Nipple Sparing Mastectomy with immediate reconstruction
Comments
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hillck-I hadn't read that report but it is my understanding that NSM has actually been around a long time. There are also many reports supporting it. My Dr explained when it was first done they didn't have the strict criteria they have now. Now they understand that not everyone is a candidate and to be a candidate you must meet the criteria. If you meet that criteria the risk is very low. My oncologist said the same thing. He did not feel the risk was any greater with our without the nipple in my particular case. I agree with Susan that is great that NSM is an option and I hope it can be an option for more and more women.
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I know I was told going into surgery that there would be a chance I would not wake up with NSM as I wanted if there was any chance of cancer being left behind. I think it is just a matter of testing at the time of the surgery.
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Unfortunately, a lot of data on recurrence is based on the NSM's of the past where surgeons were not as skilled at removing the most breast tissue while still maintaining blood supply to the nipples. The same could have been said at first about the earliest skin saving MX which are now the norm. Surgeons were originally leaving so much tissue behind in an attempt to save all the breast skin that women were having a large rate of recurrence. In time this was perfected and, luckily, no woman has to have the kind of MX my grandmother did which could only be described as mutilation. I never once thought I was leaving myself at any higher risk than a women who had her nipples removed and I know, emotionally, I am much healthier than I would have been had mine been removed. But everyone has to make the decision that feels right for them.
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Cindy, do you have a link? I agree that even though the report is recent, it's probably based on years of data which includes an earlier time that, as others have said, did not include the stringent patient criteria that are used today.
Personally, I'm thankful every single day that my nipple was saved and I had huge margins and no cancer (not even ADH) directly under the nipple. I wouldn't have had it any other way even if I had been discouraged from it.
BTW - I am four weeks out today and looking pretty good (other than the caved-in-ness since I haven't started reconstruction yet). The nipple is beautiful... I still have a chunk of scab over it which is mostly detached... I don't want to tug at it, but I did have a look underneath, and the nipple looks exactly like it did before the surgery. YAHOOO!!!!
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CrunchyPoodleMama- Happy to hear you are doing so well!!!!
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CrunchyPoodleMama - hooray for your nipple! that is great news.
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Hi everyone. I'm joining you all- scheduled for a nipple sparing PBM on Jan. 26th....less than two weeks away. filled with a mixture of dread and well, just dread for tonight.
Kelly
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Hi Kelly:
I am so sorry you have to join us but welcome aboard! The worry before can be worse than afterwards because you get good drugs after surgery!
Read up on the surgery boards for ideas of what to have at home that might help you afterwards, and you can always send anyone a personal message by clicking on their name if you want to ask something specific of someone.
I wish you the best with your surgery!
Paula
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Thank you so much, Paula! I so needed a kind word tonight. Better in the morning for sure.
Kelly
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Oh Kelly, I remember the dread so vividly. Near the end I was having panic attacks, sobbing uncontrollably in the middle of the night, etc. I did NOT want to have a mx at all (since I "only" had DCIS) so that was a lot of my dread.
It really won't be as bad as you dread... try to stay as distracted as you can (but also do any "pre-grieving" that you need to)... it will be over with before you know it. I wish there were something that could take away all that horrible dread beforehand!!
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Kelly - I've been thinking about you!!!
I knew your date was soon approaching and you have been on my mind, ...well, I know this is a trying time, but like I said to you before, it does get better, the relief is amazing once you get past this part...really, I feel for you...
but, for now...feel what you are feeling, and let it out, you are never alone...this is an emotional time, but we are all here for you!!!
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Kelly- I just wanted to welcome you, too. We all understand the dread, and I won't say it's easy, but it really wasn't nearly as bad as I made it out to be in my mind. I think you'll realize like a lot of us how lucky we are to have been able to have a nipple sparing MX. It really goes a long way towards making you feel whole again afterwards. I know what an overwhelming time this is but you'll find this site to be such a lifeline in the months ahead. We are all here for you- whatever you need. (((hugs)))
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Thanks very much everyone! My mind goes off in such wacky tangents. I begin freaking out and then I tell myself of course I can do it and then I freak out again because I don't want to raise my own hopes up! Craziness. It really does help to read the whole thread. I like to be prepared- for the good and the bad- and I so appreciate that you all have been willing and able to express those things. Best to all!
Kelly
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Kelly- Will you be having reconstruction? We've all done different methods and can help you with what to expect there as well. One thing I would say as to preparing physically for your MX is to start hydrating a lot in the next few weeks and then continue afterwards. This will make such a difference in how you feel after your surgery. Anesthesia does strange things to our bodies and minds. Being hydrated helps flush all that out as quickly as possible. Another tip would be to ask your surgeon for your prescriptions ahead of time so you don't have to send someone to the pharmacy after your surgery. I'm sure others will have some tips for you, too. Again, we are here for you.
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Thanks, Kate. I'm having TE's with eventual exchange for silicone implants.
Kelly
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Kelly- That's what I had, too, so if you have any questions let me know either here or PM me. I'd be happy to help any way that I can.
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Kelly: I hope you are feeling a little better today. I had TE placed at the time of my mx and then had gummy implant. I agree with Kate, that this procedure makes a big difference I think in how I feel personally after my mx. At least on the outside it is still me. We are all here to support you.
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Hey Kelly-
I had prophy BMX NSM (LCIS) with TEs on December 14th, and I was almost catatonic the week before worrying what they would find, worrying about a 5 hour surgery/anesthesia, the worry of possible complications and pain. That being said, as most gals here will tell you, the weeks leading up to the surgery are the worst, you can really work yourself into a state (plus it is probably the culmination of years of worry). The good news is that you WILL come through this and have such a huge sense of relief. I know everyone's situation, surgery and recovery is very different, but I must tell you...so far, for me...I have had no complications at all. Some discomfort, banged/ bruised/stiff/sore for a few weeks (and some annoying stretch marks that my A cup boobs did not have before!) but no real pain. Week one was a medicated blur (take whatever they give you and take it before you think you need it! And the advice to get non childproof caps was key--the "twist and turn" is almost comically impossible). The drains are, as my 14 YO would say, just gross. I only had them in for 6 days so I was lucky. I had light scabbing (more like a bad sunburn) that peeled of over the weeks. I am allergic to tape so I had real stitches that came out a few days after drains (Ugly scar but PS doesn't care as he re-opend thats same incision for implants). I was walking everywhere at a decent pace week 2 but pretty much taking the days really slow, getting tons of rest (just taking advil) and I was back at work full time 3 weeks to the day of surgery. I was sitting on a recumbent bike and doing light stretches by then too. The TE's are quite an adventure, so that is the part I am up to in this journey...no words to describe how odd they are..truly like they were filled with cement. MY PS fills slowly..30 cc's at a time so the first one has not been too bad (he started me at 120 cc,... with the 30 I am pretty much the A cup I started with now)...They actually move less now so I am able to sleep on my side again (your bed will look like a Rubiks cube of pillows). My TEs are 250's so I have a quite a ways to go still, and PS waits 6 weeks after last fill for implants so I am really looking forward to spring!
Anyway...my experience has been really exceptionally good so far as have so many of the women here. Not too many regrets on this board, and you will not be one either. We are all very fortunate to have had this option. And just look forward--live knowing that you will be on the other side of this shortly...in a few weeks you will be reaching back to someone else and assuring them. Again, I caveat all of this as I know everyone has had a range of experience, but think positive, keep telling yourself you WILL BE amazing, you WILL BE one of the great stories on this board. Since my surgery/diagnosis sounds similar to yours, pls PM me and ask anything (I am also around all weekend if you want to chat live).
Best,
Ilene
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Wow! Thanks so much for your support. My husband took the kids out of the house today and told me to stay off the internet....I took a two hour nap (! unheard of around this house!!) and then logged on to find these messages. Glad I ingnored him, as well-meaning as he was. Have any of you had experience with the on q pain pump? I was told that's what I'll get with the option (yes, please!) of additional oral pain meds (likely percocets). My in laws are coming to watch the kids but today they've proposed that they come and let the kids see me when I get home from the hospital and then take them back home with them for a few days. My husband is worried that though they love being there, it's 7 hours from us and that they might feel even more insecure without us. What do you think? I know the extra space to recupperate would be nice but I think too much and too far for the kids (they are 7,5,4 and 2), especially the older two.
thanks again, kelly
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Kelly- If your kids are comfortable at your in-laws then I would say it's probably a good idea. You will probably be sleeping strange hours which can be difficult with small kids around. And since your kids are so young they may not understand, or may forget, that they need to be extra gentle around you so they don't cause additional pain. Those first few days are rough and you've got to concentrate on you which is hard to do with our kids around. No matter how much we hurt we still feel the need to do things for our kids. Maybe just explain to them that mom needs some extra "quiet time" for a few days and that you'll talk to them every day they're gone. Just wondering, though, if you'll have someone else staying with you all day if your in-laws aren't there?
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Hi Kelly - My plan when I went in the hospital was to bring the girls (5 & 7) to my parents house the day before. I had to stay at a hotel the night before BMX because the drive from Rhode Island to Boston on a Monday morning could take hours and I didn't want the stress of the drive, plus, we had a room for my husband to go back and shower etc while I was in hospital. My kids wound up staying a week at their grandparents. I thought this workerd out great because it was like a vacation for them. The girls went on days trips, museums, the library & playgrounds which kept them busy. Their teachers gave them packets of "busy work" if there was downtime. I liked knowing that they were in their "happy place" (my parents live on Cape Cod and I think my kids would rather live beach-front ;-) It was a change of scenary which kept them busier than at home. They missed school but I was ok with it.
By the time I got home I was really glad no one was there...don't get me wrong, I missed my kids, but I needed sleep and that's what I did for a couple days with no interruptions or feeling guilty I wasn't helping out/up to chatting. Also, my kids wound up sick & on antibiotics so my parents kept them a bit longer to ensure I didn't get sick in a "delicate" state.
Feel the kids out and see what they think. Maybe frame it like a vacation and see/ask if there are things they want to do while they are gone. Even just heading to the library for story hours (your young ones might like that) the movies, or local attractions could keep them busy. I don't know how much your children know about what's going on, I told my two that Mommy was going to have surgery on my chest to "stay healthy". They didn't bat an eyelash because I focused on that I was healthy, looked healthy - and that was enough for them to not worry about me in the hospital.
Not sure if this is helpful, but my girls came back refreshed & excited...and I was in MUCH better shape after a couple days alone at home.
Glad to hear you got a peaceful afternoon to yourself - you deserve it! Now it is definitley important to stay as rested as you can to keep up your health/strength!
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Kelly: My kids are grown, so no help on advice there, but I can tell you that I would definitely not have been in any shape at all to take of them with kids your ages!
I was on a pain pump in the hospital. It just helped you control how much morphine you got and you could push it every so often for more if you wanted. I was only in one night and went home the next morning.
I had heavy duty oral meds and slept in a recliner a LOT the first week. Fortunately my mom was living here at the time and took care of laundry and food and my husband was home with me to take care of me and help me get cleaned up....in and out of the chair....all those things you think shouldn't be a big deal but really is.
Letting people help you is hard for a control person like me.....but sometimes letting your friends and family step up and take your kids, cook food, clean, etc., is a gift for them too. They want to help and it what they can do to help you. You need to focus on getting better for those kids of yours.
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I had nipple sparing mastectomy by a dr baron in Charleston with immediate DIEP with Dr Kline. I have spent 6 months praying and watching my nipples hoping they stay alive. I had my second stage in Dec 2010. The MD warned me that I might lose my nipples during the second stage and I was so scared. I was obsessed with keeping my nipples. I really loved waking up after BOTH stages with my nipples there. It made me feel I never lost my breast. Now my doctor did alot of hard work keeping them a live and actually lifted them which required some amazing procedure that I didn't quite understand. Where I went to his office for 4 weeks once a week and he cut a 1/4 around my nipple adn then sewed it back up "delay" procedure. But it worked I got my nipples lifted. All the other doctors told me I had to lose them because I had so much...oh what is that work..."toases" meaning droop. But Dr K gave it a whirl and I am so happy. Now I have seen reconstructed nipples and yes they look better than mine. But I am just happy there are mine.
I just hope when the dr told me since I had never had cancer I could have a NSM with no increased risk ...he was right....I'd hate to find out 20 years from now he was wrong.
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Hi girls I have new pic at the forum let me know what you think? 0
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Hi all, I'm new to the site and reading like crazy. There is almost TOO MUCH information here!!!
I have DCIS in 2 places in my left breast. I had DCIS with a lumpectomy in the right breast 6 years ago. I'm going to have a bi-lateral mastectomy soon (date TBD). I meet with the surgeon last week and have an appointment to meet with the PS next Tuesday. What I think I want is a nipple-sparing procedure with immediate DEIP. I'm not even sure that is possible! I'm 48, in decent shape, and really want to get is all over with at once. I'm going to be out of work long enough with one procedure (I'm a pet sitter/dog walker and am self employed).
I hope what I want is possible. I'm going to ask my PS all of the questions that are posted on this thread. I also have questions about what they can do with my original nasty scar. My new surgeon was a bit shockedby the hatchet job the first furgeon did.
I live in Long Beach, CA. Does anyone else live nearby and have experience with local surgeons?
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Hi all, I'm new to the site and reading like crazy. There is almost TOO MUCH information here!!!
I have DCIS in 2 places in my left breast. I had DCIS with a lumpectomy in the right breast 6 years ago. I'm going to have a bi-lateral mastectomy soon (date TBD). I meet with the surgeon last week and have an appointment to meet with the PS next Tuesday. What I think I want is a nipple-sparing procedure with immediate DEIP. I'm not even sure that is possible! I'm 48, in decent shape, and really want to get is all over with at once. I'm going to be out of work long enough with one procedure (I'm a pet sitter/dog walker and am self employed).
I hope what I want is possible. I'm going to ask my PS all of the questions that are posted on this thread. I also have questions about what they can do with my original nasty scar. My new surgeon was a bit shockedby the hatchet job the first furgeon did.
I live in Long Beach, CA. Does anyone else live nearby and have experience with local surgeons?
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NotAfraid- First let me say we all know how overwhelming this all is but you've definitely come to the right place. This site is such a lifeline and great source of information and support. We're here to help you in any way that we can. If you'll look at the top of the thread there is a link to another thread where women have posted who their breast surgeon and plastic surgeon were and where they are located. You may find a PS listed there who is in the Long Beach area. Did you ask your BS at your appointment if you were a good candidate for a nipple sparing mastectomy (NSM)? If so they should be able to recommend a PS as well. Definitely make sure, though, that your breast surgeon performs NSM's and is very experienced in the procedure. Those that aren't trained in the procedure will sometimes advise against it. If you find someone who is qualified they will give you the true story as to whether or not it is advisable. The main issue will be how close the DCIS is to your nipple. Let us know if you have any questions. Good luck!
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So how many of you had Alloderm? I didn't and asked my PS about it today at my 3 month post op. He said that he has only had to use it a few times in his 20 years of practice. He says he finds that most of the time he doesn't need it if he takes the time to get the TEs placed right and there is sufficient muscle and skin. Just wondering as I am very happy with my results.
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I have alloderm. They explained it when I first went in for consultation, and I thought it sounded logical to me. After the surgery they did mention I had "thin skin" so I guess it's good that he uses it? I actually don't mind the way the TE's look on me and can wear a tank top with no bra and they look surprisingly good. And I have had a pretty good IMF from the get go. Don't know if any of this is due to the alloderm or not? Either way, I'm happy so far! I suppose we'll see after the exchange if I still feel the same!
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What's an IMF Susan? (can only think of international monetary fund) i go next week for my NS BMX and my PS said he's using alloderm, and a pretty sizable amount of it. over the years i've gone from C cup to D cup to B cup many times (pregnancies and nursing) and have super sag going- it was my impression that this is why he wanted to use the alloderm....but not sure.
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