Is IBC possible after BMX?

Racquel

Not sure where to even start but probably from the beginning.  Found a lump in left breast last year and was diagnosed May 15 with BC after core biopsy.  I'd had nipple discharge from that side for a while and it was crusty at times.  Had 6mm lymph node on rt side.  Opted for double mastectomy -- done June 4, 2009.  Thought they'd take everything but have since learned that the BS left quite a bit of tissue.  SNB came back neg but had IDC and DCIS.  3 rounds of TAC.  Everything seemed to be ok.  Fast forward to June this year -- pain under left armpit as well as my chest feeling like it's on fire and general pain throughout.  Go in to onc and he says "you're fine" ... no bloodwork, nothing.  I go to a different onc who orders an MRI.  It comes back with 2 axillary lymph nodes on left side suspicious but the 1 on rt is now gone.  Surgeon orders US and radiologist I talk to says "I don't believe it's anything".  OK, they said the same thing over a year ago.  He refuses to biopsy because it's too dangerous.  I ask him about washout and he says it normally shows malignancy.  I say "ok you don't think it's anything but it showed washout?".  He tells me if I was his family member he'd want me to Mayo or UW.  This onc did bloodwork and said based on US "you're fine" and sent me on my way with a nerve pain script.  OK, this is now November and I still hurt.  No, I burn and I still hurt under the armpit.  I itch, I hurt down to my ribs and the breasts are painful.  I take the meds ... THEY DON'T WORK!!!  I had what looked like a bug bite on the rt breast for about 2 weeks but that went away.  I itch down to my rib cage.  There are 2 areas below each breast on the outside which are red and splotchy and ITCH.  I haven't changed detergents.  I don't wear a bra so it's not that scratching.  I'm at a loss.  I can't get any doc to say anything except "you're young, we caught it early, you're fine". 

I finally picked up my MRI disk yesterday and took a look at it.  The CAD for the uptake showed a Kinesis #3.  I am over being scared and crying.  I've moved onto pissed off.  I can't get a referral to go to the university or Mayo because my HMO refuses.  It's my HMO's onc who dismissed me initially.

What do I do now?  Is it even possible to have a recurrence a year and a half later?  I know my body and I know this doesn't feel right.

barbe1958

Have you been checked for:

mastitis?

lymphodema?

infection?

I couldn't see anything on Dr. Goolge about a Kinesis #3, so that doesn't mean anything to me.

Racquel

They won't flippin check me for anything!   The kinesis that I'd read about is in regard to uptake of the dyes injected.  Apparently there are 3 different "speeds" or something with regard to washout.  Rapid -- which my report says it was -- has a higher rate of malignancy. 

I called today and made an appointment to take my info back to my BS.  Still in the same damned HMO that I can't get anywhere with but at least it'd be another set of eyes which deal with breast issues on a regular basis.