What should my next step be?

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worried_mel
worried_mel Member Posts: 7


Hello Everyone. Thank you for reading this and let me start from the beginning. 4 weeks ago I was diagnosed with a severe mastitis infection ( I wasn't surprised, I am a nursing mother and understand this happens). I had a fever, pain, redness and streaking across the breast. My obgyn gave me 10 days of antibiotics and sent me on my way. The antibiotics worked quickly for the redness and fever...but the pain is still lingering and just getting worse! Its not a focal point anymore but my entire breat is just throbbing and stinging. On Friday I made a visit to my PCP and she ordered a mammogram and ultrasound. So today I went to get the tests done and I was turned away by the radiologist to get to mammogram because I am nursing...and he said nothing will show up on a nursing 29 year olds breasts. So I got the ultrasound and it was the tech that pointed out the darkening of skin on the breast in question. I have noticed the darkening, it appeared a year ago and Its on both breasts but much worse on the breast in pain. I attributed it to hormones from pregnancy or hyperpigmentation from living in sunny south florida. Its not terrible, just a little blotchy, I also have it a bit on my upper lip. So she pointed that out and said it doesn't look great and now im terrified! My ultrasound came back fine and my PCP referred me to see a breast specialist in 3 days. So really this is where my question begins, what do I ask the surgeon to do? Without a rash or redness, can she do a biopsy? Do I ask for a punch biopsy on the blotchy skin? MRI? I understand that if Im facing IBC I must move quickly, so I want to go into her office with confidence and knowledge. I really want to get out of this pain, but I feel as though no one is taking me seriously up to this point. So when I meet with the surgeon on Thursday, what should I be hoping to accomplish? Does any of this even sound like IBC? I feel so lost. Thanks!

Comments

  • WinningSoFar
    WinningSoFar Member Posts: 951
    edited March 2015

    I really don't think what you're describing sounds like IBC. It's much more likely something entirely. That said, I'd still pursue a diagnosis. Infections can be very unpleasant.

  • Moderators
    Moderators Member Posts: 25,912
    edited March 2015

    Hi Worried-

    First, we want to welcome you to our community here at BCO. We hope you find it to be a supportive, informative place!

    IBC is very rare, making up only between 1-5% of all breast cancers. Given your age, and how rare it is, it's unlikely that what you're describing is IBC. Also, IBC is incredibly aggressive and symptoms show up and advance very quickly, so if the darkening was noticeable as far back as a year and hasn't gotten worse, it's not an indicator of IBC. That being said, there does appear to be something going on, a particularly stubborn infection maybe, and any changes to your breast health (or health in general) need to be taken very seriously. We're so glad you've already discussed this with your OBGYN, and it's good that you're seeing a breast specialist. Using the ultrasound results and after the exam, the breast specialist should be able to determine what your next course of action should be.

    Please keep us posted on how your appointment goes, we'll be thinking of you!

  • Kicks
    Kicks Member Posts: 4,131
    edited March 2015

    No one can tell you want is going on - we are medical personnel! There are MANY possibilities as to what is going on and only your Dr(s) can figure it out.

    With that said - what you are saying you are experiencing is not how my IBC presented. I never had any redness/rash, though some do. I never a 'punch biopsy - my biopsies were FNB of the enlarged node under arm and a couple of areas the Radiologist said were 'suspicious' on the US.

    I

  • Sue-T
    Sue-T Member Posts: 16
    edited March 2015

    I first noticed my IBC as my nipple turned a bit "green" and was the texture of an orange. My right breast was bigger, heavier and warmer than the other breast, and behind the nipple it was a bit of a "gooey" play dough type texture where on my left it was not. It is likely you don't have IBC, and if the ultrasound found nothing I guess you could ask for biopsy of your skin to be put at ease.

  • worried_mel
    worried_mel Member Posts: 7
    edited March 2015

    Thank you everyone for the responses. I understand no one can tell me whats going on, just looking for guidance. The blotchiness has gotten worse over the course of a year, but its still not terrible. My obgyn never mentioned it on a breast exam. I never even associated it to IBC when I was doing my reading. I hear "darkening of skin" as a symptom and I assumed that meant a bruised type look. But this silly US tech has really put me on edge now. The pain was so terrible that I visited to the ER (stupidly) and was given a naproxen tablet and asked to leave. Im just hoping that I don't get to the surgeons office and she turn me away as well. I will keep you updated <3<3

  • worried_mel
    worried_mel Member Posts: 7
    edited March 2015

    imageand here is the discoloration which i am really freaking out about now. the other breast is not nearly this bad.

  • worried_mel
    worried_mel Member Posts: 7
    edited March 2015

    Following up:

    My appointment with the surgeon was moved to next Tuesday. SO with my anxiety being so high I decided to go to the dermatologist today to atleast get the skin darkening checked out. She said "yeah, that's kind of bad of the right side" and prescribed a steroid cream. So I guess I will give that a try. The pain in my breast is excruciating most days, feels like a hot needle through my breast. This appointment cant some soon enough, Im terrified.

     

  • Meadow
    Meadow Member Posts: 2,007
    edited March 2015

    worried.....just relax. You will get answers. Even if you hear bad news, that you have cancer, it is not a death sentence. We all here on BCO are proof of that! You have a small little bundle of love who needs you now, not in a pile of worry and anxiety. Take a deep breath. Being a mom is the best distraction I can think of to the worry and waiting. The waiting is by far the hardest part. As our Mods have said, IBC is very rare, so chances are in your favor that the pain you are describing is related to breastfeeding or something else. My boob was painful but not severely so as you are describing. I think you are working yourself up in fear....and that wont help one bit. Please let us know what you find out, in the meantime relax and enjoy your family. Thats always good medicine.

  • worried_mel
    worried_mel Member Posts: 7
    edited March 2015


    Thanks meadow! May I ask, how would you charectorize the pain you were in?

  • Meadow
    Meadow Member Posts: 2,007
    edited March 2015

    The pain did not prompt me to go to the doctor. I just didnt think it was bad, but looking back I know now I should have been checked. I first noticed an itchy breast, super itchy it would wake me up at night. It started being painful when I was mowing the yard on the riding lawnmower....the jiggle was painful enough that I would hold onto it when I went over bumpy parts of my yard. Then I noticed that when I was holding my 4 year old granddaughter on my lap and she would elbow me moving around, that too was painful, like mastitis. I started having a full breast feeling all the time, like when I was breasting (20 years ago) and was engorged with milk. But I thought it was hormonal changes, as I am in my mid fifties. I started having skin changes around my nipple, the classic peau de orange skin, and my nipple slightly started to withdraw inward. I never had a lump...we are taught to feel for that lump. I had never heard of IBC, and I did not know that cancer could present in sheets like cotton candy, and so I waited thru the painful time, but went in immediately,when the skin changes started. So it wasnt painful enough to make me think it was anything serious, like I said, I assumed it was hormonal.

    IBC is a rapidly advancing cancer, and if you have been watching symptoms for a year I would be extremely shocked to learn it is IBC. A 2 month window is the norm for diagnosing IBC, if you are diagnosed outside that window then you are outside the norm....it mimics other things but the changes are so fast and aggressive that you KNOW something is happening. as I did when I went from this painful boob to the skin changes, literally overnight. Someone who had IBC for over a year and was untreated, well, would be in very advanced stages, not still wondering whats happening as you are now. But something is obviously going on with your breast, and of course you need to find out what it is. Hoping it is related to the mastitis.

    I am hopeful you get the answers you need this week! Please let us know!

  • JJMAMA
    JJMAMA Member Posts: 81
    edited March 2015

    I have not been diagnosed yet, but I too am a nursing mother who is concerned she has IBC.  I am having awful stinging and burning on my left side and my nipple is painfully sore.  This is a scary and unexpected place to be, for sure.

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