Non-lactational Mastitis not fully responding to antibiotics

Rambler

Hi all, this is my first post. I'm trying to figure out how to advocate for myself to get answers to what is the root cause of my non-lactational mastitis. I am 38, one daughter who I had when I was a week shy of 30. Breast fed for two years (2013-2015). Mother had breast cancer over 60, genes unknown. Overall lifetime risk assessment was very slightly above average.

6/13

Woke up with acute, localized pain, swelling and lump in my right breast. I have cystic breasts and had a mammogram in 2018 when one felt swollen (but not painful) in this same area. A flat red rash appeared over the spot (about the size of a credit card) and I started a low grade fever. Urgent care issued bactrim for mastitis. I felt a heaviness and inflammation all through my pectoral area, armpit and even down the top part of my arm. When I pressed on the area between my breast and collar bone, I'd feel mucus discharge in my throat. After day 1of bactrim, the rash spread up my breast, down parts of my arm and neck. Doc thought it was allergic reaction to bactrim, but it was localized to just the affected right side. I was switched to doxycycline and symptoms improved within a few days.

6/17

I went for imaging and saw a breast surgeon (at which point symptoms had mostly resolved) and ultrasound and mammogram just showed dense breast tissue and lots of cysts. There was a very dense cluster of cysts in the area i had experienced symptoms, but nothing "worth putting a needle into" I was told. Great, fabulous, all better and sent on my way and told to come back in 2years for a regular mammogram. No idea why it occurred but they didn't seem to care to find out since it had resolved.

6/25

One week later and 2days off 1st round of doxycycline (6/25), symptoms returned in the same breast but a different spot. This time there was not one firm swollen lump though. The pain was localized and trigger pain when pushed but did not feel like an infected cysts. Low grade fever and malaise start back up. The symptoms I can't seem to figure out is when I press on the painful area, I feel mucus discharge into my throat, it seems like it is connected to lymphatic system again like before. Breast surgeon thinks it was just bacteria floating around so I start round 2 of doxycycline on 6/29. Malaise and low grade fever resolve the following day. A rash that looked like red dots appeared but faded a few days later. Pain and heaviness do not improve. During a self exam I also notice a clear/orange tinged discharge from nipple as well as some pus color. It was not spontaneous, it was expressed.

7/9

I go back to breast center on 7/9 after round 2 of antibiotics and ultrasound shows inflammation that she believes is just lingering from the infection and wants to do a wait and see approach since she doesn't want me on more antibiotics. At this point I'm pretty frustrated with how dismissive the doc is being but overall I'm feeling fine except this pesky breast pain.

7/10 today

Now I'm not feeling fine. Low grade fever, mild malaise is back, inflammation in my pectoral and a heaviness deeper in my breast is increasing. No rash but noticing visible dark blue veins.

So of course I've been Dr. Googling for a month and now that I'm still not feeling relief after two rounds of antibiotics I'm growing concerned although since there was improvement with antibiotics my doctor is not concerned. I've read that with IBC it can sometimes initially respond to antibiotics but I can't find any details as to why this is or what to do in these cases. I'm still getting mucous discharge in mouth when I press on the painful area and a deeper dull ache in the breast and pectoral area. No biopsy or bloodwork has been done. My doc is young and I feel like I'd like a second opinion or need to advocate for more diagnostics to rule out IBC or find the root cause of this. I don't have the classic orange peel skin but I googled images and my breast does sort of resemble cellulite like some pictures of the peau d'orange. I also have broken capillaries which I just read is a possible symptom as well.

Im starting to feel a bit like girl who cried wolf because whenever I'm seen in the office my symptoms have resolved but then return. Any guidance would be appreciated. If you've read this far, thank you! I'm sure it is just a pesky infection but If you've experienced something similar I'd love to hear your story, thanks!

jhl

Hi Rambler,

I have not had your circumstance but I would agree that 2 rounds of antibiotics are plenty. If I were you I would push for more diagnostic imaging. You are young but not so young that you should not have a mammogram and/or an MRI to get to the bottom of what you are experiencing. We will never regret advocating for our health, only for the times we do not.

Good luck,

Jane

flashlight

Rambler, I agree with jhl, have you thought of going to a breast surgeon? Why did your doctor choose those antibiotics? Did she think it was bacteria infection like staph?

Rambler

Thank you both for replying. I realize I may not have been clear in my initial story. I've edited my OP for clarity. After urgent care, I did see a breast surgeon on 6/17 and she has been managing my care since then.

I'm allergic to amoxicillin/penicillin and then after a day of bactrim (6/14)I started with the rash spreading along my right side (pectoral, shoulder, arm, back, neck but just near affected area) so I went back to urgent care and that doc thought I was "just sunburned" because it had faded a bit by the time i was seen (and i was a touch sunburned so it was hard to see). I thought it was the infection spreading because the rash felt hot and enflamed not itchy or like an allergic reaction. So I was sent home with no changes. Then the next day (6/15) same rash reappeared and my face an neck were getting tingly (again just on right side) so I called my PCP and he thought I was having an allergic reaction to bactrim and switched me to doxycycline but didn't explain why.

There have not been any cultures taken. Since the breast surgeon didn't see anything alarming on imaging and it initially responded to antibiotics, she is not concerned about figuring out what is going on. When I told her about the discharge I hoped she would want to test that at least. I'm partially concerned it may be IBC because it feels more systemic than just an infected cyst.

Krose53

I really don't know much about IBC but I did have a friend who was a pharmacist. She had a skin breast infection or so she thought and repeatedly treated herself with antibiotics. Her symptoms would clear up and then come back. She did several rounds of different antibiotics. Finally she did see her doctor and it was IBC. I'd make sure your doctor got to the bottom of this.

ShetlandPony

I think a second opinion is a very good idea since your doctor seems stuck. Something is wrong, and someone needs to figure it out. (I wonder how common mastitis is in a woman who is not lactating.) Have you seen a dermatologist? IF it is IBC waiting around is very bad. Can you get to a university-based medical center or a big cancer center for an evaluation? Not a "breast center" connected with a small hospital. You have had a mammogram and ultrasound, but if there is suspicion of IBC they would do a punch biopsy of the skin. IBC is rare and breast cancer is not common in younger women. BUT it can happen and you would not want to miss it or wait too long. In any case, there is some problem, so don't let them brush you off.