Waiting, waiting, waiting….
Hi all, diagnosed 1st September, multifocal invasive lobular carcinoma. Surgeons appt scheduled for 17 September. Surgeon has referred me for an mri with contrast. The surgeon completed my biopsies (3) in breast screen clinic, so I’ve met her. My biggest question now is how long do you wait for the mri apointment? They acknowledge receipt of ‘urgent referral’ on 2nd of September and now it’s the 10th, they’re telling me they are waiting on ‘protocols’, my breast care nurse is wonderful and is following it up along with me, how long did you all wait? I thought I was coping not too bad, but today it all just seems really cruel……?Who to ask about pathology details?
Hi all, just new here…yay🎉?! 🤦🏻♀️ I see everyone seems to know what hormone, stage and other details of their cancer. I know the size of mine, that it is invasive lobular. Just wondering, as I’d like to find out further details and I guess just assumed someone would “tell me” when I needed to know. Would my surgeon or GP be the person to ask for those details? I’ve had a lumpectomy, several lymph nodes removed and need to have further margins or areas of margin removed. I’d like to know obviously if the cancer is potentially fast growing, stage and hormones. thanks so much.
ILC Awareness Day in Brisbane, Oct 15th
Global Lobular Breast Cancer Awareness Day in Oct All around the world in October, is the 2nd annual Global Lobular Breast Cancer Awareness Day- with events planned around the globe including in 9 US states plus Australia, Brazil, Ireland, the UK, and the Netherlands …. with more being added!! So if you know anyone in these countries with Lobular BreastCancer, get them to check out the various events. Click the link below - for info re events around the world. https://lobularbreastcancer.org/events/ to see what’s happening in 'your' area and check back as more details are confirmed! Events include presentations for clinicians and researchers, forums for patients and their families and awareness raising by LBCA advocates distributing educational materials on ILC. The Australian event will be in Brisbane on Oct 15th https://lobularbreastcancer.org/event/lobular-breast-cancer-awareness-day-in-australia/ Registration should be available soon .....BreastScreen NSW now to advise of Breast density
Nine News, this evening, advised that BreastScreen NSW (BSNSW) will be advising clients of their Breast Density from now on and the risk is poses - and this should hopefully result in earlier detection of breast cancer in women who have Dense Breast Tissue. Only Tasmania, Qld and Northern Territory now, do NOT advise of Breast Density in Australia. BCNA's Vicki Durston was also interviewed. (It should be available to view on Nine News shortly.) Dense Breast Tissue is often associated with younger women - but I was in my late 60s, when diagnosed - hardly 'young'! 😉 Dense Breast Tissue shows as 'white' on a Mammogram - as does many BC Tumours. WHITE ON WHITE = INVISIBLE! My own BC (Invasive Lobular Cancer) - and many more members - was missed by the BreastScreen Bus in my NSW home town, just months before my GP detected it when she checked (even tho I'd told her my Screening was clear!) ..... I was called back for 2 more screenings (told there was a problem with the initial screening) before a biopsy was suggested - which showed my Tumours. It is particularly important for those with Invasive Lobular Breast Cancer - as it doesn't show as a 'tumour' as such ..... is it more 'strand like' and is even MORE difficult to identify in a mammogram. This confirms that BC tumours do NOT necessarily show on the mammogram - especially if Rural/Regional/Remote women are relying on BreastScreen Buses ... which do NOT have the latest 3D machines/tomosynthesis on board the buses. 🙁. If YOU live in rural/regional/remote areas .... make sure you advise your daughters/sisters/any female to get checked at a PROPER radiography facility & do NOT just rely on the BreastScreen Buses! From age 40 (not age 50 as BSNSW continues to advertise!) There is NO upper limit either .... so if you are older than 74 - make sure you ring & book, every 2 years! Women with Dense Breast Tissue should be advised to have an Ultrasound and possibly an MRI to identify if there is an issue - with a biopsy to confirm the presence of BC.
