HELP - Struggling with the aftermath of an ineffective MX

In early 2014, I had a uni MX after an initial diagnosis of extensive, strongly hormonally positive DCIS of around 6cm. I was recommended to have a skin sparing MX and offered the opportunity of a DIEP reconstruction, which I did. It was very much promoted as a cure by the surgeon. My post-op follow-up meeting was good; I was informed all had gone well and as well as extensive DCIS and some LCIS (some PLCIS) I had just one small micro-invasion. I had no further follow-up with the breast surgeon and met with the oncology team to discuss tamoxifen. However due to a history of fibroids and endo and the already good prognosis I decided not to take tamoxifen at that time. The hospital very much supported that decision.

Fast forward 6 months from my MX and just as I finished my reconstruction pathway; I found a small nodule then in the following month, more of these in my reconstruction. I had two further "lumpectomies" on my reconstructed breast with a more specialist unit and it appears I had around 4cm of remaining, likely residual, DCIS and again some PLCIS just under the skin. I'm very thankful (lucky) that again, I only had one small invasion of lobular BC.

Of course, after all this I am far better informed about the risks of some residual breast tissue remaining but I now feel terrified about what I am actually left with in terms of active breast tissue. The histopathology reports after my first 'lumpectomy' on my reconstruction state that there were breast ducts and lobules visible in the excised tissue; I thought any tissue remaining would be just scrapings not my entire breast structure! The team that completed the mastectomy will not comment except to say that the plane in my breast was difficult to follow and that I had some superficial breast tissue (none of this was shared with me post-operatively before my discovery of further disease but only after - which makes me so cross). It has also emerged, in trying to unravel, what went wrong that at the time of my surgery the original hospital did not check any anterior margins after a MX.

I have had to make decisions about whether or not to take radiotherapy and the short and long term risks of it without really knowing how much residual tissue is left. Of course usually, radiotherapy is reserved for node-positive/and more advanced disease and I feel worried that the fact my new team have suggested it means I have alot of residual potentially active breast tissue. Whilst, after alot of thought, I passed on radiotherapy I am having six-monthly imaging with my new team and annual mammograms

I have been told by my team that it is impossible to tell from either an MRI or a mammo exactly how much tissue remains after a DIEP. Has anyone else encountered this? I thought that MRI was an incredibly sensitive tool and would easily spot the difference between residual breast and the new DIEP 'tummy' tissue.

To cut a long, emotional, so disappointed story short I suppose I am desperately trying to find ways to feel more comfortable with what is left of my reconstructed breast; that is on top of making peace with the fact that I had such a long operation and as you know not-easy recovery to be in this situation which even after a year still keeps me awake some night.

Any helpful thoughts/experiences, hugely appreciated.

Thanks everyone,

PS I am 44 year old mum of 4... pre-menopausal. I must complete my bio