HELP - Struggling with the aftermath of an ineffective MX

Nolton9

Hi,

In early 2014 I had a uni MX after an initial diagnosis of extensive 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 was effectively discharged from the oncology side of my care.

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. I had two further "lumpectomies" on my reconstructed breast 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. The team that completed the mastectomy will not comment except very vague things; but it has emerged that at the time of my surgery they did not check any anterior margins after a MX. The histopathology reports after my first 'lumpectomy' after my reconstruction state that there are breast ducts and lobules visible in the excised tissue; I thought any tissue remaining would be just scrapings not my entire breast structure!

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

muska

Hi Nolton, I am very sorry you ended up in this situation. It is not clear to me whether you consulted with a medical oncologist but in any case, I would seek another - first or second - opinion from an experienced medical oncologist and a review of all pathology reports. You don't mention your ER/PR/HER2 status - was it done? - or staging so It is hard to say whether you follow the standard treatment protocol for your type/stage or not. However, it appears the original DCIS was large and the recently discovered one was large too, maybe you need to be more aggressive in your care - I am talking about cancer prevention.