My IBC Symptoms

Well up at 5 a.m. again.  It dawned on me that my symptoms weren’t overly obvious, and if I hadn’t been as aggressively pursuing an answer I could be in a much worse off condition.  Dr. Slovak, the surgeon who I was referred to after going to the ER lectured me at our first visit and said it would be very unlikely for me to have IBC (hadn’t seen my boob yet) because of my age -that it is usually in older women (NOT TRUE), and it’s bright red with a rash.  After his 10 minute lecture (I mentioned possible IBC when we first met and he asked me why I was in his office and this set him off), he looked at my breast then said and I quote ‘well I can see why you might think that, you do have the thickening of the nipple and a little bit of the peau d orange.  Let’s set up an U/S & mammogram’.  I then said ‘well I read that those tests usually won’t pick up IBC because there rarely are tumors with which to draw from right?’ he said yes that’s right but let’s start here and work our way up.  The Breast Scheduler made my u/s mam appt. for the Tuesday of NEXT week-and this was just Weds.  That is a long time away when you think you have this (or any) disease.  This wasn’t good enough so by way of my whining and pushing, they did end up getting me in to a different facility than theirs that day.  Everyone was very casual about it.. it was like my house was burning and I’m trying to rush them along but noone sees the fire but me.  As suspected they did see some nodules I guess is the term after the mammogram and U/S and the radiologist came in to say let’s biopsy this week.  And here I am. 

My symptoms started about 2 months ago- maybe a little longer but I might be off on it because like I said I thought nothing of them and didn’t pay attention. 

Stabbing pain was the beginning.  This wasn’t all the time, or even very often at first and came on mostly when I was sleeping.  I remember it waking me up a few times, and I would just change positions. I should have noticed it though because this pain is not the dull ache we feel during our cycle (everyone kept asking me about that) it felt like a little knife inside literally stabbing me.  So for me that was first- sharp pain, stabbing pain.

Then later I would say several weeks to a month I remember stumbling into the bathroom in the middle of the night and catching myself in the mirror and stopping to stare at my breast.  My nipple looked funny, it was bunched up pulling itself inward.  I remember thinking, hmmm that’s weird and going back to bed. 

Fast forward more weeks to a month and here I am.  The only thing that caught my attention to call someone and be worried was that the pain increased in a short matter of time, my breast had gotten bigger and my nipple was definitely looking pretty funny.  But it’s the pain that really got me, it was often and then ended up being constant.  We were at the Easter egg hunt the day before Easter and I’m standing to the sidelines getting ready to race and I told Ken ‘ my breast hurts pretty bad’ and he was like, it’s probably nothing.  Later that day I called the advice line and the nurse said to get to the ER within 3 days.  At first, she said 24 hours and then changed it but said if the pain increased or I noticed more symptoms get in ASAP.  Easter morning, the pain had increased so I went in.  So those were my symptoms, and I hear the tumors are large so I obviously should have been paying more attention and listening to my body but I had never heard of IBC before, and it is widely common that pain is not associated with breast cancer.  I intend to make sure everyone I know has heard of this and is aware.

Ok so my symptoms were stabbing pain first, then nipple inverting and a slight darkening of the nipple (it was just pulling upward it didn’t look like some of the pix i saw online), breast size increase along with ridges and thickness developing and then at the time of diagnosis texture change peau d orange just a little bit-it is still just slight.

I did not and still do not have:  rash, itching, red color like some pix or even much of a red tent to my breast.  There wasn’t any more heat being generated than my other breast, no nipple discharge then or now. 

Also, the antibiotic that the ER doc put me on didn’t change anything other than some of the swelling going down.  i did notice it getting softer and not as hard as a rock, the doctor said it could be because maybe there was an infection along with everything else going on but who knows.  I have seen some of the pix of IBC online, and my breast doesn’t really resemble alot of them so I think it is important for everyone to know all about the symptoms so they don’t get misdiagnosed as mastitis over and over.