Would love some suggestions/feedback :)

modernmarvel

Hi all!  Since last Sept I have had some crazy issues with my left breast (hereafter referred to as "problem child").  I had a breast reduction 16 years ago, and since then I have not had any sensation in my gals- they never grew during/after pregnancies, I couldn't breast feed my kiddos, etc.  They have just been perfectly perky little blobs of fat on my chest.    Then in Sept I noticed my problem child had grown about a cup size bigger.  And she itched ALL THE TIME!  I went to my dr thinking I had cooties, but she sent me straight for a mammo/us.  All came back clear.  A week after the itching, I started having pain on the outer left side of my prob child, constant pain.  So back to the dr.  They gave me antibiotics for mastitis.  Pain grew (and still does) exponentially worse each week- but the dr said not to worry, cancer doesn't hurt and your mammo was clear.  Next was this clear ooze from my nipple- again, NOTHING has EVER come out of these gals.  It was just a spot on my shirt in the morning after sleeping on that side.  OK....then my armpit started to swell.  Given more antibiotics for that.  The swelling has (from Oct til now) travelled from my armpit, along my collar bone and up my neck- all on the left side of my body.  I have some bumps under my breast (feels like they are on a rib) and 1 on my breast bone between the problem child and the good child.  Dr gave me a 3 rd course of antibiotics, again telling me it is mastitis. I left that dr in Dec. New Dr has done an armpit MRI (clear, but shows lymph nodes), a gallon of blood work, sent me to a breast surgeon (who tells me I have mastitis without even examining me, and that every human has discharge from their nipple if it is squeezed hard enough- to demonstrate, he attacked my right boob and squeezed so hard I had bruising for 3 days, but still no liquid...) and is still stumped.  The ONLY abnormal findings in my blood work was wicked low vit D and B-12.  I have to have weekly shots of the b, and take a d pill once a week.  UGH.

Have ANY of you experienced any of these insane symptoms and gotten some "problem solved" answers?  I really would like to feel normal, and have full use of my left arm without worrying about the intense pain I will be in if I move wrong, or brush up against something, or breathe deep.....ok, that last is an exaggeration.  

Thanks for any insight!  

***I posted this under a different topic, and it was suggested that I post here. Also, mastitis and fibrocystic breasts have been ruled out.***

Kicks

First of all - of all the BCs DX'd (only 20% of all biopsies done) only 1% - 5% are IBC so it is rare.  But for those of us who are DXd IBC - it is very real.  IBC is very aggressive and can literally present itself overnight.

I never had any pain.  I found an enlarged node (about the size of an almond) under arm one night that had not been there the night before.  My PA was on vacation so it took me a week to see her.  In that time, it had greatly enlarged.  She had me in for a new mammo (last was clear less than  mths before) that afternoon.   Had the new mammo, sono and biopsy that afternoon with the path report the next morning at 8 as expected -IBC.  From then it was 18 days before I started neoadjuvant chemo - that was Aug '09 and as far as I know today - I'm stil NED. 

1 Vit. D pill a week is not much when you are low on D.  I've had to take D daily during fall/winter/spring for more than 20 yrs.  I also have to take a B complex daily.

I don't know why you were told to come to the IBC section But you are here now.  I would definitely be looking for different DRs!  There are so many possibilities - so without 'answers' - 2nd and possibly 3rd are in order.

modernmarvel

Thanks for your reply! I certainly don't think I have IBC, or any type of cancer really. I think I have some sort of wonky breast issue that so far can't be explained.  I posted in the "worried" forum and a responder said I should try here.

I've done more breast related research in the last few months than I ever thought I would, and this is by far the best site for honest and helpful info that I've seen. 

I will be going to a plastic surgeon next month- theory being that since I had a reduction and my inner breast is different than "normal" he might have insight. I think it's a waste of time, but will do it to comply with insurance.