Welcome to our new forum! All existing NW Cryobank forum users will need to reset their passwords. Click forgot password and enter your email address to receive the link. Email us at [email protected] with any questions.

non-puerperal Mastitis -Updated

sara291sara291 Posts: 1,042
edited May 2017 in Pregnancy and Babies
I rarely post here anymore. My doctors think I have non-puerperal Mastitis. I'm not nursing (weaned my daughter a year ago at 2) so it non-puerperal. I've never had mastitis before and am still not certain. My right breast has been sore for 2 weeks. Now it's extremely painful and I'm taking ibprofien. Even walking hurts it. It's been feeling more solid over the last week or so as well. I saw my OB this morning who thought I had a large cyst. Sent me to ultrasound right away. They did it, then the radiologist or whoever reads them I think came in and did a second then talked to some breast specialist. He thinks it not likely breast cancer and likely Mastitis. I never got a call back from my doctor on her views. He said to return in 6-weeks for a ultrasound and to go back to the doctors when it's red, hot or leaking. I asked what about how much it already hurts and he said ice packs and such and ibprofien. So basically I just wait for it to become even worse. Is this normal? I never had Mastitis. Does it really slowly come on over weeks? My ultrasound did show thickening I guess which is the large more solidness I feel.
«1

Comments

  • tinydancertinydancer Posts: 1,210
    edited November -1
    sounds like an abscess from milk sitting in there. I have had mastitis many times due to over production of milk. ofcourse thats totally different. they should check your prolactin and see if there is any issue there. but likely if its a mass or a cyst or abscess, its best to drain it via milking or pumping or needle.
    perhaps you could try sage herbs or cabbage leaf to see if that would help too.
  • old mamaold mama Posts: 4,682
    edited November -1
    Ouch...my friend got Mastitis when nursing and she was screaming in pain. I hope it resolves soon.
  • sara291sara291 Posts: 1,042
    edited May 2017
    I'm not nursing and haven't for over a year now so they said it can't be related to that. It's not a mass or a cyst according to the ultrasound. Ultrasound did show thicken tissue though.
  • sara291sara291 Posts: 1,042
    edited November -1
    Developed redness over night. It's so extremely painful I had to take one of my pain pills from when I fractured my knee just to sleep. Apparently they usually won't treat Matitis anymore with antibiotics and wait for it to clear up on it own. I'm just confused since I assumed Matitis comes on quickly and it has hurt for 2 weeks now and slowly getting worse. Now a good size spot feels pretty solid underneath and it's red in that stop. I was told by ultrasound sound but that my doctor would
    Call me in a hour. I never heard from
    Her. I called back this morning and asked if I could be seen again but so far no one has called me back. I usually love this place. With non nursing women who have Matitis I've heard it's good to try and treat with antibiotics quickly since there is inflammatory breast cancer that mimics Matitis and is extremely aggressive so ruling it out quickly is important. This is so frustrating
  • tinydancertinydancer Posts: 1,210
    edited November -1
    yeah to me that sounds really bad. although unlikely its cancer, still sounds like something needs to be drained or fixed to stop the pain. red usually means swelling or infection. I would just go into ER
  • sara291sara291 Posts: 1,042
    edited November -1
    Was able to get in to see the same doctor again. She was very surprised at the change in 24-hours and brought in two other doctors. I'm on antibiotics. They said it may get a little worse in the first 24 hours but that if it's worse at all over 48 hours on antibiotics I need to go to the ER and see a breast surgeon. They said there is a chance this is inflammatory breast cancer and we'll know a lot more with how I respond to antibiotics. Lovely.
  • RedHeatherRedHeather Posts: 598
    edited November -1
    I hope it turns out to just be a random infection that responds well to antibiotics! It seems crazy to me that they were so hesitant to try antibiotics in the first place.
  • StephnHeidsStephnHeids Posts: 407
    edited November -1
    Prayers that it's just a nasty infection! Sending healing thoughts your way ❤
  • katookatoo Posts: 324
    edited November -1
    Sending prayers that the antibiotics clear it up.
  • sara291sara291 Posts: 1,042
    edited November -1
    RedHeather wrote:
    I hope it turns out to just be a random infection that responds well to antibiotics! It seems crazy to me that they were so hesitant to try antibiotics in the first place.


    I had not heard back from the actual
    doctor until I saw her yesterday afternoon. They were surprised at the amount of chance in those 24-hours. They had me do a ultrasound after the first visit and then I got back in yesterday afternoon thankfully.
  • sara291sara291 Posts: 1,042
    edited May 2017
    There still isn't any improvement but it hasn't even been 24-hours. They had me take two dosages last might do as soon as I got it (5:30pm) and before bed around 10:00. I took one again this morning. They said it can possibly get worse sometimes in the first 24-hours and then by 48 be looking better . . Is this the same experience anyone else has had with Matitis? So at 48 hours if it's the same or worse then I go to ER and tell them Ibprofien are not helping and to see the breast surgeon. My chart has all the notes for them in case. I'm certain it's an infection but it sure would be nice if time past faster!
  • TheOtherLovingMomsTheOtherLovingMoms Posts: 1,481 ✭✭
    edited November -1
    I had my daughter at er this past Monday for this same thing. Her youngest is 20 months old and she never breast fed. They thought at first that is was an abscess due to nasty stuff coming out her nipple. They did an ultrasound and there was no abscess. Usually with an abscess in that area they have a surgeon take care of it because of the area. My daughter had an abscess the size of a softball on that same breast 15 years ago. Anyhow this time they diagnosed her with mastitis and gave her antibiotics and pain meds. Told her to see her doc in 3 days. She went to her doc Friday. There is still some stuff coming out. She is still in pain but it is very slowly getting better.
    IGXwm4.png
    I just turned 50 and fabulous!!! Enjoying life with my amazing family!!
    Mom to Rachel 33, Bethany 30, Rebekah 30, Zachrey 20 and several angel babies
    Grandma to Larissa 11, Brittney 11, Trevor 11, Destiny 7, Jayvin 6, Jackxon 3, Kaleb Joshua Rian 1. Grandbaby #8, Sariah Grace born 11-17-16
  • sara291sara291 Posts: 1,042
    edited November -1
    In the ER. I was released but my on call doctor told me to go back asap and I need to see a specialist. My blood test came back normal whicg actually isn't good. They are suspecting Mastitis or Inflamatory breast cancer. With Mastitis you have an infection . . My test showed none. I also don't have a fever. Hoping for some answers quick. Info I was give

    Patients with IBC (breast cancer) look like they have a breast infection when, in fact, they have the most aggressive form of breast cancer known. But whereas patients with breast infection have fever and an elevated white blood count, patients with IBC have normal temperatures and normal while blood cell counts.
  • insearchofadonorinsearchofadonor Posts: 73
    edited November -1
    I don't normally post anymore, but am logging on especially to say I am thinking of you and hoping and praying that you get answers quickly and that it is the best case scenario rather than the worst(!!) Please do keep us updated as I haven't been able to stop thinking about this ever since you first posted! Take care. x
  • TheOtherLovingMomsTheOtherLovingMoms Posts: 1,481 ✭✭
    edited November -1
    Well that makes me nervous because my daughter doesn't have a fever or elevated WBC either. Yet she was diagnosed with mastitis.
    sara291 wrote:
    In the ER. I was released but my on call doctor told me to go back asap and I need to see a specialist. My blood test came back normal whicg actually isn't good. They are suspecting Mastitis or Inflamatory breast cancer. With Mastitis you have an infection . . My test showed none. I also don't have a fever. Hoping for some answers quick. Info I was give

    Patients with IBC (breast cancer) look like they have a breast infection when, in fact, they have the most aggressive form of breast cancer known. But whereas patients with breast infection have fever and an elevated white blood count, patients with IBC have normal temperatures and normal while blood cell counts.
    IGXwm4.png
    I just turned 50 and fabulous!!! Enjoying life with my amazing family!!
    Mom to Rachel 33, Bethany 30, Rebekah 30, Zachrey 20 and several angel babies
    Grandma to Larissa 11, Brittney 11, Trevor 11, Destiny 7, Jayvin 6, Jackxon 3, Kaleb Joshua Rian 1. Grandbaby #8, Sariah Grace born 11-17-16
  • Mommy2016Mommy2016 Posts: 1,037
    edited November -1
    Thinking of you! I'm so sorry you are dealing with this.
    Luca Gabriel was born 10/25/17 at 34 weeks, due to PROM. He's healthy and perfect! I'm in love!
    5/2015-BFN 6/2015-Chemical 8/2015-BFN 10/2015-BFN 12/2015-BFP (miscarriage)
    2/2016-BFN 4/2016-BFN 7/2016-BFN 10/2016-BFN 11/2016-BFN 12/2016-BFN 3/2017-BFP!!!
    IXn6m5.png
  • StephnHeidsStephnHeids Posts: 407
    edited November -1
    Thinking of you!!! And also of your daughter, TheOtherLovingMom! ❤❤❤❤
  • sara291sara291 Posts: 1,042
    edited November -1
    So was in the ER twice this weekend and doctor was able to get me in yesterday. Still in so much pain. Lump isn't any smaller. It's a about 3 by 4 inches. I saw a dr yesterday I've never been fond of (I see a group of OB's but since I've been going 10 yrs there I know them all well). I asked if she could find a certain doctor who stepped in last Thursday to see me and see if she could step in between patients. She was there in seconds. She said it looks a little less red . . It looks all bruised now. Today is my 6th day on antibiotics. I see a breast surgeon tomorrow. They will likely do a biopsy. Dr said she doesn't think it's a abscess. She said he may do a few things. I'm not sure if tomorrow is a consult or what all is going to happen. I know that when I first called they couldn't even see me for at least 2 weeks and then called back a few hours later trying to get me in ASAP. I just wish I knew why this large painful solidness isn't getting better. Ultrasound Wednesday showed thickening so I'm guessing that's the lump which is common in both Matitis and IBC. So maybe a little less red but bruised. I feel like I should be doing better on my 6 of 10 days antibiotics.
  • tinydancertinydancer Posts: 1,210
    edited November -1
    yes I would think you would be doing better after a near week of meds too. if they do a biopsy, sometimes it can be as easy as a needle one.
  • StephnHeidsStephnHeids Posts: 407
    edited November -1
    Hope everything goes well today!
  • sara291sara291 Posts: 1,042
    edited November -1
    Apparently they put me as high risk and I saw the specialist today. Amazing doctor. They wanted to schedule a biopsy at the hospital so I can be put under but they didn't know when it could be scheduled possibly tomorrow - next Monday. I don't want to wait so we just did a local numb and I just dealt with it. It might come back as a abscess which he doesn't think it is. He said it's either a extremely bad infection or a tumor/imflamatory breast cancer. If the biopsy comes back as non cancerous I will still do another at the hospital asap to take out more to be 100% certain. If it's not then basically we need to talk. My chart notes said

    Assessment:
    33 y.o. female with tender mass right breast, erythema not present now, but suspicion for inflammatory breast cancer certainly is high



    Plan:
    #1 skin biopsy, #2 parenchymal biopsy through punch biopsy site

    David M. Faddis, MD 5/10/2017 10:33 AM


    I'm actually less nervous then I was a few days ago. Moving forward is helping.
  • tinydancertinydancer Posts: 1,210
    edited November -1
    If I were you (which I have had breast surgery for cysts) I would have them go thru the nipple line for incision and take the mass out. NOT do another biopsy. just go for the whole deal to get it out. my do 3 invasive things when you can just get it out now.

    wow, I so hope this goes well. a plan is good. something doing something is good.
  • sara291sara291 Posts: 1,042
    edited November -1
    tinydancer wrote:
    If I were you (which I have had breast surgery for cysts) I would have them go thru the nipple line for incision and take the mass out. NOT do another biopsy. just go for the whole deal to get it out. my do 3 invasive things when you can just get it out now.

    wow, I so hope this goes well. a plan is good. something doing something is good.

    The mass is now 3 by 4 inches. Also imflamatory breast cancer is extremely different then any other breast cancer and is one of the most rare and aggressive types. You also go about treatment it extremely different. By the time you even know your in stage 5. It forms in layers so you don't just remove the tumor . . You want to shirk it first. It's much more complicated but this is some of what I know. The biopsy is ONlY if the current 4 we did today comes back as non cancerous just to make sure the 4 samples didn't miss anything. I don't even know how to explain it but basically you can't just remove it. . IBC is different.
  • ShannyShanny Posts: 2,456
    edited November -1
    I just logged on to check for an update. I'm sorry it's not better news yet! Do you know when you'll have results from the samples they took today? I'll be thinking of you and hoping for the best possible outcome.
    image_zps64579b54.png
  • insearchofadonorinsearchofadonor Posts: 73
    edited November -1
    I've also logged in for an update - fingers crossed on the biopsy results and also that the results come through quickly!! I hope there are some definitive answers for you soon.... Take care x
  • StephnHeidsStephnHeids Posts: 407
    edited November -1
    Sounds like you have a good plan in place! Glad they are getting you in quickly. Hopefully, you will get the results soon. Sending good thoughts your way.
  • sara291sara291 Posts: 1,042
    edited May 2017
    Shanny wrote:
    I just logged on to check for an update. I'm sorry it's not better news yet! Do you know when you'll have results from the samples they took today? I'll be thinking of you and hoping for the best possible outcome.

    I did the biopsy yesterday and they said possibly today, tomorrow or Monday for results. I'm at Riley's OT currently and decided not to take pain medication since I'm moving to much and keep making the stitches bleed but may need to soon. I asked what all possibilities there could be yesterday just for reassurence even if he is thinking it's one way. He said it could be a extremely bad infection - I'm on day 8 of the 10 for antibiotics and haven't seen much of an improvement if any. Redness though is looking more bruised and that's it. Pain is intense. He said it could be a tumor which he hopes is benign but he ultrasound last Wednesday didn't show that. Mass is 3 by 4 inches It showed thickening of the skin which lines up with Mastitis or IBC. Possibly a abscess which U/S didn't show either and my OB said it doesn't feel like on.





    So now I'm just waiting.
    Riley's therapist through his intensive therapy services schooo is just going to do a home visit today which is nice and also help explain to Riley that I need to rest more and what not since I've been having a little more trouble do much for or with them. Besides his OT today I've canceled most of this weeks stuff.

    Most here don't really know my children since I've hardly posted much but I'm sure you remember Riley quite well. They put him on the spectrum, he has ODD and ADHD, SPD and silent seizures. Motor and speech delay. . He just finished 2 months in a intensive therapy day school and we are finally seeing improvement :)

    I'm putting much of that on hold this week and am so thankful that his team is so understanding and reaching out to help with him over me actually going to appt.
  • tinydancertinydancer Posts: 1,210
    edited November -1
    OMG, Im so sorry to hear this. I hope the results come back quick
  • sara291sara291 Posts: 1,042
    edited May 2017
    Finally got an answer. I have
    Idiopathic granulomatous mastitis - basically have a autoimmune condition that's now attacking the areas as well. Drs called me while they were in surgery with another patient so I could only talk so long. They wanted to give me the info asap. So glad it's not IBC. I will be on steroids for 10-days and go back for a recheck. It could take 6-months to get over this.
  • ariellearielle Posts: 240
    edited November -1
    I haven't commented on this post yet (usually don't mingle on this side of the forum), but have been checking for your updates once in a while. I'm now breathing a sigh of relief. Of course it's not good you have an autoimmune condition, but thankfully it's not IBC. It's so good to hear that and also that they gave you this info today already and not in a few days. I can only imagine how hard the past few days must have been for you.
    ICI 07/2012 BFN, ICI 08/2012 BFN, IUI 03/2013 BFN, IUI 06/2013 BFN, ICI 08/2013 BFN, ICI 11/2014 BFN, ICI 12/2014 BFN, ICI 12/2015 BFN, ICI 01/2016 BFN, IUI (with trigger) 02/2016 BFN, IUI (with clomid + trigger) 03/2016 BFN, IUI (with clomid + trigger) 04/2016 BFP - ended in ectopic pregnancy, ICI 10/2016 BFN, ICI 11/2016 BFN, Back to Back IUI 01/2017 BFN, ICI 4/2017 - BFN, ICI 5/2017 - BFN, IVF 6/2017 - 19 blastocysts frozen, FET 8/2017 (single embryo transfer) - BFP
Sign In or Register to comment.