Resources to help painful hematoma 9 mos after sterotactic biopsy

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.

Hi DudleysMom,

Thanks for your posts! I too had a very bad time with my stereotactic breast biopsy (for microcalcs) a few months back. (Results benign). Though not quite as bad a time as you had!

In my case, the bruising that showed on the skin took weeks and weeks to heal. Even now I still have pain after vigorous activity (even though they said I could resume normal activity shortly after the biopsy, ha). I also still have lumps/knots at the incision site and elsewhere in the breast that weren't there before the biopsy. (I am getting those checked with a specialist soon.)

In the meantime, when I visit my doc, I will keep your story in mind!

Also, for fibrocystic pain (which I also have), talk to your doc about your iodine status; if you're iodine-deficient, correcting the deficiency may help, at least according to a few studies. (I found the info at this Oregon State University website: http://lpi.oregonstate.edu/infocenter/minerals/iodine/#goitrogen --Scroll down to the Disease Treatment - Fibrocystic Breast Condition section to see a summary of the data on iodine and fibrocystic breast disease to date.)

I switched back to iodized salt, which seemed to help a little; I'm also going to ask about it at my appointment with the breast specialist.

Thanks again for sharing your story.

i just read your post today, due to the search on hematoma after a normal breast biopsy. i had the preventative biopsy on Tuesday 3/20/12 and now have a golf ball sized painful hematoma that the nurse and doctor don't seem to care about. i went into the biopsy pain free with normal breast and have come out with a painful huge lump. i am very tall and have very small breasts. I am a "nearly A". they made me "hold perfectly still" because i didn't have enough mass to make the clamps close to secure the breast during biopsy. no one cared about that either. it was the most painful thing i've ever had done. and this is preventative???? you went through worse and now i worry i will be on the same path. i appreciate your post. i am not alone.

I have a huge hematoma after biopsy.  My right breast is 5-6X bigger than the left one.  Is purple/back all over my arm pit, under my breast on my rib cage and over to the left breast.  Hard as a rock. Sharp shooting pains in my breast and down my right arm.  Keeping ice on it 24/7.  Surgeon says he cannot cut before hematoma goes away.  I read about women taking months to get these things resolved.  That's time my tumor has to replicate cancer cells to send out to the rest of my body.  My tumor was slightly bigger than 2.5cm  when diagnosed.  I am scared.  It's like I am doing nothing to fight the cancer right now.  I still have to have th left side biopsied.  They said doing both sides at the same time would be "too much".  I am scared I'll get another hematoma.  My labs said I have some kind of clotting disorder and I'm supposed to see a heme MD in August.  The biopsy is next week.  I asked for a psych consult to get medication to peel me off the ceiling  (I do read Barbara Johnson's spatula ministries books).  Can you tell I'm losing it?  I am tired of carrying my breast in my hand.  Can someone tell me this, too, shall pass.  Any remedies besides ice?

eimme

I had the sterotactic biopsy from hell......no one told me anything...husband tried to ask questions and the Dr's asst stormed out of the room because she said his questions were "unnecessary" and said she was going to get the Dr...didn't even get the right place for the biopsy. Now I have a small knot where the needle was (on one side of where the needle was) and that is scarring me. No one seems to care. How cold these Dr's are and yet don't feel bad for taking our money. I don't get it. How would they like it if they got a taste of their own medicine? I have been a basket case because I'm not getting answers. This is so stressful. I will say a prayer for you all. God is our healer.

So almost 3 weeks now and what dr's are calling a hematoma is still there and I have pain off and on. The skin feels very tender to the touch where the hematoma is. Is this normal? I fell asleep last night with an ice pack of solid frozen water in it and the ice pack was on through the night. Will that cause damage? The reason I ask is because they say to ice the area for 10 min or so at a time and I fell asleep with it on me for hours. Do you suppose the skin around the area that is tender to the touch a nerve thing or is it tender due to the hematoma itself? I can't seem to get any answers....just the standard covering their behinds answer of "everyone is different on the healing process".

Thank you for your reply. My skin does have that tender/burning feeling when lightly touching it. That happened before icing it. I'm told that there are a ton of nerves in the breast and with a stereotactic, it can definitely effect the nerves. Now, whether that is true or not, I'm not sure. I'm wondering if one would have the nerve pain from the sterotactic if they didn't have a hematoma?

Tomorrow will be 1 month since the biopsy. The hematoma seems smaller but it seems like when I stretch my arm as if I'm reaching for something, I get a twinge of pain off and on for about 3 min. Or so. Am I irritating this? Also, shouldn't the pain be totally gone by now? I mean it's been a month now! Any pressure against it doesn't feel to great either. I read that when they do mammograms that the hematoma can leave a lump or scar tissue or even calcifications which can make the radiologist think it could be a cancer thus possibly wanting to do a biopsy. When do the biopsies stop? I mean, I got this done because of microcalcifications (which were benign) and now I read that because of the biopsy and hematoma, that can also warrant another biopsy. Ughhh..I just don't want to be running in circles with biopsies ya know?

I have spoken to my Dr and he said pretty much the same as what you said...everyone is different in the healing process. How long has it been since you've had your biopsy? Have you had a mammogram since? If so,how did that go for you? I just don't know how long it would be to where the pain becomes abnormal. Thank you for sharing your experience.

Yes, I had a titanium mark put in. So, the Dr's are saying that your pain is unusual? What did they say to do? At what point do we start to think that the pain is abnormal? I just don't want to keep "running in circles" as I stated before with this but on the other hand feel like no one really knows what to do about pain from the biopsy after a certain amount of time except give you another mammogram and I don't want all that radiation.when I had my first biopsy which was totally messed up, they took pictures before and after the procedure and they took about 14 pictures. Ummm...I'm no expert but to me, that seems like a lot of radiation and when I got my second biopsy (which they knew what they were doing) they were able to do the biopsy off of my pictures that I got the first time and didn't do any more mammograms afterwards and sent in the sample. He said that he took more than normal just to cover the area and I agreed to that. So, now we are trying to establish back a normal baseline and they want to do an ultrasound and mammogram 6 mo from the date of the procedure. Still nervous about getting a mammogram regarding the radiation exposure.

Do you have a lot of pain or just when you do certain things? Can you sleep on that side? I wore a tank top instead of a "bra" for the first few weeks after the biopsy. I'm thinking that was not a good idea because I think the gravity pulled on the hematoma which I think slows the healing process.

I see my medical oncologist tomorrow and I'll find out then about when I'm scheduled for my follow up mammos.

At this point in my life, I would rather have the risk of exposure to the radiation of mammograms than the alternative. Plus, all the radiation I went through after my surgeries, I should glow at this point.

I guess it comes down to how we have to weigh out the pro's and con's and decide our priorities.

I'll find out tomorrow when my next official post-op mammo will be scheduled for.

They can also do MRI's and ultrasounds, and you can bring this up to your doctor as an option to mammos as the MRI's in particular tend to show a lot more detail. I've had them all done. But if that's a concern of yours, it may well be worth bringing up to your doc?









M.

Okay, it's now almost 2 months since I have had my biopsy and although my hematoma bump has gone down quite a bit, sometimes it can really hurt. Yesterday I put on a tube top bra and it seemed like the pressure of the bra made the area of the hematoma hurt. Really? Two months later? Is that even normal that the pressure of a bra can irritate that tiny little gematoma now? Well, it sure kept me from sleeping on that side too. Does all this sound normal? I'm 3 days off of my monthly cycle now and wondered if ovulation could cause breast pain, but then I thought...same area as the hematoma so I ruled the ovulation thing out.

I'm so tired of hurting off and on with this. I feel like my breast will never get back to normal. Will it ever?