DCIS / double mastectomy with immediate recon

Hi - I am new to this forum - been diagnosed with breast cancer in right Breast low grade 15mm tumour herceptin negative hormone receptive also DCIS in right breast 3cm long but papillary in nature do maybe hard to have assessed full extent on X Ray . I am struggling to make a decision between lumpectomy on right & wide local excision on left with follow up licap or just have a double mastectomy with silicone reconstruction at the same time to reduce the risk in both moving forward . I have never had surgery & wanted some advice from those having had double mastectomy on recovery any regrets etc . My surgeons are keen to do preservation surgery but I am scared of the cancer returning . Any help & experiences would be gratefully received thanks X

Hi Lindy. Welcome to the forum and hope you find lots of support here with everything you’re going through. My situation is a little different to yours but may be helpful - I found it useful to get a number of perspectives to then make decisions around my treatment. I had high grade DCIS in right side, large area so really a mx was the only option given. At the same time there were concerns about the left side and I had a surgical biopsy but for a while I did consider a double mx (risk reducing on left side - there are underlying genetic factors). The main thing I would say from a practical point of view is that I was glad I didn’t have both done at once as my right arm was pretty much out of action for a while (lifting, reaching etc) so it was good to be able to do things, albeit clumsily, with my left hand. I am still considering a mx on that side but once I’m fully healed and well. I know you then have to balance up with two ops, two anaesthetics etc but that was my feeling about it.

Hope that’s helpful, I’m sure other people will have different experiences for you too. Please do ask if you want to know any more

Hi Liz - thanks for this post - I am keen to gather as much info as possible in order to make an informed decision . I am scared of the scale of the operation so it is good to hear your practical view on one mx at a time . I am moving towards having an mx on the DCIS side as I feel there are many unknowns & it is so hard to spot or feel should the remaining tissue after a WLE break out of the ducts & become invasive in the future . I am concerned with having a mx on my right side with immediate reconstruction as they suggest radiotherapy if it has spread to my lymph nodes which would damage the implant . So I may very well have the lumpectomy , radiotherapy & hope to have the mx in the future if the skin allows .
So pleased people take the time to share experiences as this is such a terrifying time making life changing choices !
Linda xx

Hi Liz- I forgot to ask you did you have any sort of radiation treatment after your silicone reconstruction ? I am having my lymph nodes checked at the same time as my surgery & although my tumour is low grade they will only make a decision on the need for radiation after the biopsy results of the tumour & lymph nodes a week or so later . I hear that radiation treatment can cause disruption to the implants as it shrinks the skin .
Linda xx

HI. I also had sentinal LN biopsy but the staff seemed fairly confident all would be ok as were happy to go ahead with immediate recon (their suggestion, not mine, don’t think I really understood all the implications at first). I had large area of high grade DCIS and thankfully lymph nodes were clear, no spread out of the ducts, but there was a bit of a tricky time when the histology first came back - the DCIS was bigger than first thought and they hadn’t got a clear 1mm margin between that and the skin over the breast - I was given three options - remove some skin (and the implant), radiotherapy (with potential damage to the implant) or tamoixfen and monitoring. But after a second opinion and more discussion the team then decided none of those options were needed so all fine with the implant. It is a bit of a risk I guess but I’m coming to realise there are no cast iron guarantees with cancer - even with a mastectomy there is a chance of recurrance, albeit much reduced from having the full breast there.

Hope that helps, let me know how you get on xx


Thankyou Liz - I will do . I go to see my consultant on Wednesday this week & my operation date is currently on 22nd September . My guy tells me to go with the double mastectomy to reduce the risk so I will just have to be brave . I need to speak to them about the radiotherapy though .
Thanks again
Linda xx

btw I didn’t find the mastectomy op itself too difficult - only needed paracetamol afterwards and really not in much pain. Just a bit awkward managing with drains etc and remembering not to lift or do anything heavy on that side - if you have someone around to help for the first week or two then you should manage I would think. Definitely get some drain bags sorted (assuming your surgeon will be using drains) - my friend made me them and they were so useful from first trip to the loo after op to going out to local shops etc until drains removed at 7 day follow up appt. xx

Thanks Liz- good to hear your positive approach to the surgery I am dreading it but want to move forward & reduce all risks so it is a must for me I think - I just get scared when they talk of the complications with the operation & the risks .
Regarding the bags what sort of size do these need to be please ? Did you out the bag just over your shoulder ? They a good idea rather than have them trailing everywhere .
Linda xxx

Hi Lindy, I think most people are nervous about ops (I’ve had three so far this year and was most nervous for the last, and least, one!) but they really do look after you through every step of the process. If you look up drain dollies you’ll get an idea of the bags - the ones my friend made were like a simple fabric shopping bag with straps long enough to go over your shoulder and opening at about waist height. That way you can tuck drains and tubes into them quite unobtrusively if you want to go out and about as you’re feeling better - I did wonder if I would be suspected of shop lifting when I went in my local Co-op but it made me smile thinking of the reaction if they asked to look inside my bag!! I had two drains - tubes and plastic bag bits at the bottom - and a gadget attached to a pressure dressing to reduce swelling so the bag part needed to be a reasonable size xx

Aww thanks Liz - I will look in the Internet to see if I can find some bags . I am really nervous but I want to do all I can to reduce my risks moving forward so I am really considering the double mastectomy to reduce operations in the future hopefully !!
Thanks for your support keep in touch
Linda xxxx

How long was your arm out of action? I’m a hairdresser and need to decide on a mastectomy with reconstruction for my low grade DCIS?

Hi Coralie - apologies I have only just seen this post . I was diagnosed with bi lateral cancer grade one in one breast & dcis in the other . I was initially shocked & wanted to have a double mastectomy but was carefully guided by my consultant that due to low grade it was probably better to try & save my breasts . I followed her advice & have had two wide local excisions & they got clear margins each side . I am now about to have radiotherapy . So I can’t help with the mastectomy question but wanted to let you know my outcome anyway in case it is something you may want to consider ? Xxx

Hiya thankyou for replying. I have my MRI results tomorrow and then have to make a decision. Scared

Hiya I am thinking about this too. Bit emotional. Oil don’t want Chemo. I have an autistic son so want the easiest option after operation

Hi Coralie, good luck with results. The anxiety felt on results day is horrendous I know! Let us know how you get on. Sending a hug xx