @philcarly @AngeB2471 @anniesax @RiRi @annmareeh @CSS @quinny @mdfleet @Ronda @Paulsy @Cindi @RoseO @Missey @becp @Kwokker @FVI @Flossie57 @Tanval10 @TAG @Bevchild @desstep @Brookeside @Pamelac @aipac1 @caitjenbenmum @Charliwillow @MalleeMiss251 @Kebel @Pot @paghona @swerks @JaneMarie @Jes @Marly100 @Sunflower2023 @AmyUppy @maim_nigel @Jemma @Sandramd333 @K_Boulton @BMM @kherri02 @fgeange @cece @r_j151 @Kaypl @BC1958 @jess15 @clarereo @Sharon_Maxsted @Brianna @DebPearson @smillsbcna @Witch @Jenmus @Jewelz @Sarah_WA @Forkcancer @Margie5712 You have found your way to Breast Cancer Network Australia's (BCNA's) Online Network. This is a forum where you are not alone and can engage with generous members who provide meaningful support to each other. You can share as much or as little as you feel comfortable with other members. Please explore our various Groups for members who are looking for greater peer-to-peer support. The following links may also be helpful in getting you started: If you would like to introduce yourself please read How do I post a new Discussion? How do I send a private message? Navigating the online community Community Guidelines My Journey Online Tool Newly diagnosed? Listen to BCNA's Upfront About Breast Cancer Just Diagnosed - What's Next? and What I Wish I Knew podcasts Metastatic breast cancer diagnosis? Webcast: Just diagnosed with metastatic breast cancer, what’s next? When is your birthday? Head to this discussion thread if you would like to share your birthday (no need to include the year unless you want to). We love an online celebration and on the day you will receive a virtual birthday cake that we can all share! Our long-time members (newbies too!) are a wealth of information regarding the useful discussion topics and information available through BCNA's Online Network, therefore please do not hesitate to post your questions. You have the option to add details about yourself to your 'Profile' and if you would like more targeted responses, you may like to add where you live (e.g. Sydney; Melbourne; Regional Victoria). If you need help navigating the Online Network please message myself @Mez_BCNA or one of our other moderators: @Denise_BCNA , @Risha_BCNA , @Pat_BCNA, @Kate_BCNA , @Daina-BCNA Please note: the Online Network is not moderated by staff/volunteers on the weekends, however if you need something actioned, the quickest way to resolve your query is to contact the Helpline Team via email helpline@bcna.org.au or phone 1800 500 258 Monday to Friday 9:00am-5:00pm AESTNew Group - Triple Negative Breast Cancer (TNBC)
Hello members, If you have been diagnosed with triple negative breast cancer (TNBC) or supporting someone with this breast cancer type, you may have asked whether we have a private group available for people. Currently we do not have a dedicated group, however there appears to be growing demand for this and we want to create the conversation: Please provide feedback as to whether you feel you or someone diagnosed with TNBC would benefit from having access to an Online Network private group (Please leave your comment in this discussion thread) What is Triple Negative Breast Cancer? Triple negative breast cancer is the name given to breast cancer that is: oestrogen receptor negative (ER-) progesterone receptor negative (PR-) and HER2 negative (HER2-). This means that the cancer does not use oestrogen, progesterone or HER2 to grow. So this means that drugs used to treat these types of breast cancer are not effective for triple negative breast cancer. Around 15% of early breast cancers are triple negative. The main treatment for triple negative breast cancer is chemotherapy. It is important to know that chemotherapy can be very effective in treating triple negative breast cancer. While anyone can get triple negative breast cancer, it is more common in people who: have an inherited BRCA gene mutation (particularly BRCA1) are under the age of 40 have not reached menopause. Unfortunately triple negative breast cancers tend to be more aggressive than other types of breast cancer. There are several sub-types of triple negative breast cancer, the most common being, a cell type called basal-like. Basal-like means that the cells resemble the basal cells that line the breast ducts. Basal-like cancers tend to be more aggressive, higher grade cancers. Read more via the My Journey article Triple negative breast cancerPodcast Survey Upfront About Breast Cancer What You Don’t Know Until You Do (Dr Charlotte Tottman)
Hi everyone, We hope you all have been enjoying our 10-part podcast series, Upfront About Breast Cancer - What You Don’t Know Until You Do, with Dr Charlotte Tottman! BCNA values your feedback, and we want to ensure we continue to develop podcasts that are relevant to you, our members, and your breast cancer diagnosis. To be able to do this, we have created a survey which explores how the podcast series has currently helped you, and what you’d like to see more of. Please note, the survey is completely anonymous. https://limesurvey.mq.edu.au/index.php/157549?lang=en
Sharing is caring. Thanks ladies
Hi ladies. Thank you for sharing your experiences, ups and downs. I get online and just read a few posts every now and then and it really is encouraging and gives me a good laugh at times. My surgery is in 11 days now...thank goodness, the waiting is the hardest. I'm having a bilateral mastectomy and I'm actually fine with it, especially after joining this group and reading your experiences. You are all wonderful.
