IBC? what to do next

NinaE

So... where to start? i also posted this on the main "i'm worried forum"

About 2 years ago my right breast nipple started inverting and developed a "dimple" (is what the nurse called it). Instead of the nipple bing shut and perky it is open and looks like it is smiling at you.  also had sticky discharge off and on since then. Sometimes the nipple would get super hard (like a contraction), especially if i pushed it to make it come out. Hurt really bad. Had an ultrasound, mammogram and exam and the discharge tested. they said everything is fine.

in the last 2 years no issues except occaional little boils (one left a grey round scar). I also lost 150lbs during the last 2 1/2 years (not sure if it is relevant but mentioning it). My breast sag alot and are much smaller now. I have been wearing gel inserts in my bra to help make my breast look fuller. Sometimes they covered my nipples and in hindsight realize my breast prob cant "breathe right." Also mentioning this so you know all that I know.

nothing exciting going on except occasaional breast tenderness so bad I thought I was pregnant once, during period or before. I did have a fibroid and had a fibroid embolization around 2 years ago as well (they injhect tiny plastic balls into blood stream that goes to the uterus and blocks bloodflow killing the fibroid)

The night before last as I was headed to bed I realized the right side of my breast was tender. though hmmm but went to sleep. Woke up yesturday morning and something was very wrong. The right breas nipple and areola were super swollen, my whole breast hurt so bad super sensitive to touch, the nipple was burning, pain radiating down, side and up (in the muscle). When i took a breath i felt a stab of pain. The breast felt like it weighed a ton. walking or anything made it hurt. if i dint have a bra on i had to physically hold it so i wasnt in more pain.  as the day went on the upper part of my back onthe right side directly behind my breast started hurting. I knew something was wrong suspected an infection from wearing the gel inserts.

i got in that afternoon and saw a nurse practitioner who was concerned . she said have you always had that dimple. i tell her the story of when it all started etc. she referrs me to a breast surgeon and gets me in this morning. they started me on keflex antibiotics 3 times a day for 5 days.

I googled inerted nipple and you can guess what happened. I am a researcher and wow i got alot of info and i was concerned. I do not have the bruising, orange peel or redness (althoguh my nipple was very red yesturday morning). I do have enlarged hair follicles and little hairs coming out of them. the nipple look oblong versus round and is very different looking than my left breast.

So i am concerned appalled at the lack of education etc and very scared.  especially at the fact that you have to convince people to check you out etc etc

was in pain but not excutiating unless i was not in a bra and the nipple was very sensitive as well as the breast.  This morning i now have a very itcy strip of skin that goes up the underside of my arm and a "pimple" so the doctors say along the path under my arm in the armpit area. super itchy all day (they say it could be razor rash but its not really in that part of my armpit).

I go to the surgean and she is very dismissive and does an ultrsound where she finds a very small cyst she says and its benign and clear but it is on the inner part of my breast nowhere near where it hurts the most. I say i want an mri she say i dont have IBC. I say that is what all these other women were told benign cysts, infection etc etc  i stand my ground and get the MRI. It was the kind you lay in it and your breasts hang down in through holes. with contrast and without. Before i even have the MRI the radiologist is saying he wants me to have a mammogram to to see the changes since my annual mammo i had 6 months ago. so after the mri i got across to get the mammo. OUCH hurt. the tech asks many questions gets a good history. she has me sit in the room and then is gone a long time. she comes back with the radiologist. he looks talks to me and says he saw something on the mri behind the nipple but that it could be infection. he wanted a mammo of the left breast to compare with the right since i had lost so much weight wants to rule out the area of skin thickening he noted on the new mammo as being weight loss difference and also wanted nipple profile mammos on both nipples.  she does it and has me sit again. then the radiologist comes back. says now with the left mammo he doesnt see a difference except the area behind my nipple and an area of density on the hurting breast. he says biopsy could be a good thing maybe an MRI guided biopsy but that was up to the sergean. he now wants an ultrasound. so off i go to ultrasound. the tech seems very perplexed by the ultrasound. (ouch again.. they are concentrating on the nipple area and it hurts) she says she doesnt see what she expected to see in infection and doesnt know what to lable it she says she doesnt see anything and she cant understand why i am in so much pain. she is very curious says this case is very strange and wants me to follow up and let her know what happens.

anyway she bring the radiologist in and he also does an ultrasound and is saying it looks good no tumors etc but that he will talk to the sergean and we can decide what to do. he says he thinks it is infection but that it could be "something we dont want to talk about" he seems conflicted. super nice though. i trust him. so he goes to call the sergean and comes back saying she also thinks it is infection and to follow up with her next week and we will go from there. the radiologist also wants me back and is talking about wishing i had been referred directly to him (this is all so confusing.. i am getting mixed messages from him)

so my dilema...i have read in several posts that they had IBC and that initially they responded to antibiotics and that no matter what a biopsy is important.  This evening my big thing is that as i breathe it really hurts and i feel a bit of crackling in my chest. My glands in my throat are swollen ( but strep throat is going around right now and i have noticed pus and i think it is strep).

So now what? sorry it was so long wanted to give all the fact i could. Please ask questions. Do i push for the biopsy sooner? do i get with another breast surgean altogether and make them give me one. I dont care for the surgean she looked at me as i was insistingon an mri and said YOu dont have IBC.. i looked at her like you wanna put that in writing and then she started yeilding.. do i get with the radiologist and ask for more clarification and or a copy of the report. Do i drive myself insane with worry? This whole day has been a rollercoaster and at the end of it all i just have mixed messages and dont know what path to take to 1) know i have been proactive with my health and made as sure as i can that i dont have IBC. 2) know what i should be concerned about if i do get a biopsy and it is negative. This disease is soo darn cunning and no case is the same.. it is all so scary and overwhelming. the radiologist and suergean said the inverted nipple thing has been going on  along time. surly i would have developed IBC earlier if that is what i have.. which the surgean is CERTAIN i dont have and the Radiologist is telling me to not touch the nipple much but to touch it here and there to see if its changing and also the right side of my breast... mixed messages..

help..... and thank you. No matter how this turns out I am now going to make it my mission to spread the word about IBC. 

ps as i ws posting this to the IBC forum i remembered that the radiologist said during the ultrasound there was some density or something in some of the milk ducts but it could be infection.

ibcmets

Nina,

I would push for a biopsy.  That is really the only way they can test the tissue and confirm IBC.  I believe I was lucky that I also had an IDC 3.5cm tumor along with my ibc so I got tested immediately, although I was already at stage IV.  I had no pain however, just a warmer breast, itching, a red rash that looked like a bug bite and swelling in the infected breast.  Best of Luck in determining what this is.

Terri