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
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?Not sure
I was diagnosed with invasive ductal BC stage 2 ER+PR a couple of weeks ago lymph nodes do not seem affected for now ( biopsy was negative). My breast are small and MRI showed ~4cm cancer. I was wondering if mastectomy + reconstruction and possibly no radiation therapy was better than lumpectomy + radiation. Not sure what to do🤔
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.
Breast cancer diagnosis- did you have a Mirena in place, like me?
I was diagnosed with breast cancer 3.5 months ago and had a double mastectomy 3months ago. I am 44 years old. I started doing some research as a number of people I know with breast cancer who were young also had a Mirena. There is new research coming out of: -Europe that indicates that there is a 40% higher risk of breast cancer if you had a Mirena, and -Germany that shows that the Mirena can change hormone levels in the breast based on scans I had breast ultrasound scans that show I did not have breast cancer just before my Mirena was inserted 5 years ago, and that it developed post Mirena insertion. I had no genetic factors (based on testing), and no risk factors for breast cancer. It seems highly co-incidental. I also looked up the FDA documentation for Mirena approval and it states that "Spontaneous reports of breast cancer have been received during postmarketing experience with Mirena. Because spontaneous reports and voluntary and from a population of uncertain size, it is not possible to use postmarketing data to estimate the frequency or establish causal relationship to drug exposure..." I am keen to connect with other women who had a Mirena in place and then were diagnosed with breast cancer. If this is you, please respond to this post- I would love to hear your story!
First appointment since diagnosis
Hi Lovely Ladies, I have my first appt on wednesday at Peter Mac and was wondering if anyone else went to Peter mac and what their experience was with the first appointment. Im hoping to come away with some dates of appointments to start my journey or am I being unrealistic and is it just really an information session? Thanks in advanceGenomic 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 xER/PR+ HER2- invasive lobular
I’m a 47 yr old mum of one 6 yr old. I received my ER/PR+ HER2- invasive lobular cancer diagnosis this week. Due to strong family history (mum passed away at 62 in 2012 with triple negative BC- and her mother also passed away at similar age from BC type unknown as it was late 1970s) - my sister and I had started the process of having additional screening etc. My mammogram and Ultrasound in Jan this year was clear - MRI last month showed something- which following a core biopsy has revealed 3mm ER/PR+ HER2- invasive lobular cancer. As I was already under care of private breast surgeon due to wanting extra screening etc- I feel grateful to have already talked to her about surgery options and possible surgery week of 12th January. I went for genetic testing this week and now wait to see results. Am weighing up option of double mastectomy(and reconstruction) - though surgeon has advised its very early and very small so lumpectomy and sentinel node surgery is a very feasible option too. Followed by radiation therapy and tamoxifen. If I chose a mastectomy it may reduce my need for radiation and tamoxifen.
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!
