Did they just diagnose me with ibc over the phone?

mzteeohh

Okay, I have posted on waiting for results. But maybe I've gotten them? Okay long story short, I went to the er for what was originally thought a spider bite. This "spider bite" had occoured 2 months ago. And I had a large section of orange peel skin with a pinkish tint. I called it edema as my breast looked like a monster when I took my bra off with all the lines and ridges. When my armpit started getting sore and I had stabbing pains, I went to er. The pa stated it was mastitis. I asked her if the 2 rounds of antibiotics would have cured that. She said probably, but we will give you more just in case. Then a dr came in and examined my breast. She stated it was not mastitis. And ran some tests. She advised sher was sending me for a diagnostic mammo. I heard nothing of the labwork, or results of the fluid excreted from my nipple. I went for mammo the next morning, and once completed the nurse left to speak with the dr. She came back with the dr on the phone. He was speaking to the hospital I was at the night before. I heard him talking about ibc, and needing to go to a surgeon asap for staging. The nurse said I have moderate thickening of the skin on the right breast, and I need immediate surgical attention. I was so dumbfounded I just said okay and left. I got home and the hospital sceduled an appt with surgeon for the 7th. Ugh! Now does this sound like classic ibc? Those are the words the hospital used. I am having a biopsy and more tests on the 7th. I also know my birad score was 5. Could this be anything else? Could I just have an abcess? And would this show up on a mammo? Any input would be helpful. Thanks ladies.

ibcmets

It sounds like they are very suspicious of ibc and will run all the required tests to confirm.  They need a biopsy & the other tests will let them know exactly what the problem is.  I had numerous tests right after the biopsy.  The biopsy confirmed ibc & idc and I also had a bone scan, MRI & Pet scan.  I was very scared but glad they required more than 1 test so that I would know exactly what I was dealing with.

I certainly hope it's not ibc for you.  Please let us know how your results come out and how we can help.

Terri

mzteeohh

Thank you Terri. I just tried to post and it wouldn't let me. So I will keep this short just in case. Once I found out about ibc, everything kind of clicked and I had an oh that make so much sense moment. But once they started rushing me here and there and staying breast cancer I started freaking. I guess I won't know anything for sure for a while. Did you suspect ibc prior to being diagnosed? I just keep trying to think of anything else it could be, but cannot find anything. Thanks again for your time and wisdom. I will update with results as soon as I know them.

pj12

Mzteeohh,



I am so sorry you are going through this. In many ways not knowing is worse than knowing. It does sound like things are moving fast, thank goodness.



I haven't heard it discussed lately but there has been a limit on the number of posts per day a new member can make. I assume that policy is still in effect. So I think there is a 5 post a day limit until you reach 50 posts. You can send all the private messages you want and also receive them. And of course you can read all you want. Still It is so frustrating when you are desperate for information and support.



Sending you good vibes and prayers.

sheila888

pj.......They lifted 5 posts rule long time ago.

sheila888

mzteeohh....I'm here to give you a big hug.

One day at a time....will be thinking of you.

Sheila♥

mzteeohh

Okay. My crappy internet connection is the culprit not letting me post. I do want to thank everyone here for their support. It is so nice knowing I can come here to vent or to educate myself further. I have thisevening just noticed my nipple inverting. Is there anytime frame for progression with ibc? My symptoms started 2 months ago. I am really trying not to dwell on it, but i just need to know!! I will really be a mess when I am waiting for biopsy results! Thanks for letting ramble!

Laura_Jean

Sounds like they are checking for that possibility and good that they are checking because if it is ibc, you can then start treatment quickly. Unfortunately ibc is sometimes misdiagnosed as infection as some doctors are not familiar with the symptoms which do mimic mastitis.



Praying for good results from your tests next w eek,



Laura

Claudia413

As a 4-yr survivor of IBC, I just want to mention that the proper order of treatment for IBC is chemo first, then surgery, followed by radiation and maybe more chemo. Surgery is not the first thing you do with IBC. Make sure your doctor knows the Guidelines for IBC. My doctor wanted to rush me into surgery and I had to educate her with what I had learned online...chemo first, then surgery. She had to go check for herself. There are plenty of us out here with IBC or NED (no evidence of disease after treatment). Feel free to contact me with any questions you have and check out the videos and info at the Inflammatory Breast Cancer Foundation (www.eraseibc.com). 

ateepay

To add to what Claudia and others have said; please know there are IBC specific clinics (if...IF) that is what this is.  Dana Farber in Boston, Fox Chase in PA, MD Anderson in Houston and newly opened at Duke University Hospital in N.C.  

Also praying for good results, and let us know.