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?
Preparing for DMX and DIEP Flap reconstruction
Hello and first of all I’m sorry that any of us are on this forum and going through the Sh-t Show…. I have surgery end of Jan 2026. I’m going to hire a recliner chair, I’ll purchase button up pjs and shirts. What else can I do? Does anyone have handy tips? High protein recipes that help with recovery? If you have a website of recipes that you can recommend that would be much appreciated. Is there any exercise I should be doing? With a month to go I’d like to do anything I can. Thank you all and with my kindest regards.
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?
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!
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.
Post radiation lump
Hi all, I had DCIS which was extracted last November (wide local excision) and completed my radiation therapy in mid-Jan '24 which I did really well with. Was completely elated when the treatment was finished only to find a month later that I have some soreness in my affected breast with a hard lump now apparent and confirmed by my GP today. She has referred me for an ultrasound etc but wanted to canvas the group if anyone experienced anything like this or knows of similar side effects. Calcification perhaps?Radiation Therapy public vs private
Hi everyone, I have recently been diagnosed with DCIS High Grade and about to undergo a second surgery at a public hospital to extract more tissue via a re-excision. My question is how to go about deciding who to go with for Radiation Therapy which has already been recommended to me by my surgeon. I have heard about this decision tool called DCISionRT that Genesis Care provide which basically determines whether radiotherapy will be of benefit to me. I wanted to see if anyone out there has any experience with this company, the good the bad or the ugly or otherwise any general recommendations of where to go for radiation treatment in Melbourne. I am not so concerned with cost at this stage more general experience.
