Paging Dr House, weird breast issue edition
March 23, 2022 3:05 PM   Subscribe

I’ve had very strange breast inflammation come and go over the last four years. I’ve seen a bunch of doctors and had a ton of imaging and tests. Nobody has any idea what it is. Now I want to find a doctor who can actually figure it out. It’s been suggested I find a rheumatologist — is that right? (Austin-area doctor recommendations are welcome!)

Sorry — this is long — but I’m trying to cover everything.

So it LOOKS like a really severe case of mastitis.
- Right breast only
- Comes on like a freight train out of nowhere in a matter of hours — I’ll be having a perfectly normal day, then my breast starts to hurt a little, then it’ll be inflamed and unbearable within about 60 minutes
- Major inflammation — seriously severe redness, swelling, and firmness — worst in lower left quadrant, but really envelops the whole breast
- Unbearable pain that radiates down my arm
- Tougher, thicker bit of skin, maybe 1.5” wide, in lower left quadrant

Notably, no lumps.

Nothing has ever shown up on mammograms and ultrasounds. Nothing on skin biopsies. Even had a fruitless deep core biopsy. Most recent imaging was a (regularly scheduled) mammogram and followup ultrasound in January.

Bloodwork is normal. White blood cell count (and temperature) have never been elevated during flareups. The only potentially significant thing — my ANA titer was slightly positive the last time we did a full panel of everything they could possibly think of.

Every flareup except the most recent, it’s gone away in a few weeks with a course of prednisone (and amoxicillin, but who knows if that’s actually doing anything).

Between flareups, the breast is totally fine — like nothing ever happened, except that patch of skin still feels a little thick.

The first time: it appeared out of nowhere in mid-2018 when I was 30 weeks pregnant with my second. Understandable theory was that it was an incredibly nasty case of mastitis, so I spent four days in the hospital antenatal unit getting IV vancomycin and morphine. Zero improvement, and emergency childcare was getting expensive, so I just went home with no answer. That’s when we started prednisone — because nobody had any better ideas — and it got better within a few weeks. Went on to deliver baby at 40 weeks, no problem.

Happened again when I wasn’t pregnant — late 2020, mid-2021, then again late 2021. Weirdly, the most recent flareup wasn’t as bad and completely went away on its own within a week or two even though I never took the prednisone. And then, for the last six weeks or so and continuing to today, I’ve started getting intermittent pain in that breast (sometimes pretty bad). So far, it hasn’t progressed to the visible inflammation and all the rest. (Pain started about a week before the most recent mammogram.)

Theories from the doctors I’ve seen:
- Per OB/GYN, her colleagues and staff, and everyone at the antenatal unit: just an unusual case of mastitis (she actually said “the worst case I’ve seen in my career,” and that’s saying something, given how long she’s been in practice). (funny story: she’s part of a large women’s clinic and I swear, the first time, every doctor and nurse in the entire place came to look at it like I was a curiosity show. Which I welcomed — the more eyes that can help, the better.)
- Per dermatologist, maybe morphea? But very unsure
- Per breast surgeon, “just a weird thing that happens sometimes” (first time, she said — and I quote — “just a weird pregnancy thing” and it wouldn’t happen again. Thanks a lot?)

I went back to the breast surgeon two weeks ago since it’s been hurting, and she basically said it was no big deal and didn’t mean anything this time either. Only come back if I actually find a lump.

I don’t want to accept that answer anymore, especially with the current pain.

So, my questions: do YOU have any idea what’s going on? What kind of doctor should I see next — rheumatologist or something else? And long shot: do you have any suggestions for a specific doctor in the Austin area?

Personal details, in case it matters:
- I’m 41
- Overweight, but have been working on it and am close to a normal BMI now
- Very active, decent diet
- No health history other than hypothyroidism, psychiatric, and unexplained infertility (I basically don’t ovulate on my own — did IVF for first kid)
- Just the two pregnancies in my late 30s
- Couldn’t breastfeed because I basically didn’t produce milk — for no discernible reason, tried absolutely everything possible and nothing made any difference, best guess by multiple lactation consultants was insufficient glandular tissue (even though I don’t have any of the usual physical signs). I still comfort nursed my kids for about 24 months total between the two of them
- Only breast cancer in my family is paternal grandmother and maternal aunt — both diagnosed in their 60s/70
posted by liet to Health & Fitness (10 answers total)
Have you seen an endocrinologist? I would, especially with how much of the endocrine system passes through the breast, and you not ovulating on your own.
posted by Bottlecap at 3:14 PM on March 23 [1 favorite]

Totally speculative, but this is not unlike the symptoms for inflammatory breast cancer, except it doesn't come and go and biopsies presumably would've turned it up. The symptoms of IBC are physically caused by blockage of the lymph system by cancer cells. So I'm wondering if it's something similar, only not caused by IBC.
posted by praemunire at 3:23 PM on March 23

Response by poster: I’ve been seeing an endocrinologist for years to monitor my hypothyroidism, but never specifically worked with them on this thing. I’ve told them about it, but they haven’t been interested. (I should probably mention that they suck and I’ve been meaning to find somewhere else for thyroid stuff.)
posted by liet at 3:37 PM on March 23

Several years ago, in November, I experienced this, went to the doctor (not my doctor, because he was on holiday), who was shocked and blurted out I probably only had months to live in because he thought it was inflammatory breast cancer. For some reason I remained calm, and asked to be checked for borrelia, and I was right. I don't recall why I thought of that. Ticks are dormant in November here, and I certainly hadn't had an unnoticed tick on my breast. But it turns out that borrelia infections that survive an insufficient antibiotic regime can move around in your body and appear in strange places, and I had gone through a fairly light borrelia treatment during the summer. The cure was a very harsh and specific antibiotic treatment, normally IV, but I recovered by just taking a handful of very big pills every day for three weeks.
I have no idea if that is what you are experiencing but it does fit with your repeated prednisone/amoxicillin treatments being inefficient. Have you had a tick-bite during or previous to your pregnancy?
posted by mumimor at 4:03 PM on March 23 [2 favorites]

The first time: it appeared out of nowhere in mid-2018 when I was 30 weeks pregnant with my second.

This is what I was looking for after I read the part of your question that appears on the front page, because it turns out that fetal stem cells can pass through the placenta and attempt to repair physiological problems in the mother:
Chimeras can also result from pregnancy. Cells from embryos regularly cross via the placenta into the mother during gestation, while her cells can end up in the embryo. It is astonishing how long such cells can survive. One woman who had given birth to a son still had cells with Y-chromosomes in her body twenty-seven years later. In another case, an entire lobe of a woman’s liver that had been damaged by disease was repaired by fetal cells that remained in her body after an abortion. A mother’s brain cells, too, can be derived from offspring.
And there was definitely a problem it would have been in the interests of a fetus to remedy:

Couldn’t breastfeed because I basically didn’t produce milk — for no discernible reason, tried absolutely everything possible and nothing made any difference, best guess by multiple lactation consultants was insufficient glandular tissue (even though I don’t have any of the usual physical signs).

But sometimes these fetal cells have also apparently caused autoimmune problems for the mother, and I think that may be what’s happening to you.

(The part of the linked page I pulled the quote from is behind a paywall, but you can read it for free if you register. I tried to make it accessible with an link, but that didn’t work for some reason. I read this article in the first place because it was the subject of a metafilter post in 2019.)
posted by jamjam at 4:41 PM on March 23 [2 favorites]

I am also thinking you should seek out a consult on endocrine/autoimmune. Hypothyroid, psychiatric, and reproductive/endocrine are not at all strange bedfellows. And pregnancy is the wildcard that isn’t a wildcard for that.

Any chance the periodicity of the flares follows your period in some way?
posted by executive_dysfuncti0n at 5:01 PM on March 23

Response by poster: mumimor: holy shit! I never thought about Lyme, but that’s a great lead. I’ve never knowingly been bitten by a tick, but I’ve been an avid hiker my whole life, so it’s definitely not outside the realm of possibility. (99% of the hiking’s been in western Oregon and central Texas, but Google says there are rare cases in both places?)

executive_dysfuncti0n: I don’t have periods — I’ve had an IUD since before the post-pregnancy flareups.

(sorry, I’ll try to minimize the threadsitting)
posted by liet at 5:35 PM on March 23

I had a go-away-come-back breast issue like this in my 20s, and it turned out to be hyperprolactinemia. Sometimes caused by microadenomas on the pituitary gland, sometimes it just happens for no reason at all. So, seconding/thirding the rec for an endocrinologist!
posted by headspace at 8:39 PM on March 23

Response by poster: Update: a local Dr. MeFite MeMailed me a personal recommendation for a local breast surgeon. I made approximately one million phone calls and records transfers (and also had to have a plea relayed to a triage nurse who’d reviewed the summaries and had apparently concluded there was nothing to see here and I was crazy). But now I’m on the schedule and will hopefully get some answers soon.

Thanks all! Endo will be my next step if needed.
posted by liet at 11:01 AM on April 5 [1 favorite]

Response by poster: Update 2: finally got in to see the breast surgeon privately recommended by the previously mentioned MeFite doctor.

It’s definitely morphea. In fact, the surgeon showed me that morphea is what the pathologist WROTE ON THE REPORT when they worked up the skin biopsies performed by my dermatologist in 2018 — during the very first flareup (when I was pregnant). WTF. Dermatologist made it sound non-definitive and I’ve been going through all this medical run-around bullshit ever since. So next step is going to a better dermatologist.

This breast surgeon was great and I’m very glad I got the recommendation.

Also: I had to explain Ask Metafilter to one of the doctor’s colleagues when they asked where I’d heard about her. I was like, well, an internet stranger approached me after I desperately described my case on a question and answer website that I trust because I’ve been a member for like 20 years.

I think for a second, and I go on to elaborate that it’s a great place where people ask a ton of different questions about all kinds of different things, like “can I eat this food I left in my trunk for two days,” but other actually smart questions too, and… uh, medical stuff?

So yeah, definitely could have done a better job — and should have. There’s way more to Ask than Can I Eat This. Thank you all so much.
posted by liet at 12:39 PM on April 27

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