Nipple Sparing Mastectomy with immediate reconstruction
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You know, as long as I've been posting on this thread I think I only just realized that TNLady (who started the thread) listed some great questions at the top to ask your surgeons for those that haven't had their surgery scheduled yet.
nmi- I believe that insurance has to cover reconstruction and any revisions necessary no matter how long it's been since your original surgery. They also have to cover implant replacements for women who have those.
KellyMaryland- Just wanted to say welcome, too. I think it's great your educating yourself as much as possible before your surgery. So glad you will be able to have NSM. I know for a lot of us it has made us feel a lot less disfigured being able to keep your nipples. I am kind of surprised your surgeon won't use your biopsy incision. My surgeons used the same incision for my NSM, when they placed the TE's and for my exchange surgery with no harm to the nipples.
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Wish I had found this site and thread before my surgery! oh well.
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Thanks so much for the welcome. I'm meeting with the breast surgeon that my PS prefers to work with next week and I'm going to ask again about the decision to not use the same incision. (rhyme!) One thing the PS did say was that he didn't feel that the biopsy incision was well done and thought he might be able to fix it during one of the surgeries, though I'm sure that it wasn't only for cosmetic reasons. Am waiting on my MRI results to see if in fact this will be a prophylactic mastectomy. Fingers crossed. Thanks again, Kelly
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nmi, So sorry to hear about your NSM. I think that statistically odds are in our favor to save our nipples but of course, some will die. I personally interviewed 3 surgeons in my area and did A LOT of researcg on them before I chose. 2 were general and 1 was a breast cancer speicalist. I went with the specialist and I would recommend him to anyone. As much as I loved the disposition of one of the general surgeon's I met, I went with the one who had the most skill. My mother in law had a cyst surgically removed by that general surgeon I had liked and her scar looks worse than any of my scars! There are just so many variables as to why some live and some die.
The incision decision (hey, that rhymes!) can be found on the internet as somewhat of a debate! My bs and ps who have done NSMs together for the past years, like to go through the fold. They felt that it does not compromise the blood flow and has a good aesthetic outcome. I had asked my bs about what my other options are if A: the nipple had to come off during surgery or B: it ended up dying. We chatted about only taking the nipple and leaving the areola. With that option, you never would need to get that line all the way across your chest or like that "hamburger bun" type cut. It is worth bringing it up to your docs!!! My bs actually has never ever done an areola sparing but he was willing to do it for me if the nipple did have to go. I think we need to push these ideas and keep asking our bs questions. The squeaky wheel gets the grease! I met another woman on here who had the same bs as I and she had mentioned to him that she knew me. He couldn't say much to her due to patient/doc confidentiality, but she told me that he respected that I always did my homework and was aware of what my options were. The docs that shut you down are the ones to run away from. That's how I feel, because a good surgeon can be creative and is always wanting to further his skills. I really believe that!
So...some good news...as some of you may know, I print invitations on my 1929 letterpress that gets hand cranked. It weighs 2700 lbs and it takes some muscle to get that puppy printing. I just did 150 business cards 2/color (300 cranks) and had no pain, no discomfort and my foobs didn't move!
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Was anyone asked to go on a very restricted diet the day before having a DIEP flap? My doctor seems to want me to eat a non-constipating, soft food diet but then mentions all food and liquid should be transparent. I'm also going to be giving myself a fun enema tonight, so I wonder how necessary a very restricted diet is?
I get that she doesn't want me to be constipated (and neither do I) and I'm not that hungry (kind of upset and frightened) but how necessary is it to restrict your diet to mostly liquids the day before surgery?
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Hi ladies...I am a month post op BMX saving my nipples with immediate reconstructive surgery and have TE's in. I am terribly uncomfortable and at times feel as if I will feel like this forever. I know these thoughts are nonsense, since I do feel better since my surgery...but the transition is the most difficult ever in my life. The stiffness, limited mobility and constant sensitivity are sometimes more than I can stand. I was wondering if anyone had small tips for day to day activities that will help to get through this time a little easier.
Thanks,
Lizy
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Lizy, unfortunately, the discomfort with TE's just goes with the territory! I had a hard time taking a deep breath. They were very uncomfortable. They are as hard as rocks! Do you have an exchange surgery date? I did find that stretching my arms slowly above my head (when I was told I could do so) seemed to help. There is light at the end of the tunnel!! I also found that less cc's in a fill up helped with the stretching rather than more. Placing my arms against a wall and gently pushing also helped. Hang in there, it doesn't last forever!
I was able to have one NSM. But not the other side. (Cancer was too close) The side that was saved, my scar goes around the top of my nipple and across towards my underarm. Of course, the cancer side is just a straight line, but smaller. My PS used the same incision to put in my implants. He didn't even have to go as big as the original incisions. I'm glad he didn't go in through my fold. Lot less healing time. I'm really happy with how things turned out.
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Hello all-
I have been reading this board for several weeks now . Kate seemed to have found me wandering aimlessly in search of info and pics and directed me here. I literally started at the top of this thread and read thru straight to the end trying to process all the info and navigate this whole experience...(reading it like that makes me feel as though I know many of you now!). I am really so grateful for your postings (and pictures)---it has helped prepare me for what to expect.
Fire-dancer: seems like you and I will be "NSM buddies" (I think we crossed paths on the LCIS thread a few weeks back-- our diagnosis is similar-LCIS, BRCA negative)... I am scheduled for a prophylactic NSM on December 14th. My story is a bit different than most I have read, but my decision/decision process might be of interest to someone (and I am certain I am opening myself to criticism but I do represent one end of the continuum) so here goes...(pardon the length)
I was diagnosed with LCIS 3 years ago via surgical biopsy after calcifications found on Mammo/ core biopsy. 18 mos later, more calcifications on mammo, same area--straight to surgical biopsy this time (the whole human vodoo doll/core biopsy gig---not for me)...again more LCIS found.
Next year Mammo fine, Radiologist suggests MRI in which I light up like a Christmas tree on both sides (Note ladies--I was 12 days late for my period and was never told this was the very worst time to do an MRI---hormonal surges matter!). Anyway back for 3rd surgical biopsy (if I had a frequent flyer biopsy card I am pretty sure the next one would be free!). Since I know it is likely a core biopsy would find LCIS and require surgical biopsy, my BS and I have agreed to just cut to the chase, go straight to surgery.
So in just under 4 years I have had 3 surgical biopsies (lumpectomies) on my right side. I am a very small A cup/dense breasts. After much discussion with my significant other, I have opted for the prophylactic nipple and skin sparing mastectomy. I realize to most (including initial response of my PS and BS), this is aggressive. I do not have BRCA gene and no real family history to speak of. HOWEVER...it is really a quality of life decision for me. As articulated by many on these boards, the stress of waiting and the 6 month interval screening is truly debilitating (plus, with all the high tech tools and super vigiliant survelliance, the radiologist seems to always see something that requires me to have a surgical biopsy).
I live/work in NYC, have a very high stress job, a son in his freshman year at college and one who just entered HS. I literally feel my blood run cold when I get called back for "more pictures" and have to sit in the paper vest in the radiologist's office in a holding area they have designated for women who need "additional imaging". My BS, who is known to be one of the best in the country, has told me..."look, there is only a 20% chance you will get cancer. Unless of course you are in that 20...then its 100%" (I seriously love this guy). He also said "honestly, something does seem to be brewing in there". I asked him how likely we would be seeing each other in a surgery situation again, and he said "quite likely".
My breasts are so not on my radar in terms of how I define myself--however I think about them obsessively as I wait for the proverbial other shoe to drop. My BS suggested NSM if mastectomy was something I really wanted to consider.
I met with a highly recommended PS (from a different hospital---BS and PS have agreed to work together, so I feel like I was able to create my own surgical "A team") who also indicated I am a great candidate for the procedure and since I am so small busted (and apparently already lopsided---I really didn't even notice until he pointed it out)...he anticipates the final results could be cosmetically be better than what I have now. I am well aware you lose all sensation, but again....my breasts just aren't a star player in my sex life.
Having read all the stories on this board, I am not naive in terms of being prepared for a very, very challenging year. I still feel that one horrible year vs. a lifetime of anxiety every 6 mos is a trade I am willing to make. My BS said the one thing he wanted to know was "if I was prepared to come out of surgery to find out there was really nothing there at all". My response was that I would be devastated if there WAS something there; that after all the biopsies and tests that something had been lurking. I want him to find nothing, and still terrified at the possibility that he will. Most people just say "wait and see" or "you are being monitored so closely, if something comes up it will be caught so early". Here's the deal...I don't want it caught early. I don't want it caught at all...I don't want chemo or radiation or even tamoxifen. I don't want breast cancer if I can avoid it. My Drs say this operation will cut my chances of getting BC by 95%. I like that number a whole lot better than the "80/20 or 100 % if you are the 20%". I recognize that I am at the far end of the prophylactic continuum in terms of a preventative measure but I have to be around for those boys of mine for a very long time. I literally lose days of my life every 6 mos filled with anxiety from the time of mammo to final results, I do not think straight for weeks. Sometimes I feel like the stress of worrying about cancer is what will actually cause cancer!
Last time I was waiting for the surgeon's call during my son's HS graduation, on the edge of my seat obsessing with worry... I literally had to keep reminding myself to stay in the moment that my son had worked so hard for-telling myself that I will never have that day back again. Since he was a baby, I pictured the day he would graduate, cap and gown... and here 18 years later, I was watching my blackberry, stomach in knots. It was sobering to realize how this seeps into your life in such a toxic way. If in 3-5-7 years from now they did find something, I would only be filled with regret I did not take action to prevent it in 2010.
Anyway...that's my (long) story, so December 14th, I am joining the club. I will document the journey with words and photos and do my part to contribute to what has been an extraordinarily helpful community.
Ilene
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I totally understand your decision Ilene! You articulated your thought process beautifully. I can imagine that you do get some negative feedback from those close to you. I am having a NSM BMX in two weeks. I was a candidate for just a lumpectomy..and I get some well meaning people that pester me about taking such an "extreme" route.... I feel like you do about the breasts... it's not like they are a big part of what defines me or my sex life. I've told people ... "it's not like they are taking my clitoris! .. now THAT would be extreme!"
Good luck with your surgery... I will be two weeks ahead of you... we can recover together.
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Too funny...and glad to have a partner on this wild journey...!
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Takeadeepbreath- Welcome and thanks for sharing your process with all. I do think that as awareness grows, our options will be better. I applaud you for being pro-active. Your boys are going to be very lucky to have you around AND without so much of the stress that goes with cancer. You are right when you bring up the question: what's worse, the cancer itself or the stress about the cancer. I got a lot of quizzical looks when people found out I did not go the lumpectomy route. I think that it was the best decision for me based on how I know I would feel knowing that the future involved constant worry/monitoring. I don't regret my decision now that I am a couple of months post exchange. I can't even say it was a very hard year, but a hard few months. Life is pretty much back to normal, now. I can definitely say it was not as bad as I'd thought! Good luck to you in all of the steps in your process.
NMI - Welcome and so sorry to hear about your losing the nipple. I think as women demand higher levels of care, doctors will have to become more forthcoming about our options...not SOME of the options, but ALL of the options. There seems to be a huge lack of a collective pool of BC information. We all piece together our little experiences. I do hope this will change in the near future. Your story reminds me that we need some kind of governing board for BC doctors. I find that as word spreads, ignorance will disappear and women will receive better care. Heck! I didn't know about NSM until my Saint of a BS told me about it. I really hope more women seek out all of the options available...but you don't know what they don't tell you!
Thanks, Hurleygirly, for highlighting your quest for information. I do think that the doctors will have to keep on their toes more as our sisters with BC in the future go about inquiring and demanding the best care possible at all times.
VMudrow - Regarding Hamburger Bun scars: I ended up with "Half-Hamburger Bun scars" or "Sideways Question-Mark" scars. The incision starts halfway across the breast and curves around the nipple. I asked for the scar to be hidden beneath the breast-fold but was told that because I was getting NSM, that they'd have to scrape (sorry) very thoroughly behind the nipple itself and that that kind of incision would make that easier. Can anyone chime in if they had that explanation given to them as well? Hence, I too hope the scars will fade. Scar removal has become my obsession of late, as many know from my scar thread. I too hope they will fade as that is the primary thing (besides ripples) that reminds me they're foobs.
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Ilene, I'm also dx with LCIS. But because of the pleomorphic variety of it as well as some other benign but funky stuff going on in my breasts, my risk has been put at 40% of invasive bc for the rest of my life. I'm only 42 so that seems like a lot of time spent being imaged and biopsied and stressing. And yet, though I've always felt that PBM was the right path for me, accepting what other people have to say about it has been very difficult for me. In the end it was my fabulous primary care doctor who told me, "Being biopsied so many times is not insignificant. Besides psychological stress, there will always be the possibility of doctor error, infection, etc." Anyway, I got your back in case an ideological fight breaks out....though it seems that this thread is exceptionally open minded, so breathe easy. I'll be sending happy, healing vibes to you for your upcoming surgery.
Kelly
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Ilene - so well put. I understand and agree with your decision totally. hugs, Valerie
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you gals are great...I feel like it is cathartic just to write out my thought process...have not even been able to really articulate this to my closest friends. So grateful for the support.
Ilene
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Ilene, agreed - how can you articulate something so out of the ordinary to people who have not experienced it. I am so grateful I had BC in 2010: with the internet and the modern miracle known as NSM! I cannot imagine what it must have been like even 10 years ago. I can count on 1 hand the girlfriends I can feel comfortable talking about this with. Here, fortunately, I know that for the most part, we are all speaking the same language.
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Ilene, I hear you loud and clear! I do recall crossing paths on the LCIS boards a bit back, I'm glad we both found our way over here - I am coming to realize over the past few months that I have known about the LCIS/ADH, and trying to explain to friends/family, most people get my decsision, thankfully. But there are times when I tried to explain this to someone and it can be exhausting. I think I was trying too hard to explain my rationale for getting PBM, when really, WHY? Sure, I might sound extreme, but like Kelly, I feel that since I am 36 yrs old, going thru biopsy-galore and the tamoxifen-route for the next 40, (or god-willing more!) years would break my spirit. I am feeling like I "own" my decsion now, and I will gladly talk about it, and in doing so, some of my friends, whom are all in their 30's have become more vigilant in their monitoring. I went through my 20's with my mom having BC and I wasn't allowed to tell ANYONE, it was the worst secret I ever kept, it completely drained me and I think after having gone thru that, I have learned I will do things a bit different.
These boards have become important in that factor, I don't have an outlet of people who have gone thru this, (in fact I know no one, besides my mom & aunt, whom obviously the discussion is not a popular one!) I have a super husband and great friends, but really, without the advice and input from these boards I would probably feel lot more alone about my decision...thanks to all of you for your support!
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Lizy: I'm about 5 weeks out now. Have you gotten all drains out and have you started stretching? That would be my main suggestion... just try to stretch the muscles so you'll feel less tight and uncomfortable. Some of us have a lot more difficulty with healing and pain. Sometimes, the PS fills too much on visits and that sends some people though the roof with pain. If it's really bad, I would suggest telling your BS and PS so they can make sure everything looks and feels ok with the TE... maybe it's in an awkward position that can be rectified or something. Mine were very uncomfortable until they started expanding, and I've heard other women say the same thing, so maybe there's not enough fluid in them yet? I wish I had more tips... just do your best and remember it won't last forever. I know it gets better after exchange. Hope you get some relief from them!0
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Hi happymom8285,
I do not have an exchange date yet, but I know it will be sometime in January. I am not familiar with all the terms yet. I am told by my PS that the implants will be put in through the same inscision as where the mastectome and the expanders were done. What do you mean by folds? They do feel like rocks, and the stiffness is unbearable at times. I find that I am worse off in the evenings, I am not sure why that is. I am glad to hear you say there is a light at the end of the tunnel. My partner Adam reminds me of that all the time, but he is my personal cheerleader, lol. I know he is trying to keep me high spirited and I will admit some days are better than others, but there are many times I feel like this is a life sentence and do not see the light. I decided to come to this site with the hope of finding women like myself...going through or already having been in this this situtation or similar...feeling the same things that I am feeling. Though I have a great network of family and friends, I don't know if they really understand this experience.
Lizy
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Hi cc4npg,
I do have the drains out. MY PS removed them into my second week of post op. That was some bit of relief, but I most be honest I feel like I am wearing a full metal vest all the time. I am better than I was weeks ago, but there is no consistant relief. I find that when I can't take the stiffness anymore I take a hot shower and that provides some temporary relief. As I said to happymom, I feel worse in the evenings. I am glad you mentioned that about the filling, as I went for my first expansion last week and my PS said he will do a larger fill next time. I do feel air pockets and that is really strange so I will keep that in mind. You say you are 5 weeks post op? How are you feeling now?
Lizy
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Lyvlife,
Hang in there with the TEs. They are hard because they have to push muscle out to make room for the implant. It stinks while they're in, but honestly, you will be so relieved once the exchange is done. Have you gone to the thread called Exchange City?
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Thank you Whitedove! I knew that the muscles were sore because of the surgery but did not know why. I have not been to Exchange City, but I will look into it. Have a great day!
Lizy
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Lyvlife- I absolutely hated the TE's! I was SO uncomfortable until someone on here told me that their PS had prescribed a muscle relaxant called Flexeril. My PS agreed to let me try it and....what a difference. Those TE's were still turtle shells but I felt a lot less uncomfortable. Most of the soreness comes because your pectoral muscle has been relocated during MX and is now being stretched so it can cover your implant eventually. The muscle relaxant helps loosen everything up. Maybe your PS would prescribe it to see if it helps for you.
hurleygirly- It makes sense that they can still do the incision under the fold of the breast, and have it less noticeable, and still remove the nipples if necessary.
whitedove- As far as the incision through the center of the breast- it is easier..for the surgeon that is. But that's not a reason to do it and leave a much more noticeable scar than one under the breasts. My BS told me that doing a NSM with the incision under the fold takes twice as long as a traditional surgery but with equal success and better aesthetics. So I would say it's easier for the BS but not so much for the patient.
takeadeepbreath- Welcome! Glad you made it over! Just wanted to say that like everyone else I can definitely understand your reasons for choosing MX because it's why I chose it as well. Before my DX I admit I was one of those women who never understood why anyone would choose to remove their breasts if they didn't have to but your perspective totally changes when you're in the same situation. We shouldn't have to justify our decisions to anyone, though. After choosing NSM over lumpectomy/radiation my final pathology report came back with multiple areas of DCIS that had never been detected by 3 mammograms, 3 ultrasounds and 2 MRI's. Had I chosen lumpectomy who knows how long the cancer would have been in there before finally being detected. I always say follow your gut and you'll make the right decision for you- and you have.
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Lizy: I'm feeling actually good. I remember my TE's feeling like a full metal jacket too, painful, uncomfortable, and much worse at night. I don't know what made mine feel better. I pushed on them, from all sides, trying to figure out what was hurting at one point. I pressed on them too... top, sides, trying to figure out what was wrong. I only did that after I felt I had the courage to "touch" them though! That was freaky. My PS only fills 50 ml at each fill. It isn't much, but I don't want pain either. I'm at 125 ml right now, with weekly fills. I remember my TE's felt like they were "catching" on something... like a sharp pain in one spot all of a sudden. That's gone away too. I've heard a lot of women say that their TE's were uncomfortable the whole time though, and after exchange it was a big "AHHHHHHH". I hope yours straighten out for you! I'd hate to think you have to endure this the whole time... you've been through enough!0
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Hi everyone!
I had my DIEP procedure done on Oct 13. That puts me about 5 weeks out now. I had a DMX with immediate reconstruction, a NSM and they used my belly fat for my new breasts.
One hell of a surgery I tell ya! I was out for 11 hours and in the hospital for one week. I cant say the pain was as horrible as I thought it would be. I'd lie if I said it wasn't painful but I would take that over labor pains any day.
They had me sitting up in a chair the next day and walking on the following day. I am doing great now. I still tire out easily, I am still taking my pain meds at night time and then when I wake up in the morning. I noticed if I try to skip my morning dose I have a lousy day and don't accomplish much. When I take the pain meds I am able to do a bit of shopping, go to my appointments and I feel more human as long as I pace myself. I am hoping I don't have to take them for much longer.
My NSM and DIEP was flawless, the nipples look great and looking at me you'd never guess they aren't the "real" breasts God gave me. In fact I am starting to like them better than my previous breasts and the tummy tuck is good too however I still cant wear anything but sweats yet. I tried to wear pants with a button and zipper the other day "OUCH!!!"
I totally think it was worth it for me to have this done and once my chemo and herceptin treatments are over with and I am healed I will be so thankful I wont have more surgery hanging over my head.
Good luck to everyone else in making up your minds on what you choose to do. I am totally happy with my choice
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Hi girls, does anybody have surgery around Nov 25th?
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There may be a November 2010 Mastectomy thread that started. Might want to check. If not, someone should start one. It's very helpful! You're welcome to pop in to the October 2010 Mastectomy thread. We'd love to have you there too!
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Nora - ((((Bravo!))))
Congratulations on your good experience of surgery, on keeping your nips and having such a satisfying outcome with your breasts. Hope your recovery goes very well.
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Thanks whitedove!
I was a bit nervous. My plastic surgeon said there wasnt much data on someone like me and the NSM. You see, just a year ago I had a breast reduction so they had already been altered. My PS said I stood a greater chance of them not taking than someone who was "virgin" so to speak. I had told her if she wasnt very optimistic I was ok with just not saving them. She told me to go ahead and go for the NSM and if it didnt take we'd take it as it came. Lucky for me it worked and I am happy.
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nora_az- So glad to hear that all went well with your surgery and that your PS was so willing to try to save your nipples. Hope your recovery goes just as smoothly and that your chemo treatments are soon over. The fatigue can take awhile to shake, even without chemo, so it sounds like you're doing great all things considered. My doctor told me for every hour under anesthesia it takes your body about a month to recover. I think I commented on one of your other posts but just wanted to say I'm in AZ as well (Mesa)!
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I'm back!
Feeling a bit exhausted and shaken but at least the lymph node was clear. Won't kknow for a week or so whetherI get to keep my nipple based on path report. Husband is dealing with drains. I came home last night (surgery was Thursday) and somehow today I feel very sad and depressed and shaky - like it's going to be a long recovery even tho I am home and def. in such better shape than after the surgery (obviously!).
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