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MommyB
MommyB Member Posts: 10
edited August 2018 in Not Diagnosed But Worried

Hello all! I’m new and just looking for some possible causes of my symptoms other than BC. A little background on me, I’m a 31yo mother of 3 currently nursing my 6mo. Uneventful nursing up until the beginning of this month. I started on the 3rd with what I assumed to be a plugged duct. I did the usual home treatments for a week with no relief of pain, nipple swelling and some engorgement. After a week I contacted the np at my ob office fearing I’d developed or was on the way to Developing mastitis. When I went on 8/9 she said oh yeah definitely mastitis despite my lack of fever and general unwell/flu like symptoms that typically accompany mastitis. Wrote me for 10 days of keflex 500mg twice a day (pcn allergy)and wanted me back in a week. 8/17 I'm still swollen painful and now have peau d' orange on my left breast with palpable skin thickness. The ob looks at it and says he wants to send me for an ultrasound to rule out abscess and they would refer me out to the surgical oncology group in town to be seen sometime the following week. I'm an RN and have access to physicians and after speaking with a few and showing pictures I was told after working this past weekend I needed to be seen ASAP. I called Monday morning to see if my referral had been sent and if I could get in for an U/S that day. I was promptly told no and they would have to review my referral and contact me with an appointment. Well that didn't sit right with me and long story short after a few phone calls I was able to get in for an ultrasound yesterday. No abscess or masses were noted however the radiologist noted thickening of the skin on the ultrasound and the orange peel appearance of my breast and recommended a punch biopsy which I will be having tomorrow.

Obviously I'm desperately trying not to fall down the google rabbit hole and understand why my patients and family members fear the worst especially in the ICU setting. At this point I've been trying to find any possible explanation for this, from a dermatological/ trauma from massage or even infectioninflammatory process that could cause these symptoms. Anyone have a similar presentation or experience? I'm still notably swollen tender itchy slightly red and orange peel skin. This has all escalated in a matter of weeks. Thank you if you managed to read all this!

Comments

  • moth
    moth Member Posts: 4,800
    edited August 2018

    MommyB - I'm glad you pushed and got in quickly & you'll get your punch biopsy tomorrow.

    I don't know what to tell you that you don't already know...

    Hang in there. I hope they put a rush on your biopsy results so you'll know results by end of the week.

    & stop googling - I know, easier said than done, but really, it won't help. It either isn't, and it's a weird dermatological or infectious thing which someone will need to figure out, or it is, which you'll handle too. Don't borrow trouble from tomorrow. Enjoy your baby, maybe organize a park day or something to get your other littles out for some fun and keep busy while you wait.

    best wishes ~

  • MommyB
    MommyB Member Posts: 10
    edited August 2018

    moth, that’s exactly what my momma said! Whatever it is we will handle it! Me and the baby have had lots of snuggles today while my big kids are at school. Punch biopsy is tomorrow at 9:15, the nurse said I’ll have my results by Friday. Sometimes too much knowledge is a bad thing. Thank you for the repl

  • MiaMay
    MiaMay Member Posts: 52
    edited August 2018
    Hi! Hoping your results are benign. I cannot imagine how scary this all is. Having my own BC scare has been difficult to manage. I have a little one too and that has made this journey very emotional.

    I truly do hope all is alright for you.
  • MommyB
    MommyB Member Posts: 10
    edited August 2018

    Thank you MiaMay, I went today to see the oncologist and still have no piece of mind. He examined me and looked at the ultrasound and told me " I don't think it's anything bad but quit breastfeeding and come back in 6 weeks for a mammogram . Even if it is bad waiting 6 weeks isn't a big deal. I don't think we need to punch holes in you but if it gets worse don't hesitate to come back". Looking back I should have pushed for the biopsy, if it's not bad I don't see why I should have to wean my baby or have a mammogram. He didn't offer a single other possible explanation

  • moth
    moth Member Posts: 4,800
    edited August 2018

    Mommy, as an IBCLC, my head is exploding. Telling women to wean prematurely as if it's no big deal, or waiting for 6 weeks for a diagnosis as if that isn't a big deal just ...UGH.

    I don't know what to say. I think I'd want to go back, do the punch biopsy now. I think maybe quit breastfeeding just on that side only (though honestly I can't find much in the literature about whether this is necessary) but keep up the supply on that side by pumping. Freeze the milk and you can use it if you get a benign result on the biopsy.

    Are your symptoms the same? No changes?


  • MommyB
    MommyB Member Posts: 10
    edited August 2018

    yes ma’am they are. My goal was to make it 6mo which is tomorrow but he’s a boobie baby and I feel like if he doesn’t think it’s anything bad why should I have to wean? Does it affect the mammogram? Lately he’s not been wanting to nurse as much on that side because im swollen. I pump and nurse. He does get some formula too. I just wish I had a clue as to what besides mastitis could cause these symptoms in a nursing mom?

  • moth
    moth Member Posts: 4,800
    edited August 2018

    Yay you for hitting the 6 months mark & as an RN and new mom I'm sure you know the AAP's recommendation is 1 year or longer, and the WHO says 2 years & beyond... so if you're open to it, I hope you can keep going until there's a good reason to stop.

    Mammograms and ultrasounds can be performed on a lactating breast though you need an experienced radiologist to read the images. This is from La Leche League but written by an MD. https://www.lllusa.org/mammography-and-sonography-...

    Honestly, I can't think of many differentials, esp if it's unilateral. LCs are trained to consider ibc if mastitis symptoms don't resolve or if there's skin changes. Bilateral you could consider allergy, connective tissue diseases but nothing I think of matches those symptoms.
    If you don't want to see the breast doc again or don't think it would be worthwhile, I'd consider consulting with a dermatologist and seeing if they'd order a stat punch biopsy of the skin. Mastitis should respond to abx and not present with peau d'orange.

    Do you have contact with an IBCLC in your area? I'm just wondering if you might be able to get referrals to physicians etc who are more experienced in dealing with a lactating breast and who won't just recommend weaning. Usually the LCs know who in town is good for this. Whether this is infection or not, it needs to be dealt with. A painful swollen breast needs treatment and since the first abx did nothing, you still have a breast that requires treatment.

    Actually - - since the radiologist who did the u/s recommended the punch biopsy, can you not have it on their order? It was my radiologists who ordered both my biopsies....

    keep us posted. I'm really interested and hoping for a good solution for you.


  • MommyB
    MommyB Member Posts: 10
    edited August 2018

    Moth, thank you so much for the link! Yeah at this point I'm wondering if should just say no I want the biopsy. My primary care doc is a bulldog and she got me in quickly after I got the run around! The dermatology route might be possible. We also have a few IBLCs at the hospital I work at and could ask them what they think. I feel like I really should have advocated for myself better! Had it been a patient of mine I would have probably pushed for the biopsy for them! I'm getting a little push back about not weaning from my hubby since the doc recommended it but I think it's just him being worried. I'm wondering if maybe I caught an abscess forming early but there's not enough redness for me to think that. I'm really tempted to try some clindamycin I have at home but then I worry about thrush! I'm gonna keep a close eye on it and if it's not improving I'm going to go back. As for the radiologist I'm not sure, it's a Breast care center run by my hospital but I'd still have to have the oncologist to get the path report. My mom is also an RN and had a class this morning. I told her to go and now she's mad she did instead of coming with me. She would have insisted on the biopsy. The good news is something like 70-80% of biopsies are negative so I've read anyway. I was diagnosed with idiopathic intracranial hypertension while I was pregnant which is pretty rare so I'm hoping my rare disease quota has been filled! Lol

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