TE TROUBLE
Comments
-
school counselor.....so sorry to hear that. Moon is right, you will feel better very quickly. It is a bit of a shock visually if you started out with immediate recon. Keep a couple extra Ativan handy. That was the hardest three months for me after mine were out, as I was pretty much fully filled when we gave up.
Just read your signature line. Looks like you started recon after your bmx. You will get through this. It is just one more bump in the road. Make sure they culture your infection so you know what was causing the problem.
0 -
School counselor - Thoughts, prayers, and hugs.
0 -
SC-it will be okay ((hugs)) I just had mine taken out. All of this is hard and not what we bargained for, but it is going to be okay. The most important thing is taking care of that infection.0 -
School Counselor, sending you many hugs. Keep that Ativan handy. We are all thinking of you.
Women of TE trouble, I have been reading for some time and you have given me hope. Always thought I wanted to be flat after what I knew would be an eventual BMX. This is my 5th breast sx. But opted for recon at the last minute. I didn't want to scare my daughter -- she's seven -- and I got this idea that the flatness would scare her.
The right TE got infected -- blah blah blah, IV antibiotics, week in the hospital, they couldn't get at the infection with broad spectrum -- and they ripped out the TE on New Year's Eve in an emergency sx. Wow. The whole thing looks terrible. I almost died. For two weeks I wasn't able to take care of my children the way I like to. All pretty devastating.
Unlike many of you, I made a decision not to continue with recon. I do admire those of you who keep at it. You have such faith and hope! I completely lost hope in the process. Worst yet, met with PS today for pre-op. He really rushed through it. He seems to be disappointed or 'mad at me.' Or else he's just not spending any more effort on me. I was told in the hospital that 'You may think you are disappointed, but [the PS] is VERY disappointed. It is his work. Just think of how disappointed he is.' Anyway, he was extremely brusque today. I tried very hard, but I was unable to ask all the questions I wanted to ask. The PA was rushing me out as well.
Now I'm home and scared he will treat me with less care while he is operating. It bears mentioning that I asked if one of his partners could do it -- the date he has available for me isn't good with my work schedule -- but he refused. He wants to do it himself. I was told he 'didn't want to let me go' to one of this partners. Can't go to another hospital -- our insurance is only within this university hospital network.
Anyway, feeling scared and unsure. Facing one more sx, but want this to be the last one. Want him to do a thorough job -- the TE, scar revision, dog ear sx -- and don't want to go back in after that. I know PSs are not the most personable people in the world.
Many thanks for this thread. I have really appreciated reading.
0 -
bobogirl-I totally understand your apprehension with your PS. I got the same attitude from my PS once I started having issues and honestly I will not go back to him. What is your next surgery for? I had my TE's removed and have decided to delay reconstruction. Well, I had little choice as all of my issues have delayed chemo and I have to get started.I say if you don't feel comfortable with PS, can you try to switch? I know that it probably seems like too much to try to figure that out right now...I get it. ((hugs))
I don't have alot of advice, all I can do is say that I know where you are at. All the surgeries, the setbacks, the PS attitude takes a huge toll. You are not alone!
I also wanted to add...that having children during this stuff is incredibly difficult. I have a little one and I have had a hard time too. To make things worse, she used to love going to her nana and pop's, but now she knows if she is over there it means I'm either in the hospital or sick. So, when we try to take her she cries and scream and it just tears me up. Its hard on everyone ((hugs))
0 -
Damn, damn, damn. So sorry SchoolCounselor.
0 -
sc. So sorry
Bobogirl. If you can, try to find a new PS. You need to feel that your PS genuinely cares about you. It's a long process and you need the surgeon to be in your corner- no matter what. Throughout my recon journey ( TEs placed 2 fills infection and 6 day hospitalization, another infection , Left TE removal ,fat grafting, infection again with a 2 day hospitalization, my PS has been there 100 percent for me. And even now that I'm done trying recon on the left he is there for me. I could not bare all that I've gone thru if he were not helping me. PSs should care for and about their patients. Maybe ask whippet mom if she knows of a good PS in your area
Babs
0 -
Tangandchris, your story about your little one is breaking my heart! I have a similar situation over here with Nannie and Papa. Today when I told my daughter I had a dr's appt., she snapped to a kind of alarmed attention and said 'What for?!' Trying so hard to not worry her.
Babs, I tried so hard to get another PS in the practice. His partner operated to remove the TE. Spoke to the head PS in private. She agreed that any of the partners could do the job. She agreed that the timeline in which I could rest during break would be best for healing and to minimize infection. But she said she had to 'ask permission' from the PS. Apparently, he will not grant it. Switching and remaining in town would a) put me out of coverage, and b) give me a less-experienced and less talented PS. Believe it or not, he's ranked best in the state, with many awards. He's super-arrogant and important. I am like his ugly embarrassing daughter, apparently.
I am incredibly articulate and pushed and pushed in a charming way for a continued audience today, willed myself away from even thinking of falling apart, had a list in front of me and was obviously trying to get through it, and I was conscientious of the PSs time -- wasn't really trying to bogart it. I was operating on all cylinders. And I've been actively trying to get someone more supportive. But I seem to have come to the end of that part of the journey. As you guys have said, I have two seven year olds, and it's difficult to 'go rogue' completely when you've got the school run, dinner, work, etc. And my little daughter has medical issues. I love her so much.
Your surgeries and infections made me ache in my area when I read about them! ((hugs for you)) Why can't we be PSs? We are incredibly empathetic!
I think I could switch PSs if I completely abandoned my timeline. That would mean taking more time off work. And having sx when my kids were not in school, which would suck. And taking a stand at the PSs practice and demanding to have one of the other partners. And the partners would probably side with the PS and be 'mad at me' as well. And view me as a problem patient. None of that sounds like it would work in my favor.
Doesn't it seem that an awful lot of us get infections? I did everything possible to avoid it: medical cleaning service, new pajamas twice daily, hex scrub, bleach wipes at hospital, etc etc. I am pretty assiduously clean to begin with. Doesn't it seem that we're not quoted real stats about infection rates with TEs?
0 -
I wonder about that too Bobogirl...I mean how often do these TE's go bad? My PS even went so far as to insinuate that somehow caused this infection.I'm sorry you are dealing with such an issue with your PS office. I went to my BS when I started having issues with PS and the BS office was very empathetic and I think she even spoke up to my PS on my behalf. I totaly get what you are saying though, you are in kind of a no win situation. I've heard that this can happen, as far as PS's having a "good ole boy" mentality within their circle.
0 -
I am flabbergasted. "Ask permission from the PS?" to have another surgeon? I don't think so.....YOU employ HIM!! Who else has a job where they cower from their employees? Oh my goodness.....I get SO frustrated with this system!!!!
I am sorry....I am an RN and have seen far too many arrogant surgeons who believe they have some sort of superpowers. Unfortunately, they believe it because their staff and patients reinforce it. Screw that. They don't. It is your body....your choice. We are in such a compromised position as women with breast cancer. We just want to be better.....we don't want to inconvenience anybody, don't want to ask too much. And we are so, so, so vulnerable. But honestly......that is too often taken advantage of (in my opinion).
OK......I'll settle down now...... I just get so frustrated. I see so much about all of us here wondering how to word things, being so careful not to say anything that would imply that we are not grateful for the care we are getting.....which we are. I wonder how much time men would spend on such things?
Sorry....I have gone too far.....I genuinely care about all of you and I really hate feeling so out of control with all of this. I have been fortunate to have caregivers who empower me. I want everyone to experience this and it breaks my heart to hear it doesnt' happen.
Best of luck with your surgeon. I pray for beautiful outcomes in every way for you!!!
0 -
mnmbeck-no need to apologize....you are on the money!!0 -
Agree. Mnmbeck -- I think you are absolutely right!
0 -
Mnmbeck-you are spot on. I worked for a PS and although he had an ego that was ridiculously large, he was also very compassionate and there for his patients. I couldn't image a PS that wasn't. My PS for recon (my former employee doesn't do BC recon) is just wonderful. He recently suggested I do a flap, which he doesn't perform since he felt it might give me better results w/o all these infections. I never wanted to do a flap so I dismissed that idea. But no matter what he's compassionate. Living in NY I'm spoiled- there are so many PSs to chose from. Not everyone has that option-so sad to say!!
Babs
0 -
Has anyone ever been given a "reason" why these infections are happening? I am in awe at the strength of all of you. I haven't had my surgery yet and am scared to death of all of the possible SE's, infections, and pain. I know I am just getting myself all worked up over something that I have no control over. This surgery is necessary and what will need to done after the surgery is still yet to be seen. But are there things that can be done to be on the preventative side of infection?
0 -
Many of the infections are a result of skin damage due to radiation-although there are other issues that also cause infection. In my case, I knew from day one that I was at risk for issues because of radiation. My best option was a flap surgery but it was not an option that I wanted (It was a more extensive surgery) . When your skin is radiated, even if it looks good and healthy (as mine did) you never know how it will react to any foreign matter-TE, Fat Grafting or implant. I think my PS said I had about a 50% chance of infection. (He did tell me that if I were his family member he would recommend a flap). I still went this route- with my eyes wide open. The key is that your PS should explain all your options to you so YOU can make the right choice for you. Even though at this point, it didn't work out I still feel that I made an informed decision and if given the chance again I would probably make the same exact decision.
Babs
0 -
Bobogirl - it is both good and bad to hear how things have been going for you since the December surgeries thread. I so appreciated your encouragement for everyone on there and then I knew things got tricky for you, but didn't know how you had fared. I'm so sorry that it got so rough and I am sorry that you are feeling so stuck with your ps.
My ps keeps shushing me when I try to ask questions. He is older, very old-school, I think and perceives himself as a breast artist so far as I can tell. Literally, I will try to speak up/ask anything and he kind of "ah, sh, sh. It will be ok." Sigh.
I appreciate people bringing up how all of this is affecting your kids. My 7 year old son's daddy passed away 2 years ago from complications resulting from surgery. So, my son has been absolutely terrified for me. I feel like we are each just now starting to actually process our emotions from my sx in December, and I hope to God that my exchange sx in April will be the end of this whole crappy bc story....I have been very lucky to have all of this go much better for me than it could have, but dang, I never ever want to have surgery again. Very unfair to our kids.
0 -
I too have never received a good answer as to why I got an infection. I did not have radiation, so my skin was ok, and since there were no complications with the surgery, this nightmare shouldn't have happened. On Aug. 23 I had a BMX with immediate permanent implants in an 8.5 hr tag-team operation. The PS told me ahead of time that when he takes over to do his part, if the skin flap is too thin on either side, he would not take the slightest chance and would put in a TE instead of the permanent implant. He said that there has to be a thick enough flap with enough of a blood supply to ensure survival of the skin and the little bit of tissue below. I woke up that evening with implants so I knew my flaps had been good. Yay!
During the night I started running a fever and the skin on one implant turned a funny shade of lavender on top and red on the side. I had an infection, even though I was on an antibiotic. As time went on, it got worse. The docs changed antibiotics but it did no good. By day three I had a 103 fever and the side of my implant and under my arm had gone from red to purple to black. They changed me to the antibiotic of last resort, Vancomycin, and finally things started to turn around. Where did I get a gram-positive bacterial infection? I sure didn't bring it from home! Two weeks later I was back in the OR, lost the implant plus parts of three muscles and all of soft tissue under my arm. Although the infection is long gone, I am still dealing with the aftermath of extended pain and now deformity of the new implant. My fourth surgery is scheduled for March to repair more of the damage. If this doesn't work, a fifth surgery will be done where I'll have to have muscle and tissue from my back used for reconstruction under my arm and into my shoulder. My situation is minor compared to what others here have gone through. Some doctors kind of brush it off and say if you have a problem, we'll fix it. They make it sound like no big deal.
Someone needs to conduct investigations to find out why infections are happening after all kinds of breast surgery.
0 -
I have never been told either or given a satisfactory reason. I believe that had my PS taken the skin necrosis that was occuring more seriously the infection might have been avoided. I also think that while the PS kept saying the issues I was having was skin necrosis, it was actually an infection that was underway.Sandra-I don't know how you've gone thru all of this and not been able to take anything but Tylenol. I wanted to say something before, but got sidetracked.
I start chemo Thursday...finally. I'm scared, I know the fear is normal....but I swear after all these complications I'm afraid that something else could go wrong. I'm also concerned a little that the infection while under control, could spiral once I start chemo. I've been delayed chemo for too long though.
0 -
Bless you, Tang. I know you are scared. You've been through way too much already. We all get through this somehow. Thank God I've found all of you here. You all allow me to wallow in self pity when I need to and offer ideas that work!
Going through surgeries with only Tylenol has been a big test of strength, but it's better than the alternative. I've coded four times and had to be revived, so narcotics and I are no longer friends.
0 -
bobogirl, I think we are in the same area. I don't know if he takes your insurance, but my PS has privileges at the same hospital and he is a lot more compassionate than yours sounds like. I had a lot of complications due to rads & he never gave up. I am very happy with my results and with the level of care I received. Feel free to PM me. I don't like that yours make you feel bad.
0 -
Just finished reading everybody's news. God bless us all.
I have always thought that I had so many complications and eventually lost my TE's because I am just unlucky. My PS is very successful with other people.
Had my visit today to evaluate my wounds after 3 weeks on the wound vac. We have to keep it on another week.
Tang - you will be on my mind tomorrow as you go in for your first treatment. I am having my 10th, same day.
My heart goes out to those of you with little ones. Breast cancer is a beast.
0 -
Hello all,
I have had my share of TE issues. Left exchanged to to an infection. Infection never really cleared up and lost TE in left. My infection was a bacteria called pseudomonas aurenginosa. It very prevalent in the hospitals and I picked up my infection during my NSSBmx at the Hospital. I know this because of the Infectious Dis MD I saw. There were several cases of it around same time. It is a very resistant bacteria and takes weeks of IV antib's to properly get rid of. I still have a pinhole near the border of areola since last sx on 11/4. It is still leaking and I have to keep it dry.
I had appt today with Onc. I have my last chemo tomorrow and I go for a rad consult next week. I was always pretty much expecting not to need rads because of BMX and only 1 micromet to lymph....Apparently some new research and std have been coming out and now I may be recommended rads, although I am willing to do whatever it takes to defeat this beast, I am terrified that I wont be able to have a good recon later. I have all my skin and nipple that basically folded into the TE's old home. I have heard with that excess loose skin there is scarring,burning and skin shrinking on rad breast.
I believe most infections were picked up at hospital and it is very hard to rid plactic of the infection, therefore we become so sick when we get one.
Huggs all
Vivian
0 -
Vivian-I had the same bacterial infection!! Wow, I was told how strange it was for me to have this by 2 of my doctors and I was beginning to think I was some anamoly. I believe I picked it up from the hospital as well and my PS didn't pay attention to my concerns soon enough.So, can I ask you a couple of questions about having this infection during chemo? My chemo starts tomorrow, but was delayed for weeks while trying to get it under control. I ended up having my te's removed and things are much better. However, I am concerned about it not being completely cleared up and what that will mean when I start chemo. How did you fare during chemo, were you still on antibiotics?
I am worried about being disfigured for life, but at this point I just want to concentrate on getting thru chemo and rads.
0 -
Tang,
My NSSBMX was on 9/4, then 10/2 TE was exchanged pocket cleaned and given 2 oral antibs ( one of which I found out later was not effective for this bacteria) 10/29 I have a LE massage with a new person and she massaged the incision area(way too soon) it aggravated the tissues and by 10/30 my breast skin had blown up to what look like my old breast.
BS did an US and filled with fluids he drained over 100cc before he decided to put a drain in. When he cut the hole for the drain, I felt fluid everywhere and when inserted the drains filled up completely twice. He tried to save TE put me on antibiotic and sent culture. By Monday incision was red and opening it was straight to ER then surgery later that day.
What I found that helped me and I think anyone facing this it you with your concerns should see an infectious disease md. They see these bugs more often and are in contact with infection control in hospitals. Mine was excellent and told me straight up. It came from my first surgery. He had 3 cases at the time 2 from my PS and one from another we all had surgery within a week of each other . I later found out about another man who got it when he went in for pacemaker.
3 months later Hosp pre-op area was renovated completely.
This is a bacteria that can live basically anywhere found in standing water usually can be in under chlorinated pools and standing water. It's what causes most swimmers ear .
Inf Dis Md Suspected the results from culture and they can take up to a week being done stat to get results and I was put on Zosyn an IV Antib 3 x a day for 21 days.
You can consult with one to make sure your anti b was one know for killing this bacteria.
I had started chemo 10/25 . I received my weekly herceptin 11/1 at chemo place and in the hosp on 11/7 after surgery. My second chemo was delayed 1 week and then followed every three weeks TCH I get #6 and last TCH today.
During this time I have been followed by basically all md's keeping an eye on breast and numbers from CBC tests.
I still have a pinpoint hole and it still drains. The fluid had remained cleanish yellow to light tea color at times a little pinkish. The more activity I do . The more fluid. They are hoping it closes on its own after chemo.
But I would say it did not get affected by chemo. I had what I would call the normal range of SE's from chemo and neulasta. My counts went down if too low , I stayed away from strangers and close areas, when back up I worked a few hours. How does your breast area look ?
You need to feel confident to move forward. You don't need extra worries during chemo. What answer do you need to feel better? If it has to do with it being gone. Go to an inf dis md. He can pull your cultures and know if you received appropriate Antib therapy .
I am sorry if post is to long for here, pls pm if you have any questions or need a hand to help you through chemo . You will get through all of this.
Hugggggs
Vivian
0 -
Thanks vivian!I did see an infectious disease MD about this and she has given me the all clear, but I'm so ready for things to go wrong that is why I'm questioning it. I got my last drain out Monday(I've had drains in since my original BIMX on 11/27) and am off of my oral antibiotics now. I was on Cefepim IV, but after a couple of weeks I started having a reaction...actually right before my surgery to remove my TE's. So they decided to put me on Levaquin after the TE removal.
I had my first chemo infusion today, I just got home actually. I know they are monitering me and after today's visit I do feel more at ease with things. Ironically, the left side was my non-cancer side and this is where it all happened. I will eventually go back for recon, just not sure when.
0 -
Tang, I am thinking of you. DLL, many thanks for your offer! I will PM you.
Trinitymorn! Good to see you. Have been worried about going on the December sx thread. I had such bad news -- one thing after another -- and things didn't look good for a long while. So I didn't want to post that on the thread. I am definitely deformed at this point. I only wanted to give my December sisters good news... but I should probably jump back on and see how everyone else is doing.
It's been one foot in front of the other at the moment. I must say, I love this thread. I had pseudomonas too. Had two infections, actually. The PS and other docs just swept it all under the rug, told me as little as possible. Tang, I hear you about the necrosis. I feel exactly the same way. I feel the PS should have paid more attention to mine.
XXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXX
0 -
tang,
1 done and I wish you no/ minimal se's
I had # 6 and am done with chemo, soon you'll be there too.
Vivian
0 -
Hello lovely ladies, sorry to hear so many having the dang Te Trouble.
I've added in what I could piece together from your stories to the list above, but bobogirl when was your surgery to remove your TE?
After my TE Troubles (necrotic tissue caused by inadequate blood supply which then led to delayed healing in my incision line and removal of my TE, then re-placement months later and 1 fill and I went straight to exchange (though all of that took nearly 2 years). I did not have an infection, but I don't think PS's tell us the statistics of these types of issues happening… I recall the percentage of recon problems seemed pretty high but of course never learned that percentage until *after* I experienced my own troubles.
I'll also chime in here regarding the importance of having a doc in your corner: as hard as it is, if you find that you are getting nowhere with him and his attitude (and you have brought someone with you to your appointment that can advocate really well for you and they too are getting nowhere), then do what you can to switch. YOU are the one who has to live with his medical mishaps the rest of your life; he simply goes home with a bruised ego.
{{{hugs}}} to all.
0 -
Well said, Rennasus. Sx to remove L TE on 12/31/13. Sx to remove the other one, with revision, schedule for 03/05/14. X
0 -
bobo - you and I will be recovering together! I am scheduled for a revision on 3/7 - my dermal matrix is breaking down bi-lat and needs to be replaced with a stronger product. I have substantial implants and abnormally thin pectoral muscles (genetically) so it created a bit of a problem.
tanga - my non-cancer side is the trouble maker too!
0
