Help from Anyone Knowing about IBC

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New Member

Date Joined Sep 2007
Total Posts : 7
   Posted 9/10/2007 11:42 AM (GMT -7)   
Hi Everyone,
I've been lurking for about a month and have been afraid to say Hi, but I have so many questions, I just need to talk with someone.  Sorry for the length of the message.
I am 53, have been perimenopausal for 4 years, and only spotted last month (2 weeks late) instead of having a period - which is the first time this has happened.  5 weeks ago, I had severe pain just above my left breast.  I also noticed what appeared to be slight bruising and warmth.  Two days later, I started having sharp pain in the breast, under my left arm, down the underneath of the arm to the elbow, and up through my left collar bone and neck (all the lymph node places).  I also had a place about 3 inches above my breast where the skin felt "sticky" for about 10 days.  I went to the doctor, but my doctor could not find any swelling in the nodes (or anything in the breast) despite the continuing pain.  (I do have systemic lupus, though, and I'm not sure exactly how my immune system reacts to anything at this point).  He thought the "sticky" skin might have been shingles (although no blisters appeared).  He also thought the other area might be a bug bite and gave me 10 days of antibiotics 
The doctor referred me for a mammogram due to the pain, which was negative except for denseness in that breast which looked the same as the previous 5 years of mammograms.  After getting on the web and terrifying myself about IBC (and seeing it was often mis-diagnosed as a bug bite or shingles), I asked my GP to refer me to a breast specialist, as my maternal grandmother had BC at 35 and I've always had a great fear of it.  The doctor saying I might also have shingles also scared me because I know this can be a sign of an underlying cancer.
Of course, 2 weeks later at the breast specialist appointment, the discoloration had faded and she said she was 99.9 percent sure I didn't have IBC.  What made me uncomfortable with her opinion was that she stated that IBC doesn't cause pain.  All the websites on IBC list pain in the breast as one of the symptoms.  This made me doubt everything she said.  3 days after my appointment with her, I got a red, raised rash on that breast (just to the right of the areola) about 1 1/2 inches long.  Her office could not fit me in to see her at that point.  The rash lasted about 10 days.  I have also noticed 6 or 7 little "bites" (tiny, raised marks) that come and go quickly (within 24 hours) during this whole thing.
My PCP (who is wonderful and hearing my concerns about IBC) requested a breast MRI, but the insurance company (TRICARE) is denying it because there is no palpable mass.  I have appealed the decision and sent them info on IBC as they appear to be clueless about it and the fact that you rarely get a mass/lump with it.
I am still having the pain, mostly in the breast and down the underside of my arm to the elbow, and the occasional tiny "bite" mark.  The breast is very, very slightly pink (an area the size of a quarter in the location of the original rash) and I also see a very slight "bruise" about an inch above it.  (Although my husband says he can't see what I am calling a bruise).  
My questions:  Does this sound like IBC?  Would the rash fade or would it persist/worsen if it were IBC?  Since it has been 5 weeks since the first symptom, would I be seeing something else if this were IBC?  Besides continuing to push for the MRI, what else should I be doing at this point?  I haven't been able to think of anything else and am absolutely worried sick.  Any ideas/advice/comment would be so greatly appreciated!

Veteran Member

Date Joined Jul 2003
Total Posts : 2044
   Posted 9/11/2007 9:59 PM (GMT -7)   

Here's a good place to go for information on IBC.

Don't rest until you are comfortable with what the doctors are telling you. Lauri

"Go confidently into the direction of your dreams. Live the life you always imagined" Thoreau
Life is not measured by the number of breaths we take, but by the moments that take our breath away.

New Member

Date Joined Sep 2007
Total Posts : 7
   Posted 9/12/2007 8:44 AM (GMT -7)   

Lauri - Thanks for the note and the link - much appreciated!  Pam

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