IBC - Am I Going Crazy?

[Laurie in Coral Springs]

Hello!

I have a question about IBC and the symptoms.

I have noticed changes in the appearance of my breasts which include asymetry, color or discoloration (looks like matisis - a lot of red veins without the swelling, mostly on the bottom of the breast and around the areola), some discolorations that look like reddish/brown streaks that start at the areola and branch out, and almost 1/2 the breast with peau d'orange.  There is also a small red mark that appeared about 6 months ago before there were any other changes.  All the other changes I have appeared about 2 month ago.  The left breast (the larger one) is NOT swollen, just bigger than it was, so the peau d'orange looks more subtle than the pictures of it that I have seen online.

I have had mamo's and sono's and an MRI (result was a bi-rad 3).  There are small cysts, scattered microcalcifications.  I have had a biopsy in the left breast for the cyst that looked "suspicious" and it came back with proliferative hyperplasia, adenosis sclerosis enlarged ducts, etc.

My doctor wants to have a follow-up sono and mamo in what would be 3 months from the biopsy.  She said that there were plenty of benign things that cause peau d'orange on the breast.  "Like what?" is what I now realize I should have said!  

Does anyone know of anything besides mastisis which I don't have (I am 48 and NOT breastfeeding) that may cause the skin changes. The peau d'orange and the bruised looking skin -I am so confused.  Part of me thinks I am crazy and just over reacting to normal/benign breast changes and part of me thinks there is more to them than what I have found out.  

My doctor (this the 3rd one I've gone to already regarding these skin changes) claims that she has seen IBC and say's I don't have it.  I think from all the information that I have read about IBC on the internet is that there are a wide variety of ways that it can present itself.  I am not sure that it is valid for a doctor to say that they can eliminate IBC as a based on the IBC that they have "seen".

Any advice would help.

    

[Laurie in Coral Springs]

Thank you for taking the time to read and comment on my issue -

often,
I agree that I should keep going until I get an answer and am satisfied.  I just get a little tired of the process after a while if you know what I mean....

laura1219,
Thanks for the advice about the cancer soiety - I will contact them this week....

Thank you both and I wish you the best.

Laurie  

[often]

I agree with Laura...keep going until YOU are satisfied.  If the docs you are seeing are not breast specialists...find one...find the best you can...contact the Cancer society nearest you for references...Also....check out breastcancer.org...there is a lot of help there...I found it invaluable when I was going through my journey.

[laura1219]

Unfortunately I cannot shed any light on IBC at all for you, but I just wanted to encourage you to keep going to doctors until YOU are satisfied with what they are telling you. I don't know if the doctors that you have been to are breast specialists or general practitioners, but keep asking questions until your mind is put at rest. While these changes may be related to a "normal" something going on with your body, until they could tell me what that was, I wouldn't stop pushing for further diagnostics. Hope this helps a little and hang in there.

Laura (34)