TEs. A Beginner's Primer
Comments
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Ringelle, the Heal in Comfort shirt is great. I also used Pink Pockets.
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Heathet what was your drain holder called?
Ringelle where did you purchase that shirt?
Everyone : I had some doubts about my care niggling at me and was being scheduled for UMX on 4/11. My daughter arranged for me to meet a PS in Memphis to discuss possible reconstruction. I learned things that day that made me feel even more unsure about my plan of care. The PS offered to get me a consult with a BS for basically a second opinion. This week in a fairly last minute two days of consults I was astonished to find that my intuition was correct. I had been told insurance would not cover BMX. No oncotype or receptor tests were done. Found out incorrect info and testing should have been done. I cancelled UMX and am being set up for BMX with immediate reconstruction with TE placement in 2-3 weeks. Proves 2nd opinions are important. I need advice on things I will need.
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Sally, I'm so happy for you that you got that second opinion. It may have saved your life, and you'll have more symmetry when you're done. If I hadn't had the BMX I would have been worried about getting cancer in the remaining breast for the rest of my life. It's so worth it, for peace of mind, in my opinion. I can't BELIEVE your doctor didn't do oncotype or receptor tests. It makes me wonder how many women are getting poor care from your first doctor.
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Sally - the hospital that did your lumpectomy should still have your tissue sample. I would have it sent to a reputable hospital for pathology to find out your receptor status (ER, PR and Her2). Check with your insurance to see if they cover second opinions - most do but may require approval first. I had all of my scans and biopsies (done at my local hospital) reviewed again at Johns Hopkins to be sure they didn't miss anything. Insurance covered everything and it was very easy to arrange.0
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Stacy I think we are so shocked with our DX that we just do whatever we are told but I kept researching (mostly on this site) and reading all the posts that seemed to pertain to my problems. All the time I was wondering why is it taking so long to get info and why wasn't I asked if I wanted a referral to a place that handled breast cancer patients (a women's care place at least). When I realized I was getting answers that even I knew were conflicting I began to question if the care was right for me. I believe the doctor was doing what he knew to do and is a good doctor. It's just that there are other options out there that are better for me. Now I wonder about others being in the same situation I was in
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Granma3x my lumpectomy was for ADH on the left and my right side has the IDC. The core BX on the cancer was done in the doctors office under US guidance. My new BS is a seasoned lady surgeon who only does breast surgery and she is calling to get the samples sent for oncotype and hormone reception status if they will do it. She's going to try to get it done before she does my surgery. I have Medicare and a supplemental as insurance so I'm not sure how much will be covered. But so far everything she and the PS have told my agrees with things I've learned here and through my own researching. I feel so relieved now that I am on the right track but angry that so much time has been wasted. I have been dealing with this since 1-8-16. I could have skipped the left side lumpectomy and not had that large scar to deal with. I may have had adjuvant treatment if needed and surgery over with and be on the road to recovery. I was just so lost in the whole process. I should have listened to my daughter who is a Nurse Practioner and works with a great doctor. She tried to get me to do this first. In my defense I guess I was trying to be more independent and was just in shock. Well now I am on the right road and letting others help me. I can't cry over time lost I have to concentrate on positive things and go forward. Thanks for you guys being here and your wonderful comments.
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Ringelle-I was actual surfing the internet earlier for some front closure sports bras and I came across the comfort shirt ! It looked like it would be very comfy so I ordered one, but thank you for offering to send one! I appreciate you thinking of me. One last thing on my to-do list is to make a list of movies for my DH to rent for me while I'm recovering. Anyone have some good suggestions?
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Seedsally - you are so right- concentrate on the positive things and keep moving forward.
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Seedsally. . .I actually questioned my BS about why I needed two MRIs after initial biopsy, including one MRI with guided biopsy on non-cancer breast. I thought it was because insurance would not cover BMx without additional tests. My BS was great. She explained that the tests had nothing to do with insurance and everything to do with determining whether I needed SNB or ANB on both sides during my BMx. I did not have oncotype done until BMx, but BS did order receptor tests on both my biopsies and I had receptor testing on all tissue from BMx. Definitely get second opinions if needed.
Scottie
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Seedsally - You are doing the right thing of moving forward and forget about the past. I wish you all the best in your new medical team. Sending my positive vibes to you!
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Thank you ladies for your responses. Heathet I also ordered the same kind of shirt. I ordered the deluxe kit plus one extra shirt. One for the trip home from the hospital (2 1/2 hr drive) and one for changing into while soiled one is laundered. Now I need to get a neck pillow and one of those big pillows for support in the bed. One that had arms I think.
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Im having a horrible time with these TEs that I just got last week. (Im about to go see another PS for a prof opinion because of course my PS says everything is fine.) It feels like Im wearing a bra made of barbed wire and razors. My TEs only have one fill of 120 ccs. I have pain under my arms and mid chest. You can see the outline of these TEs in my chest! They are killing me and hurt constantly. No relief. No pain pills can touch this. IS THIS NORMAL??
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seedsally - I waited five weeks between diagnosis and surgery - it is not unusual to have a time gap, but I am sorry that your first doc was uninformed regarding Medicare coverage for this type of surgery.
warrior - yup, pretty normal. Are you taking muscle relaxers as well? Some find good relief staggering the muscle relaxer (Soma, Flexiril, Valium, Skelaxin), with pain meds. A surgical fill of 120ccs is also normal, not underfilled or a "small" fill that should not cause discomfort - the TE can only be filled in surgery to the skin tolerance that is tight enough to help form a new blood supply. If you see others with larger surgical fills it is because they had larger TEs or a larger skin envelope. In other words, you are likely filled similarly for your body/TE type and size, so the amount of CCs has no bearing on your level of pain. I found a turning point at about 1-2 weeks, then another one at about 4-5 weeks - hang in there.
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warrior. . .I second Special K. If you are not on muscle relaxers ask for them. I alternated Valium with pain meds and my PS had me on a high dose round the clock because she wanted me comfortable. . .as much as possible. I did not get up much for the first two weeks and not without help. I think I was only filled to 80 and 100 in surgery as I have very tight pects. I went back to work at 6 weeks. By then I was much better but still could not lift anything. Hang in there.
Scottie
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So here is the weird thing you guys - Im kicking butt in every other way. My BMX was 11 days ago. I had 3 drains out in 1 week (1 is left), my mobility is excellent (I do my own hair, shower alone, get up alone, etc). But these barbed wire TEs are KILLING ME? I mean, could there be something wrong - like they are too big? Or is it because I have not chilled out enough to heal properly???
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warrior - it is great that you are being self-sufficient, but it is possible that you are too active. Remember that there is a lot of internal healing that needs to happen. It is unlikely that your TE are too big, the PS decides which style/size to use based on measurements - did he/she take measurements prior to surgery?
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warrior- my expanders were almost unbearable for the first 4-6 weeks. My bs prescribed muscle relaxers which helped some but mostly what helped was time. Sorry. I also had 120ccs in surgery, which I didn't even know because I was still flat. After the first full of 100ccs things got better. Expanders are not kind, they are tough and can have rugged edges when deflated. When is your fill scheduled?
Ringelle- congrats! I have a full this Friday which will put me at 520 (420 now, and may be my last as well. My skin is tight but looks ok. my ps waits 4-6 weeks before exchange surgery but I'm trying to coordinate it with an oopherectomy, so who knows when these things will come out!
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Warriorwannabe - Like everyone said, you should take it easy. You probably have been overdoing it. After my surgery, DH was shampooing my hair for the first 2 weeks, until I gained more strength on my arms and I got my ROM. I think doing things slowly helped a lot in regaining my arms strenght now. Hang in there and things will get better.
I had my 3rd fill last Friday, I have 160cc now and I felt more uncomfortable with the TEs than before. I can feel it under my arms but there are times that it goes away. I may have 2 more fills and hoping these TEs will treat me good. 😉 PS said I can schedule for exchange surgery anytime after mid-June.
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Hi warriorwannabe, your screen names seems right on! It's such a hard thing when you are used to being independent to being sedentary and dependent on others. I'm at 6 weeks out now and the way I feel now isn't the same as at 5 weeks or 4weeks, etc... Sometimes I would notice no improvement in energy level or independence and then wham! I would make a lurch forward in healing and wonder where it came from. Now yesterday I saw my father-in-law for the first time and he game me this long meaningful handshake and heartfelt greeting that he was glad I was doing well. I was thinking, "huh? oh yeah, I had major surgery a little while ago!". I'm feeling so much closer to normal that it wasn't even on my mind yesterday. But 3 weeks ago I'm pretty sure I had caved to being sedentary and was binge watching a show on Netflix daily. Just closed my eyes to the messy house and laundry pile. Sigh, that was actually kind of fun in a liberating way.
So, I agree with others, take it easy and let those TEs settle in. I was pretty miserable with mine as well for the first month. Sleeping upright, not able to lay on my side, pain that would wake me at night and I'd have to readjust, not able to go braless because the drag would cause me a new discomfort, not able to reach up or shave my armpits. Between those foreign objects and hypersensitivity from my nerves I could barely think straight! I wondered how will I make it until September? (My PS said I have to wait 6 months for exchange!!!). Now my TEs are so settled in that most parts of the day I'm not thinking of them or really noticing them at all (thank goodness that the nerve hypersensitivity has pretty much ceased).
I bet the same will happen for you with some time! Good luck and hope things continue to go as well as they are.
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Sheree66, I was recalling your question about bruising today as I went in for my 3rd fill. I asked the NP about the smallish spot of bruising I have on the top right. I just assumed it was from surgery, but she said it was from my last fill! I had no idea, but she said these bruises take forever to go away. Then I asked my DH what my bruising looked like early on as I didn't look at myself for about 1-2 weeks after surgery. He said basically the whole chest area was yellowish from bruising. I guess that is all gone now.
I know you said, also, that you have 200cc crescents which I was supposed to get but ended up with round 300cc TEs. Well today I got only 40cc to bring me up to 140cc in each. She was very concerned about my skin stretching, but was happy she even got in 40cc. I go again next week for just a little more - maybe only 10cc because I have a ripple (bend, crease? not sure what to call it) at the bottom on my right TE that they are concerned is applying too much pressure on the skin. They are hoping that perhaps the additional small fill will help straighten it out, but otherwise I'm done with fills. They thought I looked at my max for both aesthetic reasons as well as concerns about stretching my skin too much. So I'll never be filling out my TEs to the max. Crazy! Also, she moved up my exchange surgery from 6 months to 3 months because of that pressure spot. So I'm hoping to get it on the calendar for June 6 (or at least that week). Kind of excited about that but a little worried about this pressure point. It looks not too bad, but the NP said to periodically hold it up to allow blood flow through it. The PS wasn't too concerned now but said 6 months might be too long and wouldn't want the plastic to poke through my skin! WHAT ?!?!?
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JessieJake - PS told me that the bruising takes a long time to go away, so he told me to be patient. I can also schedule my exchange anytime after mid-June, I'm just fixing my schedule and will set the date soon. I'm going for my 4th fill tomorrow. NP said maybe 2 more and I'm done. 😀 Like you, I'm excited but scared at the same time. Let's just hope and pray that everything will work out for the best. How are you feeling with your 3rd fill?
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Sounds like your PS reassured you about the bruising so that's good news. I realized last night I should have had them pencil in my surgery date yesterday as I know she's busy. I really think June 6 would work out perfectly for my schedule.
Sigh, I didn't anticipate any problems with these fills. On one hand I know I'm more fortunate than many, on the other hand I'm surprised that my skin has put out a limitation so early in this process. Not that I need to be huge - my husband said, "You don't want them to be a conversation topic." LOL, anyone that knows me well would notice if I suddenly developed a well filled out chest!
I went for a walk this morning and I periodically was walking with one hand pressing in that pointy spot. That kind of got to me a little as I was thinking that I don't want to do this plus worry about possible skin rupture until June. I'm glad I go back next Tuesday so I can get the NP's opinion on how it is looking. I think it may be better than I feel because when I press it and let go it quickly refills, although the point is certainly whiter than the skin around it. I really like my PS however I can't help but wonder why (and of course didn't ask) she put in these larger TEs. Obviously I'm not even using them to their full potential and it seems like maybe they were crammed in and that's leading to why I have this fold that won't straighten out. It's been there the entire time and I've pointed (no pun intended) it out each time but until yesterday no one was concerned. Maybe if my skin was more stretchy and she could have filled more it would have straightened out. So, maybe it's my skin's fault!
My 3rd fill was interesting, of course, because of all that. However, what's surprising me is that I have back pain around my left shoulder blade. I think the left TE is pressing harder on my chest wall and perhaps the pain is traveling around to my back. I'm hoping it will fade over the next few days. Last night I woke a few times because of the discomfort. Tolerable but surprising. OMG, so glad I went above the muscle. The fact I'm getting any discomfort from these micro fills above the muscle tells me below would have been .... I don't know what the right word is! I just need to embrace how tiny my chest is. This is all I can do!
Well, we are both close to done on fills which will be nice, and who knows? Maybe our exchanges will be at the same time!
Good luck on the 4th fill!
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I had my 4th fill of 40cc today which brings me to 200cc. PS asked me if I'm happy with the size and I said yes. So he said, that's it for the fill. Yay!! He told me that I can schedule my exchange surgery around 3rd week of June. And I go back to see him for the consultation a few weeks before the exchange. I'm so happy that I'm moving on to the next step ...... Hope everyone is having a good week!
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That's great Sheree66! I scheduled my exchange for 6/22 unless my right TE smooths out. If it does, we'll push out the surgery to a later date.
Otherwise, we could be both sporting new foobs for the summer!
Hope all is still going well!
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Welcome Seedsally, Im sorry you've been in a bad loop you poor thing! But you are getting things done now and you are going to do well. I was dx in Sept 2011 with DCIS in my right. Had an ultrasound in beginning Oct. Then biopsy in November with my BMX surgery in early Dec. That's when my IDC was found in my other breast. So your time does not seem too far out of whack. It always seem to take longer than we want it to!
Warrior, Did you have Alloderm or something similar placed? Because some sharp pain can come from that. Mine felt like a broken rib it was such a sharp pain that came and went. Took a good 3 weeks for that to let up. But it finally did. Remember this is major surgery. People forget that it's not just the cancer we deal with but a major surgery. Please give yourself the time our odyssey need. Everybody is different so you early can be feeling great when there are still on pain pills; if that's the case, just be thankful. LOL. Remember that surgery is n art too and your PS has to make a lot of decisions to get TE best shape in the end. Perhaps the larger TES give her room to work or to have a nice separation.
Sherri and jessie, congrats on the exchange date.
Beth I hope you get your ooph set up too!
And Hethet, waiting is always hard.
Don't forget to check out Exchange City board now, if you haven't already.
Stacy so glad things are going smoother for you! Fingers crossed.
Hi to grandama3x, Ringelle, Molly, Scottiemom and, of course, Specialk! Hope I didn't forget anyone.
BTW, when I get the chance I'll put a note on top to make sure everyone is aware that you can PM me if you have questions that weren't addressed or if i haven't been on in a while and you want to know something. I've got my email set to get notifications of PMs. I don't for updates or I'd have hundreds to delete from my email every day. LOL
Much love to all!
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Hey all - I haven't checked in for a little while. It's great to see ladies are progressing well for the most part and some are even scheduling their exchanges! yeah! Congrats ladies!
It's been a little over two weeks since my last fill and I'm still having bad days. That last fill did me in! I'm so glad it was the last one although I kind of wish I had stopped at the one before! It seems weird to me that only one side is giving me trouble and it's the same side I have that weird scar tissue from the drain on. It still hasn't subsided. PS says they will deal with that at the exchange. I'll go back mid May for my check in and then I'll probably have a date or know more about exchange scheduling. In the meantime, I keep praying the pain/discomfort will subside as it had before the last fill!
warrior - how are you feeling these days? I notice, the more I do, the more discomfort I have. It's a trade off!
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Ringelle, I kind of feel the same way. My right side is where everything started, problem during BMX surgery with the nipple almost not making it, then the drain on that side collected enough blood they though they'd having bring me back in and now with the pressure point we are monitoring from the TE.
However, my left side is giving me night pain that radiates to my back. Weird it only happens when laying down. Which means I must sleep semi-upright, but find myself scooting down as I sleep and then I wake up in pain. I know it comes from the side of my TE where it presses under my arm and I can feel it travel into my back if I continue to lay there. Last night I felt I was up a lot from this. Each fill brings something new! Typically the new aches or pains subside in a few days but this one is hanging on.
Moonflwr912, Now that I know my pain right after surgery was from where my PS stitched the alloderm to my chest wall I understand. But before that I had the same stabbing pain you described and was very worried either something was wrong or that I wouldn't be able to deal with it if it didn't get better. That was shortly after surgery and it disappeared pretty quickly after my PS explained it. Who knew that your body could adjust so quickly to something!
Keeping my fingers crossed that my fill on Wednesday will smooth out the pressure point in my TE!
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Hello lovely ladies! I finally feel like I have some good news to share! I had my bilateral mastectomy 3/14 with a washout/revision 3/30 due to infection. The skin on one side is healing very well, and the other is doing better from where I was last week, so my PS started my fills today! I was so happy not to be inverted (he'd filled me with air during my procedure so I was pretty deflated). I practically skipped home. Will have weekly 60 cc fills until I get to where I want to be (C/D). Meeting with my oncologist tomorrow to get more info about chemo start date - I think I'm on track to start the first or second week of May. Not looking forward to it (4 rounds of AC, 4 of Taxol dose dense), but the sooner I start, the sooner this is behind me.
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Congratulations on your good results, Chicagogal! Isn't it nice to not be flat? We had our washout/revisions on the same day due to infection. My incisions are also healing much better but unfortunately it looks like I might be getting infected again
I have edema and more fluid in the breast. They did put 30cc in each expander today though. Do you still have sutures in? 0 -
Stacy, are you still on abx? Either way call the PS and send him Pics if you cant get in. Dont wait.
Hugs to all. So glad to hear people are doing better.
Much love
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