Undiagnosed. Symptoms match. Awaiting consultation & biospy 2.

Praying you don't have IBC but your symptoms do sound similar.  Please make sure your surgeon knows the protocol for treatment of IBC if that is what comes back as the diagnosis.  Surgery to remove anything with IBC IS NOT ACCEPTABLE !!! 

Chemotherapy first, surgery second, radiation to make sure there are no lingering cancer cells.  That is the Global accepted protocol for treatment.  Also, push to get the punch and core biopsy sooner.  Waiting with IBC is not acceptable either.  Because this monster moves so very fast, you need to get a fast diagnosis and RULE OUT IBC.  If it is though, you need to get into treatment ASAP.  

Patti Bradfield, Past President and Founder

The Inflammatory Breast Cancer Foundation

www.eraseibc.com 

I, too, am waiting for my appt. breast redness started as a small spot 7 months ago. 2months ago the spot grew - it's now a sideways "c" shape on the bottom half of my breast. My breast also feels slightly uncomfortable. Had a sonogram and mammogram - both negative. The doctor told me to see a breast surgeon for further investigation (assuming biopsy). Am scheduled to see a very good MSKCC surgeon but not for two weeks. Of course I am worried and any insights would be appreciated.

I am wishing it were more straightforward! Taniwha, I hope that you are doing ok.  I had my appt today with the breast surgeon, who did a second ultrasound (and said ultrasound imaging is much better at picking up IBC with today's technology - true?). The ultrasound was clear. She had me schedule an appt with a derm to see if the derm could find any reason for the redness. At the same time, we scheduled an MRI (for Thursday), and a biopsy (for next Wednesday). She feels it is NOT IBC, but can' figure out what could be causing the redness (she also felt that the affected breast was warmer than the other breast). One reason she thinks it's not IBC is because I have had some redness since the beginning of 2012 - a small spot, which grew this past August. So, thinking that IBC would advance more quickly. Is that always true? Bottom line, I won't relax until the biopsy.

I hope that all of you who were awaiting test results have since received good news and that is why it has been quiet on this board for 6 days.  I however need some reassurance and/or guidance as I feel like I am going to lose my mind!  As you can see from my signature, I was diagnosed with stage IIb TNBC in August of 2011 and after surgery (lumpectomy), chemo and radiation, I wrapped up my treatment in April of this year. 

About 18 days ago (Friday), my husband noticed that my right breast was a bit red (this was the breast the cancer was originally diagnosed in) when we were getting ready to go to bed.  I took a good look before I continued getting dressed for bed and agreed - almost looked like I had gotten slapped on the underside and inside or the breast.  When I woke up the next morning (Saturday), it was a bit more red and the nipple looked a bit strange...like when you get the chills and the skin withers somewhat.  I was definitely taking note of everything but wasn't truly alarmed until the next day (Sunday) when the nipple appeared to be inverting.

Monday, I called my MO who told me to call my breast surgeon and get in for a sonogram and possible biopsy.  I did just that and was in my surgeon's office the next morning (Tuesday).  She started me on an antibiotic (Bactrim) and said to watch it closely and if there was no change by Thursday, I was to call her.  When Thursday came, there was not only a lack of positive change, but things had intinsified.  I thought that surely she would be doing some deeper checking but I was wrong.  She put me on two more incredibly strong antibiotics (Cipro and Cleocin).  I went through the next weekend feeling awful from the antibiotics and getting absolutely no benefit from it.  On Monday, I called back and she once again got me scheduled the next morning (a week ago today).  Still wanting to believe it was an infection, she sent me to infectious diseases and once there, it took the doctor about 45 seconds to say that it was NOT an infection, much less an antibiotic-resistant one.

I went back to my surgeon's office afterwards, at which point she performed a sonogram and a biopsy on a seroma I had had since my lumpectomy (why she biopsied this, I don't know).  She then said that she was still sure it was an infection since IBC was so rare and sent me on my way pending the outcome of the tests.  Yesterday, I finally got a call stating that the seroma tissue was benign (no surprise) and that there was no sign of infection (gee...shocking).  She could not figure out what was going on and why I would have swelling of some of the axillary nodes under my arm. I then asked her if we could schedule a PET scan and a punch biopsy, just in case we were looking at a case of IBC and she refused to order/perform the tests, stating that this just couldn't be IBC.

I am at a loss at this point. The breast is not getting better. There are thickened areas of skin in several places with the dimpling and rough texture.  The nipple is almost completely inverted and my breast is slightly swollen, warm, itchy and peeling.  I am now feeling some shooting pain that shoot up through the breast to either my armpit or back through my chest - not constant but when it happens, it will stop me mid-sentence.  Even with all of this, she wants me to wait a "...week or two" to come back and see if it starts to resolve itself.  From what I have read about IBC, these weeks could be the difference between beating this disease and signing my own death warrant.

I would appreciate any input from any of you who have dealt with this.  I am not a wuss and definitely not a hypochondriac...but I am terrified.  I can deal with chemo again if I have to - of that I have no doubt.  I will fight with everything I have in me, just like I did the first time.  I just need to have someone willing to test me first so I know what it is I have to deal with.

HELP!!!!

Mmizerak,

I would find another breast doctor if you can.  You need another biopsy & ultrasound of the breast.  They probably will not order a PET unless they find something.

Terri