DIEP 2011
Comments
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The ONLY reason I can see getting expanders and then DIEP later is if you are having radiation... The standard is to have a stage 1 surgery where they do the MX AND do the DIEP at one time and then 3 months later have stage 2 where they make the breasts symmetrical, build nipples, lipo fat elsewhere to fill in breast gaps... nothing overly invasive.
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It's not standard by any means. You should probably try to get a detailed explanation/timeline of what they have in mind. Your result can be much, much better if you have immediate reconstruction... and one less surgery, as well!
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And I should add... that many women will have their DIEP and then radiation and then stage 2... radiation can shrink the breast some, so the PS can overstuff it in stage 1... If it were me and I was having DIEP and radiation, that is what I would do.
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Thank you for your info I am going to talk to them about this because it didnot make sense to me either I will keep you posted on their reply dont want any extras if not necessary
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I did a uni-mx with a tissue expander and then DIEP 5 months later. I waited beyond the recommended three months for my mx because it took me that long to do all my consults and to choose my breast surgeon and plastic surgeon. We have some very good PS's in my area who only do delayed and do not use tissue expanders and they get very good results. I am very happy with my decisions . . . .they were the right ones for me and my situation. My diagnosis was IDC <1CM. No radiation and no chemo. I canceled one surgery date and got a later one with a different surgeon, but checked with both surgeons; they both felt the timeline was fine given my particular cancer.
I considered all my options and what was important to me; made my decision and am happy with my outcome
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Matahead... so now Kathy has given you another route... I think the standard is Mx and DIEP in the first surgery together, but clearly there are other options... Some things may contribute (like radiation) and perhaps sometimes it is just a surgeon's preference. I think you need to decide what is important to you, ask questions and go from there... There may not be a right answer, just a right one for you.
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The same thought crossed my mind. Maybe cut it out ASAP. But if I can FIGHT for an earlier surgery, that might be better. It's hard to stay calm and not stress the immune system!
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I think Treespite waited because she wasn't sure what she wanted to do in the long term. If you're sure of your bs and ps and DIEP, I don't think it makes any sense not to do the DIEP immediately. Unless the PS is unavailable quickly enough. Why have two surgeries if you can have just one? Especially if you don't need radiation. I had MX and immediate DIEP and will be starting radiation 7 weeks post DIEP. Hoping it works out well, there is a chance the radiation will make me lose the noob. But if I had radiation first and then DIEP, that has extra chances of not working as well. I believe, if you need radiation, no matter what, your chance of having the DIEP fail is greater than someone who didn't have radiation. However, both my RO and PS said the risk of having it fail is small. I am hoping it works out for me. Hope things work out for you too. Let us know what you find out. Even though I'm done with my DIEP, information is always good, and someone else may benefit from the answer.
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I had mx on its own because my lumpectomy result was much more aggressive than the 5-month-earlier biopsy had predicted. I wanted it off-off-OFF and the other one too, and the surgeon pushed back and said "DCIS is not cancer" (that's their philosophy at that clinic) and said he could get a "better cosmetic result" doing reconstruction later. He said even the mx was overreacting, let's just expand the margins. I said let's not, but I did not push for the bilateral because I don't want to go to sleep and be cut on by someone who disagrees with the procedure, but the mx was going to happen pronto. I did not even want to take the time to go to the bottom of more waiting lists for additional opinions. It was coming OFF. There was additional DCIS in the mx so expanding the margins would not have been my final surgery, and was glad I pushed.
I will have the DIEP immediate with the prophylactic mx, and obviously "delayed" on the previous mx. And I'm going to a different centre. The use of expanders has NEVER been proposed by ANYBODY at any point in this adventure even by surgeon #1 who figured the recon would be by implant. The DIEP scars will be different but with clothes on, it should be symmetrical, and not many people will see the scars. (Aside from a spot of keloid scarring, most of my mx scar is invisible 9 months later.)
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Matahead... If you can get an earlier surgery date and have the MX and DIEP in one visit, that is best... if you have to wait for 3 months, perhaps get the tumor removed now and have the MX and DIEP later... That is what I did... I had the lumpectomy (totally painless and no real recovery time), then had chemo and planned my BMX and DIEP/Hip flap surgery... which as my choice... My BS and MO wanted me to just have radiation, but I chose MX instead... And I am fine with the way it all went... I wanted that tumor out... and my BS didn't even mention MX... and had she, I probably would have gotten implants due to lack of knowledge and then later regretted it... so for me, it all worked out... cancer was out last December, gave me time to research my PS and choose the right path for me... I don't think I asked, but why are you getting MX instead of lumpectomy? Do you have multiple tumors? or is it too close to the chest wall? too big? or just what you want?
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I was talking with a friend last night who had BMX with implants... telling her about my failed tissue expander on my UMX, and that I am now looking at a proph MX and double DIEP in the November timeframe... She said she wishes she had done the DIEP instead of the implant.. and I completely understand.. I told her that when we have the cancer still in us, we feel this rush to get it out, and everyone pushes toward immediate recon, but that PSs seem to push the recon with which they are the most comfortable.. So I have had all these issues with my recon but look at it as second chance -- now I will end up with BMX rather than UMX, and I will end up with DIEP rather than implants... both of which I am so glad about getting now...but when I got the DX, I was so overwhelmed, and so confused, and so scared.... Ugh!
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Hi everyone hope you all are doing good today I am just loggin on because I had to go thru E>R last night my bronchitis flared up and I feel horrible .
B.Davis I do not have multiple tumors but it is 7 cm what ever that means and I do have a history of cancer in my family my aunt had breast cancer and died my other aunt had cervical cancer she passed also and just recently my uncle had prostate which has spread to his bladder is stage 4 all within 1 year, so that is why I want BMX I feel I will have a lil peace of mind
Goldlining: so you will have the diep done later and they did not say do tissue expanders what will happen to skin for diep?
Kay1963: if the noob fails what will they do then praying that it dosent fail and all goes well foryou
Just V: sorry that you expander failed may I ask what went wrong with the expander because I have read some bad stories about these expanders and that is what they want for me when I think just do th BMX and leave it be until time for diep or does the make diep better?
Ladies I really appreciate your info it is really helping me a lot with this nightmare since diagnosis has just had me in a fog I really feel as if I am losing it and there is no one but you all to help us thru this so once again thank you all this is a much needed site.
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mata - my nipple sparring MX was along the fold line under the breast, and the blood flow was restricted... I retained the nipple, but the skin under the nipple to the top of where the crease should be died... the TE became infected which may or may not have been associated to the skin death.
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matahead7, I am not sure what happens if the noob fails. It could have failed whether I had radiation or not. Biggest chance of it happening is within 24 hours of surgery, but then they'd probably try to fix the vein or something surgically. Was told I couldn't do implants because of the radiation. I guess they'd have to remove the tissue, and I'd have to go with a foob. Will cross that bridge if I come to it. Really not expecting it to happen though. And there may be other options, I didn't ask.
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We are all different. 8 yrs ago I had a lumpectomy and radiation - no chemo. I was happy with my breast surgeon (who was also recommended by the radiologist who has done my mammos and sonos for yrs) and so I went back to her with my 2nd dx in the same breast. I wanted the surgery done quickly for family timing reasons, so I did not do reconstruction immediately. I interviewed a couple of PS and looked into my options before having DIEP last summer. Although I had an additional process to put TEs in place, I would not have done things any other way. For me, dealing with things a little at a time (mx, chemo, le, tes, diep, and finally stage 2) has been the way to go. I am single, my kids are all away from home, and I teach - don't think I could have handled the mx and reconstructon all at once.
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matahead... I had the bilat MX and hip flaps all at one time... I had NO pain and recovery was kind of easy... I did have some skin issues on right breast though and my incision opened and so that side failed, even though there was adequate blood flow, so I went back for a wound surgery and a DIEP flap to replace the loss... had to add abdominal skin as well... I am now doing well... but for ME, I would not have wanted to separate the MX and the recon... just would have dragged this all out even more than it already has been... With a 7cm tumor (mine was 1.9), I can understand you wanting it out... If it were me and my doctor could only o the DIEP in 3 months, I would have the tumor taken out via lumpectomy (preserving the skin) even if you are lopsided, and then when your surgeon is ready to do the DIEP, have the MX and DIEP at one time... In your case, since you have your doctors all lined up, I don't see the advantage of putting in TE, and there is no reason to expand anything for DIEP. Perhaps you would be willing to travel? If so you can see who else may be available sooner, like in New Orleans or Chalreston.
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I wanted immediate DIEP reconstruction but had a time frame and, at the time, I did not want to travel. I had picked my breast surgeon and my PS, so I decided to do the skin sparing mx with a TE and the DIEP as soon as possible after healing from the MX. I wasn't comfortable waiting until I could get an immediate DIEP. I knew that I didn't want to wake up flat chested, so the skin sparing with a TE was my compromise. I did HATE the TE and I had some healing issues after the MX so have some damaged skin but nothing that I can't live with. My PS's hospital has challenges scheduling OR time for DIEP's. Now that I know alot more about traveling for reconstruction, I think it is well worth considering.
I sought counsel from people I trusted and had to shut down a few people down who were a little TOO insistent with their opinions. Whatever decision we choose, we have to live with the outcome and we have to stay true to ourselves. I had some people telling me that I should absolutely go with implants . . what the ??? . . . really?? Always from people with zero experience! On this forum, we speak from our personal experience which is worth so much!
The docs we consult with absolutely 'push' what they are comfortable with or what their resources support or what they have access to. I researched before I ever met with a PS and my gut told me that DIEP was for me . . . I did not want a foreign object in my body and I knew I wanted reconstruction right from the moment I knew I had to have a mx. I did uni because my docs advised me that my chances of recurrence are low and I was willing to take the risk. If I do have recurrence, I will deal with that if and when it happens.
I never realized all the variations in breast cancer, then add in all the variations of tolerance for uncertainty, life situations, finances, family history, etc and there are a zillion ways things can play out. I get a 'gut' feeling about what is right for me, sit with it and check in with trusted resources; my physical therapist and internist really helped me; they both said if it were them or a family member, they would absolutely go with DIEP. I know I've said this before; I also visualize myself a year(or two or three) in the future with the different choices and feel how my body responds . . . it will either feel at peace or will feel betrayed or disappointed. No matter what the future brings, I'll be fine.
The success rate for DIEP is very high and there are remedies when complications arise. It is important to do your best to control for things you can control for such as good self care and building up stamina before surgery, using meditation tapes (if that suits you), using supplements and good nutrition post surgery for healing and rest, rest, rest! There are sites on the internet that outline what you can do to prevent infection . . .well worth taking seriously and sites that make recommendations on using supplements to support healing, also really worthwhile.
Whatever direction we ultimately choose, we deserve the best care and support available and the best outcome possible.
Kathy
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I think my PS is comfortable doing either DIEP or implants. Maybe she is an exception. It seemed like those two docs in the film showing the DIEP surgery were comfortable doing either as well.
If your tumor is that large, perhaps you might do chemo first? I hate to throw something else in there for you to think about. I did chemo first because of a combination of the size and location (close to the chest wall) of the tumor. The BS wanted to shrink the tumor with chemo first so that she could get good margins. (Even though I was getting MX, lumpectomy was also not an option for me.) I am sure you will get all the info you need and do the best thing for you. Let me know if I can answer anything for you.
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Actually.. I agree with Kay... With a 7cm tumor, you'll be having chemo anyway, right?? Why not have it first? Then you wil have lots of time to plan your surgery.
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Some more interesting discussions. My surgery (probably DIEP) is now scheduled for Oct 26 - but it's beyond the 3-month window, at least from my discovery (just over 2 months from actual dx). Trying to get it sped up, but it sounds like anything that would require a PS couldn't be done before that. They said they'd try to get an earlier date. The time element has been my big fear all along (TN and Grade 3), but I keep getting the 'cancer grows slowly' reassurance.
And it is interesting how we all get so caught up in the reconstruction maze and how much it depends on what surgeons we happen to see, and in what order. I love the idea of immediate reconstruction, but I think if someone had actually said, well, you can have a lumpectomy and go from there, or do the bmx with delayed reconstruction, that's an option, I might have considered it. Still will if it moves up the timetable.
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matahead7, they will use the skin from the abdomen that is already stuck to the flab-flap, on the delayed side. It will be like a little window of tummy skin. On the immediate side, they will use as much of the skin that's there as they need to cover the flab-flap. The scars won't match so I think my career as a centerfold model is over before it began, but I'm more interested in symmetry in clothes. Very interested in getting back to my post-reduction pre-pregnancy size (both above and below the waist).
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My final PS choice was comfortable with whatever I wanted but when I asked what he recommended and what had the best long term results, he said DIEP, no contest; fewer complications and less maintenance in the long term (replacing implants etc.).
I have the 'window' of skin on my DIEP side . . . they used a circle of tummy skin to create an areola circle and also replaced some of the damaged skin mx healing issues. I think breast tissue heals fairly well . . maybe because it is thinner than tummy skin, so I bet the long term scars will be less noticeable than you think. I saw some women who had delayed recon on both sides (so that 'football' shape of tummy skin) and it was barely noticeable . . you had to look closely to see the lines. That work was done by a PS who prefers delayed with no TE. When I look down and when I wear low cut shirts, there is no evidence of recon and great cleavage (she says modestly!); only when I'm naked looking in the mirror do I see any evidence. There will be even less evidence when I get my nipple and tattoo.
I'm having trouble because I FEEL so skinny with my flat tummy and much narrower waist . . ha ha . . . however, I have put weight on my butt and thighs! I am quite good at denial! I feel good and love the way my clothes fit . . .so fun! All the hard stuff is becoming more and more a distant memory.
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Treesprite, it is so wonderful to hear how happy you are with the new and improved version...and especially heartening to hear that memories of the hard stuff are fading into the distant past -- especially as I ready myself for stage2 on Thursday, which I am approaching with great trepidation! I am considering how far to go with the lipo. As you've heard, Im sure, they generally do quite a lot at NOLA. I am so ready to be done that I am thinking about having the bare minimum. One of my concerns, in addition to recuperation time, has to do with long term consequences. You mentioned gaining weight now in butt and thighs. I am curious about whether these are "new" places for you to see the weight, or if these were always areas for you. I have heard that since the fat can not go back to tummy after DIEP, or to areas where lipo removed the fat, that it finds new places if you gain weight. Hmmm. Hope you don't mind my asking...I'm so appreciative of your thoughts on this
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I have a date for surgery. I will have a UMX (the 'good' boob) and double DIEP on November 9th.. Must say, I have butterflies in my stomach.....
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Jerusha... I am not sure about the fat not going back to DIEP belly... It seems my belly is less flat or taut than it was and is looking more normal... From the side view, I am completely flat from crotch to breast, with no bulge at all... and when I say completely flat I don't mean fatless or thin per se, just no bulges... And I also had the fat taken from my butt, so at stage 2 they will do a butt lift and lipo the thighs.. I'd like to think they will cut out any extra butt skin while they are at it, so eliminate that "down the road" concern.. They already took the skin when they took the but fat the first go around, but am really looking forward to the lift.
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Just_V, I have been off the boards for about a week or so, so I am a couple of pages behind but from your post from today it sounds like you are doing the same thing I did. I had a radical MX in September of last year and in August of this year they removed my other breast and I had bilateral DIEP reconstruction. I have read a few posts about asymmetry, etc. in that situation and I have to say that I may not have identical twins but they are pretty darn close. During my first mastectomy, due to tumor size and aggressiveness, they took it all - nipple, tissue, fat, everything. I was totally and completely flat on that side. I was worried about how they would make my breasts match but Dr. Kline did. I may not be beautiful to everyone but I think I look fabulous!
I will have to finish reading all the other posts tonight!
Susan
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Susan - thank you so much for your post... not a lot of us out there... my UMX was a simple one with skin/nipple saving, but I lost a lot of the skin under the nipple to the top of the fold... so I have a nipple and the top half of a breast... Glad to know that symmetry is possible.. was the recovery awful? I've been told the big thing is the stomach healing, and that the other UMX is not a big deal other than additional drains... How long was your recovery?
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Just V: butterflies are so normal; I went into panic mode a couple weeks ahead and decided to do an about face and go with implants! Ha ha . . it was pretty funny . . I told my family and friends and then realized what a mistake that would be (for me, anyway) . . I was just trying to find a way out of my last minute jitters. A valium and/or xanex here and there, meditation/stress reduction tapes, a glass of wine . . .whatever works! They are so good at this procedure; they wouldn't be doing it if it wasn't safe and had a high percentage likely-hood of a good outcome. You will go nighty night and wake up with lovely soft noobs that are all your own tissue. I wake up like 'drunk girl' . . .I want to kiss my PS and everyone else involved . . it is pretty funny - I'm so glad everyone enjoys the show!
Jerusha: My belly has softened over time; I'm not perfectly flat from the side view but no bulge hanging out or over. My pants look great. I have decided not to worry about how my body will gain or lose fat, from where and how. I feel like I am putting weight on my thighs instead of in my stomach; I would think eventually you would be able to rebuild all the fat cells that went away if you worked at it (ha ha . . . not that that is my goal or anything!). I have a uni, so if I lose weight, I believe my boob and noob will lose/gain weight differently, but I am not going to worry about it. If something drastic happens, I'll do something about it if it bothers me, otherwise, why worry??? I don't need any extra stress and my goal is to love myself and my body no matter what . . actually, no f***ing matter what, pardon my expletive . . . but I've spent too many years with my body being not good enough whether I have weighed 105 or 165 or anywhere in between!
With age and peri-menopause, any extra weight settles around my waist, butt and thighs, whereas pre-menopause, it was definitely more evenly distributed . . a shocker when I gained back 30 pounds when I got laid off after being a crazy saleswoman with a large territory.
I always try to imagine how I will feel in the future with either decision and go from there. So if you feel like you will miss a good opportunity, go for it. I don't want to have any regrets but I also can't predict the future, so tell myself I will be fine whatever my decision is. Definitely ask your doctor (or support staff) any questions pre-surgery so you can decide with the facts. Whatever the recovery, you will get through it and it is only temporary. My stage 2 was minimal but still not a picnic, but so much easier than being stuck in the hospital for 5 days in modified deck chair position, all bent over with a sore back and worrying about my flap! I did everything I could to minimize the yucky stuff . . .scolpolomine patch for nausea pre-surgery, different pain meds, getting my body set up for low chance of constipation (so fun when that happens!).
Kathy
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Just V so excited that you have a date.
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Hi ladies, I have been off the boards for awhile, now trying to catch up on all the reading. I hope everone is happy and health and recovering. I am well on my way to getting back to normal after BC. I am to have my stage 2 in mid Nov.and that is suppose to include filling in the front of my breast and lipo on the dog ears. Later nipple tats if I want them. Look very forward to nearing the end.
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