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!
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?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.
Surgery is on Monday
Hi all, I'm new here, having been diagnosed 3 weeks ago. And what a rollercoaster it's been! So comforting to have this amazing support network of those who have been through all of this before me. There's been a lot of information to absorb and whilst I'm sure I've been told, I'm not sure when I'll be able to take a shower after my surgery, due to bandages etc. It's not the thought of being unable to shower, just that it may be difficult to wash my hair! I'm considering shaving my head prior to Monday so it's one fewer thing for me to worry about. Plus it will be on my terms! I know that I'm going to lose my hair when I start chemotherapy and radiation anyway because I can't use a cold cap because of COVID. Do you think shaving my head prior to surgery will be too much for me to cope with because of the mastectomy? Thanks (sorry if this has previously been discussed. I'm still learning how to use the network)
DCIS genetic testing and Tamoxifen
Hi everyone, I’m new to the group :) . I’m 48 and I was diagnosed with high grade DCIS in March 2020. I had surgery and I’m just over half way through Radiotherapy. I am trying to decide whether to have private genetic BRCA Testing (Medicare advised they won’t test due to no prior family history of breast or ovarian cancer- mum did pass away at 35 of cervical cancer but apparently isn’t hereditary). I know the results can be inconclusive, but just wondered if anyone has undergone testing and if they could give any insight or advice. My specialist has also discussed the possibility of me taking Tamoxifen preventative cancer treatment. I am a little concerned of the side effects, In particularly clots in the lungs and legs. Just wondered if anyone out there has any advice. Thanks :)Waiting for a date for mastectomy
hello everyone i am a 39 yo mother of 4 recently diagnosed with DCIS in my right breast and have been advised to have a mastectomy as the area is quite large compared to my breast size. The surgeon also said that although the two core biopsy pathology results only showed DCIS with some necrosis, the lump is palpable which is unusual for DCIS and looks like invasive cancer on mammogram, so it is likely they will find some "real" cancer once the pathology from the mastectomy is performed. at the moment i am waiting for the hospital to get back to me with a surgery date. We do have private health insurance but the gap was quite a bit so I am going with the public system. Hope it's not a mistake! If anyone can give me an idea how soon I'll be able to lift and care for my 18 month old post-mastectomy that would be great. She's very active and a real climber so I'm thinking a few weeks at least? thanks:-)
It's back again :(((
I'm a BRCA 2 carrier. Had DCIS the first time (2013) at 22 years old. I had a lumpectomy back then, no radiation no medication, have no idea why. Now 2017 my DCIS is back again in the same breast (the right). At first, I didn't want to have a mastectomy, but my DCIS is in different locations and I saw two surgeons and they highly recommend it, so I have no other choice. I'm not married, and after this don't if I ever will be. I still wanna keep my other healthy breast and I pray to God every day that it stays away from the devil CANCER. Would love to have the joy of breastfeeding my kids, if I end up having any, although I don't know what the future has for me. It's so hard to be forced to let go of a very precious part of your body and feminine. My concern now, I don't know if I shall get implants or not because I don't have much on my body to take from. I'm worried about implants due to the complications that so many women had in term of illness and so on. I would really appreciate if anyone of you ladies with implants or had single mastectomy and implants share their experience both negative and positive. Thank you in advance.
Dcis
hi everyone, hope someone can help! I've been diagnosed after mammogram with high grade non invasive DCIS, had lumpectomy, clear margins and now told I need six weeks of radiation which I do not want to have. I want a double mastectomy so that I can live a worry free life with only about a 1% chance of reoccurrence as opposed to the 15-20% with radiation. Has anyone else done this? I feel like I'm being a bit dramatic but as a natural worrier, just don't think I would cope! Thank you so much