Hello everyone, I am 37 years old. 12/16 I had a lumpectomy x2 of the left breast which was to remove a big area of ADH and an area of architectural distortion. Pathology came back as ADH being DCIS intermediate grade ER/PR+. Unfortunately positive margins,. Underwent another lumpectomy last Tuesday this time with Oncoplastic reconstruction, reduction and lift. Had my follow up appointment yesterday and unfortunately all 3 margins positive for DCIS. Tissue froM the right breast benign. I am bummed, heartbroken. I really thought and so did my surgeon that she would get clear margins. Now my only option is a mastectomy either unilateral or bilateral with reconstruction. She did say radiation might still happens depends on the pathology from Mastecomy and I will still need tamoxifen. She also said my lymph nodes have to be tested so will be removing lymph nodes as well. She will decide how many after they do some radioactive dye injections. I thought DCIS doesn’t spread? She said there could be invasive cancer elsewhere and that can change to me having chemo if thats the case but from The begging she always said Stage 0 no Chemo needed. It is still stage 0, what is the possibility that they find something invasive and that I need chemo? How the heck I was told margin was 1mm and they needed at least 2mm and underwent a big reduction with an aggressive lumpectomy from DDD to a C and still not obtain negative margins. How do I decide if I want a single or double mastectomy? I was not able to sleep at all last night. This truly sucks. I have tO wait 8 weeks to heal in order to have the mastectomy which makes it even worse. The wait is torture
Sorry that you find yourself here. I can understand how much your mind must be whirling right now.
When I was diagnosed with DCIS back in 2020 my surgeon initially thought it was a small area that he could remove with a lumpectomy. However after an MRI it showed more extensive areas of DCIS that didn’t show on the mammogram. This was the only way to remove it all. I had a single side mastectomy and a sentinel node biopsy. This biopsy didn’t show any cancer cells so I didn’t need any further treatment.
From what you have said it doesn’t seem like your surgeon has removed any lymph nodes yet, is that correct? I wonder if you are perhaps not in the UK, as the sentinel node biopsy is pretty standard practice here. The dye shows the surgeon your lymph nodes and they can look at the first few nearest the breast to see if any show cancer cells. Depending on the result your surgeon will decide what, if anything, needs to happen next.
Hi - sorry you are going through this and I do understand how you are feeling with all the unknowns. I was diagnosed with 7cm multifocal DCIS high grade, and because of the size and possibility of not getting the margins, I opted for a single mastectomy and SNB. My nodes were clear however the DCIS was larger than they thought (growing in finger tendril-like shape) and they found a small area of invasive cancer of 1.64 mm. I believe this can happen but only in a minority of cases and more likely with high grade DCIS. Because the IDC was so small I haven’t needed radiation and currently have opted not to take hormone therapy. The Predict tool gives me only 0.4% benefit at 5 years and so weighing up the side effects I’m not taking it at the moment. So, even if they do find anything, it is likely to be really small.
In terms of surgery, I had an implant with contralateral reduction and lift and ended up around a C/D from an E. The implant is much better than I expected. Wishing you all the best
No Lymph nodes checked yet. They will for the mastectomy. My MRI showed the DCIS around 2 cm and first lumpectomy 28mm and the second lumpectomy the doctor removed 5x4.5x2 cm and marging still Positive. Can I share my report with you? Thank you for your help.
Thank you for your response. You have given me hope. I am scared of doing a spine mastectomy. How does your breast look one with implant and one without it? I already had a reconstruction with lift and reduction during my 2nd lumpectomy, went from DDD to a C and like how the boobs look. I think I want to keep my right breast
Hi - my breasts look good to me - I’m far happier than I thought I would be. I’m slim and have very slight rippling on the implant but I really have to look for it. They are the same height and size - if I scrutinise, maybe the implant is a bit higher but it’s only been 6 months since I had the surgery. I have skin feeling and day to day I just don’t think about it or remember that it’s an implant. I had some problems with healing but that is likely down to other health conditions. Apart from that it all went well. In fact, I prefer being this size to how I was before and have less backache. I opted to lose my nipple too ( as the DCIS) was close and am also ok with that decision. I’m having a tattoo in the summer.
My surgeon did offer a double and I had an agonising week trying to decide. However, for some reason when I got to the appointment, they had the forms ready for a single and I really just complied. I’m happy with the decision. To have a double I would have needed counselling due to removal of a healthy breast and the further wait for that was stressing me. I think surgeons mention everything, like chemo and radiotherapy, to prepare the patient - mine did too.
Also re type of implant - I have a prepectoral in ADM mesh.
Thank you for replying. As of now my heart is telling to do unilateral like you did. I was thinking that I can always do the other breast if I change my mind later on but removing them both now would definitely be a lot harder for me physically and emotionally.