Hi SueDerb,
Sorry to hear that you have been through so much. The constant worry must be so debilitating. My situation isn’t the same as yours but three years ago I was due a lumpectomy for a small IDC. The op was cancelled as they re-read all my scans and realised that they had missed more areas of DCIS. The plan changed to a mastectomy and I’ve never regretted it.
I have a family member who has had lobular BC and, as you say, it doesn’t always show up on mammograms. She too had a mastectomy and reconstruction.
I’ve stayed flat as I didn’t want any more surgery and it’s been absolutely fine. The recovery from a mastectomy can be quite quick. You’re generally in and out in a day and up and about very fast. I walked my dog the afternoon after my op and felt fine.
Whilst we always have to be vigilant, it’s very reassuring that after a mastectomy almost all of the breast tissue is removed. It has helped give me peace of mind.
Good luck with the surgery if you go ahead.
Frances x