ibc second time - anyone else with experience?

Help - just been diagnosed with second lot of IBC. Was diagnosed last year sept on one breast. Had chemo, then mastectomy, then rads. Now found problem with other breast (inverted nipple) and was promptly diagnosed with a new bc of less aggressive kind. So had mastectomy, but results from tissue analysis show this is ibc too. Plus lymph nodes affected too. My last op also included removal of ovaries as both estrogen positive. Was on tamoxifen, nor letrozole. Next step rads again.
Very scary stuff. Anyone else gone hrough something similar?

Hi Christine
I have had a similar experience had IBC in April 2009 had chemo, mastectomy and rads, then on tamoxifen.
In May this year enlarged node picked up on mammo, then breast lump on ultrasound.
Had mammo, then suspicious area picked up on ct scan on I vertebrae, but not on bone scan.
So had mastectomy, rads and started letrazole, bone strengtheners.
It’s a very scarry time for you, and also the disbelief that it is all happening again. It does get a little easier when you have a plan in place, also some of the wonderful posts and inspiring stories on here help. I feel quite well at the moment.
Hope you managed to have a good day yesterday
Take care Mandy x

Hi Mandy
Thanks so much for responding. Xmas has been tough. Your message has been very helpful for me. I am on letrozole now too, and will be having rads next. Very scared.

hi christinep, i was diagnosed with ibe in sept 2010 had all the standered treament plus herceptin, had a local reccurance in sept2011 four nodules removed they said it was some cells left from oringinal dx no further treatment needed, but now just found two more small ummps appeard on sat waiting to see my surgeon next week it just never ends hope you are ok x