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/Inherited 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 Cancer
Newly diagnosed - Triple Negative - Chemo underway - Family history
Hi everyone, Well this is the group you really don't want to join, but it appears to be a great resource and source of support, so here goes. I was diagnosed with a triple negative tumour in my left breast on 9th May (grade 3), following a biopsy. I count myself lucky in that I have been part of a High Risk Breast Cancer Clinic at RNS Hospital since 2018, when I found I had the BRCA2 gene mutation. I have a strong family history of breast cancer, with my father having breast cancer at 64 and ultimately passing away at 68 from secondary cancers (way too early - he thought he could massage away the lump). His mother had breast cancer as well and my mother had ductal breast cancer in her 70's. So the annual mammograms, MRIs and ultrasounds since 2018 may have been a nuisance, but they picked up this cancer. I knew something was up when they did the mammogram and kept on calling me back into change again for another scan and then bringing forward the ultrasound appointment, where they did the biopsy. I am going to remember the call I received from the breast specialist's office saying that I needed to come and see the specialist "today" - no delay. I burst into tears and knew straightaway. I'm ahead of my parents in having been diagnosed at 59 - thinking of postponing my big family celebration weekend away in late July until after all this! Quickly into an oncologist and the treatment plan set up within a week. Because of the triple negative category, I'm starting with 6 months of chemo - first 3 months weekly sessions of Pembrolizumab ('the' new immunotherapy drug my oncologist says has only been approved in the last few months), Paclitaxel and Carboplatin - then 3 months of 3 weekly cycles of Pembro, Doxorubicin and Cyclophosphamide. Following that, they hope the tumour will have shrunk and they will then do surgery to remove the remainder - with the decision then on a lumpectomy or mastectomy. Radiation is a possibility after that. My twin sister (same genes of course) had a double mastectomy as soon as she found out we had the BRCA2 gene in 2018 and her initial reaction was to 'get them off' - but I'm following the treatment plan suggested - and I think a bit grateful I don't need to make that decision yet. I am down 2 weeks of chemo. The side effects I've experienced so far are the usual fatigue (have been trying to work in mornings, but I'm quickly realising that's even hard), inability to sleep the first few nights (the steroids I understand), yukky mouth sensation, slight nausea in morning with cooking smells, some slight rash spots on face - and the worst, the bloating/constipation (I won't share the details but I'm quickly realising I need to change up diet and liquids). I don't have any great questions just yet, but look forward to interacting with you all in the future and thank you in anticipation. Sorry for the essay. Kathy
Confused radiation or mastectomy
Was diagnosed with early BC in June last year just shy of 42nd birthday. ER and PR + HER2- . I also carry BRCA2 mutation. My oncotype test came back with high risk. Lumpactomy done. Chemo done. Started hormone therapy - letrozole and zoladex monthly. Am now at crossroads of either doing radiation or mastectomy possibly bilateral to reduce risk. I don't know which option to take. Any experience or guidance would be most appreciated <3
GENE TESTING
Just a thought. If, like myself, you are diagnosed with bilateral breast cancer (Stage 2), wouldn't it make sense to have a BRCA1 or BRCA2 gene test done prior to any surgery? My radiation oncologist - seen a few weeks after surgery ordered the test prior to radiation treatment and now the results are holding that up. The frustrating part is... if I do have the gene, then radiation therapy is useless and I may need to consider a mastectomy! Would it not be much more prudent to have the testing done first in order to avoid "unnecessary" surgery and all that goes with it? The whole process has all felt quite rushed (although the team has been great throughout) and now this is adding to it all - potentially unnecessarily.Do you have the BRCA1 Gene Mutation? Are you Interested in joining the BRCA-P trial?
This popped onto my FB feed .... thought it may interest those with the BRCA1 gene Game-Changing Research to Prevent Breast Cancer in Women with a BRCA1 Gene Mutation The BRCA-P clinical trial has the potential to become a game-changer in the way we manage breast cancer risk, by preventing the disease from ever developing in women with the BRCA1 gene mutation. Currently, many women with the BRCA1 gene mutation undertake life changing preventative measures for breast and ovarian cancer, including the surgical removal of their breasts and ovaries. The BRCA-P clinical trial hopes to offer these women a better prevention option. You can Participate in a world-first clinical trial to prevent breast cancer in women with the BRCA1 gene mutation. Are you Interested in joining the BRCA-P trial? Click on the link below: https://www.breastcancertrials.org.au/breastolution/Clinical Trials Update
Hello members, Our BCNA Senior Policy Officer has provided the below information regarding clinical trials that may be of interest to our members. These are also being shared in our Health Professionals Network News and the Metastatic Advisory Group (I shall post in the mets private group re EMBRACE Phase II trial). Nivolumab neoadjuvant/adjuvant clinical trial The CA209-7FL neoadjuvant/adjuvant breast cancer trial continues to be open to recruitment, running in South Australia, New South Wales and Victoria for patients with estrogen receptor-positive, human epidermal growth factor receptor 2-negative early-stage breast cancer. Bristol Myers Squibb will be implementing a digital advertising campaign expected to launch in October/November 2021. This will target both health professionals and patients. More information on the trial can be found here. EMBRACE Phase II Olaparib clinical trial EMBRACE is a Phase II clinical trial of the PARP inhibitor, Olaparib, in HR-deficient metastatic breast and relapsed ovarian cancer in patients without germline mutations in BRCA1 and BRCA2. Patients with metastatic triple negative breast cancer (TNBC) or relapsed platinum-sensitive high grade serous ovarian cancer (HGSOC) after first line/adjuvant therapy who have an eligible tumour molecular analysis result are suitable for the trial. There are 11 sites open in Australia in NSW, QLD, VIC, SA and WA. More information on the trial can be found here or by emailing embrace.study@sydney.edu.au We encourage members to talk with their treatment team in the first instance about any clinical trials.
