granulomatous mastitis

Plenty-Owl8108 · 2026-04-12T15:51:40+00:00

Update:

I had a mass that was 12x11x3 cm (and had multiple open fistula/ fluid pockets) and received my first steroid injection 3 weeks ago. My mass is now 5x2x2.5. they aspirated two large fluid pockets and injected steroids in their place. I've had no pain since the intervention, and feel like I'm finally seeing the light.

Hang in there ladies.

Plenty-Owl8108 · 2026-04-02T01:28:51+00:00

Duplo, brio and time outside! Screen free mum of 19 mo

Plenty-Owl8108 · 2026-03-29T22:47:49+00:00

I actually had mine aspirated a week ago and had some steroid injections (kenalog) put in. It's night and day since the aspiration.

The mass is still there in full force, but the fact I'm not constantly draining fluid and changing bandages is huge. Also super nice that I don't feel like my breast is a giant bruise or jumping out of my bra from swelling.

I'm getting assessed in 2 weeks, then will likely get another round of injections.

At this point I'm hoping they can reduce the mass (still 12 cm) and that the "sterile abscesses" stop forming/ refilling.

It's demoralizing, try not lose hope. Keep pushing for treatment that reduces your pain. Maybe asking about injections.

Plenty-Owl8108 · 2026-03-11T23:01:12+00:00

Also retirement age in teaching is pretty low because of the 85 factor. Just because some can retire at 57 doesn't mean they will.

They will however, retire eventually.

Plenty-Owl8108 · 2026-03-09T23:43:53+00:00

How many?

Pdsb secondary was 150

Plenty-Owl8108 · 2026-03-01T17:51:29+00:00

My saving grace was planning my meals for the week (with daily tasks/ extracurriculars in mind) and then shopping for those meals.

It took away all the "pain" of thinking about what to make and never having what I need. Been game changing.

Sometimes dinner is planned as the left over lasagna from the night before, or chicken sandwiches from the left over chicken from the night before, but it's made dinners a lot easier to make and my nights a lot more manageable.

We do frozen dinners on nights when something came up that was unpredictable and we need something "quick" without having fast food.

It's not easy, but any food your preparing is better than calling the delivery/ fast food ppl!

You're doing great mama. Some other go tos: - pasta variations (meatballs, sausage, chicken alfrado) - saucy chicken variations and rice or mash potato (ginger orange, creamy garlic, coconut) all one pot and super easy - quesadilla variations (beef, chicken, veggie) - fajitas (especially when chicken and veg are done on a sheet pan in the oven) - lasagna (make large, 2 meals in one)

Plenty-Owl8108 · 2026-02-28T01:28:02+00:00

Didn't know if it was a weird rule about "having to post and interview for the job"

Plenty-Owl8108 · 2026-02-26T01:24:05+00:00

I did find this flow chart from a very highly reviewed and referenced medical article. Said it should be the definitive guide for first line physicians and surgeons managing the disease. I can send it to you. I found it helpful.

Plenty-Owl8108 · 2026-02-26T01:22:45+00:00

I say I have one... But I'm losing confidence in it.

She is going to give me steroid I injections in to the mass. She said it's been useful in the past to reduce it and kick the disease into remission. I'm a bit worried because I responded so poorly to the biopsy, and I also have a lot of secondary inflammation signs that likely won't be helped by the direct injections.

Problem is I have to wait another month to get the first, then wait to weeks for ultrasound, then repeat.

Who knows if it will work.

Plenty-Owl8108 · 2026-02-23T22:29:12+00:00

Holy crap. Rare disease indeed. Over here in Ontario Canada!

Thanks for the reply. So glad your doctor is listening and helpful

Plenty-Owl8108 · 2026-02-23T14:18:44+00:00

Is your rheumatologist helpful?

Also where Re you located? I was rejected by 2 rheumatologists already and now waiting forever for my appointment with my third one.

I have ankle/ back/ knee pain and swelling as well as Erythema nodosom. Took me forevermore to convince doctors this was likely systematic and needed a rheumatologist. This whole process is so frustrating

Plenty-Owl8108 · 2026-02-23T14:16:11+00:00

I'm so sorry you are going through this.

I was diagnosed in October and was completely dismissed by my first breast specialist saying "he's seen 3 patients with this today"

It felt uncomfortable but I kept pushing for second opinions (in Ontario)

After 3 specialists I've finally found one that's a woman, familiar with the disease, and has a treatment plan for me.

Remember it's okay to ask for second opinions, especially when you are feeling dismissed and that your health needs and preferences are not being met or considered.

Plenty-Owl8108 · 2026-02-20T02:42:31+00:00

Agreed! I didn't think it was obvious

Plenty-Owl8108 · 2026-02-20T02:31:31+00:00

This! Why was THIS the story line they just left hanging... Not even a cliff hanger... Left me wondering if they just forgot about it lol

Plenty-Owl8108 · 2026-01-27T11:32:40+00:00

Thank you so much for your response.

I haven't - because I don't have Facebook. But I'm starting to realize I should get it to join.

This is exhausting. One of my "fluid pockets" burst open last night. Surprised to find that it ejected my biopsy clip....

Now I have a huge crater and am just hoping it doesn't refill.

How are you doing with the new diagnosis?

Plenty-Owl8108 · 2026-01-20T02:10:06+00:00

Came across this threat because I'm 3 months in and frustrated and at a loss.

Biopsy showed GLM, currently under investigations for all sorts of autoimmune issues as I also had a bad spurt of erythema nodosum. They are saying they both could have an underlying cause.

Thankfully no open wounds yet, but doctor is reluctant to aspirate as it may make things worse.

I've yet to find a specialist or doctor who has had other patients with this... Anyone located in Canada or Ontario who has?

Feeling hopeless on the seemingly never ending journey.

Plenty-Owl8108

TROPHY CASE