Just wondering if anyone else is similar

Hi,

I was diagnosed with IBC by a tumor board meeting and deciding they "had to call it something".  My history is this.  During my period last June, my breast swelled, which they usually do.  I had just started running with a friend and would tell her for about one week that one breast was larger than the other and I needed a better sports bra.  Then it turned red and was warm to the touch.  I went to my pcp who put me on antibiotics and ibuprofen but also sent me for an us.  Showed extensive area of heterogeneous echogenicity most likely representing a wide area of inflammation but no definite fluid collection to suggest an abscess.  Mammo done showing 4 areas of calcification, all suspicious for malignancy with skin thickening present.   MRI followed which confirmed everything on the right breast and adding large (3 cm )lymph node but also brought the left breast in as questionable with moderate diffuse enhancement greater than the 150% threshold value and added a malignant appearing lymph node on the left.    Sterotactic biopsy of one calcification done on the right returns as IDC Grade III ER/PR+ Her -.  PET scan confirms 2 malignant nodes on right but no spread anywhere including the left breast that was previously noted to be abormal on MRI.

Port placed and skin biopsy done at this time - no IBC.  My Onc went back and forth that IBC is a clinical dx vs. a pathological dx.  Symptoms of swelling and redness improves on anibiotics and are totally gone 2 days after first chemo of TAC.  Onc says he is leaning away from an IBC dx and will be Stage IIIA.Thought perhaps swelling and redness was from the large lymph node blocking how the breast drains. Completed 6 TACs. Bilateral mastectomy done with axillary dissection.  One node remains positive but has shrunk from 3cm to .8mm.  Saw Rad Onc and he feels strongly this is not IBC and does not want to radiate superclav.  Here is where tumor board comes in.  Tumor board says it is inflammatory so Rad Onc says he has to radiate superclav if they are going to call it that.  I have 10 rads to go and then will see Onc regarding what is next.  Probably tamoxifen. 

Anyone else experience similar with negative skin biopsy and other cancers present?  Anyone else given TAC for IBC. 

I guess I just needed to vent to others who are in the same boat.  I have found such amazing posts of courage and wisdom here so I wanted to join in and hopefully find similar situations.

Thanks for reading my long post.

Diane