Hi, I was diagnosed with high grade DCIS in Aug 2024 after a total duct removal. I was in total shock. I then had a lumpectomy and radiotherapy. Unfortunately, last year I then developed Pagets Disease and had a mastectomy with immediate TRAM reconstruction in Jan 2026. They also found I had DCIS again.
The reconstruction went ok but it has taken its toll both mentally and physically. I think it’s a very personal thing to decide if you want a reconstruction.
I would recommend to look at all your options first. Knowledge is power. Good luck and keep positive and strong. Sending hugs x
Thanks for this lovely and inspiring message. I have had an almost identical journey to you . Did you get any explanation as to why it came back? I too had Piagets, that is how I found out it was back. x
*Hi, they just said it was unfortunate and that I was an unusual case (first time they had seen it this way round) as I got Pagets after my first diagnosis. Usually Pagets presents itself first as a precursor to DCIS. What’s scared me is that the radiotherapy didn’t work and a cell got away. A mastectomy was definitely the best option for me. After much thought and advice I choose to have the reconstruction at the same time. X
@rachel6 that’s what I think happened with me. We are unusual together then. I had DCIS then the Pagets was the red flag to get myself checked again despite a clear Year 3 post cancer mammogram. Still, I guess the Pagets possibly saved my life as I wouldn’t have gone back to the breast unit if I hadn’t noticed the scab.
Do keep in touch. I am 9 days past the single mx and sln biopsy. Almost no pain! Quite a bit of swelling between where my breast, oh my, was, and my shoulder. Keep checking it to be sure it not hard!
