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TEs. A Beginner's Primer

moonflwr912
moonflwr912 Member Posts: 5,938
edited July 2022 in Breast Reconstruction

Hi. If you've found this thread, you are probably interested in information, tips and help. We'll all do our best to help. We'll post links to several other threads that may be of help as well. But many of us realized that we were scaring Newbies on the TE Trouble Board and that there should be an information Board instead! LOL. So I'll post first. As you can see I had a lot of "Scenic Detours" on my "journey" . But there are many, many others who are on the "Express Train" on their Reconstruction Journey. You'll see a lot of them pop in with their best tips!

First 3 rules!

1. Talk to your PS. They are all different from one another and have different rules about restrictions and bras.

2. If you are experiencing any fever, or redness in the breast, CALL YOUR PS OR BS! Many problems can be stopped in their tracks if intervention is in time.

3. Keep your end vision in mind. It will help you through those inevitable days of "Why, oh why, am I doing this?" We all have moments of doubt, or comments about "why you are doing this operation just for vanity?" All of us here know that this was a major decision made with information we had at the time and the knowledge that we needed this for ourselves.

I may add more rules as I think of them or as requested by my wonderful poster friends here on BC who are so willing and able to share that invaluable knowledge with everyone.

Finally, the Mantra of Exchange City and TE Boards:

"Just because you CAN, Doesn't mean you SHOULD"!!!

Remember you are still healing on the inside. And even if you feel fine, don't try to do too much. You could set back your recovery and take even longer to get to those "Squishies"!

Much Love,

Monica

Below are some helpful links:

Breast Implant 101. This is Whippetmom's helpful board that will get you pointed in the right direction on sizes and types. Please follow the instructions on the very first post in the thread.

https://community.breastcancer.org/forum/44/topic/...

Bras 101 - everything about Bras. Please remember that though these women are trying to help you, your Plastic Surgeon or Breast Surgeon has the final word. They know all your circumstances and information and you should follow their recommendations. That said, this is very helpful information.

https://community.breastcancer.org/forum/44/topics...

Exchange City - This is what we aim for! For those of us getting near to the "Squishy Side". For those who will have an exchange to implants soon. People on this board are very helpful and encouraging. Ask questions!

https://community.breastcancer.org/forum/44/topics...

TE Trouble - Yes, sometimes the process does not go as smoothly as we would like. In fact it can go very badly and the TE Trouble board is for people who have more issues than we can handle on this information board. Please remember that as in chemo, not everybody gets all the side effects or gets bad side effects constantly. Things happen. We don't like it, but they do. (or would we even be here? LOL) So don't go looking for "Trouble" unless it finds you!

https://community.breastcancer.org/forum/44/topics/771702?page=281#idx_8418


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Comments

  • moonflwr912
    moonflwr912 Member Posts: 5,938

    Ok. My best tip is one I'm stealing from the TE Trouble Board : "Just because you CAN do it, doesn't mean you SHOULD! 

    Simply put, take it easy and DON'T overdo! You may feel good, but your body is healing and giving yourself time to heal is the best thing you can do to insure the best outcome. 

  • raelan
    raelan Member Posts: 84

    Thank you, thank you.  The timing on this is perfect.  I'm getting T.E.'s in 2 weeks and have to admit that the "other thread" was a bit unnerving to read through at times. 

  • aunt_paula
    aunt_paula Member Posts: 62

    I am so glad to see this thread!!! I am looking forward to being done with TEs and exchange surgery--I want it to be January. LOL

  • mmtagirl
    mmtagirl Member Posts: 325

    So far so good with TEs.  I will never say that I fell NOTHING because we a know that is not true. Uncomfortable, yes. Occasional pain,yes, but tolerable.  At surgery I was filled to 200ccs.  First fill was three weeks later at 100ccs.  Last week 120ccs.  Tight? Of course but tolerable with some help from left over pain med that might and Tylenol after. Ok, and a little wine!  Will get the same next week.  All is healing according to plan.  Scared? Sure. Do I think about them 24/7- you bet!   But, girls, it is all doable!

  • Smaarty
    Smaarty Member Posts: 2,618

    this thread is a great idea. 

    So I'm done with my journey on this BC ride. I had the TEs placed 5 months after the skin sparing bmx because I had a breast lift 12 years ago. No nipples. I got fills of 50cc a week, starting at 2 weeks after sx.  Had the stupids drains for 4 weeks, annoying but I learned to enjoy my pain meds, mostly at night until they came out. Started with 50cc and got to 500. Only after the last fill did it get a little uncomfortable and itched. The implants were done in February, drains for only 8 days. So saw the PS this morning, everything looks good and healing nicely. 

    The TE are definitely annoying, mostly in the armpits for me.  That is slowly going away now. I took family members and friends with me to each appt, we all got an education on TEs. The fills did pinch most of the time, only once on one side did it really hurt so he gave me numbing cream. So it it hurts ask for something to help. Apparently most women are numb and don't need anything. I must be an exception to the rule, which my PS says is a good thing to have feeling. 

    My tip: GO SLOWLY with the fills, this is not a race you have to win. If it takes every other week or more, then do that. Listen to what your body is saying.

    So for newbies, come HERE! Don't go to TE troubles unless you're having issues. Ask questions. Someone will always response. TEs are necessary if you want your boobs back.  They can be painful, annoying as hell and hard as a rock, depending on if you have them overfilled. MIne never got hard.

    BUT, I think it's worth it in the end. Would I do it again? You bet ya!!  If I have any issues, I would be willing to try again.  I know I can live with being flat, but I would try again if given the option.

    Sue

  • Smaarty
    Smaarty Member Posts: 2,618

    Oh, when your doc say to do nothing?    DO NOTHING!!  Or you'll have the drains longer or pop something that's not suppose to pop! I was told do NOTHING for 6 weeks. That was hard to do because I felt fine after about 3. But I was good, still haven't vacuum anything yet and maybe I never will :)

    Say this repeatly!!!   Just because you can, doesn't mean you should!!

  • 2nd_time_around
    2nd_time_around Member Posts: 14,084

    my advice would be: be careful what you see in the mirror. The mirror is NOT (and let me repeat, NOT) your friend at this point. I am excited to say I'm pretty much done on the reconstruction journey (debating about 3D tit tats, but as has been said, that's the "cherry" on top of the sundae!). Met with PS yesterday and she's very pleased and so am I. But looking back at a year ago (finished with fills, TE's in my arm pits, mudflaps, huge valley between the foobs) and awaiting for exchange, it was not a pretty picture. Now I realize, it took years for my native breasts to grow so a little over a year was the accelerated process. Patience required for a great outcome. 

    Hang in there, there is an end in sight!

  • jenwith4kids
    jenwith4kids Member Posts: 216

    such a great idea for a topic, I didn't like the TE Trouble thread, it made it feel like I was likely to have issues.  I know I can go there if I need to , but happy to come here and share/learn.  I read somewhere on the board yesterday, "don't compare, do share"... That is so hard to do when almost everything that has happened to me since 1/9/14 has been brand new.

    I've had my TEs since 2/14 (happy valentines day!), no big problems so far, all seems normal.  Got 350ccs during surgery; added 50cc's last week. Have an appointment this week for another 100 which might be my final.  I think I will ask for only 50.... These are going to be with my all year, not sure I have to rush to get them filled, just started some PT...want to resolve some of the tightness in my left arm first, probably okay, right?

    .have a great day!

  • Mommyathome
    Mommyathome Member Posts: 876

    Hi ladies,

    Have any of you been told by your bs or ps if sleeping on your side w Tes is safe? I had BMx on jan 29 just had my first fill of 50cc yesterday.i haven't been able to sleep since surgery. I kinda got comfortable... If that's what u want to call it, sleeping on my side last night. I'm a belly sleeper so I can't get comfortable in bed. I've been bouncing between the recliner, bed and couch in one night since surgery!! Is it safe to tip to side and be propped with pillows or can this jeopardizes reconstruction by shifting Tes or putting some pressure.... Thanks. Please share sleep tips that have worked for you!

  • specialk
    specialk Member Posts: 9,261

    Most TE are sewn in so sleeping on your side should be fine.

    It is important to discuss with your plastic surgeon what your expectations are before you have surgery.  TE are chosen based on final fill volume and anatomical appropriateness, they have a height and width.  Eventual anatomical (teardrop shaped) implants require anatomical TE, so if that is the type of implant you are interested in discuss this prior to surgery.  Know that for most people, the volume you achieve with TE is diminished with implants, you will most likely not be as large once you exchange.  TE have a hard back and expand frontwards, stretching the pectoral muscle and skin.  Implants are uniformly soft so they do not project as much as the TE will.

    I am a firm believer in low and slow when it comes to fills.  Stretching your muscle and skin too quickly only benefits your PS and speeds up the process, but it can cause you more discomfort than is necessary.  Unless you are trying to fill rapidly to get to radiation, there is no reason to get very large fills.  I had 25cc weekly fills and did not require any medication afterward.  I also do not think large surgical fills are a good idea - it stresses your incisions too much.  I have seen it go wrong too many times.  Filling too soon after surgery is also a mistake.  This is not a race, and YOU are in the driver's seat, if your fills cause you pain tell your PS to make them smaller.

    If you do have discomfort your PS should be able to write a prescription for muscle relaxers - Soma, Flexiril, Skelaxin or Valium.

  • Previvor101
    Previvor101 Member Posts: 126

    Moonflwr you are a legend starting this new thread. I felt guilty posting on the TE Troubles thread as my "troubles" seemed minor in comparison to others. So here it goes....

    I had a prophylactic bilateral nipple sparing mastectomy with TE insertion on 6th Feb. Haven't been back to work yet (planned 5 weeks off). I work in a busy hospital with quite a stressful and busy job and didn't want anything to jeapodise my healing. I am surprised about how tired I gave been. I sleep for 8-9 hours every night (flat on my back, thanks TE) and still need a 2 hour nap every day. A bit apprehensive about going back to work and also colleagues asking why I gave been off and staring at my chest. Haven't quite decided what to say...

    Had my first expansion today. Had 150ml at surgery and an additional 70ml today. Feeling a bit tight but not too bad. Had some paracetamol and ibuprofen and feeling fine. 

    Also had a small area of  necrosis on my inferior nipple. Have been paranoid about it extending full thickness through to the implant or getting infected but had "debridement" today (a technical way of saying pulling of all the scabby bits) and it is healing fine.

    So a completely random question, has anyone been skiing with their fulling expanded TE's. Was thinking of going in July and am concerned about safety etc...

    Thanks everyone. 

  • mmtagirl
    mmtagirl Member Posts: 325

    Mommy, our surgery was the same day and I recently uncovered this technique to approximate side sleeping.  I still prop myself with several pillows to lay on my back.  Then I hug a king size pillow to my body to one side and lean into the pillow.  I find this technique much more comfortable for my TEs,   Hope it helps you, too.

    Previvor, I am not much of a skier so I can't answer your question but I sure hope I can kayak in July!

  • Mommyathome
    Mommyathome Member Posts: 876

    Mmtagirl

    Thanks I'm going to try that tonight. I laid on my side last night but the way I was propped strained my back.., which is already killing me. 

  • whitenack
    whitenack Member Posts: 39

    We had a wedge pillow left over from my wife's C-section that we used to keep her propped up the first month or so.  And, like you, she would rotate between the bed and recliner, back to the bed, whatever was comfortable. 

    I'll also add to the advice of slow, and low.  Our PS did 75cc every 3 weeks (she would do 50cc first, then if that felt OK she would put in another 25cc).  Don't be in a rush, and don't pay much attention to how they look when you first get started.  Things didn't start looking like breasts until we reached the recommended fill volume.

  • whitenack
    whitenack Member Posts: 39

    Previvor,

    We went skiing a couple of weeks ago.  DW's surgery was in November, and she was filled pretty full but not to the point where they were rock hard (375cc in a 400cc recommended TE).  Our PS said she would be fine since it was far enough out from the surgery.  She didn't have any problems skiing, but she also didn't really push the envelope or take any chances. 

  • aviva5675
    aviva5675 Member Posts: 836

    I also agree with small, slow fills. I started with 100cc at surgery, got my first 50cc at 4 weeks. Then 50 a week til I was done. Mine waits 8 weeks from final fill to exchange. 

    Dont think that how your te look will be anything like what you will be like after your exchange. They are just a mechanical device used to create a pocket inside you to eventually put your implants. They move and change as you go along. 

    Every dr is very different about what they tell you about bras, lifting, etc. Mine was very easy going. After I got my surgery wrap off he said I could do whatever I wanted about wearing any garment. I did have lifting constraints for awhile. Every dr is different about when you can start excercising. Some say do nothing for awhile, mine said it was ok to start doing minimal arm movements almost right away. You will read on bco all kinds of different advice drs give, so go with what yours says. But ask them questions!!!! 

    My te experience was good. I was terrified going in to surgery because of stuff read on te trouble thread, however much I knew that unfortunately a minority do have alot of problems. But I think the majority do very well. After my last fill one side was pressing a bit on a neck nerve and that was painful, but it resolved itself after a few days.  

    Go in to it thinking positive! Most of us come thru with few problems. Dont assume the worst!!

    Thanks Moon for starting this thread!!

  • momwriter
    momwriter Member Posts: 276

    Hi all, 

    I got a tissue expander when I had an UMX in 10/12. Because I want to give my skin a long time to heal after radiation (finished 6/13), (and chemo and Herceptin) I haven't had my implant exchange. My skin is still sensitive from the radiation even though it looks normal. 

    I've never had complications with my TE as far as infection, maintenance etc. I did fairly small fill increments and they did not bother me.  Once I was cleared to raise my arm high for exercises, the best therapy has been yoga. I had been scared I'd never be able to down dog again, but I do it just fine. Some poses where arms have to be fully extended back are a bit of a challenge because I have a bit of limited ROM- a few inches less- but I think that will ease up with implant and yoga helps with that a lot.  I'd be interested to hear success stories with implants and doing yoga- if ROM improved after the exchange. I also had ALND, so I can't tell if some of range of motion issues are due to that as well. (It's not a big problem, but I'm not the same as before- but who is?!) 

  • sarahjane7374
    sarahjane7374 Member Posts: 23

    My PS thinks I am slightly nuts because I really did not mind having the TEs.  I liked the freedom of not having bouncing boobs, and as a runner, I appreciated not needing to double up on sports bras every time I wanted to run any kind of distance.  It was after the exchange that I really realized how tight they were - I guess I had gotten used to the feeling.  He told me from the outset that it would take 4 months to fill them - I don't remember the cc total of the TEs, but my implants are 650cc.  I got 100cc at the surgery and gradual fills over 4 months.  The only one that was actually painful was the last one.  I was able to raise my hands over my head pretty much right away after my BMX - I don't remember ever not being able to do it.  The only real mobility issue I had was trying to use leverage - like unscrewing a jar or the cover for my prescriptions.  That sucked for a while.  And transitioning from lying down to sitting up. That was another challenge.

    My PS was very laid back as far as instructions.  I had to wear the surgical bra with the TEs for a short period of time and then he said I could wear whatever I wanted, or no bra.   Since the exchange, he actually told me "those aren't going south anytime soon.  You'll never need to wear a bra unless you want to.".  Alrighty then.....  He also constantly reminds me that I won't damage anything related to the reconstruction by doing upper body exercises.

    momwriter - I am looking at starting hot yoga soon.  I feel like I have my strength back (and then some) but need to work on flexibility.  I'll let you know how that goes Happy My PS just posted a link on his facebook page about how yoga is very beneficial for BC patients.

  • Mommyathome
    Mommyathome Member Posts: 876

    Thanks for the sleeping advice. I was filled 500 cc on cancer side and 300 on non cancer side during surgery. I've had 1 fill so far. I told my ps I wanted to do 50 cc at a time.... With help from ladies on here supporting me to be vocal!! Thank you, I think if she did 100 I would have regretted that and it would have made the experience awful. I was sore with the 50 but it was manageable. 

  • jenwith4kids
    jenwith4kids Member Posts: 216

    I love my PS, have had one fill so far (50cc three weeks after surgery, had 350 during surgery), he has indicated he will do 100cc next time - Friday, which is four weeks from surgery.   I think I am going to ask him to do only 50.  I will have these TEs for quite some time given all the chemo and rads I will need... No reason to go too fast.  I am also going to ask if he will fill me a little more than planned....just to keep me stretched enough to accommodate any changes that might happen during rads.  Though I suppose I can always go with smaller implants if I have any issues with the radiation.  Don't really want to go smaller, but I'm not sure of the exact correlation between my previous breast volume and the current TEs, I just requested that my "new" boobs be the same size as my original ones were.  Also never discussed - or didn't realize - that there was a difference in the kind of implant from an anatomical perspective that would require different TEs.  I just know that my PS does excellent work....so I guess I'm not worried that there wasn't a discussion.

    I definitely felt better after my first fill...hoping that trend continues.

    My breast surgeon, who I saw today told me that I look great!  She said that the PS did a good job of placing the TEs, that she has seen some who just put them in sort of willy nilly, which might be okay if you are going straight from fills to implants without all the time needed for chemo and rads.  She also assured me, that the extra skin, fat, swelling, lumpiness, whatever it is under my armpits - not in my pits but under the band of my bra .... will lessen with each fill.  Phew!!

    Sarahjane, I can't WAIT to get running again, how soon after surgery did you do that?  My PS says as soon as I am ready.  My mind wants to go, my body is holding back.  I'm still taking Advil at least once or twice a day and my skin hurts (nerves healing, I hope). Not sure I could make it around the block yet.

    BTW....after my first fill I started sleeping on my side again! YAY!!!

    Have a great day, all!

  • sarahjane7374
    sarahjane7374 Member Posts: 23

    Jenwith4kids - I can't sit still really.  I was walking around the block (with my stupid drains) within 4 days of my BMX surgery.  I started running at about 6 weeks out - not long distances, but a couple miles a few times a week.  My PS said it was fine as long as I felt ok doing it. (Love my PS, too!)

  • aunt_paula
    aunt_paula Member Posts: 62

    Yay, Jen, it sounds like you are doing great! That is wonderful (and totally selfishly, gives me such hope that this process can go well!)!

    I'm not sure if this is the right place to ask about this, but since it's a part of the TE placement, I thought I'd ask. Has anyone had experience with having "skin islands" as part of this? Because I was believed to have a kind of tumor that recurs quickly and aggressively, I opted not to do TEs at the time of my BMX, and I told my surgeon to save nothing. I am very happy that he did just what I asked, but now because I don't have what I guess is the usual amount of skin left for reconstruction, the PS said I'm going to need the skin islands.

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435

    I'll repeat what's already been said here a few times, and what my PS advised me:

    LOW and SLOW

    Small fills, with enough time between each fill to allow your skin and muscle to completely adjust to the stretching from the last fill. 

    This is a not a race.  You want the best results, not the quickest reconstruction.  

    And why make this more painful than necessary? 

  • jenwith4kids
    jenwith4kids Member Posts: 216

    yay, I wish there was a like button....so glad spring is coming, sounds like I can maybe try running in another few weeks! Thanks Sarahjane!

  • Piano-girl
    Piano-girl Member Posts: 14

    Low and slow is right... I am small and started out with a whopping 30ccs after BMX.  I have done as much as 50cc fills and as little as 35ccs.  I am finding this last one (getting me to 280ccs) has been the most painful and so I am now going every 2 weeks.  I hope to get 20ccs in for at least 2 more fills before a 2-3 month wait for exchange.  I hate the feeling of these stupid balls - especially at night ...

  • moonflwr912
    moonflwr912 Member Posts: 5,938

    Wow! Welcome everyone! Thanks for the great info so far. 

    Aunt Paula, I haven't heard of skin islands. Must be some kind of skin graft. Perhaps the other TE board has someone who went through that. BTW, we won't kick anyone off who has trouble! LOL.  It's just that the TE Trouble boards may have answers about so many things already. LOL

    Regarding the fills, I had 250 or so in my TES at BMX.  Fills of 100 on the way to 850/900. Only the last 2 fills hurt. After the 2nd to last, I was in much pain for the first time. I just didn't expect it. So for my last fill, I asked for 50. That hurt too but it was the last. 

    I want everyone to remember that EVERY ONE heals at different rates. EVERY ONE reacts to fills differently. EVERY ONE will have different implant types and sizes. We will support each other but don't expect the exact same thing. There is always a range of reactions. 

    Much love. 

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435

    Moonflwr, great point about everyone being different.  I said LOW and SLOW but I intentionally didn't say what that means in terms of the size of the fills or the frequency of the fills, because it is different for everyone. 

    A 'small' fill for me, being a relatively small person and having had naturally small breasts, is probably a whole lot different than a 'small' fill for someone who is larger and who had big breasts.  The rule of thumb that my PS used was that as she was injecting the saline into the TE, she told me to let her know as soon as I started to feel pressure from the TE.  That's the point at which she stopped.  Early on the fills were larger than at the end of the process; I felt the pressure much sooner when the TE was almost full and when my muscle was already quite stretched. By stopping the fill at the point that I started to feel pressure, it worked out that I never had more than a bit of aching on the first night after I had a fill, and then I was fine from that point onwards.  

  • Blessings2011
    Blessings2011 Member Posts: 1,801

    Immediately after my BMX with TEs, I was miserable. I was not taking my pain meds, because I didn't want to be a weenie. There were women on this board who had surgery and ran a marathon the next day (or so it seemed.) 

    Then the wise ladies who had walked this path before me told me to TAKE THE MEDS!!!! So I did, around the clock. Once I did that, things resolved pretty quickly.

    But in the midst of my discomfort, I forgot the most important thing about TEs:

    THEY ARE JUST TEMPORARY!!!! THIS TOO, SHALL PASS!!!

  • RoseBuds
    RoseBuds Member Posts: 28

    When I first had my BMX i decided not to have any recon done because I did not want all the complacations I had read about.  So for 2 years I was "flat" well more concaved than flat.  I hated the way I looked, I could not wear the clothes I wanted to and I ended up depressed and frustrated, I would tell myself I should be happy I am alive!! 

    Having no breasts began to have a very bad effect on my life, I no longer wanted to be near my DH and would not go to any social events because I did not want others to see me.  When I started to think I maybe should have not bothered to get treated for the cancer I knew I had to do something.  So I started looking for stories of people who had had reconstruction and things had gone well.  I spent 4 months reading everything I could about all types of reconstruction.

    I decided to have reconstruction using TE's and implants.  I found a PS that I felt I could work with and on Nov 8th 2013 I had my TE's placed.  I started fills three weeks later, having 50cc in each side every week.  I sailed through all my fills with little discomfort until my last two fills.  The second last filled me to 800cc and I had some pain and discomfort for 3 days but Tylenol took care of it.  My last fill took me to 875cc and I had major pain for two days then a dull ache since then.

    I am to have my exchange surgery on April 4th, so I only have a few more weeks to cope with the very tight feeling across my chest.  My PS is pleased with how things have gone with the TE's and I can see real progress and I am looking forward to the final implants.  I know they will need time to settle and find their best place but I am begining to feel happier in myself and a little bit more confident about how I look. 

    I have photos on the photo forum so that others who are thinking about delayed reconstruction can see how it worked out for me.  I wanted to share as I could find very few pictures of larger ladies who were having reconstruction using TE's and Implants.  I agree that slow and steady is the way to go!

    Kathy

  • Mommyathome
    Mommyathome Member Posts: 876

    Kathy,

    Thank you for sharing your story!! I had BMx on jan 29 and just had my first fill this past Tuesday. Boy, as I think about having to go back weekly to have it done, feel the soreness etc and then in a few months have to have the exchange, then in a few months have my nipple reconstruction and then a few months later have the nipple tatoos done etc etc I wonder sometimes if I should have just had the BMx without reconstruction. But I also think I would have been emotional about not having "breasts" . It's such a terrible thing to have to go through!! There are times where I just sit in my room and outloud say, I can't believe I was diagnosed with cancer!! It's do unbelievable, yet with my family history I always thought at some point I would have to deal with it... :(