Recently I received an email from a woman who prefers, for anonymity sake, to go by the name of Sweet Swede. She is also a breast necrosis survivor. Like me, she feels that other women need to know about this very real risk. She was kind enough to send me her story and her own breast necrosis photos. Here is her story:
Another Breast Necrosis Story
I was diagnosed with Ductal carcinoma in situ (DCIS) and since I had such large breast a “lumpectomy” didn’t scare me too much. There were several lumps found via a MRI with contrast material shot in through the nipple. I stayed overnight in the hospital and was released the next day. That night I was able to loosen the bandages and I noticed a slight darkening of the right nipple. I called the next day thinking the bandages were just too tight, and they had me come in the office. They poked the nipple with a needle several times, making it bleed and said it should be ok, but to come back in 3 days. I spent those 3 days on the computer, because to me it was obvious that the tissue was dying…it was turning a dark, deep black. It was all down hill from there, every appointment, they cut out more of the dead tissue and I had to change bandages twice a day. Which was brutal, because I had to look at it and I had to literally lift and push breast tissue back into my body and tape it together. Finally I told the doctor I could no longer contain the hole and the tissue with the average 4X4 that they sell over the counter, so he scheduled an emergency surgery to repair. This surgery was hard on me for some reason, I was extremely sick afterwards and a little pissed because the doctor took a skin graft from my leg, even though he said right then, he knew it wouldn’t take because the infection was too deep and widespread at this point (I didn’t even know I had an infection going in).
I went home and was sooooo over the moon excited because I actually had a breast again, it was smaller than the other but that awful, nasty, smelly tissue was gone. However the next day (Christmas morning) I woke up in such pain and the staples were oozing and leaking out pus. I hated calling the doctor on Christmas but I had to, I couldn’t take the pain. He saw me that day and again….it was all down hill from there. I was desperately wishing and taping the staples together every day, hoping they wouldn’t burst….but in the end, they all did and now I had a larger hole than ever and the amount of tissue hanging out was so nasty, I could hardly look at it without gaging, and I had to change bandages constantly (this is all while holding down a full time job). My breaking point with this doctor was when he sutured the drainage tubes to the side of my breast into healthy tissue and just didn’t think to give me any anesthesia at all…not even any numbing cream.
I went to my regular primary doctor and she pulled off the bandage, gasped and immediately jumped into action, getting me into a wound care facility. Now these people were awesome….I was so scared of pain at this point I doubled up my pain meds before going in, thinking they would hurt me like the other doctor had so often. They didn’t…and from that point on I didn’t take any more pain meds and they took such great care of me. The first thing they did was cut out all the tissue, leaving me with a 2 1/2 inch deep hole. I could stick my entire hand into the hole, turn to the side and you couldn’t even see my knuckles. According to the wound care Doc, all that tissue was dead anyway, and just getting in the way of healing. After awhile they attached a wound VAC to it and that was such a relief. I no longer changed any of my bandages, but I was chained to the device for 3 months. I had to carry it to work with me….I got over the embarrassment fairly easy by just making jokes. When people would ask, I would make crap up…like “Oh this…well I got busted drinking again and they were out of ankle bracelets…so I have to wear the backpack version” 🙂 LOL.
I am over two years out of that now….and can kinda consider reconstruction….but I am still too scared. Maybe in a few more years, I don’t know…I’m kinda used to my little fake booby. I do get tired of buying special bra’s though and my scars are still quite painful. The nipple area has gone keloid on me so its probably the worst. Most the time though Im just fine with the mess I got :), scars and all.
The last image is pretty much where it is today. Some of the surrounding tissue has stretched and the center (nipple) area is red, puffy and turned into a keloid scar. I haven’t the gut’s to try again…..especially after re-visiting these images. Maybe one day I will try to reconstruct, but I dont know. I might just live with what I have now.
Final phases of healing from the wound VAC. This is a wonderful machine but pricey. My ‘excellent’insurance wouldn’t cover allot of the cost, which was over $10,000 to rent the machine and $146.00 per day for supplies. I believe I had it on for over 60 days. After having to decline the machine at first for lack of funds, I was finally able to plead to the Wound VAC company and they granted me a hardship which covered 75% of what my insurance wouldn’t cover. If it wasn’t for that machine, Im told I could still be dealing with an open wound today….two years later.
Below are her breast necrosis photos.