Having been diagnosed over here in the united kingdom, I did all the on line research I could find regarding this disease and it sounded so straight forward but somewhat scarey. One operation down adn the test results back, bad news, no clear margin surrounding the excised lump, back in 4 weeks later for more tissue out.
Back for results and still no clear margin, back in after christmas and 3rd operation done, fingers crossed this has all of it and got the results this Monday to be told they found even more cells and less of a clearer margin than before.
As this is rare I am reaching out to anyone else who has this, I have to go in for an MRI to see if they are able to visualy spot the extent of the cells and do a 4th operation to remove the remaining bits, but they have said that is is likely a masectomy is more probable because the tests are not always clear and as they are having problems finding the edge of the disease, its possibly too big to leave in, whip out all breast tissue to be safe.
I have had 3 rotten operations, pretty fed up with it all and up till monday I didnt know what the future held for me, now I know and can prepare myself. The first op was painful, the second one was excrutiating, the 3rd one I had so much fluid built up, it burst my wound opening and to this day I still have fluid coming out (although slower most days than the day it burst, yesterday was a bad one) plus a nice half inch hole in the wound site which is slowly closing. They warned me each time that the pain would be worse, the fluid build up, the discomfort in the breast etc, and they were not wrong. They have also said a 4th op will create even more potential issues and are hoping to put it off for a little longer to allow me to actually heal up a bit more before doing anything else, have to wait 6 weeks for the MRI anyway so hopefully that will help.
Not moaning, just cant believe that being told its not malignant and great news on that front, 5 months down the line I am still under going tests and facing another (at least) operation.
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