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TE TROUBLE

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  • rrshannon
    rrshannon Member Posts: 59
    edited May 2019
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    Hi everyone, did anyone have to have there TE taken out due to large hematoma then put back in later ? My TE had to be taken out 5 hours postop and we will be adding it back 2 months later.

  • ygbowl
    ygbowl Member Posts: 1
    edited May 2019
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    I received a Double Mastectomy with Reconstruction in Jan 2019. I have been going back and forth to the PS every 2 weeks to get my expanders filled since then . My right was always distorted looking with a crease in the bottom. He said it would fill out eventually. ( It didnt) After the first fill. I begin to develop fluid around each breast that had to be drained. Well now months later it looks like both expander are leaking. I wondered why I couldn't get to the large size that I wanted. I am so disappointed and sad. My PS (who is very nonchalant about it ) said I could have the expanders replaced or just have surgery to place the implants and maybe go bigger later. I don't know what to do. I'm so tired of it all after Chemo the Double Mastectomy. I just want my life back to normal and I need to get back to work. I have been off since Aug. Any advice is welcomed. Take care and God bless you all that are going through this awful journey


    Dx:TNBC July 26,2018, Port Placement and Chemo Aug through Nov 2018, Double Mastectomy with Reconstruction Jan 2019

  • juliesim
    juliesim Member Posts: 36
    edited June 2019
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    Hi everyone,

    Hope it's the right thread to ask.. I saw my PS yesterday with my subpectoral TE already filled with total of 540cc and got my last 60cc. Never has major issues with expansion procedure, just some discomfort, maybe moderate pain at the pec muscle area which could be easily treated with ibuprofen.

    After my last fill I am having sharp pain inside my breast shooting to my back and to my arm. It gets worse when I am trying to lie down, forget about lying on the opposite side - it feels like lying on a knife.

    It's a long weekend here, and I am supposed to leave the city right after the weekend. Is it normal? Should I worry or just take it easy, take stronger pain meds and wait?..

  • moonflwr912
    moonflwr912 Member Posts: 5,938
    edited June 2019
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    rrshannon, I had my left removed due to infection. Its lucky this is not a race, because sonetimes it takes more time than we plan. As dissappointing as it is, you WILL get there. Hugs.

    Ygbowl, what a position to be in. Ugh. If you want bigger implants i suggest take the slow route and get replacement TEs. If you get squishies in a smaller size, there could be some insurance issues, as it could be considered cosmetic if you go bigger. Replacing the TEs count as continuing care. Not really sure, but you dont want a nasty surprise!

    Much love

  • juliesim
    juliesim Member Posts: 36
    edited July 2019
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    Hi all,

    I am looking for some advice with my subpec TE. I will be starting radiation therapy in a few days, so I am short of time to make a decision. Last TE expansion from 540 to desired 600ml made me uncomfortable, with lots of pain and pressure. I can either leave it and hope for the best, or take some saline from the expander prior to my planning CT. After the CT changes to expander cannot be made..

    If someone has been through radiation with TE, could you please share your experience? My nurse is suggesting it might get better as time goes by, but I am wondering what usually shrinks during radiation- my skin, or expander, or both?

    I also have scoliosis, so my nights have been very uncomfortable.

    Thank you!

  • jaybird627
    jaybird627 Member Posts: 1,227
    edited July 2019
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    Hi JulieSim,

    I had radiation on my TE side with no issues. My TE was not subpec though. I had TE replaced with implant 6 months later, also over pec.

    My skin recovered just fine. Radiologists said the TE somewhat protected the skin?

    Good luck!

  • juliesim
    juliesim Member Posts: 36
    edited July 2019
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    Rhank you Jaybird. Hopefully it will be my case too.

  • moonflwr912
    moonflwr912 Member Posts: 5,938
    edited July 2019
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    julie, wondrring how you are doing. And thx jaybird for answering.

    Much love

  • juliesim
    juliesim Member Posts: 36
    edited July 2019
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    Moonflwr - thank you for asking. I was actually very close to canceling my planning CT date and I have already booked an appointment to take some volume from the expander, it wasn't recommended by PS but I was in so much pain and discomfort that I didn't really care. And then, literally two days prior to the appointment, I was at the back seat of my car with my little one, and she (totally by accident of course) hit my breast and displaced the expander. Believe me or not, it moved to a perfect position, leaving me with sore pec muscle but totally without nerve pain! It was later confirmed at my doctor's office that the expander has actually moved. I did my planning CT on time and started radiation therapy week.

    So if someone need to adjust expander placement, feel free to contact my daughter, she know what to do..

  • moonflwr912
    moonflwr912 Member Posts: 5,938
    edited September 2019
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    So happy to hear it cleared up, although I wouldnt reccommend that particular way! LOL!

  • Luckymomof4
    Luckymomof4 Member Posts: 4
    edited October 2019
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    I am 4 weeks post op from a bilateral mastectomy with TEs. I had my second fill yesterday and my rightTE today has shifted/rotated completely. I felt a pop and some pain and immediately knew something was wrong. I did contact my PS who said it's not an emergency but he will see me Wednesday (that's when he does clinics at Moffitt) Has anyone had this happen nd what was the solution if any? The magnet used to be at the top of my breast and is now at the bottom, most of the liquid has risen to the top and pushed into my upper chest near my collarbone....the bottom below the incision is flat and with little saline. I am completely lopsided and have a marginal amount of pain (just when I was feeling a little like ,self again🙁)

    I admittedly am freaking about the possibility of another surgery so soon. Anyone have any input?

  • Ldershaw
    Ldershaw Member Posts: 1
    edited October 2019
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    I just found out this week that my TE rotated. It scared me..will i need another surgery? Going to see PS next week

  • CENOK2017
    CENOK2017 Member Posts: 54
    edited January 2020
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    Did any of you feel TE was too high on chest? And, if so, was implant lower?

    Thanks in advance

  • LiveLoveLaugh2020
    LiveLoveLaugh2020 Member Posts: 173
    edited January 2020
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    CENOK yes the TE's sit very high compared to implants. I just had my exchange surgery a little less than 2 weeks ago and after exchange your implant will not be as high. I almost miss how they sat lol just not how uncomfortable they were!! :)

  • CENOK2017
    CENOK2017 Member Posts: 54
    edited January 2020
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    Live, Laugh, Love 2020,

    Thanks so much for your reply....I was freaking out a little!

    I’m happy your exchange is over! Did you have drains? I forgot to ask my PS.


    Carol

  • LiveLoveLaugh2020
    LiveLoveLaugh2020 Member Posts: 173
    edited January 2020
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    You're welcome. No drains...I was told to expect them as to not be disappointed but don't be surprised if you don't have them. I was soooo happy when I woke up lol So I hope no drains for you too.

  • moderators
    moderators Posts: 8,287
    edited January 2020
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    Hi All,

    One of our writers, Cheryl, would like to talk to people who has had a great caregiver they could speak on behalf of following a mastectomy with reconstruction. OR, directly talk with the caregiver themselves. This information would be so helpful to writing the piece she is working on. Please PM us if you are interested, or your caregiver.

    Many, many thanks!

    The Mods

  • Rennasus
    Rennasus Member Posts: 642
    edited February 2020
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    Hi Ladies, it has been a while since I checked in here at BCO! 9 years ago (on Feb 3, 2011), I had my double mastectomy with Tissue Expanders placed, and my journey with TE trouble began soon thereafter. To all who are starting on this road, or are stuck in the middle of it, don't despair! It takes time but it will work itself out in the end. There is help here: Ask questions. Gather advice. Make decisions. Repeat. Sending hugs to all!

    -Renn

  • CENOK2017
    CENOK2017 Member Posts: 54
    edited February 2020
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    Hi Live, Love, Laugh,

    It's me again about how high my TE is. It sits almost up to my clavicle! Was yours THAT high? Am disappointed cuz exchange has been delayed by two days. How is your implant feeling?

    Caro

  • LiveLoveLaugh2020
    LiveLoveLaugh2020 Member Posts: 173
    edited February 2020
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    Hi Cenok,

    I don't remember if they exactly sat there but it pretty much felt like it. So high and perky and uncomfortable.

    Don't worry your implant will not be that high! I kind of miss how perky/high mine were lol (but definitely not the torture associated with it).

    My implants feel pretty good. They felt amazing the first two weeks so comfortable compared to the TE's but lately they feel a little hard/pain twinges. But I don't notice them much and they don't bother me until I'm trying to sleep. So I guess I can't complain :)

    I'm sorry that your surgery has been delayed. Thankfully it is only by a couple days although I'm sure it's still upsetting. I hope all goes well. Keep us updated :)

  • puredust
    puredust Member Posts: 2
    edited February 2020
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    Hi, Dear ladies,

    First time here. Can anybody share your experience if you got TE removed due to infection? How long did you wait to have another try and did you still try TE or try tissue flap? In my case, I had left side skin/nipple spare mastectomy immediately followed by TE placement on 12/30/19, all were well (no need for chemo or radiation) until I got infection and had new TE replaced on 2/3/20. Unfortunately three weeks later lots of fluids coming out of my nipple area even though I am on ABX, therefore my PS removed the TE on 2/25/20. Now I am flat. PS said I could try after the left breast was completely heeled. Some document online says if a patient has complication during TE, she will also have high risk to encounter complications after the implant, so I highly doubt if I want to try this again. Appreciate if you share your experience.

    Thanks!

  • jrnj
    jrnj Member Posts: 407
    edited February 2020
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    Puredust, my TEs were removed on October 30 due to infection. At the time I searched "TE infection" and found a lot threads with the topic. I also find sometimes searching google provides better results for this website. There were a lot of people that experienced this and were successful later with implants. My issue is I'm doing chemo and radiation. I was going to try putting expanders back in, in between chemo and radiation. After consulting with another PS and thinking about it, I decided to do DIEP with possible small implants after. I don't want to delay radiation and the skin can't be expanded after. They won't do DIEP until 6 months after radiation. I'm going to try and gain weight to avoid implants. If you are not doing radiation, you still have more options. I'm looking at it as a blessing in disguise. I was rushed into making a decision, than after I had more time to research and think. There are also several threads on above or below the muscle, which my surgeon did not discuss with me prior to placement. Mine were above the muscle. My Dr. tested my infection, it was pseudomonas, a hospital infection.

  • puredust
    puredust Member Posts: 2
    edited February 2020
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    @JRNJ, thank you for the suggestion! Let me do some google search w/ the key word.

  • Divergent
    Divergent Member Posts: 49
    edited December 2020
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    Hi ladies, I'm hoping to get some advice about the problems with my TE. I finished radiation about 9 months ago and my skin looked ok up until 4 months ago. I ended up with a skin infection that was cleared up with antibiotics. But my skin started shrinking dramatically and hasn't seemed to stop. The bottom of my breast developed what looked like a blister. My PS says that the skin is thin and she recommended that I have my TE removed due to the possibility of infection and due to possible Covid restrictions on the number of surgeries in the next few weeks. She then said she could recommend other PSs to finish the reconstruction.

    I just don't want to remove the TEs at this point. I feel like she just gave up on me and I don't feel she has my best interests in mind. I'd really like to get the DIEP flap procedure ASAP instead. But is that crazy to do because of Covid and the shrinking of my skin? I don't want to rush into this and get poor results. I've been talking with another PS that is willing to do the DIEP. I'm having trouble deciding what to do. Any thoughts or advice would be great.

  • jrnj
    jrnj Member Posts: 407
    edited December 2020
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    Divergent, you can read my post above for my history. I have diep scheduled for 1/7/21.I'm a little concerned they might delay my surgery due to Covid But so far it's a go. I'm in kind of a hot spot in central Jersey. I hate the hospital and left last year with an infection but I'm hoping it was caused by the TEs not the hospital.

  • bluewillowskys
    bluewillowskys Member Posts: 268
    edited December 2020
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    so i dont have to read the whole thread....


    Has anyone had successful implant AFTER rads with using TEs after the rads?

  • minustwo
    minustwo Member Posts: 13,198
    edited December 2020
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    BLue - posted to your question on another thread. Search for fat grafting after rads to prep for implants

  • JanetM
    JanetM Member Posts: 47
    edited May 2021
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    Had BMX in Nov 2020 with planned DIEP flap that failed during surgery so I ended up with TEs. Had some healing issues on the right side and a seroma formed that needed to be drained of 130cc of fluid but thankfully after culturing there was no infection. Skin on both sides was thin so a round of fat grafting was done prior to having any fills done. My first fill was finally at the end of April. I am now at 250cc on both sides but the right side is very tight and hard while the left is soft. At my fill last week my PS said that he might need to go in and remove some scar tissue that has built up around the right expander. Not sure how that can be done without taking that expander out and then having to start over again.