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Many problems with Breast Reconstruction after Mastectomy
Hello everyone. I’m here to ask a few things about breast reconstruction after a bilateral mastectomy. I hope you don’t mind that I’m not the person with cancer, but I’m doing everything I can to help my beautiful wife through her experience which is not over yet. Cathy had both the mastectomy and beginning of the rebuild in one long surgery. The plastic surgeon closed her up after installing extenders on each side along with four drains. That kicked off a string of problems on the plastic surgery side, and we’re still not sure how it will end. .First there was a procedure to remove “mastectomy skin flap necrosis.” That seemed to go well, and the surgeon seemed completely satisfied.
But Cathy was still draining from one drain. Four weeks after the first surgery, the surgeon decided an infection was the cause, and told us Cathy would get surgery right away. Right there on 12/28/23 a Physician’s Assistant took a wound culture which came back 1/1/23 showing no infection. Even though he knew there was no infection the surgeon operated on 1/3/23.
No one ever told us there was no infection found before surgery. After looking at test records, I figured it out a month later on my own. Apparently the surgeon just removed fluid, telling me he thought that would very likely be it. At this point there were still two drains. It was all very confusing.
To make things even worse the draining still did not stop, and a third surgery was performed on 1/31/23. The surgery was labeled in our patient portal as removal of “encapsulation” which after looking it up didn’t seem to apply here. What really happened was the surgeon removed the extender from that side. The surgical notes under the heading “DIRTY OR INFECTED” were followed by text that says the infection was there before the surgery, and the surgeon wrote “I attest that the wound was dirty or infected.” Huh? The previous test said there was no infection. Saying it was just dirty seems odd. I told the guy that, and he quickly agreed there was no infection. If you don’t understand all this, you have company.
Now Cathy is looking at months to heal before the surgeries start over. She’s been battered by this non-stop torture.
I’m sorry this was so long. Can anyone share this kind experience after a mastectomy?
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I would sit down with that doctor and go over this history of events with a printed copy of those records in my hand.
If I was not satisfied with the answers, I would look for a second opinion right away with another surgeon outside that medical group. It is hard to change direction midstream, but it is her health and well being at risk.
It does seem a bit confusing to me, and I might just book that second opinion anyway if it isn’t a hardship for you. You might decide you are in good hands or you might decide to try something new.
Do you live anywhere near a teaching university, or large cancer center?
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4 ReactionsThey are the teaching hospital. The surgeon is a professor at University of Florida. That doesn't seem to matter. Lots of bad experience.
Maybe we could try the Mayo Clinic! Maps says less than 2hrs.
The doctor doesn't want to talk to me. I have already gone over his head, and he knows I know everything he and other provoders are doing. They would love to see us gone. The previous doctor put Cathy naked in front of 7 people. Yes she made her pull the pants down too. She's nuts.
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1 ReactionIf I lived 2 hrs from Mayo Clinic, I would do that! I have no idea what is going on with your current team but I have nothing but good experience with Mayo. Here is a link to request an appointment at Mayo.
http://mayocl.in/1mtmR63
I have found some pretty bizarre things with the medical in our little rural area, and I now just chose to travel 60 or miles for almost all medical care.
Your wife is traumatized battered and broken, this might be just thing to give her a lift.
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4 ReactionsUF is supposed to be 37th in the country. I think a lot of that is for their research. I have type 2 Narcolepsy which for me is debilitating. The UF doctor did nothing to help for nine months until another doctor finally gave me the diagnosis. Thank you very much for the last line in your comment. Recognizing that helps ease the pain some. Between the 2 of us it's really tough. We're both getting very expensive meds too.
I'm sure glad for this group, and the sleep one too.
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4 ReactionsI live 7 hours away from Mayo but chose to go there for my double mastectomy anyway. The staff there are amazing and made me feel at ease. I did end up having trouble healing after my double mastectomy in October. Although I wanted my expanders filled they refused to do so stating the healing process is important and they would not rush expansion. I am so thankful for their knowledge and compassion. I also wanted direct to implant, meaning no expanders but they also declined saying it is not the best practice. I feel I am in the best hands at Mayo and I hope you consider consulting them.
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9 ReactionsThat's great that you experienced compassion like that. We're not getting that. Of course the Mayo decision is up to my wife Cathy. Right now she fears the change because she's gone so far with University of Florida.
You provided great informaton though. I still want her to go to Mayo, so we'll see. Thanks very much.
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4 ReactionsI agree with the others. I am so sad for your wife and you for having to watch her be physically and emotionally tortured. There is enough information to at least take her and her medical records to another doctor outside of that institution. Many times second opinions may not highlight fault in the previous care however if in good hands, she/he will certainly get to the bottom of the issues and help redirect the clinical care path. See more than one doctor (or more if you have to) but I would NOT go back to her original surgeon if only because of his/her attitude.
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3 ReactionsMany of us have received second opinions. I actually visited 3 different institutions before deciding on Mayo (furthest away!). Your wife has to do what she feels is best for her outcome. I would be frightened to switch mid-treatment as well but open to the options. My husband always made our trips to Mayo like a mini get-away. We would go have dinner or shopping. Last visit he booked a hotel that allowed pets and we took our two dogs! Makes it more of an adventure than a treatment.
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2 ReactionsGood idea. We have 2 dogs also. Aren't they great?
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