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I didn't know where else to go

harveybirdmaam Member Posts: 2
edited February 18 in Benign Breast Conditions

Hi, I am not diagnosed with IBC but i didn't know where else to go with my experience. If you read all the way through my post you will understand why I don't have anywhere else to go. Anyways I am a 28 year old mother of 2 (7 and 10). In mid december of 2023 I noticed a hard nickle sized lump on my right breast around the 2 o'clock area. The lump seemed to become tender during my period and I read that could be a good sign it is not cancer so I waited until the holidays were over and made an appointment with my obgyn. My first appointment was January 17th. I went in and she agreed it was probably nothing too concerning but sent me to have an ultrasound. The lump ended up being a bi rads4 and I ended up needing a biopsy. I went in for my biopsy on January 29th. The biopsy went well and I went home. I had normal swelling of my breast for a few days and then the swelling went down on the 4th day. I woke up on the 5th day with what seemed like worse swelling but assumed maybe it was just fluctuations in the healing process. At 10 days post biopsy my doctor called with my results which were negative for malignancy and infections. I couldn't really get any answers of what the lump was. I I formed my doctor that the swelling seemed to he getting worse and my breast was now hot to the touch. They informed me to call back if it got red or the biopsy incision started oozing. 2 days later my breast did turn bright red and the lump seemed to be much larger than a nickel. I called and they got me an appointment with an NP. I went in that day and they gave me antibiotics and did note that the 4cm × 4cm lump had doubled in size. (also the lump had grown slowly from the day I noticed it to my first appointment so it was a biggie than a nickel by my appoitment) the NP gave me antibiotics and told me to call if I got a fever or nausea and vomiting. I took the antibiotics and the redness and swelling seemed to be getting better for first few days but around day 4 on the antibiotics the redness and swelling returned. 1 week after starting the antibiotics I went back to my obgyn who noted the lump had now tripled I'm size and was still very red and hot to the touch. She was worried about an abscess so she called the breast surgeon personally and got me in to see her the next day. I went to the breast surgeon, she looked at my breast, did an ultrasound and told me that the lump was neither cancer or an infection but that I had a rare autoimmune disease called glandular mastitis which mimics IBC and classic mastitis but is actually just extream inflimation caused by my own immune system attacking my breast. The chances of me having this disease is 0.37% while breast cancer is roughly 12%. The only method of treatment is steroids and immunosuppressive medications. There have only been a few hundred cases of this thing world wide and I just don't know how to feel. A part of me is glad it isn't IBC but a part of me can't believe the odds. The breast oncologist said she wanted to take a few days to look over my imaging and biopsy results to be absolutely sure since it is something they don't see everyday and to come back on tuesday. In the mean time my breast swells bigger and bigger every day and I'm kind of at my wits end. This whole thing feels like it is taking months but really this all happend in a span of 6 short weeks from the day I noticed it to the day I got the unofficial diagnosis. I'm still worried she was wrong and I have IBC because really what are the chances? I was told the chances of having IBC are almost nonexistsnt but then they dump this almost nonexistant disease on me. I really don't know what to do or where to put my frustration because it's so rare there are zero support groups or people in my community to talk to about it.


  • shrinkrap59
    shrinkrap59 Member Posts: 30

    I am new here, but I can't see any harm on n venting! I can't help with your current dilemma, but I have had a few uncommon autoimmune-ish issues, and perhaps understand a little of your frustration.

    I hope you get some relief soon

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,737

    Since you are focusing on the odds, even if they are tiny, someone will be affected . After my port was installed, I developed a complete pneumothorax due to my lung being nicked so it was like a slow leak. The odds of this happening? Less than 1% but it did indeed happen to me.
    Have you sought a second opinion? Whatever it may be, clearly needs to be resolved. Take care

  • needs.a.nap
    needs.a.nap Member Posts: 162

    Hello @harveybirdmaam. We do understand breast distress, confusion and worry!! This is a good place for you to come and share … thank you for sharing your unusual experience!

    I’m so sorry for all the distress and discomfort you’ve been going through. Having anything rare is no picnic!! There is a forum called - a social hub for rare medical disorders - that may be a place to find others? I did a quick search and didn’t find anything on the subject but if you are willing to start a discussion, others may find you.

    Your diagnosis is relatively new and it takes time to process and believe it. Hopefully you start noticing relief with taking the steroids. What really are the odds!?! I can see why you might feel skeptical. As @exbrnxgrl suggested, getting another opinion may help you feel confident in the diagnosis and treatment.

    Best wishes for quick healing!!

  • harveybirdmaam
    harveybirdmaam Member Posts: 2

    Thank you all for your kind words or support! I am looking into a second opinion depending on what the breast oncologist tells me on tuesday and if she found what she was looking for in my imaging and biopsy reports. She is looking for a specific type of cell called giant cells I believe is what they are but don't hold me to that. It was a little overwhelming to take In all the information at the time so I could have gotten some things confused. I did some deep diving last night and I did find a Facebook group for it and asked to join and am hoping to get more insight from that. There were quite a few members so even if it's rare it does make me feel better knowing there are others going through this hectic process as well. I did notice that a lot of those women had to wait months to years to get answers so I am feeling blessed to at least have possibly gotten my diagnosis in such a short time and looking forward to getting this under control pretty quickly if it is indeed what they believed.