TEs. A Beginner's Primer
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Hello,
I had my second fill Friday. I began with 180, first fill was 90, and this one was 60. I'm at 330 now. The PS staff bring in 120 and it's up to me how much I take. We had a long day planned, so I went conservative. I only needed an Aleve twice and after that was fine. It is tighter but tolerable. Next time I'm going back to 90 to see how that feels. I'm on a two week schedule with exchange planned at this time for June. My TEs have a 700 capacity.
A question on the scarring- I've read people use bio oil, coconut oil or other things for scarring. Is this done in the intermediate stage before the exchange? My incision is healed over pretty well by now, but the PS will reopen it for the exchange. Is there a benefit to treating the scar at this stage?
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Hanging in there... Only 10 days until my exchange surgery... Really really hoping that when the TE comes out all the nerve pain, numbness, tingling and loss of sensation in my arm will go away!!! Fingers crossed! XX. Oh yes, projection and symmetry would be good too lol
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I'm hanging in. Tomorrow is my last fill. I'll be at 900. Next week they will drain my right side. Wish they would just do it tomorrow. I've paid $50 a week copay since October, really over the expense, the time, and the discomfort.
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I am currently at 320 ccs and my PS said I have 1 or 2 more fills to go! Every time I have gotten a fill the experience is different. This last one caused an itching and burning at the bottom of one of the TE but it has subsided quite a bit today. I was concerned it was nerve pain! I will be so happy once I can have my exchange surgery. I know all of us have had different outcomes, experiences and medical treatments but my goodness this is not an easy thing to go through!
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going for my first fills tomorrow. DOc did not want to give me anything so she just said to take Robaxexet. Hope it's good enough. One of my breasts is so sensitive, I have no idea what will happen tomorrow. I ALREADY feel so tight and they are not filled yet.
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JustAJennifer - My PS said there's no benefit in treating the scars now since they'll need to eventually go in again for the replacement. Just apply regular moisturizer.
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keeping my fingers crossed for you! Exchange is getting closer. X you never know. You may have no issues with fills. Wait and see.
To all much love
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I had my first fill on Monday, yay! It was interesting watching the breast mound rise as each was filled. I had a 100cc fill, but I am sure I will do less next time. The ps only put 50cc in first, then let me decide if I felt I could handle more. It didn't hurt as much as I thought it would to have the fill done. Kind of feels like I am wearing a metal bra now though. I will try the muscle relaxants. I have some on hand for my back spasms (due to an old injury, not the surgeries). It is easier to take the discomfort right now because I suddenly have breasts now that I have a total of 250cc. It is exciting to try on clothes again and see the difference. So nice to have people to share with!
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in ally me happy for you. As you are filled you may have more pain. Judge your fills on how much trouble the one before was. If you didn't need much and discomfort was minimal go for it. If you hurt for days even with meds back off and even wait a week more. You are in charge.
And yes, it is exciting to see you coming g vack! LOL
Much Iove to all.
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I'm getting sudden pain at night in left TE. It is across the top and close to my port so I'm confused about what is causing the pain I think. It is enough pain to wake me up but no redness or swelling. Any ideas??
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Msmath: During my fills, I had a similar pain and it was on the same side as my port. It was centered underneath my TE on my rib cage. I had excruciating pain when I tried to take a deep breath or move. My RX for muscle spasms helped. A few days I had dull discomfort in that same area. I am happy to say that it is gone. The last episode was a week after my final fill.
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JustAjennfer, My scars are an inverted T. I thought my PS would cut the base open again, so I put vitamin E oil on the stem of the T. He told me he would only open up the stem and not the base. I was concerned since I had done nothing to the base and he said coco butter was the best thing to use. Since this diagnosis, I have gone organic with everything I can. So, I bought organic coco butter and made my own whipped butter. At my final fill, the PS said my scars looked better than any of his other caucasian patients. It really is amazing that I saw such an improvement after only using it for a month. I now make my own lip balm, body lotion and shower lotion.
. It's super easy, cheaper and you can pronounce the ingredients. 0 -
ms, it is likely the pain is from the muscles. The port is in the way and the fills are pushing on it. The next fill may move it out of the way you never know. But watch for redness because ports may become infected. And check your temp once in a while. Good luck.
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thanks summer sun- I would love your recipes! I started making my own shampoo and would love to do more
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I had my tissue expander placed on the Left side on January 21st after a prophylactic bilateral mastectomy in which the breast tissue on the left side did not survive. The first few fills (100 cc's per time) weren't so bad, then I got to the 4th one, and saw stars. My surgeon said I should have called him because he could have taken some out to ease the discomfort - but I had no idea that this was an option, until of course, after the fact. The next few fills were ok - not super comfortable, but not as awful as that previous "bad" one. I just had my last fill last Thursday...and I'm uncomfortable - mostly at night, with muscle spasms and "zapping/sparking feelings" around my left underarm/rib cage. I just can't find what makes me sleep comfortably. (I tried my left over surgery pain killers, valium, lorazepam, tons of advil, and last night - flexirol) (I didn't try all these things at once!). Nothing quite takes that grabbing/piercing sensation away. I think (hope?) that it seems to be easing day by day - days are now fine and I don't take anything. It's when I go to sleep. I don't want any fluid taken out, because I am mentally attached to the idea of my "last fill". I had no idea these tissue expanders would be so painful - I actually found this website and discussion board in the middle of the night one night when I woke up from the pain/discomfort. It's really been helpful. When I looked on plastic surgery websites, they seemed to allude to "you will experience mild discomfort" during your expansion process...and I never thought to check the breast cancer forum.
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Friends I am I need of morale support. I've finished my expansion. I'm 900ccs in my Cancer side, 800 on right. For six months I've processed that the right side would need to be drained to 250 cc's for radiation. This afternoon I saw my radiology oncologist and now he wants both side completely emptied. Emptied as in flat. I'm devastated. I have no clue of what I will do with all of the skin that will hang. I have no idea how I will hide for work. My clothes are going to hang. I was fitted with mastectomy bras and a prosthesis for the partial drain which will now be useless. I can't afford to repurchase.
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Msmath, I have been experiencing the piercing pains, also. Although I had been doing quite good previous to my 2nd fill of 100 cc's. I only have total of 450, but do not plan to have more. PS told me today that I wasn'the taking enough med for pain ((I can't take hydrocodone) so he added valium. He said it isn't actually the expanders causing these pains, but rather the muscle. & posilly n r very endings trying to heal. I have faith that the addition of valium with other mess will help. We discuss next step after. Te in 3 more weeks.....yay!
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I was expanded to 850cc and also has issues with back pain and problems with my arm.
I also tried all the painkillers, Valium, muscle relaxers...
The ONLY thin that truly helped was treating with a good Physical Therapist! After the first visit I noticed IMMEDIATE relief. Ask your dr for a script. It's well worth it! Sending healing vibes your way
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ilovecoasters, {hugs}, Im sorry for Ur frustration. Who wouldn't be. Is there a place where I can get cheaper bras if the one u got was custom made? How come the RO changed his mind
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ilovecoasters- could you wear a simple stretchy bra, like the brand "coobie" bra? I have used that, and made a "stuffing" out of 4x4's for everyday, and at one point used a prosthetic with the bra. The coobie is soft, but holds everything in place, and you can step into it and pull it up or put it on over your head. I've also attached drains to it when necessary. The coobie bras are about $20. I got the "comfort" ones- the larger. My TE is at 650cc's, for reference.
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ccoasters, i used a camisol with poof inserts. The inserts were just fluff and adjustable up and down as i went through reconstruction with "Scenic Detours" I had one side with a hole just empty skin and one with a half filled TE for about 2 years. It's a Amoena and I wear a 2x. I was filled 850 each side at exchange cause I am a large lady. So one poof was about an inch filled and one was a big ball. No one knew when I had clothes on. I got a black one to wear during the summer as top and a nude one for under other shirts. It was about 4o $ it included the puffs. I'm sorry you have to deal with this stuff but you can. It will just take longer.
Coolcat, have you tried a heart or Cresent shaped pillow under your arm for sleep? Sandra swore by that for sleeping.
Kj, glad you're getting used to the fills. The last couple really tighten up everything and sometimes hurt.
Just a note to all, remember that your TE is bigger than the exchange will be. You will not gave the projection. Just so you will have real expectations.
Also, Plastic Surgery sites are selling augmentation. Reconstruction is a whole different beast. P'S can give very large breasts to women who still have breasts. Not so much to those of us who no longer have tissue beneath. We no longer have the muscle support for the breasts either. That's why so many P'S use alloderm or something similar. This is also why the breasts no longer Ave sensation after sx either. The nerves have been disconnected.
Please feel free to ask any questions you can think of. We will try to answer them for you. Breast Cancer treatment isn't for Wimps!
Much love.
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I tried the Coobie bras but found them to be super tight. In the months after my bmx I couldn't stand the tightness. If u are in the market however for something tight definitely go up a size on these! They're hard to get off over your head if u have restructions with range of motion. I found a nice one at a Jockey store and you can get them online (24.99). I think they're called camis. They have thin cup shapers too. And lastly I found soft stretchy bras at Walmart. Similar to the Jockey camis but not as good quality. Tons of colors and some with a little lace. And the best news is that they are just $4.99! I have about 6 of these. Hand wash for sure. Won't last long but as I get my fills these have been just the best. I was obsessed with bras before my surgery so obviously it continues!
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- I used one of those genie bras you see on tv - I'm at 900cc so I got an XL for $29.99 for two at RiteAid. Iwas able to pull it up from my feet, no overhead involved. They have very sturdy cups which you can move around to "align" the girls. It also covers the roundness of TEs well...
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ilovecoasters - if your mastectomy bra fits you may be able to get two full size prosthetics from a gift closet at the American Cancer Society, if there is one near you. They are sometimes operated in the Hope Lodges near cancer centers - I know there is one here in Tampa. When I first lost my left TE I got a prosthetic from them as my insurance did not cover one since I was a reconstruction patient and the TE loss was temporary, but I needed to match the other side. You can also get fiberfill and use that - that is what is in the poofs that come with the mastectomy camisoles, or purchase the poofs from someplace like TLC - here is a link. These are inexpensive - $12:
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The Genie bras work great for me and you can get them at Amazon and any CVS or the like. I also have a very stylish post surgical bra I splurged on - https://adoriwear.com/order.html. I used it after my initial surgery and will use again after the swap.
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Oh yes I purchased the pink mastectomy bra with the loops for drains. It is expensive I believe it is called The Elizabeth, but well worth looking into. Insurance might cover it. It is adjustable EVERYWHERE and has special cutouts on the sides for drains. It was awesome and I cut the loops off and wear it all the time
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hi ladies, I am having my reconstruction delayed till after chemo (I had BMX in Nov '14), I will be getting the Becker tissue expander/implant. It is a single step surgery where the expander will stay in and act as a permanent implant. Does anyone have any experience with this?
Also for the port for the fills, is it placed under the pec muscle or on the side close to the skin?
Thanks!
Teri
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My insurance requires me to pay the first $400 then they cover the remainder at 80/20, yes bad insurance. AMC told me since I'm insured I can't access the gift closet. I don't own any mastectomy bras. I was fitted for one, but that was when only one side was to be drained. The bras that were ordered are 40 D's. I never imagined this would be so bad. The bra won't even be in for another week. I ho back to work Monday. I've tried on every stitch of clothing I own and nothing is passable, it's 90 here so options are limited. I'm trying to put on my big girl pants and deal but I feel overwhelmed
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the te is placed under the muscle.
also, there is a really great bra thread full of great ideas and experiences!
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ilovecoasters - I have insurance and still accessed the gift closet at Moffitt, no problems - that is weird that they wouldn't help you. You might try a Genie bra, you can get them at Bed, Bath & Beyond - and use a 20% off coupon, and use some batting from the fabric store and put it in the pocket in the Genie Bra - I am I Florida too, and it is hot!
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