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.
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, 🌷Klio
Recommendations-North Brisbane -Public v Private- Surgeons
Hi Everyone, I do hope everyone is travelling as well as they can be. Was hoping to hear of experiences and recommendations about Public v Private -North Brisbane. My GP has advised if I choose to go private then I need to find surgeon and they can send referral. Not sure where to start…have rang some surgeons, am feeling like I am looking for a needle in a haystack. Has anyone had experiences with going private and having significant out of pocket expenses? Or going Public and what wait times/facilities are like, that they are comfortable in sharing. Preliminary advice is that it is likely treatment will be Chemotherapy then surgery, nothing confirmed until appointment with surgeon.
Early HER2+
I understand what Early is and I am grateful that I found something at the same time as my breastscreen mammogram and it is not in lymph glands, PET was also clear but they need a new name for Early. My treatment is starting 9/10 and will be Chemo (abraxane) & hercepton then surgery and radiation. I thought I had choice after doing a lot of research on trusted websites, listening to great podcasts and asking questions of my MDT but although they say I do they highly recommend the above plan. I am resolved to losing my hair and looking forward to the freedom no hair should bring me, I am self employed so can regulate my hours, I am active and look forward to keeping that going, as I know how good it makes me feel and again research shows, it helps us through chemo and everything else. What I struggle with is seeing others reactions to the news and seeing my husband frustrated by the time it takes to have tests and get things started. I would delay treatment even longer if I could but know that is not a good decision as the HER2+ is a grade 3. With a name like Early people seem to think 🤔 I will have an easy run, and I certainly hope I do but have read enough to know that I may not. People also say oh that’s good it’s not urgent then and not that bad. For someone who limits toxins as much as one can this is testing my self control to the limits and then having people say and think 🤔 it is going to be an easy road does not sit well with me. I am babbling and that is certainly something that has happened since diagnosis. I spent 24 hours in denial and 24 hours in why and have decided to tell only positive supportive people going forward and focus on things I can control and leave the rest to my team. thankyou for letting me rant and thankyou for all your encouraging posts and links which I have loved. Let’s kick this tumours out of here x
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.Reduction 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. LizBurnt 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?
How did I get here?
Hi everyone, what do I say…I am in shock! I felt it was time I reached out to the community as I’ve been reading all your posts the past few weeks and now I really need support and reassurance. I am 56 and have a wonderful husband and three beautiful 20 something children. I had a routine mammogram in April (12 monthly due to Mum and sister both having BC in the past - both early and doing fine now) and diagnosed on 13 May with invasive carcinoma with micropapillary features, 17mm in size, ER/PR+ve HER2 2+equivaocal from biopsy and ultrasound/3D mammogram. A further weeks wait for HER2 ISH testing which was negative before surgery options were discussed. As I have size G breasts and the lump was apparently so small I opted for WLE with oncoplastic breast reduction as my Mum and sister had both had good outcomes with lumpectomy so I was confident with the reduction they would get good margins. Surgery was performed on 30/5 and I’ve recovered well. Here js the kicker…I went back for the surgery and sentinel lymph node biopsy results and first the surgeon tells me the tumour was 64mm not 17mm! Then he tells me there were mega metastases in the lymph node which was removed. On the pathology report it say ‘the lymph node is almost completely replaced by metastatic carcinoma with similar histological features’. The sentinel node was 28mm. Does this mean I have metastatic cancer? I am reeling…how did they get it so wrong??? And what now? The surgeon has said the next step is an auxiliary dissection which he has booked me in on 30/6 to do…20 days away! He said he needs to wait for things to settle properly after the last surgery with reduction. Meanwhile this cancer is travelling all through me… I am booked in for a PET with CT scan on Thursday which I guess they are looking for more metastases. Should I also be asking for a bone scan? I have not been referred to an oncologist yet, apparently that is after the next surgery but I really don’t understand why they wouldn’t be thinking to get me started on that now rather than waiting even longer. I just can’t comprehend the results I got yesterday. I have so many questions and I just feel like the surgeon is following a routine but I don’t understand why. After a sleepless night of anxiety through the roof I would love some words of advice from this amazing community. Thank you x
Newbie…long story
Hi everyone, Newbie here. Never dreamt I would be joining this club, but who does ?! This forum and website have been so helpful to me over the past month. My journey started last June when I decided to speak with my GP about a tender spot right on the inside edge of my left breast. She reassured me that tenderness isn’t typically a symptom of breast cancer, but we would check it out. Got an ultrasound and mammogram. US identified a small mass, mammo some calcifications. Got an us biopsy around October, all clear. Then around Christmas I noticed some brown nipple discharge (took a while to accept it was coming from the nipple, thought I had spilt something…. Every few days in the same spot!!!). Back to the GP, another ultrasound. The report said there was “debris” in the duct, couldn’t exclude papilloma, MRI would confirm, surgical consult recommended. So off for the consult, after which I was told the discharge was due to trauma to the breast from the biopsy (they didn’t send me for the MRI). This was purely based on discussion and very brief examination. In hindsight and knowing what I do now, I would have pushed back and demanded the MRI regardless. Relief! But my GP wasn’t convinced. She sent me for an MRI then a consult with a specialist breast surgeon who, after looking at the MRI, immediately sent me for some MRI and stereotactic biopsies…2 in my left and one in the right. That was a bit of a marathon! I was convinced it was all a waste of time and money! I turned up to the surgeon for results unconcerned…obviously rather naive! “You’ve got a lot going on in your breasts!” were her first words. LCIS and papilloma in my right breast, DCIS and invasive Mucinous carcinoma in my left. I was speechless. Shocked. Bewildered. Confused. We briefly discussed next steps, but I couldn’t get out of there fast enough! I called my husband in tears. We went back together to the surgeon the following Monday, after doing a bit of research, lots of reading, and chatting with a wonderful McGrath Breast Care Nurse. After asking more questions, I decided on a left mastectomy and right lumpectomy. Plus sentinel node biopsy on the left. But I was so angry. How could the first surgeon send me away without really being sure??!! I went through all the feelings, disbelief, anger, sadness, grief, a bit more anger, and finally acceptance (mostly anyway!!). I realise I have to let go of the anger, and am taking it on as a learning - it’s important to advocate for our own health and not accept something too easily if it doesn’t seem right. Hubby and I had a two week holiday booked up north the following week, which the surgeon said was fine, so we booked surgery for August 13, ten days after we would get home. The holiday was great, we hadn’t told anyone at that point (except my mum and work). We were able to not think about it and had some really special time together. It was good to have the space and time to process what was happening. so now I’m one week post surgery, contemplating the future, keen to get back to everything I used to do. I had been training for a half marathon in September, which of course now won’t be happening. We are hiking the Overland Track in February, so that’s what I’m aiming for. I’m so very lucky to have an amazing, competent, supportive partner. He has taken the same time off work as me to support my recovery. He even washed my hair for me yesterday :-) Recovery is going pretty well, although I’m often still uncomfortable in bed. Getting the drain tube out a couple of days ago was wonderful! We go back to the surgeon next week (two weeks after surgery) for dressings etc and results. Fingers and toes are all crossed! Thanks for getting this far, there’s something a little cathartic in writing this down. I’ve really appreciated reading others stories, it helps with knowing we are not alone and the feelings are valid. Thank you :-) Belinda xx