Hello
Firstly, the help I am receiving on here is fantastic and guiding me so much. I am very grateful.
I was very ill after my first lumpectomy for ER+ IDC. I had severe neck and head pain for a week resulting in a greater occipital block which has 80% resolved it. I was so ill and do not wish to return there. Hospital cant offer an explanation for this…
from my lumpectomy my margins were not clear and after removing 5cm on a 2nd re-excision, most of it has DCIS ( the precancerous cells). No ill effects from this surgery, hurrah!
My surgeon wants to do a third re-excision to try and get all the DCIS. I am wondering if its time to go for a masectomy?
Has anyone been in a similar position please?
Understandibly I want as little surgery as possible. Is it time to cut my losses and get rid, so to speak. Emotionally I feel I can cope with that.
TBH I’d want them both off for symmetry and then consider any reconstruction when this is all over, a long time down the road.
I would be so grateful for any thoughts…
Many thanks.
Lizzie
Hi Lizzie. Like you My margins weren’t clear at first excision and I go for a second on 5th Feb. I was tempted even then to say 'no just do mastectomy ’ but they seemed to be saying that was quite major when there might be nothing nasty there so I went with the second excision. Ive more or less decided that if there’s more surgery after that it is a mastectomy. Trouble is there’s such a wait for results, then they throw results plus some statistics at you and then make a decision!
I can’t help but think that if NICE guidelines are to start chemo within 31 days of surgery, then a series of attempts to clear surgically is slowing things down a lot. It’s a very personal decision and I feel for your dilemma because there’s no right answer as we can only see what would have been best retrospectively. Its hard for me and I’m sure others in the same place to try and distinguish between facts as we understand them and the sheer anxiety and stress of just ’ wanting rid of the cancer cells ’ to reduce the stress. I wish you the very best whatever you decide. Don’t stew on it constantly, get as much information as you can, then take a break before revisiting it ( and not at bedtime!)
Best
Hi @lizziellama
It’s such a difficult time as you say waiting for results disappointment when margins are not clear , I had no choice had to have mastectomy one breast it’s hard recovered from surgery but losing a breast isn’t a easy have got used to wearing prosthesis
I am having other breast reduced shortly so hopefully will look more even but I think myself lucky they removed the cancer and I can fight another day
Just think what’s best for you and listen to your team and ask loads of questions
Wishing you well xx
@lizziellama
hello sorry to hear about your diagnosis and the need for more surgery. My daughter’s mil was in a similar situation as you. She had 2 surgeries that failed to remove all dcis then decided on mastectomy.
I had surgery for breast cancer end of 2022. I wanted to let you know to check about timelines for reconstruction. I was told if i didnt have reconstruction at the same time as the tumour removal I’d go on a waiting list which would not prioritise the reconstruction surgery as cancer related. Youve said you’d be thinking of reconstruction a long time down the road so this might work ok for you. Just wanted to let you know. All the best.
Ah, thank for that info. I’m just not sure it’s what I want. I just want rid of the cancer at this stage and feel ( for me) no boobs is better than a lopsided one. I do tons of swimming, outdoors and in the nude!! In Summer. So it makes sense to me…. 
@lizziellama whatever you decide i wish you well. A few of my friends have had a mastecomy with no reconstruction. This organisation may be of help to you https://flatfriends.org.uk/
Three years ago, I had an lumpectomy after a biopsy which apparently showed no cancer but I had the operation as I had problems with a dripping nipple. The lumpectomy managed to cut through a cancer , so I had a further lumpectomy and node removal . 3 years later I have had a local reoccurrence in same place now but now grade 3 . Three years ago I wanted a mastectomy and was not allowed one . I regret not pressing for one then . Although there is no evidence for it I feel that that the cancer was cut through in the first operation contributed to the local reoccurrence .
You have mentioned about having both breasts off , NHS seem very reluctant to do this …as no proof apart from when you genetic issues that it helps it coming back in the other breast . I had a very good try but got nowhere but will save my pennies for the second operation. However I am swimming , doing Aquafit , line dancing etc and do not wear a prosthesis . Only really need it if I have a clothing which needs a bit of plumping out !
I know everyone is different but found the mastectomy not too different to the lumpectomy apart from the drains which for some reason I had three, but once they were out I felt really well. I was able to walk 9000 steps three days after my operation and I am no spring chicken. There was in my case also a lot more numbness than with a lumpectomy and a bit strange brick like feeling but now three months after the mastectomy I hardly notice it .
Hope you will be happy with any decision which you make .
Hi Lizzie,
I was diagnosed 3 years ago and was initially going to have a lumpectomy. Despite taking their advice my initial thoughts were just get everything removed. I really wanted a mastectomy, never had a minutes doubt. My op was cancelled as they found more areas of DCIS that had been missed so my surgeon agreed to mastectomy then after initially refusing.
I’ve never regretted it for a minute, especially after the post op results came in showing everything was far more extensive than originally thought and LCIS too. If I’d had the lumpectomy it would all probably still be in there!
I’ve kept flat on one side using a prothesis and it’s fine. Some days I do want my other breast removed so I never have to worry again but they are very reluctant to do this as yearly mammograms show things look normal.
I recovered very quickly after my mastectomy and walked my dog later that afternoon. Staying gently active helps healing. It’s always said that the most important aspect in any cancer treatment is the surgery to remove the cancer. Everything else is just a safety net, so it’s critical to get good margins. I didn’t want to take any chances and was relieved that margins were good after my surgery.
Take care and I wish you well on this journey x
Thanks so much for posting details of this website. What a marvellous name!