BCNA calling out the government - failing to protect Australians from genetic discrimination
Breast Cancer Network Australia (BCNA) is calling out the government for failing to protect Australians from genetic discrimination while showcasing its new genomics framework. Cancer Australia launched the National Framework for Genomics in Cancer Control this morning, which aims to integrate genomics into routine cancer care, improving outcomes through personalised medicine. BCNA welcomes the framework but condemns the Australian Government’s failure to follow through on its commitment to legislate a full ban on genetic discrimination in life insurance, a critical reform to ensure all Australians can access genetic testing without fear of financial repercussions. “The Government cannot claim progress in genomics while failing to uphold the fundamental rights of those affected by breast cancer and other genetic conditions,” BCNA Director of Policy, Advocacy & Support Services Vicki Durston says. “If genomic medicine is the future, then protections against genetic discrimination must be part of that future. “No more excuses. There must be action before an election is called or Australians are at unacceptable risk.” BCNA calls on the Government to immediately prioritise its promise to introduce a full ban on genetic discrimination in life insurance, ensuring all Australians can access genomic testing without fear. Read full media release via link BCNA calls out government for failing to protect Australians from genetic discrimination while showcasing its new genomics framework (Media Release) Take action now! ✔️ Share this post to spread the word ✔️ Contact your local MP using the form link Email your MP about delays in banning genetic discrimination | DELAYS TO BANNING GENETIC DISCRIMINATION IN AUSTRALIA
Cold Cap availability in public centres in Sydney/Newcastle
Hello everyone I was recently diagnosed with T2 (2.5cm), grade 2, HR+, with micrometastases in one sentinel node, which officially put chemo on the radar for the treatment plan. I pushed for the Oncotype DX but the advice from my treatment team was that as I had a couple of red flags (I'm premenopausal, have a slightly high Ki67 score and it had already travelled to the node) the recommendation is to do 4-6 cycles of TC even if the test returns a low recurrence score, so I've cancelled the test and am now fully focused on how to limit the harm from proceeding with chemo. Keeping some of my hair and limiting the time for regrowth is a huge part of this, so it's a big priority for me to go for the cold cap. I don't have private health insurance as I had bowel cancer exactly 5 years ago now, and had been waiting to clear it to get better premiums, plus I was treated so well on the public system that I questioned whether I needed it. But it turns out I can't access the cold cap in the Central Coast where I am based, and most nearby options are private. I would love to hear from Sydney and Newcastle based community members who know of cold cap availability at public hospitals, especially if you were treated there and had a good experience. So far I can see that Campbelltown, Blacktown and Chris O'Brien Lifehouse all offer the PAXMAN system, along with the Mater hospitals which I think treat some patients on public? I go back into surgery to get better margins on Wednesday so I couldn't start before the end of November... but that's also right at the end of the 8 week guideline from my first surgery, so am feeling the time pressure to get a second referral! Thank you so much for any guidance you can share :smile:
Genomic Testing
Hi, I was diagnosed 1 month ago, and had a bilateral mastectomy last week. My tests came back yesterday and although one Lymph node was clear, another had minimal cancel cells present from my left armpit. Apparently i am a N0 category. Although my surgeon is going to get other doctors opinions etc if i should go ahead and have chemo, i thought i would research Genomic testing too. I have my oncology appointment this week. I am stage 2 (not sure if A or B ) , ER+, PR+, Her2-. Is there anyone that has recently done the test, if so is it possible to give me abit more info on it, cost, timeline, name of test etc. Thank you in advance, this has been such an emotional ride so far, but i am grateful to have had it diagnosed early.
ER+ HER- | Optima Study
Hi everyone I've just had a very interesting meeting with my oncologist - first appointment post surgery. Fortunately, I'm not a candidate for chemo (utter relief) so we didn't discuss this in any detail, but as we were talking about whether I should get a genomic test done or not, he mentioned that there was a new study about to take place - the Optima Study. From what I gathered from him, it'll offer a Prosigna (I think) test as part of the trial, which would obviously be funded (perhaps 100% - not sure) by the study. I think it'll be for people who are about to have surgery or who have recently had surgery - not sure though. I don't know anything further than that, and I couldn't find anything on any Australian sites about it, but there is some info on UK sites as it looks like the trial is being done there as well. Hope this helps someone - and saves someone a few dollars! Also hope this is appropriate to post!Genomic testing
Hello My oncologist has suggested genomic testing to see if chemo will be needed or not. The only one I've heard about is Oncotype DX and he's mentioned that one and also EndoPredict and Prosigna. I'm Er+ Pr+ Her2-. Without thinking about the costs of each, is one better than the others? If you've had the test, did you find it useful for making treatment decisions? I'm finalising the surgery this week and need to make a decision on the genomic test. I'd be really interested in your thoughts. Thanks Kim
Oncotype Testing
I was diagnosed with Early Cancer - Oestrogen Positive - 3 February 2022. Since then I have had surgery to remove the lump. I saw my oncologist this week for a treatment plan. Due to my history, Hodgkins lymphoma 1998 and non Hodgkins lymphoma 2008 , sister and other family members with Breast Cancer, and the markers found in my lump she wasn't sure if Chemo would be a beneficial option. She has suggested Oncotype Testing to give a 100% guarantee that Chemo is needed or not. I have no worries with this as I'd rather not have chemo if it is not needed. What go me mad was the cost of this test $5000!!!! There is no Medicare rebate and not covered by my Health Fund, I was fortunate that we were able to juggle a few things around to pay for this - but what about those who can't afford this. When the information provided isn't that clear and it's a matter of a coin toss whether to have or not have chemo what would you do? I know it makes it sound like my oncologist isn't giving me clear advice but she is very and good and has provided me with lots of information, hence taking the option to do this testing. Cancer is hard enough as it is without the added financial strain of such an expensive test. There are so many other subsidised tests and programs why isn't this one. Apparently we are the only Western Nation where the government doesn't provide a rebate. I have wrote to the Minister for Health a strongly worded letter and suggest that everyone do the same.FOXA1 gene shows resistance to AIs .... genomic mutation
In September 3, 2020 a study published by Memorial Sloan Kettering Cancer Center indicates how genomic mutations in FOXA1 can cause cancer drug resistance to AIs. FOXA1 might be one to be added for Genomic testing here in Aus - no point being on AIs if the gene is resistant to it! https://www.mskcc.org/news/mutations-same-gene-create-different-paths-breast-cancer-drug-resistance?fbclid=IwAR0jIFetNV-6ulvLhDYnQNViwN3hoYsSdmgFQxt1MzTxaknVSHGlD_n7O_c Technically your tumour samples should be kept for some years - so they SHOULD be able to be sent for testing/Oncotyping ..... (my husband's first tumours from 2010 had genome sequencing done earlier this year, as well as those from the biopsies taken in Jan - to see if they were the same cancer & whether more modern treatments were available ....)
