Prioritising access to risk reducing surgery
We know that the knowledge of your risk of breast cancer can be empowering but it becomes a feeling of being powerless when forced to spend years on public wait lists for risk reducing surgery. It’s a constant state of fear compounded by lack of transparency regarding timelines and the reality is some will receive a breast cancer diagnosis whilst waiting Today we’re in Canberra with the Australian Access to Breast Reconstruction Collaborative Group (AABRCG) to launch a joint position statement ‘Prioritising access to risk reducing surgery for people with inherited high risks of breast cancer.' We're calling for a national, consistent approach to ensure that individuals with inherited genetic risks have timely and equitable access to risk reducing surgeries. Are you waiting for a prophylactic mastectomy? To learn more about this issue and to read our position statement, visit our webpage https://www.bcna.org.au/our-impact/prioritising-access-to-risk-reducing-surgery/362Views1like3CommentsInherited gene mutations - are you at higher risk of breast cancer?
Approximately 5-10% of breast cancers are hereditary- caused by a gene abnormality that is passed from a parent to their child. If one or more of your close family members have been diagnosed with breast cancer, you may be concerned about your inherited risk of developing breast cancer. If you’re at higher risk, have you looked into your options? Learn more about genetics and the risk of breast cancer at https://www.bcna.org.au/resource-hub/articles/genetics-and-risk-of-breast-cancer/ Have you joined our private group? Head to the link Hereditary Genetic Mutations and Breast Cancer31Views1like0CommentsPink Hope (Australia's Hereditary Cancer Charity) - Events
Robyn (Programs Manager) at Pink Hope wanted to share to several events they have got coming up that are are focused on supporting people with hereditary cancer risk: (Sharing here in addition to the Hereditary Genetic Mutations and Breast Cancer group) Fri June 21st – Community catch-up dinner Brisbane Sat June 22nd – Info & Support Day at Royal Brisbane Women’s hospital Fri July 19th - Community Catch-up dinner Melbourne Sat July 20th - Info & Support Day at Uni of Melbourne Fri Aug 9th – Community Catch-up dinner Sydney Sat Aug 10th – Info & Support Day at Macquarie Uni, Sydney Flyers attached and website info via the link https://www.pinkhope.org.au/join-an-event111Views2likes1CommentOlaparib (Lynparza) for metastatic breast cancer in people with a BRCA gene mutation
Urgent opportunity As some of you may know, BCNA provides a consumer comment to the Pharmaceutical Benefits Advisory Committee (PBAC) in support of drugs being considered for subsidy on the PBS. Equity of access to new treatment options is especially important for those with metastatic breast cancer. Our policy team are currently working on a submission for olaparib (Lynparza) for metastatic breast cancer in people with a BRCA gene mutation. Olaparib is a targeted therapy called a PARP inhibitor. It works by making it hard for cancer cells with a BRCA1 or BRCA2 mutation to survive. If you have accessed olaparib privately or have wanted to access it but were unable to due to it not being subsidised and would like to contribute to the BCNA submission, please contact Julie Rae in our policy team: jrae@bcna.org.au today. We use quotes from real people who have experienced the issue to illustrate the points we make in our submissions. Additionally, if you have a known BRCA 1/2 mutation (regardless of whether you have been recommended olaparib) and would like to contribute, please also contact Julie41Views1like0CommentsHave a nice weekend has a whole new meaning
Thanks ladies for letting me into this most exclusive club and i promise to be grateful for all your shared experiences and honor you all. As the name says im a Aussie living on the other side of the world facing a double mastectomy and diep procedure. Its lonely and scary as the family is back home, so im here to learn and feel like im not on the other side of the world. Am an ovarian cancer veteran at 29 and now am facing the handy work of the Braca 2 gene, at 42 sooo can i i click my heels and say there is no place like home? Surgery on Monday and admittance this sun, any last minute tips??? Am hoping that through this group i can arm myself with the knowledge of how its done and read your stories of inspiration. Thank you again F_F_H531Views0likes43Comments16th Annual BRCA1/2 Information Day
You are invited to attend Gene Alliance Australia's 16th Annual Information Day for those living with BRCA1/2/unknown gene faults, their families and support people. In 2001, Genetic Alliance Australia (GA) was approached by a number of people to set up a support group for people living with an inherited gene fault predisposing them to certain cancers. At the first meeting it was agreed that an annual information day was preferred. Consequently each year, in October, an information seminar has been held. The information day programme has presentations from doctors, genetic counsellors and individuals. Conducted in an informal setting, the day gives people the opportunity to receive up-to-date information and the chance to share stories, to network and to ask questions. Who attends? Those at higher than population risk of the cancers associated with faults in the genes BRCA1/2/unknown gene faults, their family and support people. Date: 9 October 2016 Time: 9.30am - 3.00pm Venue: The Auditorium, L1, Garvan Institute of Medical Research, 384 Victoria Street, Darlinghurst NSW 2010 Cost: $50 per person, includes registration, lunch and refreshments For more Information click here.11Views0likes0CommentsA Journey with My Husband
Hi Everyone, Thought I'd post my speech from Monday's Mini Field here for a couple of you to read as requested. Thanks. _____________________________________ My personal journey begins back in 2003 - when because of a strong family history, my GP suggested that myself, my younger sister and my mum get tested for the BRCA1 gene - (the gene commonly associated with the increased risk of breast & ovarian cancers) - it wasn’t a great shock to me when our results came back, that we were all BRCA1 positive. I had already lost my great-grandmother, great-aunt, grandmother and several cousins to breast cancer. Knowing I was positive wasn’t a big deal to me at the time, it just meant yearly mammograms and being more vigilant, so I just went on with my life. My husband and I had been working hard to build up our small business and raise our 2 daughters, when in 2007, at the age of 37, I was diagnosed with early breast cancer, and because I was BRCA1 + it was highly aggressive and had already spread to my lymph nodes. I was devastated. How could this happen? Immediately, life as I knew it had turned upside down and the world felt like it had completely stopped. Suddenly my work and family commitments had to fit around Dr’s appointments, specialist appointments, scans & tests, surgery, 6 months of chemotherapy, & more surgery! It was blur and surely someone else’s nightmare. Immediately following my diagnosis, my family fell apart, my husband had lost his dad to cancer and was terrified that he was going to lose me as well. But I held it together. It felt like I went in to auto-pilot. I was just doing what had to be done to get through each day. After all I was a wife, mother and business owner, I didn’t have time to have Breast cancer! I had my eldest daughter starting her year 11 exams and my youngest daughter in reception. So I needed to speak to teachers, coaches, principals and their friends’ parents. They were all so amazing - school pick up rosters were organised – play dates & sleep over’s. Then teachers at the school partnered up and devised a dinner roster, so our family had home cooked meals during the weeks following my chemotherapy. We were overwhelmed to say the least. I think I cried every time a meal was delivered. It’s great how a community, even strangers, can rally around a family in such a time of need. Meanwhile my family were doing everything they could to keep our everyday lives on track. I was ADAMANT that I was ok, and that my husband should not take any time off and we should try and keep up our family routine as best we could. I really wanted my girls’ lives to be untouched by this as much as possible. - Of course, what I REALLY meant was - please drop whatever you’re doing at work and be with me every minute of every day holding my hand. - I think this is where Men are From Mars and Women are From Venus. We say the opposite to what we are actually thinking – hoping our partners will see through it. So dutifully, my husband went off to work every morning, thinking this is what I wanted - what I needed from him. He called me several times during the day - where I said “all was ok” - instead of - “please come home honey, I need you”. I had the full support of my husband throughout my diagnosis and treatments – he would come home after 14 hour days at work and do the washing, vacuum the floors, help with homework - but looking back, it wasn’t what I REALLY needed.- What I REALLY needed was him to be there emotionally, to make me feel like I wasn’t being a burden - to understand if I just wanted to cry, I didn’t need a solution - I just needed him to be there for me. During a marriage or life partnership – there are many bumps in the road – this one was a mountain – one that we are still climbing – with good communication, lots of teamwork and patience – we hope, that one day, we’ll be holding hands and sliding happily and together, down the other side! So I’d like to take this opportunity to pay tribute not just to my gorgeous husband David, but to all husbands & partners out there struggling to know what to say or do. We love you and we need you.11Views0likes8Comments