TE TROUBLE
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chickadee521 - Thanks for your answer. It sounds like what mine has done. Guess I will find out for sure on Thursday.
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jbennett-So sorry that you have to go through this....the surgery wasn't that bad to replace it. Just a pick pain in the butt to have to go through all this again.
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survivor - sorry I can't help you - just started fills, but someone will come along soon with more specific answers for you I hope! Hang in!
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Sanbar and I are pm friends with similar problems!
BMX: Feb 28/2011 BMX with immediate tissue expanders and allograph.
Mid March-started chemo/herceptin for HER2+ component
Ran a very low grade fever off and on with just a slight redness at that time and didn't feel bad. Cultured fluid and nothing grew. Put on cipro as preventative. Docs thought fever was due to chemo or herceptin. Things got better. Continued filling.
First week of April-pinkness back on right side, no fever at all, some minor tenderness. Again cultured fluid and this time grew pseudomonas.
May 4th was fully filled...went into surgery either for implants or if infection was too severe, removal of TE's. PS said he stood there for 5 minutes trying to decide as I was borderline. Decided to err on side of safety and removed them.
August 2- replacement of TE's.
August 14-developed freakish rash that itched like crazy.
Saw PS who said he expected me to come in with cellulitis but that this looked like a rash and he had never had any one with a rash like that. I might add that fluid had been regularly cultured and nothing was growing. Even checked my port. Saw infectious disease who put me on IV daptomycin as preventative with nothing changing, then saw a skin specialist who agreed it was a rash. Put me on a strong topical steroid for a week.
For 9 days now, rash has been gone. I have my fingers crossed that it stays gone! But if it comes back, they think they can manage it until implants go in, on the off chance that it is a reaction to the expanders.
Implants scheduled for mid-October. I told them all these were not coming out unless the implants were going in, so to do whatever it took to save them!
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Hi all,
Just wanted to drop my story in here. I'm getting somewhat frustrated with the whole TE reconstruction process. I think I just need patience. But here it is....38 years old, diagnosed in March 2011 with IDC, had bilateral Mastectomy in April 2011. Clear margins, 4 small tumors, node negative=stage 1. ER/PR+. Taking Tamoxifen for the next 5 years. Sent for reconstruction. Expanders put in May 2011, 2 weeks later the right one was removed because of a very painful staph infection. It cleared up quickly with oral antibiotics. So we stopped filling the left expander until righty can be replaced. About 2 weeks ago I noticed that the left one was getting bigger and bigger, but I had no pain or fever like with the infection on the right side. PS sent me to hospital to get fluid aspirated and sent for a culture. They left the drain in for 4 miserable days. Fluid came back normal, thank you God! I was in such a state of panic, thought for sure it would be infected but it wasn't. Since there was space around the expander that we weren't filling, my body naturally filled it in with fluid. PS said we needed to start filling up that left one until it reaches capacity to avoid the fluid coming back in. Had one fill, no problems. Last week went for another fill, and she couldn't locate the fill port. She said it was possible that we would have to replace the left expander ((are you kidding me??). She tried again and was able to fill it, thankfully. She said that she thought that maybe it had flipped on itself. I think she meant the fill port flipped. Has anyone ever had that happen? If it needs to be replaced, she said she'd do it at the time that we put the right one back in, so no additional surgery, but STILL. I thought we were on our way with the left side and it seems like it's one step forward, 2 steps back. GRRRR. Trying to stay upbeat and positive here. Sorry to vent, and I look forward to talking with you ladies.
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Hi,
I had the right TE removed 2 weeks after they were put in. Staph infection, very very painful. Immediate relief once it was out. Oral antibiotics (Bactrim and Cipro) took care of it. It's been about 4 months and we are about ready to set a date to get the right TE back in. I'm terrified but need to get on with this process. It seems like I take one step forward and 2 steps back!
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momof3infla - first, what is up with all of us FL girls and the TE problems? Is it our drinking water? Too much sun? The humidity? Seriously, patience is required for those of us with "issues" with the TE. I am sorry that you find yourself in this group, I know how frustrated you are, believe me. I only had two fills (pathetic) but my fill port was in a different place for the second fill - I looked at my PS, like how did it move? He said the laws of physics apply as you fill the TE , so I imagine the fill port could invert (flip?) as you go along. I am guessing here. The member whippetmom may be able to advise you on the infrastructure.
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I hate so much that anyone of us has to be here, but it does make me feel less alone knowing all of you have been through so much more than myself and still marching on.
Went to PS. Not sure if Lt TE is infected or not. Drew out 25cc from TE to give it a little room since it's filled way past capacity and we found a small pocket of fluid. He drew about 15cc of clear yellow fluid from this pocket and said that this color looked good, will send it for culture anyway. Sent me for a WBC blood draw and it came back normal. Has me on two antibiotics now to be safe-told me they were strong enough that they would probably upset my stomach (who cares!) Going to go back and see him on Wens.
Still scared, but feel a little better now. Like everythihngelse just have to wait and see.
By the way I love my PS but today he said something really stupid. He was drawing off the fluid and said, "worst case we will have to remove them for 3 months." I said that that sounded like the end of the world and he said "no, I can think of worst things". I got pissed and said that , Yes, right now in my life at this very moment in time, IT WOULD BE THE END OF THE WORLD. Being 3 wks from exchange date and then somehow it's ranked away for another 7 months (3 without Te, 4 with fillings-again). What an idiot, I know it could be so much worse, I'm grateful everyday for where I am, I've taken all of this like a freaking champ, but once, just this once, I want to be pissed off and upset about something that is happening to me.
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Yes, it's good to know that we're not alone. Whippetmom rocks - I've already sent her some private messages when I had the excess fluid and drain in. She really got me through those long 4 days with the drain in. I hope that everything goes well when I go again to PS on Friday for another fill. I have learned to expect the unexpected at each visit. Sometimes I just want to throw in the towel, but things could most definitely be worse and I just need to suck it up and roll with the punches. I'm thinking that if she was able to fill it last Friday then it wasn't flipped? Not sure, but I'm tired of the surprises! She said that we will put the right TE back in just after Thanksgiving. I think I'll be ready by then, and should something be wrong with the left TE, she will swap it out at that time. Right now just enjoying each and everyday with my husband and boys. This journey has certainly shown with clarity what's important in life. I'm also learning patience. I'm a feisty redhead - this is a tough learning experience lol. I was a pretty hard core athlete, and have been told no more jogging or step class:( Bummer! So I walk, and walk, and walk.... So good to have someone to talk with!
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So I am going to a new PS (just canceled my appt with the current one)... I had NO idea of these types of issues - never EVEN occurred to me that I might need a TE removed... did you PSs explain the risks of rejection and possible need of removal to you all???? grrrr.. I told my new PS I need to know anything that could happen - I do not like surprizes at this point...
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survivor - sometimes I think they forget how focused we are on our own individual situations. They think of their patients as a group, but to us we are a group of ONE!
momof3 and just_v - I am over the surprises too! Didn't really like them before all this, come to think of it!
We may have to have a celebration when we finally all have these issues resolved. A TE TROUBLE group meeting in the Bahamas, with drinks that have little umbrellas!
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Count me in SpecialK. I could sooooooo do with some drinks, with umbrellas or not.
My PS did tell me about the risks with the TE placement and the biggest one was the DREADED infection. I think all our PS's tell us this but at the time we hear it we are all still focused on not dying so we have a hard time thinking about something "down the road" like complications from reconstruction.
Just_V, I think it's a great decision to get a new PS if your not comfortable with your. Mine made that stupid comment today but I don't think it was meant to belittle the situation,I just think he's a man but I totally and completely trust his judgement and skill with this reconstruction. Couldn't deal with someone I didn't trust.
I know everyone here know it's, but got to be said.BREAST CANCER SUCKS ASS!!!!!!!!!!!!!
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I KNOW my PS did not tell me about this stuff... but, as I told my new one, the old one is a bit tactiturn (now tell me, isn't that a great word!?)... My old PS told me with my skin that 'we will make a beautiful breast', then with the TE infection that the TE would need to come out but 'we will make a beautiful breast', then when he told me weeks later that my skin was compromised so we'd need a flap surgery but not to worry because 'we will make a beautiful breast'. Ugh. We will not be making a beautiful breast; my new PS and I will be making a servicable breast (I do not need beautiful, just normal). My old PS said very little..... ugh. Sorry - I seem to be venting!
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Just_v - vent on my sister! The good news is that now you have a new PS!
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Survivor - I hear you!!! we can only be positive and strong for so long. It's okay to get pissed and angry every now and then. I mean how much patience is one supposed to have!!! I did my part of being angry, sad, upset these past two weeks. I'm glad I've had this group to come to cause most people outside of here do NOT want to hear it. I know I'm lucky, I have a good dx, etc. but 14 months post bmx and my TE is removed??? What??? And no end in sight. Having said that, isn't this journey a rollercoaster. Today I reached some level of peace and renewed patience with it all.
Tomorrow I get my stitches removed from my TE removal 2 weeks ago. My PS just says we have to "wait and see" what is next.
Special K & other massagers - how soon should I start massaging???
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Also, welcome Momof3 and sorry for all you're going through.
Just V - congrats on taking charge and changing to a new PS. I like my PS but after all this I am going to get a 2nd opinion too before any further action.
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survivor - my left TE turned red in the same area sort of stung like a sun burn. I showed it to my PS the next day and he said the skin was being streched aggresively. He had me put a cream on it, put on an antibiotic as a precaution and told me to try to take it easy for 3 days. It went away. I found out this is pretty common during those last fills. Check with you PS.
Good Luck, the nerves are the worst part.
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Thanks ShannonR
It seems less red today so I'm feeling less freaked out. I'm just so ready to be done with all of this. I will still have to have the nipple reconstruction, but that doesn't seem like a bid deal compared to what I've been through the last 5 months. However am grateful it's only been 5 months as compared to what some of you ladies have endured.
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jblcsw10 - I would massage (firmer pressure but similar pattern to self-exam) as soon as you can without any discomfort.
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To all those complaining, complain away. And yes, it is nice to have this place to complain because although I can joke about it with my friends and family they don't fully understand. I know that I should be happy. We did catch it early. I did not have many problems with chemo. I did not get an infection. But come on, seriously, a leaky TE. Who would have figured that would be my set back. And I forget who it was that said their PS said it could be worse (or something like that)...yeah, it could be worse. Mine said kind of the same thing, oh don't worry, easy fix, just a little set back. Well it was a little set back I didn't want and didn't ask for.
Ok, I am done now complaining. I need to go pick up for the cleaning lady. Today is the last day that I get her now that I am not "recovering" any more.
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See, this is why I don't have a cleaning lady - I would also feel compelled to clean before she got to my house!
Off to the PS this morning for what I anticipate will be my first two-sided fill! A landmark day! I will celebrate with a physical therapy appointment right after that!
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off to meet a handsome redhead for lunch, my 7 yr old son at school.
Just to let everyone know my PS(he's the one that made the "it's not the end of the world" comment, he called me personally this am to check and see if I was doing better. Guess the loook on my face yesterday scared the hell out of him. See even male docters are trainable, Lol.
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Yes, I clean for the cleaning lady. Otherwise she wouldn't be able to!!
Very nice of the PS survivor11. Guess that is why you like him so much!
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Oh my, I haven't been on this thread in a few days and WOW it is zipping by! Welcome to the newbies who don't want to be here any more than us oldies.
BC SUCKS. So does TE TROUBLE!! It is very aggravating to go all these months patiently moving towards the goal of putting something permanently artifical under our chest muscles only to have yet another TE complication and then have to start all over again. We all can relate, we all go through periods of being pissed about it, and we all don't mind when you complain! Thank God we have a forum. I really would think this was only happening to me otherwise!
I had no idea what I was getting into with recon. BMX was a piece of cake compared to all these complications.
Aren't we lucky? The Few. The Proud. The TE challenged!
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Had an appt today with PS. I had noticed that the newbie TE on left seemed slightly larger than the oldie TE on the right, so pointed that out. He agreed and filled the right one. The right has never had a fill - until today!!! Now it is bigger than the left, ha! Anyway - while there he asks me what are my thoughts about implant size and what size do I want to be. He advised me to look in the mirror (a lot) and think about what I want. I was pretty surprised as I expected with a 550cc TE to be filled to more than this but I could also be wrong about what I started with - I need to ask that question, forgot to clarify today. If I could have implants just slightly bigger than what I have right now I would be quite happy. I am also wondering if he is concerned about the weakened skin on the left one and not wanting to push the envelope - maybe he has been reading this thread secretly!
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Hi all, I've been very busy the past week or so and will be until the end of September.
My chest is feeling better. I'm loving being able to sleep on my side now, with a pillow tucked under me (almost 3 months post op from the BMX and month and half from TE removal). I'm trying to make the most of it until it's put back in at the end of October. I still have pains but I'm getting used to them and am able to differentiate from what's normal and to be expected.
I haven't had time to catch up in here, I'm on limited time, sorry.
I hope everyone is doing well and those dang TEs aren't causing too much trouble!Michelle
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I had an infection where they left my drains in too long resulting in the removal and immediate replacement of a new expander. This was 3 weeks post mastectomy and initial te placement. There was a 60-70% success rate and I am happy to report that I just had my te's swapped out for silicone implants in June. It is scary when it has to be taken out so soon after surgery but hang in there, it can work the second time around!
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Ren: You put a big smile on my face tonight. Thanks.
Hondagirl, thanks for your positive report. We're all going to look back on this as a distant memory, I hope! In the meanwhile I'm glad I've got you ladies to b$#%## to.....thanks for being there!
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Ren - you did make me laugh! and I agree - the post MX stuff is worse b/c it seems to go on and on and the doctors have zero urgency... btw.. I canceled my appt with my first PS and they asked if I wanted to reschedule - I said no, and they did not even ask why... hm.. makes you wonder, right? So I get the BRCA results in like 10 days then I will decide on the next steps -- MX on the other breast or not.. my husband says since I will be in intensive care with the DIEP surgery (because they need to so closely monitor it, not because I would be dying... lol), that I should go ahead and get the other breast removed... but I just am not sure I can deal with the extra surgery.... ugh.. too damn many decisions... right?
SpecialK - If I can go bigger, I am going to, just because we went through so much crap with this, why not!!? So your PS will surely tell you if the skin is a concern, right?
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Hi all...ten days and no rash return! Woo Hoo! chickadee...when I had a cleaning lady, I cleaned for her also. My husband said that was the only thing that kept our house clean, because basically, I am a clean freak, but a slob with clothes and laying stuff around. LOL
My ps, whom I love to death, did tell me about the risks, but even he was surprised to find out it was pseudomonas when it was finally diagnosed. When I was arguing with him about potential removal that first time, I said "Really, it can't be that bad...just give me an antibiotic." He said, "Well...You can become septic." Hmmm...that shut me up. I started to laugh and told him the he wins. I give in.
He is so tired of me reading the internet and all the studies and then berating him with questions that he gave me his cell phone number and told me to text or call with any concerns. He was especially thrilled when I had the rash and texted him that I thought I had inflammatory breast cancer or angiosarcoma. His response was 'Get off the computer." lol. Then when I saw him, he actually took the time to explain why it wasn't those things.
I was over the whole bigger thing...mine were a large C/small D to start with (grown only after the second child...nice B before that). I told him I wanted to be smaller...but when removed, I was filled to 500 and felt huge. Also complained that I had armpit boobs and he was going to have to fix that. This time, he put in a narrower expander and it feels sooooo much better. I am currently at 300 and will go to 400 and call it a day. I will say that I am on the verge of growing out of my nice B bras that I bought, but I think it if softens with the implants it will be ok.
Don't you all feel like a porn star with your TE's? I can lay flat on my back and think I look really good!
Of course, I was showing a house today, and forgot to estimate the distance to the wall and ran right into it reaching for a light switch. I fully expected the TE to explode! LOL.
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