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RBS (red breast syndrome)

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miamiujen
miamiujen Member Posts: 6
edited January 2021 in Breast Reconstruction

Has anyone else experienced RBS? Before I go into much detail, I'd like to find out if anyone else has experienced RBS in the last few years. I've been searching for more recent RBS info on the internet and there is hardly anything to be found. I developed RBS 3 months plus after I had my right breast reconstruction. I am not experiencing any pain, itching or discomfort. RBS is most likely a reaction to the Alloderm used during reconstruction. Infection was ruled out. I'd like to talk with someone else who has had RBS or has it currently and find out what their plastic surgeon has to say about it. I'm guessing it could take a few months or more to go back to normal color. Right now the lower half of my breast looks "sunburned". It started during the first part of March.

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  • moderators
    moderators Posts: 8,282
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    Bumping for miamiujen -- has anyone else experienced this issue?

    Also -- welcome, maimiujen, and we hope you find answers here! Please let us know if we can help with anything as you navigate the discussion boards and get support. We're all here for you!

    --The Mods

  • Dianarose
    Dianarose Member Posts: 1,951
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    The lower half of my left breast is red. It’s been years. I always assumed it was from radiation but it wasn’t red after my lumpectomy. It didn’t show red until after my mastectomy. I had never heard of rbs.

  • 70charger
    70charger Member Posts: 591
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    I have RRD (radiation recall dermatitis) which causes mine to always be red along my lumpectomy scar & boost area. Did you have radiation? Mine gets redder if hot or in the sun.

  • miamiujen
    miamiujen Member Posts: 6
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    Thank you! I haven't been on here for a while. I kind of gave up on anyone replying. It has been really difficult to get any current info on RBS, which leads me to believe that very few women have a reaction to the mesh (ADM) used in breast reconstruction surgery. I didn't have a reaction until just over 3 months post surgery.

  • miamiujen
    miamiujen Member Posts: 6
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    No radiation or chemo was required for the type of breast cancer I had (DCIS). So that isn't the cause of the RBS in my case. It is most likely a reaction to the ADM used in reconstruction surgery.

  • Shleif4Life
    Shleif4Life Member Posts: 1
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    Hey- I saw your post and wanted to offer you some information about RBS. I had a bilateral mastectomy on 4/19 followed by immediate reconstruction. Once my 4 drains came out after 11 days-I started experiencing issues. I felt like a bus ran me over, fevers, chills, and my left breast started getting red. I was diagnosed with cellulitis and put on augmentin. I was also being aspirated every 2 days bc of the amount of fluid I was retaining. Exactly 30 days after my surgery I was admitted to the hospital for what was believed to An infection, due to the fever, chills, and the fact that my left breast had about a 1 by 3 inch area of yellow discoloration with red outlining. I was put on the strongest IV antibiotics which I reacted to and had to be switched 4 times. Anyway, I had surgery on day 3 to essentially drain and clean out the infection- I was also told if the expanded was infected at all, it would be removed. Fortunately, surgery went favorably and the expanded was left in. The cultures all came back negative, however my WBC was 3.7 the day of my mastectomysurgery, 6.7 a week before the infection, 9 the day I went into the hospital and 14.4 the day of surgery (demonstrating infection). I stayed at the hospital for 5 days and was discharged on oral antibiotics and told by the infectious disease doc it could be a mycobacterial infection, which takes up to 6 weeks to grow. He wanted me to be on antibiotics for that long. However when I saw my plastic surgeon the day after I left the hospital, I decided to come off the antibiotics bc either way if it's that myco- it'll come back within 2 weeks of stopping meds. I figured why wait 6 weeks- lets do it now and find out. The infection site is still clear of the yellow, however my entire chest on both sides is red. It has gotten much worse over the last 7 days of being off antibiotics. My plastic surg told me today to put hydrocortisone on it until I see him in 6 days and If it starts to clear up, we'll know it's red breast syndrome. He said if it doesn't clear up, it could be something else, deeper inside (as originally thought). The infectious disease doc is anti expanders and would remove them himself if he could I'm sure, however I'm holding on to them as long as I can. From what I have red RBS can happen right after up to 5 months after surgery. I didn't find too much relating it to chemo or radiation, but I have not started either yet. I hope this helps you out a little bit!! good luck

  • moderators
    moderators Posts: 8,282
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    Hi Shleif4life-

    Thank you so much for sharing your experiences! It's so valuable to hear from others who've been there. We look forward to reading more from you, and sincerely hope your RBS starts to clear up!

    The Mods

  • nrioffe
    nrioffe Member Posts: 3
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    Within 4 hours of my drains being pulled i came down with a fever and chills. Was sent to the ER the next morning after i tried to sleep through the night. That didn't happen.

    Was admitted to hospital for 4 nights. My CRP was 200. Needed to be under 10 to be considered normal. My WBC was around 20 i believe.

    The nurses put in a PICC line before i was released where i was on continuous IV drugs for a month. Pipercillin/Daptomyacin

    After i finished the month within weeks my left breast relapsed. At least it wasn't both breasts this time.

    I have no fluid buildup which has been my saving grace for not getting the expanders out.

    Tho i cant seem to kill of this cellulitis because i can't get aspirated and try to grow any samples in a petri dish. For me its finding the right drugs.

    Currently im taking a pill that is $300 per pill! I think finally the swelling is reducing but i cant afford this pill forever!


    Can you please tell me the name of the strong IV antibiotic they put you on?


  • cupcakez
    cupcakez Member Posts: 5
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    Hi there. I was diagnosed with RBS soon after my double mastectomy with immediate reconstruction. I was discharged two days after the surgery and went to see my doctor for a follow-up. I believe I went back maybe 5 days later. Both of my breasts were very red at the bottom. It didn't even occur to me that something could be wrong. I just thought it was part of the surgery/recovery. My doctor immediately said I have RBS which is not very common but does happen to small percentage of women. I was admitted to the hospital for another three days to rule out infection. I was put on some antibiotics and was treated for atelectasis as well, which is another problem altogether. The redness did eventually disappear, I believe maybe two weeks later. And I've had some more complications along the way, but I had my exchange surgery in December 2017 and everything turned out well. Hope this helps somewhat.... :)))

  • miamiujen
    miamiujen Member Posts: 6
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    Thank you for telling me about your experience. I'm glad things turned out well after your exchange surgery. :) I've still got some discoloration from the RBS. It may be with me for a long time, it seems. But there is no hurting, fever or anything associated with it.

  • cupcakez
    cupcakez Member Posts: 5
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    I had no fever, pain or discomfort either associated with the RBS. It was just my body's reaction to the Alloderm. Hope your discoloration disappears soon!!

  • Dm39
    Dm39 Member Posts: 5
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    Hello all. I have developed a small red area on the cancer side. This is also the side I had some cell necrosis from the nuclear dye injection. I noticed about 2 weeks before my TE swap. My surgeon dismissed it at first saying it was irritation from my bra. Then right before my second surgery, I showed him again. He feels it could be capillary distention from the expanders. I just had my implants put in yesterday, and it is still there. Hoping it goes away. Btw my implants are half the size of my expanders. If you get to a place where you like the size of expansion, double it. They look nice but are too small for my frame. Already contemplating another surgery.

  • gtnicholson
    gtnicholson Member Posts: 1
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    My wife is currently experiencing what we believe is RBS. She also had DCIS with no chemo or radiation. However, she did have leukemia ~5 years ago with chemo, full body radiation, and a transplant. She had the affected breast taken care of (skin and nipple sparing) in April and had no reaction to the Alloderm. She had the other breast taken care in mid August. The pink-to-red coloring started about a week ago in the recently mastectomied breast. Her surgeon put her on two antibiotics just in case there is an infection. However, she has no other symptoms that indicate it is an infection. Her symptoms are more consistent with the RBS ones so many of you ladies have described on this board. She sees her surgeon again in three days, so we’ll see what he says about RBS. Good luck to all of you in your recov

  • moderators
    moderators Posts: 8,282
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    Dear gtnicholson,

    Welcome to the BCO community. Thank you for sharing your wife's story here. We hope that you will find support for her and yourself and helpful information along the way. Please stay connected here and let us know how we can be of help. The Mods

  • Ibethewife
    Ibethewife Member Posts: 6
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    Hello all. I don’t post much, but this thread caught my attention. I had RBS when my implant was changed out 2 years ago. My PS put me on two antibiotics to make sure no there was no infection. It did take a few months,but the color went back to normal. Basically he told me is it is caused from our bodies are rejecting this specific tope of derma matrix. What I remember most was how miserable I was.

  • Jen1969
    Jen1969 Member Posts: 3
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    Hi, I’m new to this forum (so don’t know all the acronyms etc yet), and your post caught my eye. I had a double mastectomy in mid August (DCIS and Brca1), direct to implants, and not sure whether this is technically what I had, but both my breasts did go quite red. My nipples looked to be dying off too, so I was taken back to surgery 9 days after initial op to exchange implants for expanders and nipples removed. It was thought that I had an infection but CRP was only 15 and pathology showed there was no infection.

    The hope with the expanders is that once they’ve done their thing, I’ll be able to exchange backto implants without my body kicking up such a stink. Hopefully I don’t react the same though. RBS was never mentioned and all the medical personnel seemed to be a bit perplexed into what the actual cause was

  • moderators
    moderators Posts: 8,282
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    Hi Jen, we're sorry you're going through all this... but wanted to say welcome! We're so glad you've found our Community and hope our always helpful members will weigh in shortly with their personal experiences and advice. In the meantime, you may want to read the following article from our main site on Implant Reconstruction: What to Expect.

    We hope this helps! Please, continue to let us know how you're doing!

    The mods

  • Jen1969
    Jen1969 Member Posts: 3
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    Thanks so much for the lovely welcome. I’ll be sure to have a good read of that link. Thanks :)

  • Canadian21
    Canadian21 Member Posts: 4
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    Miamiujen how did everything work out for you? I believe my sister has red breast syndrome. We are over the top worried . She had her surgery 8 days ago and its on both breasts, one redder than the other. She has no pain or fever and is on an preventative antibiotic.

    Would you mind sharing your symptoms, and how long it took did to clear up? Was your very red? What can we expect and how did you know that it was not an infection.


  • DIVA56
    DIVA56 Member Posts: 1
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    yes I am 8 weeks post OP double masectomy with tissue expanders. About 3 weeks ago my left breast got red towards the bottom and next to clevage. My PS admitted me to hospital for IV antibiotics and drained a lot of fluid and sent off for culture, which came back negative for infection. Went home on oral Cipro and discussed possible “red breast”. So three days ago it came back, so now I am taking Doxycycline Hyclate, which has really worked, except this red spot in my clevage that will not go away. I am filled 700 cc and ready for explant and silicone implants. I really think I am hving some kind of allergic reaction, this is the breast that had cancer and three nodes removed, the other breast was cancer free and having no complications. Sorry for the long text, but I am not sure what to do at this p

  • jaybird627
    jaybird627 Member Posts: 1,227
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    Hi.

    I'm looking for help myself. May have RBS. Not sure? Redness and irritation from expander on R breast, previously radiated 13 years ago. Newly radiated breast with expander has no issues. Lumpectomy/radiation R breast. BMX April 2018. Radiation to L breast Sep 2018.

    Looking for answers. Consulting with PS next week. She suggests taking them out. Will seek 2nd opinion. L breast okay. R breast irritated from implant. I have thin skin and am thin. REALLY need answers and a solution!


    J~

  • SpunkyGirl
    SpunkyGirl Member Posts: 16
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    Hi Gals,

    It's been a looooong time since I posted, but I'm doing great and feeling really blessed. I underwent corrective reconstruction just over two weeks ago, and I too have RBS. The surgeon put me on a course of antibiotics, but as soon as I stopped them, the redness came back. In my admittedly limited review of RBS, it is the body's allergic reaction to the Alloderm. I know that when I see the PS next week, he will want to restart the antibiotics. What I read (and there's not a lot of info out there on it) was that since it's an allergic reaction and an inflammatory response, some suggest treating with NSAID and allergy medication. So I know this sounds crazy, but I started just 200 mg of ibuprofen 3 times a day, and a Zyrtec at night, and it’s definitely helping. My experience is that the PS have to be very cautious in ruling out an infection, but I have no signs of an infection, and the literature I did read soggests that sometimes RBS goes away over time. I figure I have nothing to lose by taking a cautious approach that maybe my PS wouldn’t otherwise be comfortable with. But I know if he has to go back in there, I will have a much higher chance of losing that implant. Maybe I’m being stupid:). I’ll let you know how it goes.

    Happy New Year to all,

    Spunkygirl

    P.S. I also read that the antibiotics help because they also have anti inflammatory properties, but an over the counter NSAID didn’t sound like a bad idea to me.

  • Fryda
    Fryda Member Posts: 2
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    https://frydasmastectomy.tumblr.com/post/182010850...


    I'm grateful for this forum, and that you ladies mentioned RBS, a syndrome I was entirely unaware of. My doctors are a bit useless. Looking forward to explanting the expanders, hopefully for a DIEP or a graft or something less disruptive.

  • Labmom3
    Labmom3 Member Posts: 1
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    Hi.

    I am learning so much about breast cancer, implants, etc. I know all about alloderm and such as I've had many!!!! knee surgeries with cadavar parts, etc. I have an alloderm pocket as well with a TE under the muscle. it's been 4 weeks on Friday that I had my mastectomy. I had a fill last Friday and since then, mostly at the end if the day, I have extreme internal itching that I can't scratch and get any relief. I just massage it which seems to help. No fever or chills. But yes, my breast is slightly red. It's not painful, though. Sometimes it is, but nothing to call the PS about. Just random pangs. But yes, at the end of the day like I mentioned, the itching is unbearable! It seems like the bra, movement, everything I've done during the day affects that breast. It's probably just irritated. I've never heard of RBS before. So this thread is really informative.

    My husband is a PCP and doesn't seem to concerned about the breast appearance, but doesn't like the redness so much. I see the PS on Friday and will talk to him about it. I was taking Advil liquigels for a few dates for general body pain, and now realize my breast wasn't so itchy. I'm going to try it for this itching!

    Take care everyone and stay warm!

    Tammy

  • frufru
    frufru Member Posts: 1
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    I had redness after revision of my reconstruction on one side, and my PS told me it was RBS due to the alloderm. It went away after a few months, but the skin in that area is quite thin and has developed a wound that won't heal along the incision line. Now the PS recommends another revision, with smaller implants in order to reduce the tightness of the skin and hopefully help the area heal. Possibly the RBS was a first sign that the skin was quite thin in that area?

  • PaulaAtlantaGA
    PaulaAtlantaGA Member Posts: 65
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    Good Afternoon,

    I had my left breast implant removed four days ago. I'm not sure if what y'all are calling RBS is what I have. I have cellulitis, and mine was resistant to two weeks of Kflex oral antibiotics, and two weeks of Ertapenem and Daptomycin together given as IVs. When I felt my left lymph nodes getting angry (R = 14 nodes removed), I knew I couldn't wait. Cellulitis can get quite serious. Some differences that may apply: my redness grew, slowly, but it grew; it became a deep shiny red and was really warm to touch, and I did not run a fever, common to cellulitis.

    In short, as with anything having to do with these breasts, I really advise letting a doctor see it.

  • Kathyt865
    Kathyt865 Member Posts: 2
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    Hi to you all. I'm not sure if I had a real RBS but this was my experience following my exchange to silicone implants following a bilateral mastectomy in July 2018. I came out of surgery with a very tight surgical bra. My PS told me to wear it 23/7 "to keep your implants in place", for a month. Three days later I noticed the lower half of both breasts were a somewhat dark pink and warm to the touch. My doc put me on antibiotics though I had no other signs of infection - fever, chills, drainage, etc. A couple more days of experimenting on my own I noticed the 'pink' and warm went away with the bra off. My PS finally thought it was a mild allergic reaction to the Alloderm. From then on I went bra less - no more issues. Tight compression of the bra may have been contributing? I am (I think) having some placement issue now that I will be addressing with him....hopefully not because I didn't wear the bra. Just wanted to add my experience.

  • Barlar
    Barlar Member Posts: 3
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    SpunkyGirl: Oh girl right here with ya. Very interested in how you are doing. I had my prophylactic double mastectomy August 29th 2018. Had expanders under the muscle placed at that time. My left breast developed RBS with a seroma. Finally after drawing out fluid and antibiotics it ended up busting and draining and i had to have the expander removed. My right side was great and fine to whole time. I am expanded to 850ccs on that side. Thirty days after the expander was removed the right breast went red. I have had low grade fevers along the way. It has now been 10 weeks that the left expander has been out and the right breast is still producing fluid that is drawn out every week. I just don't know... I have researched everything and there isn't a lot. Has yours gotten any better?

  • Barlar
    Barlar Member Posts: 3
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    Oh girl right here with ya. Very interested in how you are doing. I had my prophylactic double mastectomy August 29th 2018. Had expanders under the muscle placed at that time. My left breast developed RBS with a seroma. Finally after drawing out fluid and antibiotics it ended up busting and draining and i had to have the expander removed. My right side was great and fine to whole time. I am expanded to 850ccs on that side. Thirty days after the expander was removed the right breast went red. I have had low grade fevers along the way. It has now been 10 weeks that the left expander has been out and the right breast is still producing fluid that is drawn out every week. I just don't know... I have researched everything and there isn't a lot. Has yours gotten any better?

  • Barlar
    Barlar Member Posts: 3
    Options

    Oh girl right here with ya. Very interested in how you are doing. I had my prophylactic double mastectomy August 29th 2018. Had expanders under the muscle placed at that time. My left breast developed RBS with a seroma. Finally after drawing out fluid and antibiotics it ended up busting and draining and i had to have the expander removed. My right side was great and fine to whole time. I am expanded to 850ccs on that side. Thirty days after the expander was removed the right breast went red. I have had low grade fevers along the way. It has now been 10 weeks that the left expander has been out and the right breast is still producing fluid that is drawn out every week. I just don't know... I have researched everything and there isn't a lot. Has yours gotten any better?