TE TROUBLE
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SpecialK, Does the tightness/iron bra feeling go away post exchange?
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Hi! New to this site. I also am having issues and had my left expander out due to infection. I am going back in to do a fat transfer & have the scar tissue that has adhered to my ribs lifted. I'm trying to find out more about this surgery and the surgeries that follow. Any experience out there?
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Special,
I haven't gone to PT yet because i hate it...lol. I went for my back, and it never helped. Yoga usully works for me, but I have been bad. I need to do it more. I even ordered a special cd for BC yoga stretches. Also, something I realized after I started doing Yoga was that most physical therapy is based on Yoga. So, I will try to be better about getting it done. I went for a walk last night, which I haven't done in a long time because it is so hot in Texas, but I forced myself, and that even made me feel a little better.
I appreciate your concern. You have been so nice. It means so much to me.
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Heidi, I just had my left TE replaced, my PS also did pull out the scar tissue, fatty nodes too. I am still draining out too much, my PS is concerned because of the chance of infection with them in. But over 80 cc is too much to pull. It will be two weeks on Wed. So pray it drops. I think he can pull them Friday, if they drop by Thurs. Cause I am sure he won't pull them tomorrow. Wheeeeeee! Are we having fun yet????!!!???
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A friend who had her BMX same day, same hospital as mine had to have an infected TE removed today. Her PS said it was so infected, the TE was ready to explode. When she asked her PS how rare TE infections that lead to removal are, he told her in 15% of cases. I guess it is somewhat rare but being immersed on these boards makes it seem much more common.
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Well, the title of this thread IS TE TROUBLE! You wouldn't find people on here if they weren't having problems! Except for my drain output, so far so good. Being so careful, my DH and son are taking care of the litter box, I sit in my chair so cats can't lay on me with dirty feet. Washing hands all the time. Changing dressings every day, washing with hibiclens, LOL, hope its enough. But, stitches are still covered with steristrips, but feels good. Breast is not tender or red. All good signs. Please tell your friend there is hope in the future. Much love.
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Goldie-special is right, I think the PT is really helpful. The TEs are so tight but when I do the stretching every day I feel better. Each PT session is hard and I feel sore to start but it does feel better over time.
I am trying to work out some extra fluid under my arm. My left side gets so swollen by the end of my 12hr shift. I asked PT if it could be lymphedema, she wasn't sure due to the LD flap. May have it checked by a LE specialist. Had so much seroma in my back after surgery, worry about LE.
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jnprsn - for most people the tightness does go away. If you think about the structure of the TE, which is essentially like a piece of tupperware with a hard back and somewhat flexible front, it seems that it could only be uncomfortable. A silicone implant, or a saline one for that matter, is uniformly soft all the way around, so it is by definition, more comfortable. I felt immediate relief at exchange, from the moment I came out of anesthetic. That does not mean that I do not have awareness of the implants, I do. I have pretty large implants so they are heavy and at times they feel tight, but they do not cause pain, or the same feeling as the TE did. Some who have implant reconstruction do experience capsular contraction and have a great deal of tightness. My PS advised frequent massage to keep this from happening, and I was compliant, and do not have it. Stretching improves the tightness, I will notice when I have not been doing enough. Some people have issues with nerve damage, post-mastectomy pain syndrome, rib discomfort, etc. that causes ongoing issues even after exchange - we are all different. Regarding your friend - if you guess that 20% of us have issues, either infection or skin healing like I did - that is 1 in 5 - not that rare!
goldie - if you can go to a LANA certified or lymphedema trained specialist for PT they can do very specific exercises for recon patients - that might help. I think yoga is a great thing to do to help stretch and open the chest. Try it and see if it helps! I am glad that you feel I have been helpful - that is why I come to this thread - so many people have these issues, it does help to hear from those who have gone through this.
moon - still have my fingers crossed for you - so far so good!
heidi - are you fat grafting in place of the TE, eventually replacing the TE and having fat grafted, or something else? I just want to clarify so you can get the best answers to your question. A number of us have fat grafted, myself included, but it was after exchange.
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Special, it's wonderful that you didn't abandon the forum when you were done. It's a great way to pay to forward for the help you got, and nobody knows more than somebody that has actually been there, not even the doctors. People like you, and Whippetmom are doing a service that a price can't be put on. There is a certain security in knowing you will be here to if I have a question, or need to talk. My frustration level is going up lately, and my PS would like to see me on anti depressants. He said it helps most of his patients get through the hard part. I have always prided myself on being strong, but I think I am tired, and need the help. So, I just might try something. Who knows, it might be just what I need to get motivated to do some PT.
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goldie - that is exactly why I come back - it is a "pay it forward" thing. I also participate in a Her2+ vaccine trial for the same reason - totally worth the time commitment and travel, not only for the potential personal benefit, but to bring the vaccine to market and help prevent recurrence for future Her2+ patients. There were many people who participated in the trials for Herceptin, which may have saved my life, and the vaccine trial is a way for me to honor their bravery. On the anti-depressant front - do what you have to do to get through this. There are many, many people who take them to manage during this stressful period. It is worth a try, right?
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I have a friend who went through the HER2 and Herceptin treatment. She is doing great now, and her implants are awesome. She was ziplining this weekend...lol. I love to hear stuff like that when you know somebody has been to hell and back for almost 2 years. Do you feel save being in this trial? What does it entail?
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GOLDIE, do whatever you need to get thru this with as much of yourself left as possible. If that means a bit of help in the form of pills, well, that's what it takes. I take supplements, prescriptions, and even topicals to help my body handle this stuff. So there is nothing different about getting that kind of help. I had to get that kind of help about 15 years ago, lasted for 2. Got better. Will take again if I get there again! Much love.
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goldie - the Her2+ trial is a single blind (vaccine or placebo, which is a drug that is similar to Neulasta, so there is nobody enrolled who only gets a "sugar pill" so to speak) that is testing two different vaccines, and you are sorted according by histological type. Histological type is the same mechanism for determining suitability to organ transplants. The vaccine is geared toward those of us who have completed chemo and Herceptin and are looking at some insurance for recurrence prevention. The trial is in later phases so they have gathered a fair amount of data regarding side effects and safety. Aside from some allergic reactions, mostly skin related, there have been few adverse effects. They have also found that one arm has broader applicability than originally thought - for those who express lower levels of Her2+, but not enough to warrant giving Herceptin, so that is a bonus.
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Hi all, just back from vacay and checking in.
On the iron band feeling, mine went away. Most of the time, I don't even notice the left (cancer side). Feels normal. Right side (infection side) is more noticable. Bras affect it a lot. If I have one that is the least bit not wide enough, I am peeling it off in the car after a few hours. Doesn't seem to make a difference if it is wire or not. It will still bother me if it isn't a perfect fit.
Goldie...for me, the moving on is the hardest part. Even the vacations...I feel like I need to take them all and do as much as possible,, just in case. So, I jumped at the chance to go to Thailand when our daughter was there. Was a little more hesitant on the recent Alaska trip as that made two big ticket trips in a ten month time period, but again, decided that going with all these friends would be the best way.
My next vacation is going to be a cheap trip to a beach where I sit for a week and do nothing.
I am in the same trial as Special K for the same reasons. I hope it will make a difference. The nurse manager for the program said that as they move into phase III, they will begin giving it with herceptin. She is wondering how that will impact the study results but thinks it is a good sign that they feel it is helping.
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Ok, talk me down from the ledge. I am so sick of FREAKING detours! I have to call and cancel my Livestrong program. My drain is still in. Dr won't let me do it now. I have been trying to get in since January. Next one won't be til next Jan. So I am pissed. My PS also wants to talk with a breast surgeon to see if they need to go in and reposition the drain, SS he thinks the drainage is coming from the node and scar tissue he removed during implant surgery. He says he wishes he had left it alone. But I am glad to know it wasn't anything to worry about. Am just upset its not going perfectly this time. He filled me another 100 cc. No pain, just feels tight, so I took a pain pill before it hits. sorry about the whining
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Moonflower - so sorry you are going through this. It is time for you to catch a break. Hang in there. Stinks about the Livestrong program. Hugs and patience for the detours coming your way!
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moon - my Livestrong program enrolls continuously - your does not?
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No, they fill up a class, and you have to wait for it to be over before the next one starts. So its twelve weeks before the next class they might start the next one in Nov. Possibly. But maybe not til Jan. If. Maybe its just not meant to be.
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Moon....I will talk you down....you have been through so much and the finish line is in site! Take it easy, that class will be there and in the mean time, if you have any questions, you can find all the info you need on this site. My drain was pulled too early as he was paranoid it had been in too long and it all went to hell after that.
YOU CAN DO IT!!!!
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moon - interesting... Ours just added the newbies - your twelve weeks just started whenever you first arrived.
How are you doing?
Hi fluff!
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Thanks for the pep talk, Special. I am seeing my doc tomorrow. I want something to take soon. One good thing happened today. My expanders are looking as close to anything I could call breast in a while. I put on my favorite sundress, and waited till my husband got home (we were going shopping) and he said it looked great, and he doesnt lie to me. A glimmer of hope that my new foobs will look a whole lot better.
That study sounds interesting, and promising. Proud of you guys!
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Ok, I'm off the ledge. Thanks! LOL At least the implant is doing well.
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Hi Ladies!
I had my last fill today and my exchange is set for next Wednesday. I feel like I have a knot in the top middle of my back. Is this common with TE's? Very painful. Also, will I have drains again?
I did not have immediate recon.
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Moon, glad to hear the implant is doing well!
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Michele, I had massages two or three times while I had expanders due to pain and strain between my shoulder blades. The therapists did it like a pregnancy massage. It helped a lot. I think that I kept trying to hold my shoulders back to keep them loud and proud and it just strained everything. I still have issues there, with some arthritis along one of the verterbrae. I think my muscles have been affected after so many surgeries that it is just hard to get everything back into shape.
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michele - I had that pain right between the shoulder blades at the end right before exchange too - yhe pectoral muscle is being displaced by a rigid expander which is unnatural. The musculature in the back, the rhomboid and trapezius muscles, are trying to counteract this. At exchange the expander will be replaced with something much softer and more flexible. My implants cause that same pain only at the very end of a 5-6 mile walk, but they are pretty big. Also, I did not have drains, but that sometimes depends on how much pocket work your surgeon has to do, and whether you are at risk for production of excessive fluid. I tend not to produce much in drains - I had all of mine (6 drains in 3 different surgeries) for less than a week.
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Ok, wow...thank you specialk!!!! Thankfully I have only a week of this. I feel very fortunate to have not had any major problems. This leads me to "knock on wood" because I am not done.
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michele - I knock on wood every day, and I am done, lol! I think....
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Ditto the knock on wood....throw salt over the shoulder, whatever it takes!
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Moon-Glad you are off the ledge, it seems like we all reach a point where we just can't take it any more. Thankgoodness for these boards!
Michelle2013-Wow! Last fill and then exchange a week later, funny how some PSs will do it so quick and others wait, (it seems like forever!) My last fill was in June, he won't do it for at least 12wks after last fill...
Wishing you the best in moving to the squishy side! My PS may or may not use drains depending on how much work he needs to d. I had so much seroma after bmx/LD flap recon he thinks I will probably need them, but it will be wait and see. Hope we are done after this as well...knock on wood!SpecialK-Good to know about massage, but I have waited due to LD back incisions. I thought it was from those incisions never thinking about the expanders causing some of the back pain as well. May check in with PT about massage options!
My TEs filled to 800cc and remain really tight. Still having cramping some in the eve and at night along with the back ache and underarm swelling and pain. Counting the days till exchange!
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