TE TROUBLE
Comments
-
Update, he had a better attitude today, yay. The plan is to meet him at his office early in the morning and he'll take another look and decide then. Although looking at it, other than swelling, you really can't tell because of the radiation redness. I'll have to go prepared for 11:30 removal just in case. He seemed a bit more hopeful since I feel a lot better, although my fever is up and down. I appreciate one extra day but that's still too quick to decide. Question, do TE's drop, maybe the swelling has made it heavier or maybe the stitche dissolved? I'm not overfilled at 400cc's and they are a bit softer than I expected.
0 -
twills - glad things were better today - both for you and with the doc. Crossing fingers that there is enough improvement by tomorrow morning that it negates the need for surgery. Expanders can indeed move in the pocket, and the stitch holding the suture tab can dislodge, it is relatively common. Some surgeons use the suture tabs, others don't. What is the total fill volume of your expander - not what you're filled to, but the total size volume?
0 -
They are 400cc and filled to just that. The original plan was to overfill but he changed his mind for some unknown reason. I actually like the new shape but the nips are a bit off now. Not that aesthetics are the idea with TE's. I just have to hope that if he doesn't do the surgery that if I take a turn for the worse he can get on the schedule at the hospital on an emergency basis. I mean, can you really schedule medical issues, I think not. But we'll see. He told me to wear a sports bra after surgery but didn't say for how long, even when asked so I stopped a few weeks ago, hopefully that hasn't caused more issues. Although I know that the rads are most likely the culprit. Im halfway done with rads and will have to take about a three week break if I have surgery, I feel like I should also take that break even if I don't have it. Maybe the damage is done and a break wouldn't help the antibiotics work any better but maybe it would give my body a break. Which would have to help. I don't know, I'm so tired of having to make crappy no win decisions. This really does make a difference in my future reconstruction plans.
0 -
TWills:
My left TE has dropped and is a bit lower than the right. Also they are very/very far apart. So that can happen.
0 -
EastcoastTS, that's what I figured. The timing was just bad I guess:
Anyone else have a TE infection, if so how were you treated and what was the outcome?
0 -
twills - if you read the header of this thread you will see that the many of those who posted in the past did have infections. With a few exeptions, they were able to resolve and go on to reconstruct. This thread has been somewhat quiet, so I am not how many are currently posting with infection experience, besides those who have posted in the last couple of days.
0 -
I had an infected TE. It was removed for a few months then replaced. They thought I was having another infection and wanted to take it out again and eventually do Lat Flap surgery but I refused. Not sure if it was every truly an infection - cultures all came back negative. The breast turned a deep, dark red - almost purple. The breast is still red (not as dark as it was at the beginning) but I have had no other symptoms of infection for months - no swelling, fever, I feel great. I am moving forward with final exchange in September.
0 -
Raven4mi, well that's right around the corner, congrats! Its my radiated side so mine couldn't be replaced and I'm so red from three weeks of radiation the Dr can't tell if it's also red from infection. Luckily at todays visit he felt comfortable cancelling the removal surgery and said we would wait until Tuesday and see how I'm doing. I'll be through with my antibiotics then. I definetly feel better than I did the first of this week. Fever is still hanging in there, although it's come down a bit. Good luck with your exchange, what a milestone:)
0 -
TWills:
Good news! Hoping all is good at next week's appt, too.
0 -
TWills, so glad the doctor delayed the removal for you as I know you were quite anxious about it. My infection and all the subsequent complications were also on my radiated side. So there is hope.
Edited to clarify.............the initial TE was out for at least five months before we decided to take the next step and, even then, I opted to have fat grafting done before trying to replace the TE. Fat is essentially made up of stem cells that helped repair a lot of the damage from the infection. You may want to bring up the possibility of doing that with your PS.
0 -
raven4mi, humm. What was your timeline with rads, original TE, FG, and replacement TE? If you don't mind me asking?
0 -
Hello I have TE questions. I've had TEs in since March and was going to be filled to 800 but at 700 I found out I had an infection. Running a very low grade fever. BTW I never had rads. The PS right away started talking about doing flap surgery which I don't want. They put me on keflex for a week then switched it to Bactrim but after 10 days I got severe vertigo so now I'm on doxycycline. He says I'm on the highest dose allowed (100 mg twice a day) but I don't believe him. I don't like my PS and was planning on switching once fills were complete before exchange surgery. I saw him Thursday and he kept saying he had to do surgery and put in a new TE but when my husband asked if before doing something so invasive, could I be admitted to the hospital for IV ABX first and he said yes (he told me no when I asked before grrr) so they want to put me in the hospital Monday for IV ABX then if no improvement do surgery on Tuesday to remove the TE. If there's no internal infection he'll put in a new TE otherwise he'll leave it out. He said he thinks it is cellulitis as he can't feel any pockets of fluid. Also if oral ABX works over the weekend then it will all be cancelled.
My questions/concerns are (I know I need to ask Dr but thought I'd get some input first. Of course I didnt think of these questions until late Friday):
-If it's cellulitis, why remove TE since there's no internal infection just infection in the skin and cutting it would just expose it to more infection.
-Is 24 hours really enough time to respond to oral ABX? I feel like the Tuesday surgery date is because that's when he had a slot he wanted to fill.
-When I had my first MX I didn't get recon and BS said she couldn't leave any loose skin because it increases risk of infection so isn't a stretched boob with no TE going to be even harder to resolve infection?
-Seems like they could instead remove a little fluid from TE so skin is not quite so tight for a bit.
Just thought of another one, can't they do an ultrasound to look for pockets of fluid?
Sorry for all the questions and I know I need to ask doctor but there's so much wisdom and experience out here.
Thanks!
0 -
TWills, oh my gosh, I started reading your thread and can't believe how we are going through similar situations. Infection and a PS I don't like or trust. I'm going to go back and read the responses. I do know that you can change your PS but I'm not sure anyone would take me now that I have an infection, I was planning on changing after my fills before my exchange surgery and now this infection has it all screwed up. But I did talk to my BS and my MO about switching and they both agreed I should change PS and gave me someone they recommend. Monday I'm going to call and see how long to get into them. Both MO and BS said they will call the new PS so they get me in sooner but I just don't know if that will be soon enough for my infection but definitely going through another doctor (MO or BS are best) is how you get seen sooner. The PS relies on referrals from these doctors.
Also, My PS told me no about going into the hospital for IV antibiotics. He just kept telling me if it gets worse go to the ER. But apparently he saw me crying as I left his office so his office manager called me and at my next appt she came in to act as liaison and I brought my husband into the room and suddenly he's like sure we'll put you in the hospital for IV antibiotics.
I'm going to go back and read more about your situation. Frankly at this point dealing with the medical community has been more traumatic than the cancer itself. There's been a few gems but the rest have been horrible.
Oh and I know what you mean when you feel like they'll just walk out if you ask another question. I'm sorry but that's abusive behavior. We are scared, we have to be our own advocates, only a bad doctor/nurse/PA doesn't want questions, it really sucks. I'm tired of fighting to be heard.
0 -
LisbethS, how very similar we are! Stinks not to be able to trust in your Dr. My PS has gotten better each appt this past week. I just think he doesn't think on the fly very well which is not doing anyone any good. I'm sure I have an infection because I've had of 6 days of fever but I'm not even sure it's in the breast. It's swollen and I have some muscle pain, however, my surgery was only 6 weeks before that started and I had also completed 3 weeks of intense rads so who knows. At my first appt with him two days after fever and pain started he didn't say anything about giving it time, he softened up on that by the end of the week. Hopefully this next week he'll concider trying more methods of clearing it up if needed. What a mess we're in!
0 -
TWills, I'm glad your PS is coming around. I had such a horrible experience with my PS at the hospital after my surgery that I think I'm having PTSD just thinking about going into the hospital and having him do surgery again all those things I've tried to forget are coming back. Sorry about my rant last night, I think I'm losing my mind.
I think you're right that you have an infection because of your fever, that sure is an indicator of what's going on with your body. Does your doctor explain what the fever is from? Does rads ever cause fever? I haven't had rads but I know my chemo gave me a fever with every round. Have they checked your WBC and other blood tests? Glad your improving and your PS is improving too. It's so important when going through all this we have doctor's we can trust. We have enough to deal with. Sounds like you had a lot done in a short amount of time.
Somewhere on this site is a great video from an oncologist talking about being your own advocate, it gets me teary eyed every time I watch it, but in a good way. It gives me strength. I'll try to find it and post a link.
0 -
LisbethS, I'll see my RO today and my PS again tomorrow. Hopefully I'll know more then. Antibiotic has worked but I still have some pain around the incision which had went away before this started, some swelling especially around the incision and my fever is still hanging in there, not quite as high though and today is the last day of antibiotic. I did have fever with chemo with a WBC of 0, I was isolated in the hospital with IV antibiotics 2 of the 4 doses of AC, would have been more but I refused the 3rd and 4th time. My MO and infectious disease Dr said I was the lowest they had ever seen. Had issues with WBC with Taxol too. Not sure if that can be an issue with rads or not. But just the rads after a surgery alone is enough to have an infection, it halts healing so this can definetly happen.
0 -
I had my TE's placed on August 7. I am doing delayed reconstruction as my bilateral mastectomy was in March. I had my drains removed on August 16 as I had minimal amounts of fluid. My PS told my husband after surgery that my pec muscles were very tight and he could only fit 2 drains in. I was happy about that. Then on Saturday August 19, I developed a large SEROMA on the right side. I also felt bad, it was slightly red and warm to touch. I called my PS (he had given us his cell #) and he told me all the options of dealing with the SEROMA. I was already on Antibiotics but he had me come in on that Monday. He instructed me to put 2 layers of compression on and to only take it off to shower. At the appointment, he changed my antibiotics to Bactrum and Levaquin. He said he is super aggressive with his recon patients. He also told me that if the TE IS INFECTED, the whole breast will be red or kind of like the color of a grapefruit. He also said he would admit me right then for IV antibiotics if he thought it was infected. He said the serous fluid was full of protein and sugar and that was the perfect environment for bacteria to grow!
He had told me before I had these TE's placed that he wanted me to go home and do NOTHING for a month. I'm on my last week of compression and doing nothing! I get my first fill on 9-11. He only does 50cc at a time. My TE's are 450cc. I'm a small person 5'7 and 117 pounds.
I hope some of that information helps someone. I feel blessed to have found a PS who is aggressive with his reconstruction patients. I'll be praying for you ladies who are struggling with infection type issues.
0 -
Hi jswfosu, thanks so much for responding. That does help a lot. You really are blessed to have a PS that explains things and listens and doesn't mess around with infections. I'm kicking myself for wanting to wait until after my fills were complete to go to a new PS. Although, after being very assertive, I did get admitted to the hospital today for IV abx, YAY!!! I'm pushing back on surgery tomorrow as it won't even have been 24 hours on IV abx before surgery. I'm pushing for another day on IV abx and then make the surgery decision.
They keep saying they think i have cellulitis but sounds like it could instead be an infected TE even though they can't find any fluid pockets. I sure have the bright red boob.
That's excellent that your PS only does 50cc at a time. I did 60 cc and my PS wasn't happy, but he agreed. My fills weren't bad at all but I sure was nervous.
Good luck on your first fill on 9-11.
Time to try and NOT sleep in the hospital. Thankfull for ear plugs.
0 -
Lisbeth:
I know someone (although she was direct-to-implant) that went home from the hospital during infection with her IV meds. I don't know how, but she did.
So -- there are options. Hope you have a successful response!!! (I know how the infection watch goes -- it's not fun.)
0 -
Well, unfortunately I had to lose the expander, it was taken out today. Everything went smooth and I'm home now. Decided to keep the right one, hoping it will make me more comfortable, I was in constant pain with the fiber fill inserts and the prosthetics were ok but the bras never fit correctly which made those hard to wear for any length of time. Maybe the remaining expander will anchor my bra and keep cotton inserts from pressing so hard on that sensitive area. It was aweful before. It will be numb for a long while anyway so that will help. Onward and upward I suppose. Hoping for successes for those on antibiotics now! Good luck ladies!!!
0 -
twills - did your surgeon by any chance send anything to pathology (should have sent your removed expander) to culture for infection? If you have any remaining bacteria in the wound it would be a good idea to remain on the correct antibiotic for a duration after surgery. A culture will provide info about the most effective drug to use.
0 -
twills, I'm so sorry you had to get your TE removed. I'm glad the surgery went well. Are they planning on getting the infection under control and then putting in a new one or did they do an MX--sorry if I'm being daft. I know what you mean about bras, prosthetics and compression, it's sucha pain. I'll be thinking about you and praying for a speedy recovery.
I'm in the hospital still but they moved my tentative surgery for TE removal from today to Wednesday. Hopefully won't need to get it removed as I'm finally responding to the IV abx. Another day of IV abx will be good.
Hi eastcoast! my PS did mention today that they might try to send me home with IV abx so we'll see if insurance approves it.
Tired of the hospital and wanna go home. But at least the experience has been better. Really nce nurses and PS is behaving himself.
Gnt
0 -
SpecialK, I believe they are testing, I know I over heard them ordering a MRSA test so hopefully they will check for others as well, but I'll ask for sure. They sent me home with the usual antibiotic Keflex which I'm told covers about 90% of infections. I also have a drain so that should help as well. Woke up this morning to zero pain so hopefully I'll heal quickly:) I was pissed to loose it and let them know at my Dr appt before the surgery and actually pitched a big ole fit, for me anyway, I'm a pretty chill person. Pretty sure that's why they sent me on over to the hospital to take it out asap, before I decided to go rogue and leave town. Lol
LisbethS, Good luck today, I'll be thinking of you and hoping for the best!
No, I can't have another one placed because of radiation. Well, I can but it will be a year when I've healed from it. I had already started and still have 3-4 weeks to go. My BMX was in Dec and didn't place TE's then, had a different PS who didn't like to do that before rads for just this reason, no regrets though. Not sure what reconstruction I will have, especially now, we were going to try just an implant which was the reason we put the expanders in before rads(to create the pocket) it would have been the least invasive but often fails because of rads but then we could have moved on to the bigger surgeries. I've been researching everything and will continue. Good luck!!
0 -
TWills:
So sorry about this. I hope you find a solution during your research that is a workable, even great, one.
Reconstruction is not as easy as the doctors make it sound initially, is it? I just had my PS tell me that since I had a post-op infection, I'm more at risk (perhaps the same infection, I don't really know) at Exchange. Which is next week. Ugh -- I feel the infection watch coming again to my bathroom mirror soon!
LisbethS: Glad you are responding! And that they mentioned option of sending you home with IV. More time to respond and heal!!! I would certainly do this if I had to as well.
0 -
eastcoast - is your PS offering a prophy antibiotic to start in advance of surgery? I would ask for a broad spectrum one in light of your previous experience - better to head it off at the pass than to fight it once it's here.
0 -
SpecialK:
We discussed my taking an antibiotic starting AFTER surgery (go home with prescrip deal). She said something about a stronger one (I think) due to the infection.
Do you mean starting one BEFORE surgery? My PS is on maternity leave, no kidding, and her first day back in next Tuesday. I have a pre-op with her that day -- surgery Thursday. I don't know if I could do much before next Tuesday.
Your advice is appreciated! Yeah, I don't want to do the infection dance again. I had 3 antibiotics to kill the last one. (MD Anderson protocol for red breast as far as I can determine. They did a number on my stomach but they worked.)
0 -
eastcoast - yes, starting the abx before surgery. When I changed PS my new one started doing this as a precaution. Most oral broad spectrum drugs build to max effectiveness within 72 hours so it might still be enough for you,and I also got antibiotic by IV in pre-op, then followed up with the standard post-op abx afterward for 10 days. All of this and actually none of my surgical issues were due to infection, I just have a super cautious new PS. We have been together for 4 surgeries now - fat graft to flat side, new TE, exchange for that side and downsize and nipple removal on right, last was nipple removal on left, fat graft, and port removal. She did the abx before and after for the new TE and the exchange since they were more invasive procedures.
0 -
Thanks! I plan to ask my PS about this at the pre-op.
0 -
eastcoast I'll be sending no infection thoughts your way. Proph.abx sounds like a good idea with your history. Still doing the Snoopy happy dance that your getting your exchange soon.
TWills, there's a lot of good flap options out there and there's many do wait the year for implant. Sounds like you have your priorities straight. Good job throwing a fit, made me laugh. Keep being strong.
SpecialK sounds like you found a great PS. I'm kicking myself for not finding a new one sooner,
Infectious disease doc came in today. She was so knowledgeable and explained everything so well. I'm getting a picc line and then two weeks at home IV abx then re-evaluate removing TE after two weeks. She said bacteria can colonize foreign objects in the body (TE) which I knew, and she said they produce a slime barrier that the antibiotic can't penetrate--interesting. So another day in the hospital. I've never had a picc line and not looking forward to getting it put in. Wish I'd kept my port, sigh.
Sending everyone happy thoughts.
Here's the page with the video about being your own advocate--don't be turned off by the title or the beginning of video. It gets me teary eyed in a good way--makes me feel stronger. It's about 25 minutes I think but worth it
https://community.breastcancer.org/blog/have-you-been-told-youre-a-difficult-patient/
0 -
GOOD luck, Lisbeth! I have a great feeling that the at-home abx are going to nip this infection in the bud! I would not look forward to the pic line, either, but would be happy to have the option I think. It sounds like you have an excellent team in place.
Thanks for the video!!! Keep us updated on progress.
0
