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Double mastectomy caused rare infection
My daughter discovered that she had the BRCA gene. She has 3 babies, and wanted to be able to be healthy for her kids. Her doctor recommended a double mastectomy, which she did. She had so many problems after the surgery. Long story short, she was infected with a rare infection (serratia ribudea) from the original surgery. She has made multiple surgeries, many many trips to the e.r. Now, years later, she has no boobs.....just a mutilated chest that still holds the infection. The impact it has made on her life is devastating. And no one seems to be able to help her. She's in her 30s.....she wanted to save her life by getting the mastectomy, only to be completely mutilated, and is still at risk of dying from the infection. She is both physically and mentally destroyed. I need to help her but I don't know what to do. Can anyone help me?
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I’m not sure where your daughter has received treatment but finding the best infectious disease specialist might help.
US News and World Report has always used a set criteria to find the best hospitals and doctors. You can find a specialist near you on this site:
https://health.usnews.com/doctors/infectious-disease-specialists
A search for the best facilities for infectious diseases brought up these two. You may be able to request a second if you live too far to get treatment there.
Mayo Clinic
The Mayo Clinic's Division of Infectious Diseases is one of the largest and most respected practices in the world for treating and diagnosing infectious diseases.
https://www.mayoclinic.org/departments-centers/infectious-diseases/sections/overview/ovc-20456906#:~:text=Infectious%20diseases%20doctors%20in%20this,Clinic's%20campus%20in%20Rochester%2C%20Minnesota
Johns Hopkins Medicine
The Division of Infectious Diseases at Johns Hopkins is known for its excellence in the study and treatment of infections.
https://www.hopkinsmedicine.org/infectious-diseases
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5 Reactions@jenniferw1469
I am so sorry your daughter is going through this. Like you, I’m a mom of two daughters, and I, too, would be trying desperately to find her help.
Through my own treatment, I have come to understand that where you get treatment for breast cancer and who is on the care team truly matters in crucial ways. The stakes are high. It’s absolutely worth finding a nationally ranked center that is accredited by the National Accreditation Program for Breast Centers. They will provide fellowship-trained physicians who provide the most advanced medical and surgical care. It may not be convenient depending where you live, but it’s crucial to have this level of expertise.
She’s luck to have you to love her and help her. ❤️
Good luck and I hope you find the best care team for her.
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4 ReactionsI've never heard of that type of infection so I dont have any input there, but I second what @triciaot said that I would prioritize meeting with infectious disease doctor from a top hospital, like a teaching hospital. Maybe even ask ahead of time if that doc or office has experience with that specific infection bacteria? It sounds like perhaps all the subsequent surgeries went badly b/c the initial infection was never properly treated, so good infectious disease doc should hopefully be able to get to the bottom of it and take care of it. Once its truly gone, a good breast recon plastic surgeon can help her if she wants recon, lots of options. But I wouldn't even think about or attempt any recon with any kind of latent infection.
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2 ReactionsYes, that is the plan. She has to get rid of the infection, which seems to lay dormant. She thought it was gone, but a workout flared it up, ending up in the e.r. again. Now they say they want to take her nipples. She's already so mutilated, I don't know how they will be able to reconstruct them even after the infection is gone. I am worried about her, not only for her physical well being, but her mental well being. I can't help her, but I just have to do something to help her get proper care. She was told that only 50% of the people who get this infection survive. She has so many questions, as do I. We just can't seem to get any answers.
Wow, that is a scary infection with a 50% survival rate. I do truly understand her concern regarding the scars and look of her chest, but there are amazing thing they can do to reconstruct nipples or the 3D tattoos. Many women with breast cancer have their nipples removed with their mastectomy and its really amazingly good how they can look afterwards once reconstructed. Assuming she can wait without further impacting her health, I would definitely push to get an infectious disease doctor who has already successfully treated this type of infection (preferably multiple times) before more surgery / treatments. Mayo has a great reputation for solving problems that no one else can so I'd go there if you haven't already and are able to do so. I also know that any time of truly rare or high contagious type infections must get reported to the CDC - so there is a database of it somewhere. Idk if thats something that you could find and access, but thought I'd mention it in case it could be helpful to you. If you could find a resource like that, perhaps it could lead you to which hospitals have the most experience treating it. Some big hospitals have medical libraries that allow public access and perhaps one of their librarians could help track it down. Also I think Mayo publishes some of their research online for public access and of course there's always pubmed - may be worth searching there for some treatment clues for next doctor consult.
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1 ReactionThank you!
I had the same infection after my double mastectomy. It was terrifying. I was able to get reconstruction surgery after finding a better, more experienced plastic surgeon. I’ve had 4 breast surgeries total, two of which were implant surgeries but I’m fine now. Far from perfect but feeling and looking much more like myself than when I had my infected tissue expander removed. I was flat on one side while going through chemo and was really in a bad spot mentally- I’m about 18 months out from my last and hopefully final reconstructive surgery and doing fine.
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4 ReactionsAlso should add that when I first got sick with the infection about 2 weeks after my surgery, I was hospitalized for one week and then sent home on iv antibiotics through a picc line. That last about 2 weeks or so and the infection did clear up completely, although I hear it can remain dormant- it didn’t come back in my case but delayed my chemo treatments by several weeks so that was stressful.
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2 ReactionsWow, glad to hear you're doing okay now @cancerwifemom . Did you ever find out what caused it (iow was the expander itself contaminated or do they think you picked it up from the hospital itself when they were doing the procedure or something else)? I'm still trying to decide on what type of recon and infection is one of my biggest fears for implants. I've talked to a few different plastic surgeons and they each tell me something different about the infection risk and what they do to prevent it so I'm not sure what to believe. I understand that infection rates are much higher for BC patients than for implants for just augmentation.
We actually don't know. At first, we thought it came from the surgical equipment. Then we were told it was the expander. Now, everything has been removed, yet the infection remains . It's very frustrating, because no one seems to be able to give any answers.