Plasma cell mastitis - does anyone else have this?

I have recently been diagnosed with PCM. Incurable and untreatable, but benign. My surgeon encounters maybe 2 cases of this per year because it is so rare so doesn't know a great deal about it. (He is a great general surgeon with a special interest in breast surgery). He said that subsequent surgery may need to be done by a more specialised breast surgeon but this would require travel to a major city 4 hours away

Does anybody else have this, or know anyone who does?

I am feeling frustrated, it's not well understood or studied so it is very hard to find information about this. My surgeon did mention that the wound may not heal, may reopen and because I didn't have many of the classic signs of this disease, he couldn't have known what he was dealing with until he did the open biopsy (which I agree, it absolutely had to be done regardless of the risk because ruling out cancer was so important). The wound is mostly healing but there is a leaking hole in the middle of the incision that I am attempting to keep closed with steri strips, but unfortunately it will not join together because the skin is healed around the hole. I am due to have a review with him next week to check on it.

At first I felt overwhelmed by this diagnosis, but I've had a few days to let it sink in. It's benign which is great, but may cause me issues for life, or I might get lucky and not have any more issues. At its worst, I had a large, at times tender abscess under my nipple - but I can live with that.

I am 34, have never had children (no intentions to either). I have so many questions which at the time of my appt, I couldn't think of.

Why does it happen?

What are the consequences (if any) of not treating an abscess?

What are the consequences of surgically draining every abscess?

What ultimately is the end result if this continues to cause issues? Could I lose a breast?

Being that it is an inflammatory disease, is there any way to reduce the inflammation and therefore reduce the risk of recurrence?

It affects one breast only, is it likely to affect the other at some point?

My partner is so stressed about it and worried about me, and I find myself reassuring him. From the limited amount I have read, absolute worst case scenario is mastectomy - but I said to him that if it came to that, it would be because I was in unbearable pain or discomfort and there would be no doubt that that would be the best course of treatment. From what I have experienced so far, mastectomy would be extreme so things would have to be really bad for me to consider it. I keep pointing out that things could have been much worse, that if the worst I have to deal with is what I had that I can deal with that because we now know it's not cancer.

Sorry for the long first post but I had to get it all out! I am hoping someone out there knows a little bit about this disease.