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.
ER -ve DCIS have had Tamoxifen offered
Hi brains trust. I have just had single mastectomy due to high grade and large DCIS. The results from pathology show that the DCIS was ER/PR-ve and HER2 +ve. I’ve been offered Tamoxifen as an option to reduce risk on other side. Am I right in thinking this would not help if I get the same kind of DCIS or cancer in the other side? I’m not sure how keen I am to take hormone blockers as my understanding is that I now have same risk as the rest of the population. Anybody else been in this situation? Any suggestions on where to research?New DCIS diagnosis in Brisbane
Hi all, I've had two lumpectomies now for DCIS, which was caught in a routine mammogram/ultrasound. I'm waiting for the final pathology results from the last op and will then move on to radiation therapy. I'm wondering what the wait times are like in the public system (probably RBH). My mum is worried I'll be waiting too long but the cost from the private surgeries/pathology/screening/anaesthetics etc. was around $5K before rebates. Does anyone have an idea of how long I'll wait and if that wait will be okay?Double mastectomy for single DCIS?
Hi! New to this so bear with me. I was diagnosed last week with high grade , large DCIS multifocal Pr +40% and Er - left breast 6cm. Being smaller breasted it is likely i will lose the breast and in fact i will be choosing this as i have a sun keratosis lesion on my nipple anyway and also would prefer to avoid any recurrence and radiation if possible. What i am wondering is instead of reconstruction to that breast has anyone taken the healthy breast as well to match and stayed flat? Will surgeons generally agree to this in the public system? I realise its overkill as far as treatment goes but is it any different than a reconstruction? Just think i would prefer to have my breasts the same but at this stage do not want reconstruction or prosthesis.
