I don't really know where I fit here...

I do not have BC... not that I know of. I've been reading these posts since 2007 and have posted once. I am really at a loss here and I just don't know where to turn. When my thoughts get the best of me I think it's possible that I could have IBC, however, I've had a negative excisional biopsy and the symptoms have been going on far too long. This is a vey long story and I don't know how to sum it up. If you're not into reading long benign posts, please skip this one as it includes 8 docs and many tests. I'm just completely desperate for some kind of direction.

10/07 I woke up with a black ulcer on my breast. I called my family physician (doc #1) who said it was a skin infection and put me on antibiotics. It actually drained blood and clear fluid while I was there. He said I somehow hurt myself and didn't remember. I went home and poked around and expressed bloody discharge and felt a hard lump in my axilla tail. I went in to see my gyno (doc #2), showed him where the ulcer was which was then a pink crater and was uable to locate the lump or express discharge. The lump could only be felt with my arm up but I didn't know this at the time. I went home, felt it and expressed more. I called a women's clinic because I was too embarrassed to go back to my gyno and the (doc #3) said it was a very firm jelly bean sized lump. I went for sonogram #1... revealed a normal appearing lymph node. I never heard back from the doc so I had the results faxed to me. The lump grew bigger and in November 2007 I went back to gyno and told him I cheated on him and had a sonogram. This time I had the bloody colored d/c on a papertowel and showed him the lump and sonogram results. He referred me to a surgeon and said this could be very serious. Surgeon (doc #4) ordered a mammo to be done the day of my appt. I went into imaging and was turned away because of my age, I was 28. The tech didn't feel it was necessary at my age to expose me to the radiation, I should have a sonogram. The surgeon was angry, she rescheduled my appt and spoke to the imaging center. When I finally saw her, she said that the axilla tail lump felt benign and the mammo was negative so she would follow up. I began to have severe nipple tenderness and developed a rash over both breasts all the way to my armpits. I used steroid ointment and it resolved. A few days later I developed a very painful mass behind and around my nipple. I went back in to the surgeon and she agreed and sent me for sonogram #2. I walked into the same imaging place and the tech said that I must have a strong family history. I told her no, just a painful lump and she asked me why I was there. I was humiliated! She said she only saw what looked like a dilated vein and did not feel the lump at all. I received a call saying my results only showed a dilated vein and that could cause "let down" pain upon standing. I swore I was never going back, I felt like a total claud. I woke up months later and the lump had turned into an acute red hot swollen inflammation. My nipple was also bruised and I was in a lot of pain. I went into primary physician (doc #1) and he said he hadn't seen a breast that pissed off in a long time. He gave me a rocephtin shot and two different antibiotics. I was to return if it got worst. I had an out of town office manager meeting for two days following the appt and couldn't get back in to see him. I took the meds and the other breast (right) developed a red hot swelled lump next to the nipple and the left became worst. I called the doc on my way back from my meeting and he said to go to the hospital right away as I wouldn't make it there before they were closing for the weekend. I went to urgent care and doc #5 told me that I needed to continue breast feeding and she would change my meds. I told her I wasn't breast feeding and she said that I needed a biopsy ASAP... recommended my surgeon (doc #4). I told her I would not go back to her and she referred me to another surgeon (doc #6). He looked at it, drew some breast anatomy and told me I needed a reduction and to lose 30 lbs. Lol... I almost sat on his buck forty butt!!!! I was told that he couldn't tell me exactly what it was without removing it but it was up to me and he couldn't suggest it either way. I went home and looked at my "infected" red breasts and decided to go ahead with the biopsy in August. A week later he removed it by excision and in recovery he told me he did infact find an "obstruction" and that he was concerned it didn't respond to the meds. I didn't get back in, my two year old had a terrible accident and was lifted to children's hospital. Meanwhile my aunt was diagnosed with her second bout of BC. uhg a mess!!! I called his office and the results were faxed to me: Chronic suppuritive inflammation, abscess formation, multinucleated foreign body reaction. Hmmm... no implants, no nipple rings. Not sure what that meant. I called him and he never called me back? I continued to have flare ups but was "never going back to a doctor." In January 09 I had a particularly painful red flare up on my right side. Back to the gyn armed with my biopsy result. He aspirated and obtained fluid and blood. He assured me that he caused the blood himself by poking around too much. He felt confident that he was able to reduce it about 80% and sent me out the door. Cytology came back with inflammatory cells, neutrophils, etc etc. He said it was normal. However, the same lump flared up about 2 weeks later, it never completely resolved. I went back to the primary physician who said he was concerned about resistant staph. Two more antibiotics and more rocephtin. I was able to express massive amounts of pussy discharge from the left breast (not the one that was aspirated) and straight blood. Three slides full and still going. He took extra for a culture so he could be sure I was on the right meds. That night I had spontaneous bloody discharge. Culture came back negative for bacteria, with some skin flora. "Normal" again. Discharge came back with purulent exudate and suggestive of some type of inflammatory response. Off to a different gyno (doc #6) with another left breast flare up. He did sonogram #3 and saw nothing. He suggested with the bloody discharge and dilated vein that imaging was possibly looking at a papilloma. I was sent for a mammogram and ductogram which was not able to reveal the ductal sytem due to the obstruction blocking the duct. Report says it is not believed to be extradation (sp?) but possibly a cyst. However there was a spiculated density on the mammo and they needed to follow up immediately. Follow up mammo showed the density had compressed out (yay) and I had another sonogram. The tech said "well I don't see anything so apparently the procedure resolved it." At this time, I still had a nodule... i still have it today... the lump no longer disappears when the inflammation comes and goes. It was not resolved. I went home and cried and cried... I thought they had found it, I really believed I was close to answer until I had the sonogram. Again, I was "never going back to the doctor!" The new gyno wasn't comfortable with this and said it was out of his scope... he referred me to a real breast specialist (Doc #7) in the big city of Anchorage Here we go... she'll know. Right? I came armed with a file of test results this time. She reviewed it all and said that what I had was a real "*itch." She assured me she would fix it, that it was not normal, she could feel the lump (although it was not flared up at the time). She said the ductogram was very significant. I left with a feeling that someone finally understood that I couldn't live with the pain and constant anxiety. I had a flare up soon after and returned to my new BREAST surgeon. She saw the redness and swelling and decided it wasn't hormonal and put me on clyndamycin which makes me very ill. I am allergic to PCN and it took her a very long time to find a med that will kill aerobic and anaerobic bacteria. The objective was to get the inflammation down enough to operate, however, there was a risk of making the condition worst. She reviewed all of my medical charts and results and said "what? normal? this isn't normal!" I left and had another right breast flare up and called the office asking for more meds. I know she is now under the assumption that the meds work, I should have asked for the operation instead. Now on another left breast flare up (they are getting to be more often) I called her office Monday because this one is a little different. She is out of town. Uhg! This time, the redness has engulfed my entire areola instead of just around the nipple and lump. The pain is worst and the last two flare ups have caused pain in my axilla, my collar bone and chest wall. Sooooo... back to urgent care for something... I don't even know what to ask for anymore. Different meds? The doc (doc #8) put me back on septra to kill mersa (resistant staph). He asked if the inflammation is always in the same spot and I said yes. Because this flare up looks like skin inflammation and not a lump like usual, he told me I should see a dermatopathologist and we only have one in Alaska. Is he thinking punch biopsy? With all of this I have a horrible sharp stabbing pain accompanied with bee sting like pains. I also have a three year old who knows to stay clear of my chest. Don't sit on mom's lap, no hugs when I'm in pain, no kicking, elbowing, or playing too close. That is just sad!!!

Sorry that was so loooooong. It's been a long time and I don't know where to go. My surgeon will be back Monday, should I go ahead and see Doc #9? These flare ups disappear as fast as the arise. I'm afraid it won't be there by the time I get in as it's already been a week. I'm so frustrated I don't know who to talk to anymore. I have so many questions!

If these are cysts, why don't they show on a sonogram? What are the odds of developing carcinoma from chronic inflammation? The symptoms disappear so often and it's been so long already, is it still possible that it could be IBC? Should I even bother with a punch biopsy? What happens next? Another doc...another med... another inconclusive test??? Should I leave it alone and know that it's going to go away in a week or so whenever my breast flares up???? Why all the sharp pain and why the axilla pain now? I don't understand!!