DudleysMom here. It looks like some people have read this post, even though no one offered me any help. Maybe someone can be helped by the crap that I went through.
Well, after going to 7 surgeons, I finally found a surgeon who was willing to remove the painful lump that resulted from my stereotactic biopsy...22 months later. Yes, you're reading that right. Almost 2 years of pain. Two UNNECESSARY years of pain.
It was something called PASH, pseudoangiomatous stromal hyperplasia, and if PASH causes pain, the treatment is excision. PASH is a benign growth. I had been expecting either a foreign body reaction (from the titanium marker) and I think the surgeon was expecting scar tissue and/or possibly a damaged nerve. My pain in this area of my breast is now almost completely resolved, and the surgeon also corrected my large hypertrophic scar while she was operating (I now have a rapidly fading thin, linear scar that I think will be cosmetically quite acceptable). My nipple now points in the direction it used to (the surgeons all disputed me when I told them that it was pointing downward instead of out).
Let's review. Seven surgeons and five radiologists misdiagnosed this as 1) scar tissue 2) fat necrosis or 3) chronic hematoma. That's a lot of doctors guessing wrong, and not listening to the patient when she says "it can't be a necrosis, because it hurts." One ****** had me put capsaicin on it, which just burned the skin (he believed it was "phantom pain", what a douche).
I'm still suffering from severe fibrocystic disease, but my daily torture has been reduced somewhat, since now at least I can wear a supportive bra (when my biopsy was really bothering me, I couldn't tolerate a bra and had to spend most of my day lying down with an ice pack). I took tamoxifen for four months, which definitely helped my pain, but I've had to stop at least temporarily because of a side effect causing a problem with my eye.
And in case you're wondering, I don't drink any coffee, not even decaf. Cutting out caffeine didn't help me at all. But I refuse to start drinking it again, so I can continue to tell the doctors that they are COMPLETELY wrong in their assumption that I am causing my pain by drinking coffee. (I also don't eat chocolate, I've reduced my salt intake to a very low level, and I've cut my dairy consumption by 2/3, substituting almond milk. And I take the BS supplements, Vitamin E and Evening Primrose Oil--which have maybe helped 1%.) Mostly I survive by carrying instant icepacks with me all day long and taking the maximum amount of both Tylenol and Aleve every single day.
I think it is ridiculous how BAD the medical profession is about treating breast pain. Shame on them. (I do like my current surgeon somewhat better.) I can't imagine how bad it is for women suffering from chronic pain from mastectomies—I'm sure that they are told, as I was, that they are being incredibly ungrateful that they aren't dead from cancer. Quality of life seems to be an afterthought for most of the doctors in this area.
If you're curious, the excision procedure was remarkably better than my stereotactic biopsy (two weeks of a minor hematoma versus 6 months of a major hematomal; two weeks off from work versus 6 weeks). If I need another biopsy, it will be excisional. I've come to believe that the major advantage of a stereotactic biopsy is that it costs insurance companies less. The real reason why a titanium marker is necessary for this type of biopsy is that a severe hematoma is SO COMMON that if there is a cancerous finding, the hematoma might make it impossible to do a lumpectomy. Ask your doctor if you think I'm wrong.