TE TROUBLE
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So sorry to hear that Denise. I lost my left TE 3 weeks ago. Not sure what I'm going to do going forward Will be meeting with my PS next week to figure it out.
Have a better 2014 with only goods things in your life!!!!!!
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Shelaghin, I am glad you made your decision. That means you have a goal now and it's easier than not knowing.
Denise. I am so sorry. Your implants didn't go as planned. I know how you feel. Disappointed doesn't cover it! But get healthy first. Finish chemo. Then get as healthy as you can before you make a decision on what to do. And you might keep the left one. You never know. I was uneven for 2 years. It can be done. Sucks but then this whole cancer thing sucks! I used my Amoena camisole for those 2 years, filling the puffs, removing stuffing, refilling, etc as needed. Give yourself time to think now. When you first are dx, you just want everything done right now. But now time is forced on you so give yourself time to think about what you really want. But i am sorry it didn't work right the first time. Much love.
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Denise, well that's bad news. Not what you hoped to hear but there is a chance it could turn out ok. Why does your doctor think you could lose the TE? Is it the same condition that caused you to lose your other TE? Did you have drains? Did fluid continue to build up after the drains were removed? Did the doctor remove it? Sorry for all the questions. Just trying to understand. Did you develop a seroma and/or an infection?
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Babs, what happened to make you lose your TE? You'd had it for 3 months? I guess you were filled and ready for your exchange. Is your other one ok?
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Yes, I had it for about 3 months. I was one week out from my third and last fill. After my second fill, I developed a red rash? cellulitis? infection? on my left side, I spent 6 days in the hospital on IV antibiotics and was doing fine for two weeks when all of a sudden the red rash came back. The infectious disease Dr felt that it had to do with the TE so he felt that my PS should take it out ASAP. The second time it happened, the area that was involved was larger and he was worried that if it came back a third time it would be over a larger area and could potentially be a "real" issue. Since it was taken out, the redness and the "rash" type of thing disappeared and has not come back. Not all of the tests on the TE have come back yet but those that did have been negative.
The PS, the BS, and the infectious disease Drs all think this happened because of the radiation I had on my left side. They can't think of any other reason for this. And, we're all not sure exactly what it was that I had-weird! My right side is fine-no issues. Now I have to decide what I intend to do on my left side. I won't go the TE route again-too much involved. I'm thinking of a very small implant with fat grafting. If I do that then my right side will need to be made smaller. They won't be symmetrical no matter what I do since I don't have enough fat to even them out but I don't care. I want some fullness at the top so I look ok in clothes. I can always use a pad to make me look more even. Meeting with the PS next week to discuss my options going forward.
Oh well!!!!!!
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Babs, I hope you find something that will work for you.
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I am keeping my finger's crossed for you Denise. I hope you expander makes it, and you can have your exchange. It's all so frustrating. I almost lost an expander, but ended up being okay. Hang in there. Eat lost of protein, walk, and rest.
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Thank you Babs, Monica, Sandra, and Goldie! You ladies are my saviors since you have already walked this path and totally understand me.
Sandra - my problem is my body just keeps producing fluid. I had drains in for 13 weeks. They finally had to pull them so I could start chemo. Then they were drained 1-2 X a week in the PS office. But righty filled with so much fluid that it started to seep out from the incision line. So PS removed it and now I have an open wound there that nurses come to fill with gauze every day. Lefty has been ok except that it still needs draining of about 125ccs a week, and a piece of drain is still in there that broke off when the drain was pulled. It is beginning to get red and shiny now. PS says chemo is not helping it. So discouraging since she was done with fills and I thought at least one side was out of the woods.
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Wow, so sorry to hear of these troubles ladies with your TE's!! I hope the best outcome possible for ya'll. These dang TE's are so complicated, does anyone have them and not have any issues? lol
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Denise. Hugs girl. Chemo surely does NOT help. I think i lost my 2nd try because I wasn't recovered enough. So whatever happens with lefty, you will get through it. Purple is the latest of those on this board to have had to pack an open wound from TE insertion and removal. If she checks in maybe she can give you some tips and advice. You are not alone. People have had that happen and gone on to have another try. Or not. Choice is yours. You do what you want to do. But we know how d*MN disappointing the op to remove a TE or Two is.and the fact that you were stretched to the max will be helpful if and when it's time to make you're decision..but you are going to need an op anyway even if you don't go on with reconstruction. Because they will have to remove the loose skin and tidy you up if you don't go on. So you get to decide which op you want! Wheeeee are we having fun yet??? LOL. I have kept redefining my definition of fun until I can answer yes. LOL its pretty different now from what it was. As in I want perky new boobs to I want good looking boobs. To I want bumps so my bra won't strangle me.... LOL jk. The bumps look pretty good. I am treating myself to New 3D nipple for my b day next fall! Just don't know if I want them done in Baltimore or New Orleans.....
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Tangandchris - yes, apparently some women get them put in, filled,and exchanged within months without any issues. We are the unlucky ones, but thankfully we have each other here on this board for support.
Monica - Thanks for the hug. I hoped to have a similar experience as you and keep one TE until the second one was successful. Maybe it will still happen. We can wish, right? If not, PS is talking about fat grafting instead. I don't want to think too much about it yet. Just hoping to get through the rest of my chemo before making any decisions.
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Even though one implant never gave me any trouble, I lost the other one after two weeks. The TE that was put in instead was fine for the three months I had it. The doctor waited 3 weeks after surgery until all signs of infection were gone, I was healed, and the last drain was out to began fills. The remaining skin that had covered the implant was all flat and wrinkled, but as the fills progressed, it smoothed out. I got big fills to start (180, 240 & 100) since I was stretched already and then got smaller fills (80, 80, 60) to stretch it even more. I waited over a month after the last fill for the exchange. All went well. The replacement implant is a "keeper." So even if you have a major setback, you CAN have a happy ending as long as you are not asking your body to do something it can't. My PS, for instance, will not put implants and TE's into radiated breasts because he says 50% of them fail. The body often just cannot take it.
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Has anyone gone to NOLA for tissue expanders or a revision on tissue expanders?
thanks
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Hi everyone,
I am new to the BC.org forum... I had a bilateral mastectomy on 12/10, and now have tissue expanders. I looked through all the forum community titles and hoped this might be a good group to address my questions to.
I learn so much reading the threads, thank you for the information. So, far, think the TE's are doing Ok, although I find them very uncomfortable and have much trouble sleeping. (Any advice on sleep aids?) Really feels like an iron bra... Is this feeling normal? I have only had one small fill post surgery which PS said went well.
I have also not been doing much, but laying around since, and am planning on going back to work on Monday. My job consists of a fair amount of business travel and I was thinking of taking a business trip the following week. Have any of you done air travel with the TE's? I am a bit concerned about what happens with the airport scanner and the TSA's. My PS gave me just a typed letter from his office that says I have the TE's. He says it's OK to travel.
Any thoughts or advice you might have for me is very welcome.
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Jmms, welcome. I am glad things are going well. And yes TES are not fun. They are meant to push out skin, tissue, and muscle and have to be stronger than those! Iron bra syndrome is well known on this board. There are some who travel with the TES but i wasn't one so will hope others can answer that question. If you Dr didn't give you ambien or similar you can ask. If you don't want pills, some use melatonin. It's a natural sleep aid that helps your body's rhythm. If the travel could wait a week I would wait. It may be hard for you to get back to work. I know I was exhausted the first week back. But you are the best judge of you. So do what feels best for you. Much love.
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stix - NOLA docs are micro-vascular plastic surgeons specializing in autologous (flap) surgeries, not that they don't do TE/implant, but I don't think that is their area of concentration. Plus, if you have issues that is a long commute!
JMMS - my BS likes Melatonin for sleep aid. It is a natural substance in the body and many BC patients are deficient in it. I did fly with TE and a chemo port in place - no problems.
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Moonflwr912 and SpecialK
Thank you so much for your responses, I will get some Melatonin and try it this weekend.
Thanks also for the flying info this was freaking me out a bit....
The information is so much appreciated! You all are awesome!
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Well I have posted here before and here is my latest issue. I had my exchange from the TE to the implants on 11/5. I kept popping stitches and draining fluid. So on December 20th I went in for another surgery to have the pocket cleaned out and drains put back in and implants placed back in. I was doing great and PS decided to take out the drains out on Dec 30. Well as of new years eve I have a red breast, in pain, popped stiches and draining..... Ugh. I have had cellulitis before and was in the hospital. Guess what it is back!! Went to the PS today and he said we need to remove the implant and let my body heal. He said the chemo has compromised my immune system for any healing. My question is should I have both implants removed and start from scratch with both or just have the infected one removed. Has anyone experienced this? I wonder how long it will take to have the implant put back in? I really don't want to be without breasts. I have fought so hard to get to this point and I am very disappointed. Sorry to vent, but today was not good!!!!
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Together, well that sux! If it was me, I'd leave the good implant alone and let the other side heal. No point disturbing the one that is doing so well. If you decide to take it out later, you can. I'd wait until you are healed to make a decision. I got an infection after my implants were put in and lost one after two weeks. I was flat for only about six weeks but it wasn't a problem. At home I didn't care. For times when I went out, the drain from surgery #2 proved to be convenient. I didn't want to draw attention to the asymmetry so I put the drain bulb inside the surgical bra and it filled up that side so it sorta matched the good implant side.
When the drain was taken out, I put a little soft poofy pad in the flat side of the bra. I found a pair at Etsy.com for only about $15. It took several weeks after fills started for the flat side to "puff up" enough to eliminate the pad. Later when the TE side was bigger than the implant side, I used the poofy pad to even my chest out again. Moonflwr can tell you more. She went through hell with TE's until the third try. 0 -
Thanks Sandra for you response. So when you had your implant removed was it because of infection? They are doing a culture to see if the fluid draining is infected. I just want to try to save them. I was thinking about going to my infectious disease dr that I had previously when I had cellulitis. He saved me from having my TE removed. So it looks like I will have to start from scratch once my implant is removed and body is healed with the TE and fills then the implants placed..... Correct. Just so overwhelming and lots of decisions. Maybe I should just stay flat......so discouraged. Wanted to be moving on with life at this point!
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I left a message for my PS this morning. Lefty is very red today. I just know she is going to go this week. Heavy heart. We're cleaning up from a Nor'easter so I don't even know if they are in the office to get my message.
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Sorry Denise-I know how you feel!!!!
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Okay...I am just downright pissed and freaking out now. I'm not even sure where to post this, so I hope this thread is approriate. So, I had to have my skin necrosis issue corrected on 12/19, I had a day surgery to debridge it and close it up again...as my flipping TE was coming out of my incision. I have yet to see my PS for a follow up because of the holidays. It has been more than 10 days since this surgery and I am finding out today that a culture they took during surgery came back positive for Tsedomonas Aeruginosa.....wth that is right? What this means to me is that I need to be on Levaquin to clear it up, but one big problem....I cant take it with Celexa. The nurse calls me and asks if I can get off of Celexa for 2 weeks to take the Levaquin. I can't do that, if I stop taking Celexa cold turkey I will not do well...it is an anti-depressant. So, now I'm being told that the only other alternative is for me to see an infectious disease doctor and take IV antibiotics to clear this up.
I'm just so OVER this whole thing!! I wish I had never had the TE's now, it doesn't even feel worth it now. I feel like my PS has totally dropped the ball on me with this culture thing, I mean does it really take that long to get results back? I was supposed to go back to work next week and now I'm gonna have to do this IV antibiotic thing, how is this going to effect work? I am feeling like this is one huge nightmare that I can't wake up from I swear.
Has anyone changed PS's in the middle of the process and was it worth it....or just more complicated? I keep wondering why is this happening to me, yes I'm feeling sorry for myself. I want it to just go away!!!
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Tangaandchris Since I manage a drs office I thought I would answer some of your concerns. The answer is Yes- some cultures can take over 10 days to get results. Sometimes a lab report comes back and something is annotated on it and then the Dr has to ask for additional sensitivities. I had my TE taken out 3 weeks ago and there are still some tests not back. Fungal cultures can even take longer. So, I understand your being pissed but some things are definitely out of the control of the Dr. That being said, if you feel that your PS is NOT giving you the answers/attention you need then maybe it is time to change drs. You need to feel comfortable with whomever you use for your care.
As far as work, maybe they can do a pick line and you can have someone administer the IV antibiotics at home so you can continue to work. If they had decided not to remove my TE the second time I had an issue, that was what I was going to do since I could not afford being out of work for another week. So, don't stress until you speak to the Dr-and make sure you speak directly to the Dr so you can ask lots of questions. The infectious disease dr that I now use was great with answering All of my questions as is my PS. Make a list and bring it with you to the appointment.
Wishing you well
Babs
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Tanga nd Chris and Denise and Yogether! Aaaahhhhrrggghhh!!!!###!##!!!!#!!!! Oh my goodness life is NOT FAIR!!!!
Together and tang, you too. , like Sandy said leave well enough alone. You can alwa ts take out the one that is ok later. I had my right in for 2 years before my exchange due to infections and cellulitis. After it was out I needed IV abx. They accessed my port and left it that way. At first I had a nurse come to the house and she gave me the abx. Then I learned to do it myself. Every week I went to the infusion room and they took out the needle and re accessed it. So if you were planning to go back to work, are you in an environment that might expose you to infections? Like kids, schools, or hospitals or clinics? That would be important. Also is it at all physical? Because if they access your port you won't to be pulling or twisting or lifting things. If you don't have a port they will put in a PICC line. Same thing but it will probably be in your upper arm on the inside of your arm. It's a pain. I had both ways. I prefer the port access. But they both work. Showers are something you will need to be careful about. If the PICC line they sell caps for your arm that inflate on both ends to keep the water out. Any other questions please ask. I will help if I can.
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Well, it turns out that they are going to have me admitted tomorrow into the hospital to get the IV abx started. They arer going to do a picc line, so it sounds like I may be coming home with abx too. I may stay over night, or just come home later in the day. I'm just worn out now. I'll update when I can...thanks for ya'lls support. ((hugs))
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thanks specual k. you are right it is a long way to NOLA. but if my ins. covers the majority of it i am going for it. it is my best chance to finalize all these surgeries. not even sure if ins. will cover. ... only time will tell....
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Thanks for the advice. I am hoping for a miracle this weekend with these antibiotics. Breast is still red as of tonight and having sharp shooting pain in the breast..... Ugh I am preparing for the inevitable though.... Ugh. Still trying to decide if I want both implants out or just the infected one. Not sure if when I try again if breasts will be symmetrical. Also I have been researching fat grafting. Just so many decisions. Thanks for the input!!
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Tang and Together, I feel your pain and understand completely. I claim the title of PICC line queen and also am a proponent of IV Vancomycin. Please ask if that one will work for you. It's expensive and often used as a last resort when other antibiotics haven't worked. It's also the one they use for MRSA. It's an IV super-antibiotic. There can be problems with your liver so they draw blood every other day to make sure. Most people never have any side effects. I made it a month before my numbers went up and I had to stop it.
Vanc saved me from even more necrosis. When things start going bad, they go quickly. In three days I went through two antibiotics that didn't work. My whole underarm and side of the left breast was dark red, purple, and black and I had a 103 fever that wouldn't break. The doc decided to pull out the big gun, Vanc, and it worked right away. We knew I had to go back into surgery, but everyday was a waiting game to see if it could bring back some of the tissue that hadn't died but was ready to. I worked. I was in the hospital 7 days and then sent home to get away from hospital germs and see how much more could be saved before I HAD to have the second operation. Thanks to Vanc and a plastic surgeon who had faith that it could wait just "one more day", I had the second surgery on day 14. I'm not gonna lie, I lost a lot more than the implant in that operation, but it could have been MUCH worse and more disfiguring. For my third surgery on Dec. 6th, I got another PICC line the day before the exchange surgery and they started me on IV Vanc ahead of time. No way were they taking a chance. Everything has been fine. I was on the Vanc two weeks this time. When you are home, they deliver the Vanc to you in a clear softball-sized round ball with tubing to plug into the PICC. You get Vanc every 12 hours. It takes about 90 minutes to 2 hours to infuse and the "party ball" shrinks and shrivels up as you go. It's totally portable and easy to hide so you would have no problem going to work. It's not like you would have to drag an IV pole. You don't have to have the nurse come every 12 hours. My husband was shown how to "plug me in" and how to keep everything clean. (It's easier than dealing with a drain and I could have done it my myself if necessary.) You need the nurse every other day to do the blood draws and to change the dressing every week. PICC lines were something new to me but I'm a BIG fan now. They are put in by a special PICC team under sterile conditions. They go on the inside of your upper arm. The team will use ultrasound to find the vein, then you get a shot of lidocaine (make sure they "buffer" it with saline), and the little blue flexible line is inserted. You don't feel anything. Afterward they will do an x-Ray to make sure it's in the right place. No one will know you have the PICC line. It's easy to hide. Doesn't hurt when they take it out and the only thing left is a little mark where the suture was holding the line in place. It saves you from having to get constant sticks too.
Good luck. Please let me know how it's going.
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Wow Sandra!! What an ordeal!
I really have had no symptoms of this bacteria, I was actually feeling better this week. I just hope the fact that it took so long to get results back that it doesn't make it harder to deal with. Luckily, I do work from home, so it sounds like this will have a minimal effect on going back to work IF I am able to go home quickly. I just feel like this could delay the chemo further and while I'm not in a hurry to start, I know I need to soon.
I will ask about this antibiotic and see what they tell me.
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