Radiotherapy after mastectomy for DCIS
Hi there, I had a mastectomy in September this year for intermediate grade DCIS, 38mm. When the histology came back it showed no margin to the skin, and only a 0.3mm margin to the chest wall. I was referred for a discussion with a radiation oncologist, who said that there is limited research in this area, and that she would be happy to treat me, or happy for me to continue with no further treatment. I'm struggling to decide what to do. I was wondering if anyone else has been in the same situation, and what helped them to make a decision?Ductal Carcinoma In Situ
A diagnosis of DCIS—Ductal Carcinoma In Situ—can be confusing and confronting. While DCIS is not invasive breast cancer and is often described as “pre-cancer” or “early-stage,” it still brings with it emotional, physical, and practical challenges. Many in our community have shared how difficult it is to reconcile being told it’s “not life-threatening,” while also facing surgery, radiotherapy, and long-term follow-up. The uncertainty around whether DCIS will progress to invasive cancer can be overwhelming. We want to acknowledge everyone navigating this path. Your experience is valid, and your feelings are real. Whether you’re newly diagnosed, in treatment, or adjusting to life after DCIS, this space is here for you. 💬 If you haven't already, join our Online Network group: Ductal Carcinona In Situ (DCIS) - feel free to share your story, ask questions, or connect with others who understand. 📚 Learn more about DCIS, treatment options, and support resources on BCNA’s dedicated page: DCIS Information Hub
HRT withdrawal after DCIS diagnosis
Hi there. Just this week had my DCIS diagnosis and am reeling - totally out the blue. All moving very fast so wanted to ask the community about HRT. I have been told to just stop it immediately. Im peri and been on it 18 months or so. Really concerned all my symptoms will just come back. Can anyone give any advice or perspective if they have had to do this and what has happened to them?
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?
Sad and lonely
Hi everyone. I’m new here, recently diagnosed with high grade DCIS. I had a wide excision to remove the DCIS and margins. Results showed small amounts of invasive cancer in the margins, so a week ago I had another surgery to remove that invasive tissue and a few lymph nodes. I’ve been coping with everything pretty well and have a loving supportive family. I also have a huge network of friends. However, today, I’m sad. Like tears won’t stop. I haven’t had anyone visit me this week - I get it, people have lives and are busy, but I feel forgotten and as if people think it’s all over now… I don’t get results from second surgery until 2 June so the waiting is torture. I don’t understand why I am being so unreasonable about the lack of visitors!! Does anyone else feel this way? I also have a colleague going through BC treatment. She had a double mastectomy and is amazing- turns up to work straight after her surgery and seems to be coping so well. I feel like I can’t be honest about my feelings at work as my diagnosis is not that bad. Again, this makes me feel so selfish!Newly diagnosed DCIS
Hi folks - I just got my diagnosis this morning and am going through ALL of the emotions. Seeing my GP on Monday for referral to a surgeon, but this site is huge - any suggestions for where to start? My treatment is likely to be a lumpectomy - hopefully with no radiation treatment but that’s a possibility. Unlikely to be chemo. Details are that it’s an intermediate grade ductal carcinoma in situ with focal comedonecrosis and calcifications (7mm x 4mm x 6mm). ER positive, PR positive. Both auxiliary lymph nodes normal.
Radiation oncologist recommendations, Sunshine Coast, Queensland.
I am about to undergo a wide excision for DCIS and I will later be referred to a radiation oncologist. Wondering if anyone is happy to share their experience with particular radiation oncologists on the Sunshine Coast. I will likely be going down the private patient path if I do require radiation treatment, as I wish to have the DCISionRT test (I have just learned that both Genesis and Icon offer this test).Decision
I have been diagnosed a second time the first was DCIS 3.5yrs ago, had a lumpectomy without radiation or chemo. Cancer has now returned in the milk duct 2mm. I am having surgery soon was given choice of total mastectomy or total nipple and aerola removal. His recommendation was mastectomy, I have chosen the later. Now wondering if I was offered radiation after the first surgery would I be in this situation now. Also not recommended for radiation after this current one. Not sure if I have made the right decision.
Avoiding radiotherapy
Hi, are there any community members here that have avoided radiotherapy and then regretted it later? or vice versa. I had a very small pre cancer, which was non-invasive and I'm in my 40s. I am anxious about radiotherapy (long term effects) and though its the standard treatment (because the precancer was high grade), I am not totally comfortable with it, but perhaps that is normal? Any insights appreciated.
