Friday Update - 1st August 2025
Hello and welcome to our Friday Update! Whether you’re new to the BCNA Online Network or a long-time member, we’re so glad you’re here. This safe space built on connection, understanding, and shared experience. Last month, we’ve seen powerful conversations, and practical advice shared across the community. From navigating treatment side effects to finding emotional support, your contributions continue to make this network a safe and empowering place for all. If you’re just joining us, we encourage you to explore the forums Get started here introduce yourself, or simply read along. And if you’ve been with us for a while, thank you for continuing to support others. 💬 Trending Online Network Discussions – July 2025 Bone and join pain side effects of chemotherapy Offering practical advice and emotional support for those newly starting chemotherapy treatment. From bad to worse, but getting better. Metastatic breast cancer (MBC) after previously having early-stage cancer. Kindly sharing story with the community, sparking conversation and shared experiences. Implant or Autologous Flap? Exploring reconstruction options post-mastectomy, with members sharing their experiences with implants versus DIEP flap procedures. WHO do I tell? Emotional challenges of disclosing diagnosis to loved ones. Members sharing advice on navigating conversations with family and friends. Letting go of blame - WHY did I get cancer? Inspired by a BCNA podcast, this discussion sparks meaningful dialogue about emotional healing and self-compassion. 🌟 BCNA Highlights – July 2025 Expanding the ‘Seat At The Table’ Program BCNA continued to grow its internationally recognised Consumer Representative Program Seat at the Table program , empowering people with lived experience to influence cancer research, policy, and care. This initiative ensures that real voices shape decisions that affect breast cancer patients nationwide. BCNA Consumer Representative Kym shares what she thinks Do you think it’s important that those with lived experience are involved in research? Global Advocacy for Metastatic Breast Cancer BCNA joined forces with Breast Cancer Now (UK) and Rethink Breast Cancer (Canada) at the Australian High Commission in London to launch a joint advocacy pledge. The united call to action urges governments and health systems worldwide to count and recognise people living with metastatic breast cancer; a critical step toward improving care, visibility, and support. Watch Together for visibility, equity, and support! Exciting News! BCNA is proud to welcome Red Energy as our inaugural Principal Partner. This partnership marks a significant milestone in our mission to support all Australians affected by breast cancer. Together, we’re powering hope, connection, and change. Stay tuned for more on how this collaboration will make a meaningful impact. Male Breast Cancer Awareness In November 2024, Martin noticed signs that something was wrong with his health. Read his story via the link Humbled by the love and support 📅 BCNA Events BCNA Pink Lady Match – Sunday 10 August 2025 Join BCNA and major partner Red Energy at the Melbourne Cricket Ground (MCG) as the Melbourne Demons take on the Western Bulldogs in support of Australians affected by breast cancer. Watch video Pink Lady Match is back, and tickets are on sale now Event Schedule 1:30 PM – BCNA Tribute Field opens in Yarra Park 1:30 PM – BCNA merchandise available outside Gate 1 and between Gates 5–6 2:00 PM – MCG gates open; attendees take seats for entertainment and pre-match ceremony 3:00 PM – Players enter the field 3:20 PM – Match begins Carman’s Fun Run Sydney– Sunday 21 September 2025 🏃♀️ Location: Metcalfe Park, Pyrmont, Sydney Time: 6:00 AM – 1:00 PM AEDT Event Options Half Marathon (21.1K) – Wave A: 7:15 AM | Wave B: 7:20 AM 10K & 5K Runs – Waves start from 9:00 AM Pink Lady 5K Walk – Starts at 10:15 AM Read more and register via the link Carman’s Fun Run 2025 - Sydney That’s a Wrap! Thank you for joining us for another month of connection, support, and shared strength in the BCNA Online Network. If you have any questions, concerns, or feedback, please don’t hesitate to reach out to our moderators via BCNA_Mod or email helpline@bcna.org.au . We’re here to help and always happy to hear from you. Until next time, take care and stay connected! BCNA_Mod Team
Friday Update From The Roller Coaster!
While I sit here at the top of my Roller Coaster, with my ear phones belting out Hot Chocolate's "You Sexy Thing", I thought I would update the week that was.... I have even handed over the Remote Control to the Hubby....He has been watching some monotonous toned show about some equally monotonously boring hypothetical evolution of The Mayan. (Are you asleep yet from reading that?) Imagine me prior to the headphones, being held hostage because my computer is in the lounge room!!!!! L..M.A.O. Poor Man, he has had a seriously rough week and finally let out all his worry and stress after me quietly asking him too - so I gave him the remote control. I know, I am a good wife but he is bloody Amazing!! Monday, I woke up to TWO things: 1. A brand new song in my head. 2. Pathology / Scan Day 1. Seriously, a new damn song! If I didn't know myself so well,.....I might have the inclination to believe, Lois needed some meds or intervention! L.M.A.O. Even, I had to take a moment to elevate the relevance of this latest song - simply because the title has so many connotations! I got woken to The Gorgeous tones of Barry, Robin and Maurice Gibbs singing "STAYING ALIVE". Minus the luscious image of a very gorgeous young John Travolta Strutting down the streets of New York. (Disappointment). So, while the Gibb Men belted out the song, i laid there, thinking about the title, the lyrics. I believe in fighting for my life, my family, my beliefs, my moral code and have always advocated for the underdog through situations in my life - I am going to "Stay Alive" and walk the streets of my life journey, head held high and give it all my determination, strength and courage. Staying Alive, Staying Alive...yeah! 2. The Bone Scan / Pathology meeting. the Bone Scan was easy - get injected, come back a couple of hours later, lay down, pretend you are on a beach for an hour, get up and leave. I was in agony with my arms being placed behind my head but least this radiologist tried helping me ease the pain with pillows. 1 pm: I met with the Surgeon and Breast Care Nurse. Got belted into my seat and prepared for being blasted out into a momentary flash of "wow I can cope with that view, before hurtling off at warp speed into diabolical, death defying angles.....of my roller Coaster. First words I got greeted with: Wow, we did not expect "Brian" to be so H.U.G.E.! or get 4 Positive nodes!" You and Me both! the C.T. full body scan showed I was clear of any metastases to the organs - YOU know the relief that brings! - the bone scan imagery "looked all clear" but within an hour of leaving the appointment, I was being told I was having a P.E.T. Scan done Thursday, because it was "ambiguous." Polite term for: Oh Geez, I seriously can't make my mind up and I am feeling slightly overwhelmed with having to make a decision - right now! As my kids would say: YOU HAD ONE JOB!!! lol. The appointment got even better:- Any thought of "escaping" with a lumpectomy and a zap of radiation went out the door. Instead, I have been upgraded to the Penthouse Suite - Mastectomy of the left breast, complete removal of nodes, chemotherapy and radiation. Discussions about: time frames, surgery, Oncology teams, hospital appointments and mastectomy bras, scars, healing, chemotherapy (that was an eye opener!) and what seemed like a brain overload of info - all within an hour. However, one discussion brought up a slight bit of "Doctor - I could cheerfully smack you over the head".....being left with one size 22DD boob hanging off my chest wall and why the hell I cant just get both removed NOW! yes, yes, I know the cancer is the primary occupant to be evicted but seriously, the absurdity of the "look", "weight born on one side' and yes, I will admit - that one boob being a constant reminder. I left there feeling relieved, frustrated and feeling like I could have sunk at least 8 very stiff, dry Martinis with super ease!!!!!!! Another few days sitting at the top of the roller Coaster, while I wait for the results to the P.E.T. scan and surgery date for the mastectomy. So, as I sign off.....I leave you with a Song title "Better Together" by Jack Johnson! My Life is always better spent together with my man and family. Big Hugs, Lois (who has also been making Chicken Noodle Soup, while listening to music in the kitchen!)
Dense Breast info - which USA states advise their women .....
This is a map of the USA - where the 'pink' currently show states that already advise 'some' of their women that they have dense breast tissue and may require further assessment by Ultrasound and/or MRI ..... but even the 'pink' states don't tell ALL the women! This article Below indicates that the FDA is proposing to make it mandatory to advise women if they have dense breast tissue! I can only hope that Breast Screen Australia follows suit, when it comes thru in the USA. https://www.health.harvard.edu/womens-health/dealing-with-high-density-breasts Late last year, I actually received a letter from Breast Screen NSW telling me NOT to post on their Facebook page about the need for those with Dense Breast Tissue to be advised & to ask for an ultrasound ..... I was also posting the fact that Mammograms are available free of charge to all women in Australia aged 40 plus (NOT 50 plus as is in most of their advertising on TV and online.) They asked me to stop doing that too. But I am keeping on doing the "Free from 40" bit, anyway!! ;) So once the FDA comes thru and makes it compulsory for their breast screeners to advise women of their breast density - it should be a BIG kick up the arse for our own Breast Screening to do the same.
Were you, or someone you know, diagnosed with cancer during pregnancy?
Hi everyone, Researchers at the Royal Women’s Hospital in Victoria are conducting a study to learn more about the experiences, needs and wellbeing of women diagnosed with cancer during pregnancy. If you were diagnosed with cancer in the last five years while you were pregnant, you may like to participate in this study. The researchers are also interested in talking to partners about their experiences. The researchers will use the information to inform future treatments and make recommendations about providing the most appropriate support for women diagnosed with cancer during pregnancy, their partners and the health professionals who care for these women. Who can participate? You can participate in this study if you: - Have been diagnosed with cancer while pregnant in the last five years, OR - Are the partner of someone diagnosed with cancer while pregnant. Participation is open to women and their partners across Australia. What does the study involve? Participating in the study involves telephone interview with a psychologist. This interview will take place at a time that is convenient for you during normal business hours. The interview may take 45 minutes to an hour. During this interview, you will be asked some questions about yourself, the diagnosis of cancer and your experience of the cancer treatment and maternity services you received. You will also be asked about your emotional health and wellbeing, any treatment or support you received, the information you received from health professionals, and how being diagnosed with cancer while you were pregnant impacted you and your family. The interview will be audio-recorded and later transcribed, but your responses will be confidential. Any information will be de-identified so that you cannot be identified in any publication about the study, except with your permission. How do I take part? To participate in this study or for more information about the project, go to the Study’s webpage: https://www.surveymonkey.com/r/CancerinPregnancy. You can also contact Michelle Sinclair, Research Assistant at the Royal Women’s Hospital by emailing Michelle.Sinclair@thewomens.org.au. Thanks very much for taking the time to consider this opportunity!Research study - Share your views about how cancer treatment and care can be improved
If you've been diagnosed with breast or any other cancer and want to have a say about how cancer care can be improved, you are invited to share your views about how cancer treatment can be improved via an online survey being conducted by All.Can. All.Can is an international initiative which has been set up to identify common issues people affected by cancer experience around the world and identify how cancer care can be improved. This survey is part of a global research project to better understand people's experiences of cancer treatment, what barriers exist which are preventing people from receiving the best cancer treatment and care and what improvements can be made. The survey takes about 10-40 minutes to complete. You can find out more information about the research project and participate in the online survey here: http://www.myonlinesurvey.co.uk/allcan_ENAU/. Thanks very much for taking the time to consider this opportunity!Have your say - Survey on BreastScreen Australia’s Position Statement on Breast Density
Hi all, The Australian Department of Health is considering whether BreastScreen Australia’s Position Statement on Breast Density needs to be changed. The Department has commissioned Allen + Clarke, a consulting company, to undertake a short, online survey to get the views of researchers, clinicians and women who use BreastScreen services. Currently, women who participate in BreastScreen are NOT routinely told about their breast density. The exception is the WA BreastScreen Program, which sends a letter to the woman and her GP if the woman is assessed as having very dense breasts. It can be harder to detect cancers on mammograms of women with very dense breasts as breast density can hide or 'mask' breast cancers. Research has shown that having very dense breasts is also a risk factor for breast cancer. This survey is an important chance to share your views about whether or not BreastScreen Australia should talk to women about breast density. While more scientific research is needed to help health professionals understand how women with very dense breasts can best be screened and/or manage their breast cancer risk, many women argue that they want to be told. The survey will close on 27 June 2018. Your responses are anonymous. Tips on taking the survey Some of the survey questions have been written in a complicated way. We have developed the following tips to help you have your say. Please read BreastScreen Australia’s Position Statement on Breast Density before you take the survey. The survey asks if you have read the Statement and you cannot proceed with the survey if you answer ‘no’. If it's easier, you can read a summary of the Position Statement on the Information Forum on Mammographic Density (INFORMD) website. Please read BCNA’s webpage about breast density before you take the survey. BCNA member Kate has shared her story about breast density, which you can read here. Question 6 of the survey asks what ‘evidence-based’ changes you would like to see to the position statement and asks you to provide ‘citations’ (e.g. journal articles). Please don't be put off by the language in this question. BCNA has provided feedback to Allen + Clarke that women’s views are important and should not need to be ‘evidence-based’. We encourage you to share your views about breast density in the open-text boxes at either question 6 or question 7 and not to be concerned with the way question 6 has been asked. You can skip questions (i.e. leave them blank), but please make sure that you click through to the end of the survey and click ‘submit. How to participate? You can take the survey here: https://www.surveymonkey.com/r/BSApositionstatementonbreastdensity. Please also don’t hesitate to email the BCNA Policy Team on policy@bcna.org.au if you have questions.
BreastScreen Victoria Podcast
HI all, Here is the much awaited BreastScreen Victoria podcast featuring our CEO Kirsten Pilatti and the online network's very own @kmakm who did a fabulous job. The podcast explores what it’s like to be diagnosed, supports available and why events like the Field of Women are so important.
Reclaim Your Curves - Choosing Breast Reconstruction - Sydney Support Lunch Sunday 24 June 2018
Dragonfly Cafe, Eden Gardens, Macquarie Park 12noon to 3pm Come along and join us over lunch – a relaxed and informal setting in which you can ask any questions you may have, share any gems of information you may have gathered, and meet up with other women who understand and share a similar experience to yours. Look forward to meeting you. Annmaree and Rosemary
