Swelling above lumpectomy scar after 18 months

Hi Marthashouse 

Sorry you’re having this worry, good it’s getting checked out. Horrible to be back in that limbo land of waiting, though. 
So I can only speak from my own experience - I didn’t have exactly what you’ve described but I have got ongoing stuff in my treated breast, 7 years post surgery and nearly 7 years post radiotherapy (which was 3 weeks back then). Post rads my treated breast was (and still is) bigger than the other one, despite being scooped out and zapped. I got referred to the lympheodema service and the specialist nurse there confirmed that I have lympheodema in that breast. It feels a bit spongy, a bit puffy, and any bra seams leave ‘pitting’ marks. It’s apparently a less well known side effect of radiotherapy. I wonder if that may be a factor in your breast changes? It’s now known that rads can be responsible for issues many years later - I think it’s known as ‘late effects’. I’m of course just speculating as I’m not a medic. 
I was given a list of advice points from the nurse, which I’ve followed and means that mine is managed and has not given me much in the way of issues over the years, other than a big red patch about a year post surgery which was treated as a skin infection and cleared up with antibiotics. I was of course terrified at the time and burst into tears at the GP surgery as I feared I’d now got inflammatory breast cancer. But was sorted within a week and so far so good since then. Also the skin under that breast has an orange peel ish appearance. The whole breast still hurts if poked and prodded (eg during a breast examination) but that just seems to be its new normal. 
Wishing you well, hope that referral comes through as quickly as possible. Love and hugs, HFxx

Thank you so much for this. I didn’t even know that you could get breast lymphodema. Thought it was just arm.  Have googled it and that seems probable so has put my mind at rest.  Just couldn’t understand what it was xx