Very Concerned possible IBC symptoms?

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75BabyBear
75BabyBear Member Posts: 5

Current area beneth breast

First red are that appeared in Feb 2013

(I originally posted this in another topic. I think I posted in incorrectly in the wrong place. Sorry)

Hello,

I found this board while searching for information on IBC primarily early stages. I am trying to find a Dr. to make an appointment. I am waiting for a call back from one clinic. In the mean time you all seem so knowledgeable and kind so any thoughts or suggestions would be appreciated. My story starts in February of this year. I noticed some minor breast changes. I all of a sudden had this off red mark on my left breast that looked kind of like an irritated bug bite (I am going to try to attach a picture of this mark I had at first). It didn't itch and didn't have a bump like a bug bite. I regularly do self breast exams and know it had not been there a few days before. I also started noticing a slight pain along the lower side of my breast up into my armpit. Not terrible although if I did a lot like vacuuming with that side it would get slightly more uncomfortable. I had recently lost about 60lbs and my breast had gone down a size and had a lost of loose skin. But The left one just seemed a lot weirder looking then the right. Another odd thing I noticed if I was wearing a bra rather than when they are hanging free so the skin is pulled tight when your not wearing a bra. If I poked or pinched my left breast that was having the odd symptoms while wearing a bra it was kind of like clay and it would stay that way and not spring back for longer than normal. The skin would stay pinched or poked in.

current odd flattened skin area

  If I did the same to my normal breast it right away start to go back to normal. So I made an appointment with a breast clinic. I thought with a well respected Dr. But I saw a very young nurse practitioner. She said I pulled a muscle and had an abscess that I just never noticed that has healed and she didn't see anything else to be worried about. She said they always order mammograms and targeted ultrasound for all patients as a precaution but there was not hurry and I could go when ever because she didn't think I needed them. But she said it wouldn't hurt to get one as a baseline since I would be 40 in a couple years anyhow. I was 37 at the time of this appointment. I turned 38 in September. She said I could take a couple months if you want. She was really kind of talking down to me and treating me like I was a hypochondriac that saw something online and freaked out and wasted her time! I had originally planned to go have the tests done. But then the day of my appointment I had to cancel because of an urgent issue regarding my son. I then decided I didn't want to deal with this Nurse Practitioner again anyhow and since she would be the one reading any results I wasn't going to reschedule the tests. I decided the best thing to do would be to wait and see if I had any other symptoms come up. I figured if it was IBC from what I read it would be only a matter of weeks and I hadn't noticed any new symptoms. So I started to believe this Nurse Practitioner that it was nothing. I thought maybe hormonal breast changes or Maybe some odd symptom of my Fibromyalgia or RA which I have had for years.

So weeks turned into months and although I continued to have all the symptoms that started in February but they did not seem to change. They bothered my husband and mother who kept wanting me to go back in. But I did not want to go and be humiliated again. I had decided I would just wait until I noticed any changes. I really believed by this time if it were something like IBC I would have seen more changes by now. Then a couple of weeks ago it seemed like the pain seemed a little more consistent and slightly more uncomfortable especially if I slept on it. My husband really started pushing me to make an appointment. Which I kept saying I would but I continued to put off. Then a few days ago because my breast seemed slight tender all over more than usual I wondered if I was maybe getting more milk in than usual my youngest is 14 but I never stopped lactating for some reason. (I have had mastitis before and I know this is not it, I have also been on several courses of antibiotics for different issues since this started in February that were they type that would have treated mastitis. So if that were the case it would have been cleared up by now.) anyhow usually I only get small amounts and it is a clear to white discharge. But I was get a small amount of a brown liquidy type discharge but only a small amount.  Then last night as I was getting dressed for bed in my bathroom, after a long and stressful day. (I had two teeth abscess badly overnight Sunday night on opposite sides of my mouth these had both already been treated with antibiotics and had cleared up and I was working on getting in have the teeth taken out because they can't be saved by root canal they are too brittle. Anyhow it was kind of odd how quickly this infection came on and two different places at once. So I was at the ER for several hours last night getting antibiotics.) So I was getting changed in the bathroom to not disrupt my sleeping hubby and I noticed like the left breast that I had been having problems with had this raised area along the cleavage side of my breast that looked more white and swollen. So I took a closer look and lifted up my breast and noticed these rashy red streaks and the skin underneath looks all welted. This morning I have also noticed that although it doesn't seem like my nipple has changed much the left side of my nipple the areola is denting in a bit and my nipple is leaning more to the left. It is only a slight change but I am certain it wasn't like that before! I am going to post pictures as well, minus the nipple. I know my breast did not look like that the other day. I pay very close attention to my body and ever since February I have been watching it carefully and doing self breast exams very regularly! Seeing this new changes is very scary since they do seem to look very much like the few pictures and diagrams that I was able to find of the early stages of IBC. When this started in February as others have mentioned I could only find pictures from after diagnosis when they were very swollen and further along in the process. Thank you to anyone in advance for taking the time to read this and for any thoughts and or suggestions. I wouldn't mind anyone telling me this does not look or sound like IBC! I in fact hope to hear you guys don't think this fits and that I am just convincing my self that this is what I have going on! Because I am really scared!

The top left and lower left are current taken last night of the new changes. The top right picture is the only one I can find from when it began in Feb of the first red spot that developed. I know I took others of the weird way the skin could stay poked in but couldn't find any!

Comments

  • 75BabyBear
    75BabyBear Member Posts: 5
    edited December 2013

    Thanks for your helpful input! I should add because I guess I didn't make it very clear in my rambling post. The breast issues started long before the infection in my mouth. The infection came on just a couple days ago. I had new breast issues that I found after the visit to the ER for the infection. But the big bite looking area and breast pain along with changes to the skin started several months ago although they were not as severe. Then a few weeks ago the tenderness began to spread and become more noticeable. Than it was two nights ago after the ER visit I noticed that I had more red rashy type area beyond the initial bug bite sized one I already had, and welted looking skin that I hadn't had before. It is hard to tell if my breast is more warm because I have been feverish with the infection from my mouth.

     I had called around trying to find a Dr. yesterday to take a look at things including me regular Dr. My Dr.'s nurse called me back and she asked me to come into walk in last night rather than to wait for an appointment. So I went in and saw a regular Dr. last night. She said I did have obvious changes the left breast with skin/tissue thickening and that the elasticity seems to less than it should be. She also found a lump/mass that concerned her. Those visible issues along with the tenderness in the breast and armpit and the brown nipple discharge she felt I should get in to the first available mammogram and ultrasound appointment and added on the order to also do MRI and/or Biopsy if indicated. She said it wasn't quite what you might see with IBC in her opinion, she said she didn't think my breast was swollen enough or showing the orange peel look that is typical. But she thought there was still some obvious concerns that should be looked into.

    My appointment is on the 27th which was the next available they had at the women's pavilion where the Dr. sent me. But they told me I should call later in the week to see if there are any cancelations so I can come in sooner.

    Thanks again for taking the time to read my long post above. Everyone on here from the message I have read seems so nice and caring!

  • ziggypop
    ziggypop Member Posts: 1,071
    edited December 2013

    I am really glad that they are getting you in for imaging and biopsy if necessary. IBC is hard to diagnose - not that this is what that it, but you really need it to be ruled out. 

  • Kicks
    Kicks Member Posts: 4,131
    edited December 2013

    You definately do need to be THROUGHLY checked out probably by several different Drs.  You have a lot going on that can all be interacting.  Fibro can cause all sort of problems so can RA.  Have you told your Fibro Dr or RA Dr yet about the  breast or dental issues?   Dental infections can cause all sort of problems in other areas.  Was it cultured?  Not all  meds work on ALL infections.

    Something is going on with you - don't wait another 10 months for answers!

  • 75BabyBear
    75BabyBear Member Posts: 5
    edited December 2013

    Thanks for the all the thoughts and suggestions. No they didn't culture my infection. But unfortunately they can only give me a few antibiotics. I am highly allergic to Penicillin which includes amoxicillin, all sulfa based antibiotics, and all cephalosporin antibiotics such as cephalexin. So we are stuck with only a few I can be treated with. :-( I do keep my rheumatologist up to date with all my medical issues and ask his input on Dr.'s he may suggest for different issues. Although I did put off talking to him about the breast issues when they first started because I had convinced my self not to worry about them or think about it unless I noticed any more changes. He is considered one of the top rated Dr.'s in the country, has several medical degrees, as well has actually helped write several of the Rheumatology text books used by the medical schools. I am very fortunate to have him as my Dr. So I often ask him about any other health problems because he is so knowledgeable and I completely trust his knowledge. I left a message with his office yesterday giving them a brief run down of my problems and to ask him if there is anyone he would recommend I see. I don't know if he will have a chance to get back to me before he goes on vacation for the holidays, but I see him for my regular appointment the first week in January.  I also got the information for the dental clinic at our local University, they are really good there. I am going to see if I can go in and have them take a look at the problems I am having with the infected teeth to see if they can help get it resolved!  

  • bride
    bride Member Posts: 382
    edited December 2013

    Hello,

    You are doing the right thing in getting your breast thoroughly checked. Even after I had a confirmed diagnosis of ICB, I was given a cardiac echogram (well this was also because one of my meds can cause heart issues) and a PET CT. You might also want a blood work up. As scary as all the various diseases may be, if it is IBC, please make sure that you see someone familiar with it. I drive over 150 each time I see my docs or whatever, but I promise you that it does make a huge difference. 

    Please let us know and I hope all your news is good.

  • 75BabyBear
    75BabyBear Member Posts: 5
    edited December 2013

    Thanks for the additional impute! I have actually had a recent heart work up. Echogram etc. a few months back. All that came back fine, my heart was working great! As well as full blood work up. The last couple of blood tests I have had, have shown a slightly high white blood cell count. (I didn't have any infections in my mouth at the time, or any where else that I knew or my Dr.'s knew of.) My Dr. doesn't seem to be to worried about WBC count though. Everything else on the blood tests was all normal at that time. I actually saw two Dr's about my infections and neither found any signs that my infections have entered my blood stream or into my bones. The antibiotics are working and my infections are nearly gone. So only have breast symptoms left. Have my mammogram and ultrasound Friday. I am not sure if they decide to do MRI or biopsy if it will be the same day or another day. Will post once I know more. Thanks again for everyone's kind thoughts and impute! Merry Christmas to All! Or Happy whatever you celebrate! ;-)

  • bethelles_now
    bethelles_now Member Posts: 1
    edited June 2014

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