Extensive DCIS with ITC
hi, I was diagnosed with high grade DCIS following a MRI late last year (showed as ~2.5cm), not picked up on US or mammogram. I had a lumpectomy, which didn't get clear margins at 7.5cm so based on that & the initial pathology (HR negative) I elected for a mastectomy which turned out to be the right choice as they found a further 8cm, so it was extensive. But they also found ITC in one of the sentinel nodes, which I believe is fairly rare with pure DCIS. They haven't found any evidence of invasive cancer elsewhere in the breast tissue. I'm waiting to see what (if any) further treatment the MDT is going to recommend, but it seems like it can go 2 ways (treatment or monitor only) and the guidelines for this vary by country. Wondering if anyone else has had this diagnosis and what treatment option they went with?
Learnt some new. Re HPV
I have been informed that my cervical cancer removed by cone biopsy 37 years ago has come back to life but not in the cervix of all places I never imagined appeared as pre cancerous changes to part of my anus. Through research since finding out is that being immune compromised can trigger the dormant virus to get moving. Didn't even know it could. I suppose if chicken pox can come back as shingles not so surprising. Just not talked about Seeing as my neutrophils rarely go above 1.3 not surprising I suppose. Here I was thinking it was a haemorrhoid. Probable minor surgery in February. Of course the specialist surgeon has to talk to oncologist glad they know each other well.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 x
Herceptin treatment post-chemo
Hi there! I finished chemo for her2+ breast cancer 3 weeks ago and have just had a double mastectomy. I’m supposed to continue with herceptin every three weeks for a year. I’ve heard differing reports about whether this is an infusion or an injection. Does anyone have any experience of how this is given in Australia? Also, who can give this treatment? Is it only given at hospitals, or if it’s an injection can it be given by a GP or oncologist? My treatment up until now has been in France and I’m considering moving back to Australia during this year, but with doses every three weeks it’s a short turnaround for getting into the Australian medical system, so just trying to understand more about how this stage of treatment works. Thanks!
Already have implants
Just wondering if anybody is in the same boat as me? I already have breast implants and I am going to have a bilateral mastectomy. I will have these implants removed and still making a decision about what to do next. The only immediate thing I can have with my mastectomy is more implants, which would be done by the breast surgeon. I’m not sure that’s what I want long-term but it’s the only option if I want something straight away. Anybody in any similar situation? Just finding it stressful making decisions at this time.
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.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.
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