Cancer-free since 2004 but strange occurrence--need help

The pathologists  in NYC requested more specimen to do their own slides and stains. Tumor board looked at results. They are consistent with metastatic Breast CA, Biopsy show "very extensive infiltrating tumor involving the dermis and subcutaneous tissue." My original cancer was Estrogen+. This isn't, but is progesterone+. The carcinoma is poorly differentiated.  My insurance company has assigned me a case manager to help me get an appt. at Johns Hopkins (I live in MD now).  I called their new patient appt. line last Tuesday and a coordinator was supposed to call me back the next day.  I didn't hear back for a week--after the case manager intervened.

I'm very scared.  I talked to a doc from my insurer--she's a breast ca survivor--and she said they will want to do extensive workup, e.g. maybe colonoscopy, pelvic ultrasound.  I really, really thought I was cured.  I just can't believe this is happening.  I've waited to tell my grown kids because I didn't want them to worry, but decided it's time. I need their support!

If anyone has had anything like this--showing up randomly in the groin--I'd like to hear from you. 

Thank you so much! I live in Ellicott City.  I sent a request to join the Divas.  I see Dr. Deborah Armstrong on Monday (10/3) morning. She's a Hopkins oncologist who specializes in breast and gyn cancers. Has anyone heard of her?  Hope to know more after appt. 

I am still here, but posted a question on another board recently.  I am on Tamoxifen and had radiation therapy last summer on two intramammary nodes that appeared as mets in PET/CT scan and the entire breast where my original tumor was found.  I had a clear PET scan in December, so I'm currently in remission and will be followed up at Johns Hopkins with PET scans every six months.

The latest complication in my story is that the radiated breast has become very hard and the implant is no longer symmetrical with the other side. It's pushed up almost to my clavicle (way too much cleavage!) and is almost two inches higher than the other side. I had a consult with a plastic/reconstructive surgeon. She said she would remove the affected implant and replace it with a smaller one, but didn't sound very encouraging about the resulting esthetics and said there's a high risk of failure of the implant because the radiated skin doesn't heal well.  I would love to hear from folks who've had radiation after reconstruction, if they've had a similar complication, and what they did about it. Should I consider just having the implant removed and use a prosthesis on one side?

Thank you for any advice anyone on this board could offer.