TEs. A Beginner's Primer
Comments
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Decided to just re-post my response here cuz it is so genius haha:
Pavlovsbell -- I haven't had my surgery yet, but I can tell you that with my previous surgeries (4 which left a scar on my abdomen or chest, than you very much), I bruise an angry purple and sometimes doctors are surprised a little by it. It has to do with the color of my skin, I think, (very fair) but in any event that is what happens. My lumpectomy scar from six months ago is STILL angry and purple. My hysterectomy scar is still faintly purple, although it is finally looking like a thin line -- 9 years later! So my point is, while it may not be good news that you take longer for your scars to change color, it might not mean infection and your ps might have not seen other patients whose skin does that. Just an alternative thought. Here is a bad photo of my lumpectomy scar and the surgery was 6 months ago!
ps the red dot is a chery angioma, hereditary and not cancerous but looks like a heart in the photo so I'll take it!
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Pavlov - your PS is not worried about bruising - he would not do a debridement for that - he is worried about skin necrosis. It usually expressed as a purple/blue/black area and is a sign of a lack of blood supply to the skin - it is essentially skin death. If you do have necrosis the debridement cuts back to healthier skin. I think he is waiting to determine if this is regular bruising, or necrosis - and time will tell. The reason necrosis happens is that after your breast tissue is removed all of the blood vessels go with it. Your skin is laid back down over the pectoral muscle and must form a new blood supply with that muscle - there are varying rates of success with this, and if the blood supply is not formed you have necrosis. Sometimes expanders make this more problematic since the skin is also being stretched - knowing how much to fill initially, if any, can be critical to the skin insult and possible necrosis formation. If you do have necrosis it does not automatically mean that you have to remove the TE, you can have debridement, there are topicals that can be used, and time can heal. Having it can slow down the fill process because you don't want to make the situation worse, or stress the skin until it is more healed. Am I correct in that you will need chemo due to your TN? Delayed healing due to necrosis can stall your start to chemo - this may be why your PS mentioned removing the TE - he may not want to compromise you from an oncologic standpoint. You could potentially resume recon after chemo. I lost my left TE prior to chemo, had it removed, and then successfully replaced when chemo was done.
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I saw my PS three days after BMX. I could hardly walk into the office. I had bruising everywhere, but he was not concerned. You went through ALOT......of course there is bruising. Before he wants to do something else, maybe see your BS and see what he thinks. If your PS normally does not see patients until 2 weeks, maybe he does not know about all the bruising. I was a mess. I had skin sparing/nipple sparing and like I said, bruised everywhere. It slowly went away. I used a lot of natural coconut oil. I am no doctor, but you sound normal to me. Try to rest and recover.
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Thanks for the replies. I am carefully watching for the skin to open in any areas, and just closely monitoring for now. My BS went on vacation right after my surgery (of course!) so I won't see him until July 14th. In all my close examinations, I took a photo so that I can compare from day to day how I am progressing and I'm surprised. My PS said he filled me "just a little" at the time of surgery, but I'm thinking he must've filled me quite a bit. I have almost as much as I started with! At least that, in part, explains why I'm counting the minutes until my next pain medicine each time. I hope everyone is having a great day. It's very rainy here in Kentucky, which only means the humidity will get that much worse. I'm going to try to get caught up on homework reading. All this down time can surely make me smarter, right?
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Pavlov - keep in mind that even an empty TE will occupy space behind the pectoral muscle - it is a rigid item. Also, swelling initially will make things appear larger - you are very early in the process.
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Hello, I am new to this terrific and helpful thread. I am getting TEs in 2 weeks, and I have a few questions.
- Is it the protocol to stop Tamoxifen 2 weeks prior to TEs, 2 weeks afterwards and then do this again for the exchange surgery? I don't like being without my security blanket.
- I am tall, but extremely skinny around my ribcage (in fact, my ribs stick out), and I have/had very small breasts (34AAA). My skin is very, very tight after my UMX as the surgeon left no extra skin, and I have tight skin anyway. I did not have radiation, but the PS said I have thin skin. I also have an ugly, wide scar as I had trouble with the Vicryl stitches used for the MX. Is it reasonable to want to get to the equivalent of a small B cup? I have a butt that is out of proportion to the rest of me, so it would be nice to get into a bit more balance ;-).
Thank you!
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katcar - stopping Tamoxifen prior to surgery is dependent on the doc, but personally I would do it - I would be concerned about the clot risk. I would also ask to wear compression stockings during surgery and for a day or two afterward. After your TE is placed I would suggest small frequent fills to stretch slowly, but only start after a sufficient period of healing. I had skin healing issues, no radiation but my skin behaves like I did, and had to have my left TE removed prior to chemo after several tries to save it. Seven months later, I was done with chemo and had a margin of time since last infusion and it was successfully replaced. I did 25ccs weekly until my left side caught up with the right which still had the original surgical fill. Once it was caught up I still only had 25cc fills bi-laterally until I reached the desired total amount. I also have very thin skin and am small boned - wear a size 4 top or jacket. Fat grafting may also be helpful to you - it can help your thin skin and add some volume.
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Hi Katcar,
I had delayed reconstruction as well and had already been taking tamoxifen 4 months when I had my TE placement surgery in March. My PS had me stop the tamoxifen 10 days prior to surgery and then I think I even had to wait a week after or so before I started it again. I just got my pre-op paperwork from her since my exchange surgery is next month and the same instructions are listed there to stop the tamoxifen 10 days prior to surgery. I also take a baby aspirin each day and had/have to quit that as well.
Good luck with your TE surgery. I too am very petite and had very slow fills. I tried 50 ccs the first time and it almost killed me so we backed it down to 30 ccs and I tolerated that well. I am not exactly sure what size I'll be but based on how the TEs look, I'd say a B cup.
Take care!
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SpecialK and Hummingbird -- Thank you so much for your replies and feedback. I will stop the Tamoxifen as he requested. I didn't even think about wearing compression stockings, but I do have some as I swell a lot when I fly on long trips. The doc said we are going to fill very slowly every 7-10 days, after I have healed from surgery. I can tell he is very careful as he was concerned about my MX scar still being so red 7 months after surgery. He wanted to wait longer, but due to insurance I wanted to get moving. I think it is just the way I heal--my father is the same way. He kept saying about the fills, "lento, lento," which means slow so he is not trying to hurry me. He suggested 30ccs each fill. I think we are only going up to 300cc or so? Does that sound right? Now I wish I'd taken better notes. Anyway, I am also a size 4 on top, so I am encouraged that I will get to my desired size. He did mention using Alloderm. Is that sufficient or should I ask him about fat injections in conjunction with that or instead of Alloderm??? What a big help you wonderful women are--thanks again.
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katcar, I am just over a week out until exchange. I stopped Tamox at two weeks out. MO said 1 week but most go longer and HFs were killing my sleep during one of three annual stressful weeks at week (yesterday was a 15-hour marathon, but that's only 3 days a year). MO said I can start back as soon as I'm up and walking but a week sounds better to me. During BMx they used a suit that inflates and cyclically warms/compresses. I still had it on in recovery until shortly before they took me up to room. Definitely ask about compression, as I will at my pre-op today. Best wishes.
Scottie
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katcar - allograft and fat grafting do different things - the allograft provides infrastructure and assistance in support of the implant - since a larger implant must be used to replace the breast rather than augment, while the fat graft increases vascularity, skin bulk, and helps increase skin integrity for stretching, along with better aesthetics. Both have good and bad aspects - some have issues with allograft not incorporating or their bodies interpret it as foreign. With FG, some have fat necrosis or develop oil cysts that express as lumps that cause concern. I agree with your doc - low and slow is key. Try a 30cc fill and see how you do. 300ccs is not super large, so seems promising. I had allograft material placed with my expanders but had FG done after exchange
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Katcar, I am all done with fills and am currently at 320 ccs total. I think I'll end up a bit smaller than I was prior to dx but I'm happy to have my shape back!
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Oh, this is such great information from all of you! Scottie--never heard of that device, but sounds like a good thing. It is weird, but since being on Tamoxifen, my legs swell a lot less than they used to. I suppose that is just a coincidence, but I will ask about the stockings and take them with me. I am looking forward to hearing how your exchange goes. Sorry about the HFs :-(.
SpecialK--your explanation of the difference between the Allograft and the fat transfer is very helpful. Now I am worried about the graft not taking, esp. since my body interpreted Vicryl as foreign. Shoot. I will ask the doc about the fat injections. Both make sense to me, but seems that everything comes with risks. The expanders are bad enough. I am nervous about this process.
Hummingbird--Congratulations on being done with your fills! I guess you will keep the expander in for a while and then go to implants? It is certainly daunting when you first start out. And, it seems to take months. My OS said that a large percentage of his patients choose not to reconstruct. I can see why. But I hate having a uni-boob. I'd be so happy to be where you are right now. One baby step at a time...
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katcar - ask your doc what their direct experience has been with the different types of allograft - there is bovine, porcine, human, and completely synthetic. There may be specific rejection data for each type that your surgeon can tell you about. Your body will form scar tissue around the grafted material and incorporate it after a period of time. That is the way it is supposed to work anyway. Some docs do fat graft at exchange, some want to wait and see how things look after the post-surgical swelling goes down. I had it done a year after exchange to add volume to the divots above the implants in the upper pole - between the clavicle and top of the implant where breast tissue had been scraped out but higher than the implant reached. I retained virtually all the fat, no problems at all. That procedure made a big aesthetic difference, made things look more natural and soft
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Hello ladies, I am new to this thread had my DMX and TE placement 2.5 weeks ago, discovered this thread today and read the whole 54 pages like a novel I couldn't put down. Not only was it informative, it felt relieving to read about similar concerns and questions, and the flashlight experiment totally made my day.
So far, my short post-op journey has been uncomplicated (even stopped taking pain meds 2 days post-op), which has been nice since I had a very tough time with chemo. It seems from all the posts that fills are generally with little to no pain and even relieve some pain, that was great to hear.
Moon, thank you for starting this thread and maintaining it for more than a year!
I have one question to those who have done their exchange: how much time off did you get from work after exchange? In the posts, I saw anywhere between 3 days to couple of weeks, and I want to know what to anticipate. I am clinical dietitian, so my job involves a lot of walking around the hospital, but not much lifting, pushing, or pulling. My PS is giving me 9 weeks right now, so I'm kinda pushing y time off to the limit.
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welcome mfana. I have not had my exchange yet so can't answer your question, although I think the answer will be different from everyone. My PS told me I could be back in work within a week from exchange. I'm a surgical coordinator so no strenuous activity. My SX is Wednesday 8/19 so I'm planning on being back at work the following Wrdnesday, possibly Monday if I feel up to it.
Aren't these women amazing? I have learned so much reading the posts on these threads. Just know that everyone has different experiences and you may not experience everything mentioned, but it's great information. Just don't stress over the bad stuff. I have had a relatively good TE experience.
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Everyones experience is different for exchange (like every surgery). 9 weeks sounds long! I think I was off 2-3 weeks. I have a sitting job with a lot of arm movement and stretching tho. Im sure he can release you sooner if you feel ready to go back. I guess better to have off too much than too little. And we are talking about exchange right? not initial bmx? That of course is a much more serious and invasive procedure, with much more time off needed.
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I am an elementary school teacher.
My breast surgeon said I should be off work at least six weeks after bilateral mastectomy. Plastic surgeon recommended one to two weeks for exchange surgery.
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mfana. . .my exchange is in one week. PS is taking me out for 3 weeks and that may change to 4 if needed. I had a rough time recovering from BMx. Was out 6 weeks and should have gone back parttime for a few but I wanted to save paid time for exchange. Also at the time PS was recommending a 3rd surgery after exchange so I kept my options open. She did say no lifting anything for 6 weeks this go round. It was 12+ weeks with no lifting before.
Scottie
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Scottie - no lifting... what does that mean? Can't lift a gallon of milk? Can't run the vacuum? Can't carry laundry? Can't carry groceries? Good luck... are you getting fat grafting??? It HURTS, but not as bad as a BMx.
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knmtwins . . .I think PS was mostly referring to the weight lifting I've been working on (I'm all the way up to 10 lb weights so not much lifting). She did say I could start out at 2 lb weights after 6 weeks, so I guess groceries and vacuuming are out. No fat grafting but she is doing lipo on one side.
How did your May surgery go?
Scottie
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knmtwins and Scottiemom1 - No lifting means just that - because you'll feel worlds better than you did after MX, it will be very difficult to take it easy. Moon's favorite mantra, "just because you can, doesn't mean you should" comes into play here. You'll be able to see the incisions on the outside post exchange, but you also have to be very aware of all the stitches and pocket work that will have been done on the inside - the stitches that you can't see. So no to the gallon of anything, no to carrying the groceries, and nope to the vacuuming for a while, or you could really mess up that internal handywork. Heck, I went as far as putting liquid laundry detergent into water bottles - a trick I learned prior to BMX - so I wouldn't even be tempted to overdo. If you make the effort ahead of time to downsize the weight of things you may need to lift, it will pay off in the long run.
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Audrey, wish you luck on your exchange surgery and hope it will a smooth experience like your TE. You are a rock star for aiming to go back to work 5 days post-op!
Aviva5675, thanks for the information. Sorry I was not clear, I am currently on leave (9 weeks approved by my PS) for BMX and TE placement. I think he aims for the higher end of time off, so I should probably expect the higher end of time off for exchange surgery as well until clear. If you don't mind how much was your time off post BMX?
Janet2014, thank you for the information. Being a school teacher is much more physically demanding than my job, hope you had a smooth recovery!
Scottimom1, Thank you for the information! I remember reading about your journey. Hope your exchange surgery is so smooth that it makes up for all the rough time after BMX! I have a feeling my PS will shoot for 4 weeks, which would in total put me at 13 weeks time off and one week over my 12-week limit. But what can you do? It is what it is and I will deal with it as it comes.
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AZ85048 Thanks. I remember just trying to pull a bit of laundry out of washer at 2-3 weeks post BMx. I paid for it. You are absolutely right about all the pocket work with exchange.
I'm fine with no house work and groceries etc but I'm going to get frustrated not being able to get on my laptop. Even that will be two heavy for awhile. I do have an awesome 12 inch tablet that I bought for BMx. I will just have to stay in bed with that.
Scottie
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I took a break over the weekend and am catching up.
SpecialK - Just when I thought I had done enough research, you show me how little I know. I guess I have been trusting the docs a little too much on this surgery. I did not know there are different types of allograft. I will be doing some research on rejection rates today. I made the mistake of reading some of the experiences on the other TE issues thread, and I am kind of scared now.
Scottie - You must be getting excited to be almost done. I am anxious to hear how everything goes. I lifted like crazy after my MX and did fine, but I will try to take it easy after my TE surgery. Going to do my laundry now! Do stay in bed and let your body heal. I am going to tell myself the same thing. I tend to be a "do'er" and get impatient so I have to remind myself to do nothing. My boyfriend gave me a cute little book called, "The Art of Doing Nothing." I'd better give it a read, haha.
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katcar - it might be difficult to suss out specific rejection rates based on type of allograft material - you may have more luck talking directly to your surgeon about which type he uses and why, and his specific experience with different types. You may also be at the mercy of whatever is stocked at the hospital where you will have surgery. They could probably order in something specifically though if your surgeon has a marked preference. I initially had bovine and had no problems until later when it started to perforate, but I am usually an outlier, so I have no seen this as a problem with others - just me, lol! It was replaced with synthetic (TIGR mesh) which is supposed to be tauter and less likely to give way. I ended up losing the left implant but the TIGR mesh is still in place on the right and I have had no perforation issues after 15 months.
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OMG - SpecialK, "PERFORATION ISSUES'; What??? Should I go to the other thread to ask that?
Sottie - Still have nerve sensitivity everywhere he did lipo for fat grafting and where he did it beside my breast was the most painful, nerves in the back, but MUCH better than right after. My left is the implant and it is to the side and too low. He is talking about tightening the pocket and adding additional allograft material to the side, so they don't rest that way and raising it. Because it is to the side, I have a 'dog ear' near the sternum. He says the fat grafting took really well, and you can feel the squishyness on top of the implant. He is also thinking about trying an anatomical implant this time. He uses their TE's, so the pocket should be OK for it.
It has been about 10 weeks since it was done, and the swelling is going down so you can start to feel what it will be like. So odd, this whole journey.
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Hi SpecialK - I am so sorry about the perforation and the loss of the implant :-(, and I did see that you had to have numerous surgeries. Was that all due to the perforation?
I recall my doctor saying he uses the synthetic kind, so based on what you wrote, that may not be a bad choice. I would not want bovine as my mother had lupus, rheumatoid arthritis AND scleroderma--all auto-immune diseases. I don't remember the details, but I was told years ago to avoid collagen injections with bovine material with that family history.
I am getting more nervous as the date approaches. I stopped Tamoxifen today.
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knm- yes, my allograft materials developed perforations. I don't think it is common, but apparently it can happen.
Katcar - I have had a complicated surgical experience. Here is the short version - BMX with TE, SNB clear in the OR, not later in the lab. Right side ALND. Two weeks later left TE ruptured through the extensive skin necrosis. Emergency surgery followed two weeks later for skin repair, then again two weeks later. Another two weeks later TE removed so I could start chemo. Seven weeks after chemo ended had TE put back. Filled slowly and exchanged after 7 months. One year later fat graft to upper poles. A little more than two years later had allograft repair for perforation.Skin tore open where the previous necrosis was. A month later repair surgery for the skin and placement of a smaller implant. Didn't work so a month later implant was removed and skin repaired. Last Nov fat graft to flat side, but skin opened again. About six weeks ago another skin repair and fat graft with a new PS.
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Katcar LOL, is that book available on Kindle? I'm excited and dreading it at the same time. I should have had the surgery in April.
knmtwins my PS said the lipo would hurt alot. I've had so much nerve pain on and off I'm just hoping all of this will get better after.
Scottie
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