TE TROUBLE
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Dawn - Crap, I'm sure you were disappointed with hearing you'd have to wait another 3 months for TE reinsertion and start over again with fills. I also agree with getting a 2nd opinion. It certainly won't hurt. Good luck.
Bev - How did the wound vac procedure go?
DLL - congrats on getting the drain pulled!!
Mom - hoping the redness is only due to the steroid cream, and that the redness was indeed due to shingles and nothing related to infection. Totally agree about 'stopping the drama' !!
Going tomorrow for my fill appt. I think I posted before that I'm supposed to get 2 more smaller fills. I'm going to wait til I'm at the appt to make the decision to get a fill or stop now. I've had problems with the last couple of fills and after reading your posts about other possible complications, I think I'll call it a day, and ask for an exchange surgery date.
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Hey Mich, suprisingly well.....i feel like a shrink wrapped rare steak lol!!!!, surgeon is positive we can have it healed in about 3 weeks, so to be on time for radiotherapy, i dont want to jump the gun yet though had too many down falls, i have to go every other day to have it changed, so am hoping it works!!. the nurse said she has seen wounds that you could put your head in and they heal with these!!!. surgeon said wound looked healthy, so fingers crossed!!!!, let us know how it goes tomorrow, take care B:)
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Momof3-my dermatologist put me on the top of the line steroid, but he told me that I was only to use it for one week and then put it on a shelf due to the thinning issue. It took care of my rash in about 4 days so I cut way back then. You are right....the drama is ridiculous.
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Bev - you sound like you're in pretty good spirits…that's good. My cousin recently had a wound vac for a serious open wound and infection after back surgery. It worked for her and she's healed well. Hope it's the same for you:)
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Not to scare anyone but please be careful with those rashes/red spots. After all my cultures have come out clean I now believe that the reason my tissues looked so bad once Lt TE removed is because of overfilling. I was overfilled almost 100cc and now looking back realized that it just stretched my skin beyond it's capacity and caused the tissue damage. I could get past all this if there had actually had an infection, but I have to start over now because my expander was overfilled-having a really hard time dealing with this. Having a very hard time looking at my Lt chest-I feel very mutilated and not sure how I'm going to mentally look in the mirror for the next few months. Don't even know where to get a foob for clothing. I also had my ovaries removed and am worried that this is going to send me into a deep depression. This all sucks, I was almost done.
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survivor - I got some of those forms for adding to your bra at Macys but they were not very comfortable because they had a curved shape. I finally went to the gift closet at the ACS Hope Lodge and they gave me a free prosthetic. It was much more comfortable because it was flat on the side that touches the chest. I would recommend going to a shop that has mastectomy bras and forms - jblcsw did after her TE was removed and they got her all set up. I also have a friend here that lost her implant and she did the same thing and said they were very comfortable. I also have a link for making a fabric pocket for the form in a regular bra if you would like it, but you would need to have a sewing machine.
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Thanks SpecialK
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HI survivor like you when I asked my breast nurse what went wrong and how I could avoid it happening again she said her thoughts were that my TE was over filled too early the wound opened and an infection got in. I think she is right and this could have been avoided which is so annoying. My wound went very red after my TE had 100ml fill then next day clear liquid started to ooze from the scar and a week later I had to have the TE removed. I had no pain or fever and the culture came back clear. I have to wait like you 3 months before new TE is inserted and 4 months befor filling can start. My TE was removed 2 weeks ago and I have not looked at the wound yet. Even with a dressing on it looks gross.
Bev, your vac sounds great. It must make you feel good that you are doing something to improve the situation. Going every other day to get my wound packed is so frustrating. I am going nowhere fast and I want to get things moving. I know I will have to face Christmas looking mutilated and last christmas I was on Chemo and I kept thinking next year this will all be over and we can have a great time and now I will be feeling rubbish again and having to think next year!
Keep me posted on how things go. Debbie
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Have a GYN appointment today, oh joy. This is a new GYN, actually I have never even met the doctor, I have only seen the nurse who I like. I first met her in April when I told her I needed a referral for a mamogram because of my lump. We joked about it in May after my BMX that I was one heck of a new patient. Then tomorrow I have my last fill. A little nervous as I worry we are stretching me too far, but I was a DD/G while breast feeding so I know they have some play in them. I just want this all over (sound familiar anyone???).
I found out Wednesday while subbing that I was passed up for 3 long term leaves. The principal thought I might not feel good enough...did he ask me, no. I had sent him 2 emails telling him I felt good enough. He didn't even ask the one teacher who she wanted, and she wanted me. This is a school I have worked at the last 2 years, they even sent me flowers after my BMX. Just a little frustrating. So now I guess that I will go ahead and schedule my exchange tomorrow fro after we get back from vacation. My DH said I should just go ahead and take care of all my problems (I also have a issue with my left foot).
SpecialK-hope you are feeling better...maybe food poisoning?
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Survivor- I suspect my TE/skin failed due to too much stress on the skin too, I was at the end of expansion, honestly I can't remember exactly how much over the fill was. However, I had prior radiation, lots of necrosis (healed) so that skin was extremely compromised to begin with. still....
1 week after having my TE removed, I went to a local mastectomy supply store, I had passed it hundreds of times and never even thought about it. I walked in there and the women were so wonderful - immediately fitted me and when I looked in the mirror and saw myself in a bra looking almost normal, I started crying. I never planned on using a prosthetic...didn't even have any idea what they looked like or how they worked. But I walked out of that store wearing one with two new bras. I need to go back and get a few more. While I waited, the woman filled out the insurance paperwork, faxed it to my insurance co., called my PS and got the prescription. My insurance paid 80%. During the early weeks I only wore it a few hours at a time, but now at 5 1/2 weeks out from TE removal I can wear it all day. That side actually feels more normal/squishy than my rock hard TE side. Also, at first I was like you and could hardly look at my mutilated caved in chest. Yet it has healed quickly and i am able to look at it differently now. It does get better. You've been through a huge disappointment, on top of the whole bc drama. The other thing I did that I never expected to do was go on an antidepressant. A few weeks after losing the TE I saw my oncologist and she talked me into it, partly to help deal with the severe hot flashes (due to AI) and resulting sleep problems I was having, but also because I felt like I was slipping into a depression after all the TE problems & BC battle. Within a week the hot flashes dropped dramatically and I am sleeping better than I have in ages. Now 2 1/2 weeks later my mood is much better, probably partly due to getting some decent sleep.
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Survivor-after mine were removed and I knew it was only going to be three months, I did some searching online and ended up getting some prosthesis from a transvestite website.
I know you are all laughing hysterically cut they were silicone with nipples and everything! I thought they were great but I would have gone with a bigger cup size as the b that I ordered was pretty small.
Because they would get hot and sweaty, I took the fluffy stuff out of one of the forms that came with a tank top and but them inside it! Perfect.0 -
Fluff-I am laughing, but only because a few years back I sold a bunch of my size 10 shoes at my MIL garage sale. After the "lady" had left my MIL looked at me and asked, "Was that a man?" Yes, yes it was.
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A former coworker that does drag shows told me where to buy nice, inexpensive wigs locally. It was a great tip & I ended up buying 2 there!
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We have a place locally, called "A Place for Her". Insurance paid for almost everything. Since I had the right TE removed, I wear a bra with my pumped up left TE, and the prosthesis on the right. They are awesome. I swim in them and everything. Can't even tell. It's amazing how the ladies in that store make you feel almost whole again.
As for the skin thing - I totally think it's due to the TE stretching the skin, and it's irritating the area underneath. We may just take the time to stop filling (I only have a couple more fills anyway), and figure out exactly why this red spot keeps coming back. Cultures showed no infection, it doesn't hurt or itch, just looks like a sunburn about the size of 2 quarters on my torso. Hopefully it is just due to the overuse of steroid cream. Stupid creams! The good news is that we have time to figure out exactly what it is. The skin/breast area over the TE looks great, it's just the redness underneath on my torso and it's pissing me off!!!
Does anyone know if it's possible for my PS to go ahead and do the exchange to implant on the left side while she's in there on Nov. 30th replacing the right TE? Not sure if they can do that one at a time, but it's worth asking.
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Thanks ladies for the great tips. Really not sure how I feel today, numb would be a good word.
I know how you feel about x-mas, I was thinking the same thing, plus we were going to the caribean in Feb to celebrae, no more cancer shit-just have to put it off a few months.
I'm trying to come to terms with all this, but I still just don't understand teh 3 month wait for reiinsertion, I did not have an infection, nouthing shows one, just bad tissue irritation. I've only taken it 1 day at a time through all of this, but now I can't get out of my head that it will be 7 months before I get back to where I was Mon.
Another issue, I have to get back to work, but I don't know if they will let me and even if they do not sure how I'm going to face my old life still feeling so mutilated. I've been gone through this whole BC thing due to surgeries and chronic neurtropenia from chemo so I don't know how I'm going to make peace with all this and still be a great caregiver (am an OR nurse).
Still very confused at this point, oh and sad, very sad.
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I know what you mean about returning to work feeling mutilated. I was expecting all my reconstructions to be completed by the time my herceptin finished so I could go back to work feeling whole again and able to put BC behind me. Now I will be nowhere near completed and emotionally I know I wont feel recovered until all my ops are done and I dont think work will understand. I hope things can move forward soon.
Debbie
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Dawn-Have you looked into getting a 2nd opinion? Seems to me if you are going to have to wait anyways with your current PS you'd might as well look into getting one. My heart aches for you ladies that are having so much trouble.
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It's great that this thread is so active, but it's hard to keep up with everyone!
Deb - you said your PS will wait 3 months for TE re-insertion which is pretty standard I think, but I've not heard about also having to wait another 4 months afterwards to start fills….I think they usually start filling within a few weeks from surgery…..4 more months seems excessive.
Dawn - can understand why you still feel sad/numb. Give yourself time. You've had quite an unexpected set-back. I originally had a left mx only without reconstruction and used a prosthesis for a year till I went for the right mx and TEs put in. When my left TE had to be removed, I started using the old prosthesis again…..it wasn't the right size because my right TE was bigger than when I was originally sized but it still worked pretty well. Like Jane, I also had to wait several weeks before I could comfortably wear the prosthesis after surgery. BTW, I also experienced the 'mutilated' flat chest for a full year then again for 3 months waiting for the TE to be re-inserted. I totally get it but know that it won't take long for you to get used to looking at yourself and knowing that this is temporary.
Chick - sorry to hear that you were passed up for long term teaching opportunities….that totally sucks. Have to agree with your husband, just take the time to look after yourself, and when this is all over, then focus on your career. Good luck with your fill tomorrow:)
Fluff - I never would have thought of a transvestite website to find a breast form…that's hillarious:)
momof3 - I haven't heard of a PS putting in an implant when you still have a TE on the other side.
I went for my fill appt today, and told the PS 'no more fills, I'm done'….I feel like a weight has been lifted. She said she probably wouldn't be able to give me the implant size I wanted, but I said 'no prob, whatever size/shape you think will work best for me, is fine'. I was so excited when I signed the exchange surgery consent forms…feels like a big milestone. I spoke with her receptionist later and asked for a surgery date early in Jan, but she has to get back to me and said it prob won't be till end of Jan……what's a few more weeks?
Mich
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Mich...I can't wait for that day - to know when the final exchange surgery is. All I see right now is a tiny speck of light at the end of this long tunnel. I did call and got an appt for a 2nd opinion with my PS's dermatologist for this skin thing. I'm on it, and I will get to the bottom of it. They don't know who they're messing with LOL!
Dawn...I've had my right TE out for 6 months, and lefty has been getting filled, so it's been really awkward, but those prosthetics are awesome. Gives you new life until you can move on with surgeries. Take some time off and get back to a good place. I love this site, it helps so much to talk with others who understand. XOXO
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momof3 - sorry, but I can't remember why your right TE has been out for so long? Strange that your PS would continue filling your left side.
p.s. I also love this thread….you ladies are great:)
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Long story short...Had both TE's put in May (delayed reconstruction after BMX in April). 2 weeks later had the right TE removed due to staph infection. She wanted to wait 6 months to try again. PS is very cautious, which is why I chose her. In the meantime, we stopped filling left TE to wait for righty to be put back in. However, I got fluid around the left TE since there was a space around expander. Luckily it was just fluid and no infection. PS wanted to fill left TE to capacity so there was no "space" for fluid to go. It seems to have worked, but I have a red area on my torso underneath left TE everytime I get a fill. Trying to figure out why / going to 2nd dermatologist in a week and a half. No pain/itching, just redness (we think because derm put me on steroid cream for too long). Right TE goes back in on Nov. 30th. Scared but excited. So over all of this worry about the smallest things.
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chick - I thought maybe food poisoning too (from the breast cancer football game hotdog!) but I ran a fever on Tuesday, while on antibiotics for the UTI - kind of surprising. Still having the Big D and went for my Herceptin infusion, which causes the Big D. So I can count on a few more days of this. Not fun. The upside - I am losing leftover chemo weight!
fluff - OMG too funny! Actually if there is this much transvestite/cross-dressing/drag queen interaction with the TE ladies we may have to re-name this thread! Good thing I didn't have anything to drink in my mouth or I would have spit it out on the keyboard because I was laughing so hard!
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momof3 - ok now I remember, it was a staph infection, so that's why the longer wait. When I heard I had to wait 3 months for re-insertion I was depressed, so can imagine how the 6 months news might feel. Thanks for the explanation re why the left TE continued on with fills…..makes sense.
SpecialK - hope you're feeling better, and good that at the very least you're getting rid of a few unwanted pounds with this ordeal. Take care.
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Mich_M - I ate something about an hour ago, first thing since last night, and it was a mistake. I have lost 5 lbs. since Monday! It is hard to believe that there is something to celebrate about the Big D, isn't it? I am going to go lay down pretty soon.
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Hi Mich sorry I have confused you I have to wait 3 months for reinsertion and 1 further month before they start to fill it making 4 months to wait. Thank heavens I dont have to wait 4 months before they start to fill. Lets hope anyway!
Debbie
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SpecialK _ That is the wrong way to lose weight!!!! But we take it any way we can get it, right? Hope you're feeling better today.
BEAUTIFUL weather here in Florida. Just got back from a nice walk and its perfect out. Hope everyone has a quiet & healing weekend!
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Hope you start feeling better, Special K!
How you doing today, Survivor?
Have a great weekend everyone. We are off to St. Augustine and I am leaving my worries BEHIND! (Yes the wine is packed lol)
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Have fun momof3infla! I love St. Augustine!
jblcsw10, I might have to start walking outdoors soon...I've been going out shopping every day so that I am walking around a little. Going back to work on Sunday & don't want to go straight from being a veg @ home to being on my feet for an entire shift. I don't think I am supposed to be out in the sun yet though. Will have to wait until later in the day.
Hope you are doing better, SpecialK!
Mich-M, congrats on finishing fills!
(((Survivor))), hope things start to look up for you soon.
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Had my last fill today as well (I hope). Gave them a list of good days for the exchange. He wants to see me again on the 21st just to be sure he likes the way everything looks. I am feeling quite huge right now and told him as much. He asked how things were on the message boards and I told him he didn't want to know. He's back to filling me on both sides which worries me a little. Now the oldie but goodie is 110cc bigger then the lefty. That was my cancer side though and he says the BS could have just taken more out there. I am a little uncomforable right now, hoping that goes away soon. Survivor....he says to go get a second opinion that something just isn't adding up.
Have a fun weekend all!!
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Hi all, thanks for all the good wishes. I do feel better, now just waiting for the Big D to start from Herceptin! Still not eating much - no appetite. Just came back from getting my LE sleeves - OMG they hurt! I had to learn how to put them on, so left them on and went to visit my former co-workers since I was right down the street. Realized while I was there that my hands looked a little purple and my upper arm (true LE side) was achy. Not sure if that is supposed to happen. I am going to have to ask the ladies who know about LE and sleeves.
dll66 - take it easy, do you feel ready to work on Sunday?
momof3 - Have fun!
chick - it is funny that your PS is now asking you about us!
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