I can't believe what you have gone through as I was lucky, lumps found early and only had lumpectomy. What I can agree with is that not enough information is given and I felt totally isolated.
I was told that as it had been caught early I was lucky and through my own naivety I thought everything would then be "gone away" no mention of side effects or lymphoedema! I faced this on my own as I didn't want sympathy, just wanted it gone! No need for radiotherapy at my age as it wouldn't improve survival rate so I thought I'd "got away lightly"
Eventually turned to my 3 sisters for support and felt better but I think better input from breast care centre at the start would have let me know what to expect instead of thinking how lucky I was.
Forewarned is forearmed. They need to give you more information at outset as I am not one to ask for help. Brought up to be stiff upper lip! Dozens of brochures don't help!