My Ghost Boobs | Phantom Pain after Mastectomy

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So it turns out that it’s hard to find a picture online of a ghost with boobs.  Which is probably good.   I probably don’t need to remind you that I am a scientist and a writer, not so much an artist. I just felt like this needed an illustration, and this was the best I could come up with.  Of course, I’m not really talking about a ghost with boobs, I’m talking about phantom pain and sensations after my mastectomy.  My “ghost boobs.”

Most people are familiar with the concept of phantom pain after an amputation.  The amputee will feel pain in the limb that is no longer there.  It’s a pretty cruel trick that your brain plays, all those screwed up nerves that don’t go anywhere anymore just don’t know what to do, and it’s hard for your brain to keep up.  I would never compare myself to an amputee, my life is certainly not affected in the way that it would be if I’d lost an arm or a leg.  But I did lose a body part, it’s just that my prosthesis is cleverly hidden under my own skin, and curious kids in the grocery store won’t stare or ask me questions that embarrass their mothers.

So back to the phantom pain part.  As I’ve said, not only am I missing a good amount of tissue after my surgery, all my nerve endings are screwed up.  The nerves go all the way out to the skin– that’s how you feel touch.  In a mastectomy, the surgeon works as closely to the skin as possible, removing all the breast tissue and even some of the subcutaneous (fancy science word for just under the skin) fat.  So while it’s possible the the nerve endings are still there, the nerve part that goes through the breast to connect them with the brain is gone.  (That’s why the tattooing didn’t hurt much at all.)  It’s not a frequent thing, and it’s more often an itch that I can’t scratch than actual pain, but the phantom sensations are really irritating.  I don’t know if I’m actually feeling something real but can’t feel the scratching that usually helps an itch, or if there’s really nothing there to alleviate.  And any time it could be classified as pain, I’m pretty sure it’s not real– it feels like it’s coming from some place right in the middle of all my silicone.  I know there’s not much I can do about it, so I’ve just taken to saying that my ghost boob itches and leave it at that.  It turns out, I’m not the only one who’s dealt with this, lots of other breast cancer ladies I’ve met say the same thing.  What a relief, there’s nothing wrong with me, physically or mentally.  At least as far as my ghost boobs are concerned.

5 thoughts on “My Ghost Boobs | Phantom Pain after Mastectomy

  1. My ghost boob has had a maddening itch for the entire four years I’ve had it. Drives me mad, having an itch that can’t be scratched. I also have had frozen shoulder, twice, and do have burning in the chest arm area, all from cut nerves, I suppose. I am metastatic and have had more fearsome things to worry about, until Perjeta worked it’s magic. Now I am going back to my PS to see if it’s possible to heal up this irritation. Without getting too radical, of course. :). Good luck, I hope yours eases.

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    1. Oh, Ann, I’m so glad Perjeta worked for you! That’s so exciting. Bummer about the itch, though. Thankfully, mine isn’t that persistent, just something occasional. Hopefully your surgeon can help you or maybe point you to a good PT who could help. Regardless, yay, Perjeta!

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  2. Hi Jamie. While I did not have a mastectomy, I experience the same kind of nerve weirdness that you do. Especially under my arm where they removed the sentinal node. When I put my deoderant on, I feel “ghost pain”. Also, on the very left most part of my left breast I have “the itch” and pain occasionally. All a result of nerve damage, and the doctor says it most likely will never return as it was. But, lucky to be alive.

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  3. I had my double mastectomy almost 18 months ago and sometimes the deep itching in my left breast makes me want to impale my breast with a sharp object (not really;). It is nice to not be alone. Phantom or not, the itch is so real. Thank goodness it doesn’t occur all the time but when it does begin, it seems like it’s a week or two before it goes away. I am in a period now, however, where it is driving me crazy. I’m surprised that I don’t have bruises from pounding.

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