Oncotype DX and Ribociclib
The Oncotype DX test is highly effective at identifying the 70% of patients who can safely avoid chemotherapy and the 30% for whom chemotherapy is optimal. A sample of a tumour is sent to the US where the testing is done and I was told I needed to pay approx $5000. I have recently been told by my oncologist that I need to pay approx $75000 for my medication called Ribociclib. Some Australian women will be able to access this medication through the PBS however due to not having metastatic breast cancer etc I am not eligible. I can pay the $75000 in installments of $2100 per month via a financial agreement with the pharmaceutical company. How are women affording these treatments?. It doesn't make sense that these treatments are not funded for everyone. The financial pressure this puts my young family through is very difficult. Has anyone found a way around these costs? * please note: the percentages and costs listed above were advised by an oncologist and are approximates.
Too Fat for flap breast reconstruction
Hi all just wanted to make people aware that after having a double mastectomy I was told I am To Fat/ overweight to have flap reconstruction despite having gastric sleeve, optifast mounjaro their expectation was to be ideally 80-85kg which I have never been even when playing sports. I just wanted to make people aware that if you have had a double mastectomy and may need a flap reconstruction and are on the heavier side please be aware of weight expectations. I don't think my body agrees with silicone implants.
Hormone Replacement Therapy?
Hi all — I’ve been reading a recent research- esp. from the US, including the book Estrogen Matters, which questions the idea that women with breast cancer should automatically avoid Hormone Replacement Therapy (HRT), and how it can help with longevity etc. I’m planning to speak with my doctor about it, but I’m curious — has anyone here looked into this or discussed HRT after breast cancer with their team? Would love to hear your experiences or any studies/resources you found helpful.
Radiation Therapy Omission
Hello, I have been informed by a radiation oncologist that I am at a increased risk of developing radiation-induced fibrosis (RIF) from radiation therapy (RT) due to my having a connective tissue disorder. Following research around this I am currently weighing-up the risks and examining my options. I find the decision-making around this challenging and would like to invite members to share their experiences with: Decision-making around RT omission Experiences with RT omission Experiences with RIF e.g. immediate and late-onset effects Please include as much detail as possible. All comments are appreciated. Thank you, 🌷KlioReduction of non affected breast, mastectomy on left breast
Hi, I had a consult with a plastic surgeon yesterday to discuss options post mastectomy on my left breast for ILC, two tumours so unable to preserve the breast. I’m not interested in a reconstruction ( at this stage). He suggested I could have a breast reduction on the right side as I’m an E cup so would make it less lopsided ( bring it down to a C cup) Interested to know if many of you have opted for this? It certainly appeals to me as a ( hopefully) solution. I’m an active 70 year so just want to get on with it! I have to make a decision asap ( no pressure!) as my surgery is on October 3rd. thanks in anticipation. Liz
Burnt out DCIS
Hello! I was diagnosed with high grade DCIS in my left breast in 2024 and opted for a mastectomy on that side. Pathology later showed it had started to become invasive (just barely, but still). My sister passed away from metastatic breast cancer in 2022, and my dad from bowel cancer in 2004, and both had roller-coaster journeys with treatment, so I wanted it out, with what to me felt like the least amount of fuss. I recently had my 1 year check up and they have found 'burnt out' DCIS in my remaining breast. The little information I have found on this says that it is DCIS that has regressed or resolved itself. In my initial chat with the Dr we discussed that given my history, having another mastectomy was the way to go - that we could do further investigation but that there was a high chance it would come back and lumpectomys would kind of be chipping away at one breast - whereas a mastectomy would eliminate risk altogether (I know this isn't 100% but you know what I mean). I've just had a phone call from my surgeon, while we try and find a date for the surgery, who reiterated that we haven't definitely found cancer in the right breast - there are calcifications that weren't there 12 months ago and this 'burnt out' patch, and he wanted to check I was OK with this decision still. I reiterated that I was but now that I'm off the phone am starting to second guess my decision! My gut still says mastectomy - both my dad and my sister died from aggressive cancers in their 40s - and my priority is not giving it a chance to take root in my body. But now I have the niggling feeling that maybe I should watch and wait for a while and see what changes. DCIS obviously isnt guaranteed to progress further, but I can't find enough information about what 'burnt out' actually means longer term. Has anyone had experience with 'burnt out' DCIS and can tell me more about it? Or have any other advice about making a decision?Genomic Testing experiences
Hi all, I’m a 46 year old mother of two older teenage boys and was diagnosed with breast cancer in April 2025. I have since had a lumpectomy and sentinel node clearance and been advised I had Stage 1 Grade 2 invasive ductal carcinoma with lobular features with clear margins and no node involvement. My tumour was 16mm and is ER/PR positive and HER2 negative. I saw my medical oncologist on Friday and we discussed will be radiation and hormone therapy with Tamoxifen for up to 10 years if I tolerate it. My online prediction is that chemo will be of no benefit to me but my oncologist did discuss the genomic testing and that it was my decision as to whether I have it or not but if I did want to go ahead I would need to make a decision quickly as I am already nearly 3 weeks post op. I am looking for advice or peoples experiences as to if they were offered the test and what they did. I know everyone is different and that the cost would be prohibitive for a lot of people. We can afford to do it but I’m unsure as to if it is a good idea or not. thank you in advance for any advice or experience you’d like to share and good luck with all your journeys xSurgeon or oncologist first?
Hi, I had a lumpectomy for early breast cancer four weeks ago and have possible further surgery pending as didn’t get clear margins. With all the time one gets between the steps of the treatment process, husband has just asked why I was directed to a breast surgeon initially and not an oncologist. I feel foolish to have not considered this. I tend to “trust the process” and perhaps don’t question enough. I think I understood, perhaps wrongly, that surgeon consults closely with oncologist prior to surgery in multidisciplinary meetings… Is it standard to only meet oncologists once ready for radiation and endocrine treatments? Wouldn’t an oncologist be the best to advise on appropriate margins pre-surgery? I’m interested to learn about the sequence of your interactions with specialists if anyone is happy to share please.
Moving from private to public for follow up care?
Hi all I was diagnosed with Stage 1 ILC (E+ P+ HER -) in August 2024 after a diagnostic lumpectomy. I completed active treatment in October last year - second lumpectomy and sentinnel node biopsy and radiation. I did all my treatment privately at the time as I was unaware I could have private surgery then public rads/oncology which was a costly mistake. I’m unhappy with my surgeon and will be seeking someone new for ongoing follow ups and am wondering if this is the time to switch to the public system? I’ve been advised out of pocket costs will be about $1500 between required consults and 3D mammogram with contrast and ultrasound if I stay in the private system which feels like a lot when treatment last year pretty much wiped out our savings. I’ll still stay with my private oncologist who I really trust. Keen to hear any experiences or thoughts. Thanks in advance.