TEs. A Beginner's Primer
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Hi. I am new here. I just under went a bilateral mastectomy 1.5 weeks ago. I requested delayed immediate reconstruction with TE since I was undergoing radiation after surgery. I could tell PS was not pleased with my choice and said he would "try" to accommodate my decision. He did not want to take the chance of delaying my radiation due to a failed reconstruction attempt. He advised that if he felt the tissue was not healthy enough for a TE after removal of my breast he would not proceed with the reconstruction. I felt right then and there that my decision would not be carried out. I woke up after surgery to find out that TE were not installed b/c the PS felt that the skin would not survive due to the unexpected excess amount of tissue the surgeon had to remove during the MX (I don't get that because I thought they removed all of the tissue anyway). So I am left with excess skin and no expanders going into radiation. I am truly devastated because I know the unlikelihood of my skin expanding after radiation, and I do not want to under go a FLAP procedure whatsoever.
Has anyone had TE after radiation? What was your outcome?
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Yvettelk, I did not have to undergo radiation BUT if I've learned anything from this experience and from reading everything that all these wonderful and brave ladies have been through on these boards, it's that this PS sounds awful.
I have read many posts of ladies having successful reconstruction after rads (though obviously it can be more challenging) but your PS should be encouraging and helpful and this one has not been.
Is there any way to see someone else? Mine has been all about, 'how can I make this an awesome experience for you??'
I have had to travel further than I initially intended to find my PS but it has been worth every mile and minute I've driven.
I know this is so upsetting- sending hugs and prayers to you!!
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Yvettelk I concur with Free. . .take this time during rads to find another PS.Ask around for a recommendation.My PS was all about what I wanted. Although she said I was a great candidate for Tran flap, I wasn't going there. There are so many women on these boards who have successful reconstruction after rads.
Best wishes Scottie
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Wow. No way would I let that PS touch me again. I would definitely search for another one who has good ratings. Unless someone I know has been to the doc I thinking about and can give me honest feedback, I go to healthgrades.com to see ratings. Vitals.com is another. There's a few but healthgrades is the best one. I worked for a surgeon's office before and saw he was looking at that site to see how he was being review, and never yelp or the like sites.
Find the ps you are interested in, put them in google search with reviews at the end and see what others have said. GL. Oh and while you are reading reviews, I'd put this guys name in and write a terrible review on him so people are aware.
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I had my umx with TE last Friday. My PS did my first fill on the table of 120 cc. Couple questions, how do you know how big of a fill you can tolerate? PS wants to fill quickly before I start next Tx. I am so glad you are all posting your experience so others like me can make wise decisions.
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What's the rush in fills? From what I understand, they can be painful and that's why no one does it quickly. My ps is going to start me at 50cc to see how I tolerate it. If I do well, 100-120 next time. Slow and easy because he says you need time to not just if you have discomfort/pain, but your body to adjust. Chemo/rads do not affect the TEs so you an do fills at your own pace. If I feel like crap when it comes time, I'll reschedule- but since I can't get the exchange done until chemo and rads are done, I see no rush and will totally go by how I feel which is how it should be. There's no schedule on fills like there is with chemo/rads.
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Arista I told him that I don't want to rush the fills. I told him low and slow is what I want. He said he won't do fills during chemo because there's a risk of infection. I will have the TE for a long time anyway so I think slow is fine.
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Mine doesn't see risk of infection during chemo as a big concern. Weird how ps differ, but I'll just differ to him as he's got a great track record. If I don't feel like it then I won't do it. Assuming drains are out Thurs, I have to wait 2 weeks before first fill. That should put me before chemo starts so I'll see how 50 cc that he's going to start with goes. And certainly if I feel like crap, fills are the last thing on my mind. I'm rather liking not having boobs of sorts right now with just a cammy on. I hate bras and even a sports bra which I guess you have to wear even when it's over and done with and you are all healed from permanent implant sx. I was a D/DD so it's quite a nice vacation! lol
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I can't wait to get back into a bra because my poor rightie is just hanging there lol. It's interesting how different these doctors are. I like mine and he's the go to guy for my BS. Sadly he said most of his business is breast cancer.
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Arisrlta, as it goes PS differ (where have i heard that before?) On what to wear after exchange. I just wore my camisole for the whole 2 years my reconstruction took. Up or down on the soft puffs. Worked great for me. Only time I needed a special bra was when my drain went wonky and I was draining 100 CCS every day for 3 weeks. During that time i had to wear the strongest sports bra i could find. I actually wear the camisole still when I need n extra layer. I bought a nude and a black one after the first year and they ve Lasted fine. Of course I don't need the puffs any more! LOL
My PS was n arrogant *ss when I started with him. He learned some humility by the end because if it could go wrong for me it did. He's much more human now. LOL I don't get him saying before the BMX that he might not do the implant. There must have been a reason he thought it would not ork. But he should have told you the reason. I'm sorry you were disappointed. Hugs. You i got want to check out the board TE troubles too now.
Much love.
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It's weird but the TEs don't bug me anymore. It's just a little weight in my chest but the tight uncomfortable that it was is gone. It's more like wearing a tight support bra minus the straps and all. The cammy is actually pretty comfy. I like how it goes down to close to my crotch area as it gives a bit of support to the big stomach too. I got a beige and black one for free from the womens center at the hospital here. Great quality that I can see lasting a long time. I'm hand washing mine and air drying to help preserve the lasting factor.
It's these drains that are a pain. I'm thinking I just may be able to side sleep some once these are out. We'll see but man do I miss sleeping on my side and this back only biz sucks! lol
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artista - just wanted you to know that a 100cc fill is really large. The initial surgical fill is usually larger than the subsequent ones done in the doctor's office for purposes of creating the correct tension of the pectoral muscle to the skin so that the blood supply reconnects.
artista and molly - rads definitely does affect the TE because once skin is radiated it does not stretch well. Most RO/PS want the fills complete prior to starting rads, and many want them overfilled as rads can cause skin shrinkage/tightness and muscle contraction. Overfilling the side to be irradiated helps with symmetry. Some RO will ask that the TE be overfilled prior to starting, and then drained for the duration of rads, then re-filled afterward, but this can depend on the field of radiation and original location of the cancer.
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PS is starting with 50 cc to see how I do. If I do well with it then 100 cc is next one 2 weeks later. He's on the every 2 weeks thing so being I'll have 8 weeks of dealing with AC then 12 weeks of weekly Taxol followed by 3 weeks of rest before rads, I should have my size before then. I have no idea how many ccs a small C is but that's the size I'm aiming for. I plan on being done with fills before the rads. Thanks for the heads up on the overfill prior to rads part. I could have sworn my PS said he'll take some out before rads but now I can't be sure. I'll have to ask the reasoning if it is take some out.
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I start fills in two weeks. I am still having trouble with the drain so I am waiting for the doctors office to open. I am so tight and swollen.
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I agree with the thought that a 100 cc fill is very large. If 50 was ok, try 60 maybe the next time. I'd be nervous peronsally if he was going to try a 100 on me.
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Ya, I'll see what he says though he feels that I could do 100 probably because I'm not so tight in the chest is my guess. He will of course do what I want, that was just his thinking with what he's seeing and what I'm saying about how I feel.
Molly: If you're having problems with your drains you may not be able to start fills in 2 weeks. At least with my ps he wants my holes to be healed before starting any fills, which is 2 weeks for him. Good luck and hope the drains get fixed. I hope mine come out tomorrow as it will be 5 loooooooooooooooong loooooooooooooooong weeks having them in to the day! ah!
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You ladies are such a blessing! I feel so much more prepared after reading all of your posts.
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Some PS actually will start fills with drains - the thought is that the increased pressure from the fill cuts down on the fluid production. Other PS will wait, and some have a cut off date to remove drains, regardless of output, due to the infection risk.
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Arista, I hope you get your drains out. My PS removed mine and did my fill even though I was still pumping out about 40cc per day and the fluid was still pretty red/orange. I thiiiiink today was my last fill. Stopped at 300cc. It fills very tight.
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katcar you did better than me. I stopped fills at 250, but PS was able to get 300 high profile in. I think they are still fluffing but they haven't got any room to do so.
Arista hoping you get those drains out.
Scottie
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Thanks gals. It's looking good so far but we'll see what tonight and the am's output is before the 9 am appt.
I was wondering, how the heck do you know when to schedule fills while you are doing chemo. I mean anyone have a magical day # that you feel the best that you make appts for in advance? I'd love to see how I feel that day and just walk in if I'm ok for a fill, but yeah, docs offices don't work that way.
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artista - it should be dependent on your WBC. It needs to be high enough so that your infection risk is low. Will you be getting a Neulasta injection 24 hours after each chemo? Your WBC will fluctuate between infusions but you should see a pattern develop
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At the chemo class yesterday, they gave us a my treatment journal which goes like this:
Date WBC/ANC H&H Platelets <= spiral binding => Treatment Comments
We are to give this journal to the infusion nurse at each visit to have them fill this out and we carry it with us. So this is actually good because then I can give these #s to ps and he can decide if now's a good time to fill (if I don't feel shitty)?0 -
Scottiemom - Thanks for your comment because you touched upon something I find confusing. My doc filled me to 295cc (I thought it was 300cc but just added all my fills and that's what it comes to). He plans to put in a 300cc Mentor CPG anatomical high height moderate profile. My concern is that I don't want the implant to rotate--wouldn't he need to put in a bigger implant? Also, I am concerned I won't get enough projection. I'll have to pose these questions to Whippetmom. I believe you got high profile smooth rounds? My doctor doesn't like those for me, but I wouldn't have to worry about rotation and possibly rippling as well.
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I finally got my last 2 of the 4 drains out today, after 5 loooooooooong weeks! Ahhh what a relief! Those suckers would pull even though I set them inside pockets.
I'll be having my first fill about 2 weeks from now. It was on for 9/24 but that's the only date my bs can install the port before he goes on a very long vacation so I have to move that. How much discomfort comes with a port installation? I'm thinking of rescheduling my 1st fill of 50 cc for the next day. Too soon or maybe they won't even do it if it's the day after?
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As usual, some ports hurt more than others. You might want to sleep in a recliner a day or 2. It prevents you from turning over onto your side in your sleep. Ask your port Surgeon if you can have a fill that soon. They a have you wait because of placement issues. also if you will e wearing a bra - mark where the straps go so he on put the port where it will catch on the bras. I had a lot of t so mine didn't stick out at all.
Much love
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Thanks Moonflower! I think I"m going to see if I can have my first fill on that Mon and then on Wed 9/30 have my first chemo (a day in between before chemo and 50cc fill). Man, trying to figure out what to do when when you have no clue how you are going to feel day to day! Ah! xo
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katcar. . .definitely post to Whippetmom. I did not get the reqs from her because I did not have the necessary info on my TEs. I chose the round ones specifically b/c if they do rotate it won't matter. I was very concerned about that. Also I have read that you get more projection from the rounds than the anatomicals. I don't know how much that depends on the individual though.
Since I stopped my fills at a B cup size I wanted as much projection as possible. I ended up being a C cup. PS did say I still have some swelling so we'll see how they settle in. Getting the bigger ones in, however, filled my pockets nicely and they are much closer together in front than the TEs. I had about a 3 finger gap before and now it's no more than 1.5. Thus I have cleavage in a bikini top. As for bras, I was wearing basic cotton sport bras for years for comfort and I'm back to the same now. It's easier, cheaper and more comfortable. I've been past my expensive Victoria's Secret stage for years.
Artista. . .yeah on the drains. Good luck on the port and fills. HUGS
Best Wishes,
Scottie
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Hi Ladies, I had a skin sparing umx on 9/4. My TE was filled with 120 cc on the table. The first two days I was freaked out by the squeaky, squishy sounds of the TE but I wasn't in much pain. In fact my Lx with alnd was more painful. My restrictions are two weeks of my lifting over 10 lbs and nothing strenuous. My PS at my post op said I am healing nicely, took bandages off, checked the drain and said to start stretching my arm for ROM. I told him that I woke up that morning feeling swollen and felt like my drain wasn't working right but once I stripped it I got it draining again. It's still swollen and I am uncomfortable. Is this normal? I get my fill next week if my drain comes out this week. My PS wants to do fast fills to finish prior to rads. I told him low and slow is what I want. Does it matter if my fills are finished before rads? I am so tight my ROM is not good. Is that normal?
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Molly - sometimes fills help by applying enough pressure to eliminate some drainage - some PS will fill with a drain in place, others won't if they are concerned about multiple avenues for infection. If you have rads following chemo, you have less of an option for "low and slow" because you most likely need to be fully expanded, possibly over expanded, prior to the rads because it can be very problematic stretching skin post-rads. Expansion after rads has a fairly high failure rate, which can change your reconstruction options. Many RO will not even attempt it for at least six months. The need for full expansion and overfilling is because rads can cause tightening and contraction of both skin and pectoral muscle, making the pocket smaller and the skin harder to stretch - the overfill, and fast expansion, compensates for this.
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