Nipple Sparing Mastectomy with immediate reconstruction
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Anyone who is a candidate for NS mx should really consider it. It really helps mentally.
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ladies-I have been curious about something. Do you think having a NSM changes how much the Dr can do with the breast mound he creates? I noticed with my friend who had a regular MX that her Dr did something with her extra skin and made all kind of incisions everywhere and moved them closer together. It seemed with me my Dr kind of wanted to keep everything in place and symmetrical as to where the nipple was. He couldn't really move them closer together and he didn't do anything with the pulling the skin tighter. It seems like to me with the NSM he created a pocket basically with what I already had and then slipped in the implant. Of course it's not all that simple, but I've wondered in some ways as great as the NSM looks if the Dr also has to do things differently to keep the nipples in an ideal position without disturbing them.
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cc4npg: I totally agree. In my case, I had a double chance of losing the nipple - first I had to "pass" the path report (done), then the nipple itself had to survive the trauma of NSM (almost there, I think). I tried to prepare myself for losing it later, and just felt glad to have the chance to keep it. Made a huge difference for me, as did waking up with two breasts from DIEP.0
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sweetie- There may be something to that but the way my PS explained it to me was- How close she could move my implants was determined by where my pec muscle ended as the implant has to go beneath that muscle. She said every anatomy is different as to where that pec muscle stops and starts on the chest. She said if she were to move it closer, with no muscle to cover it, the implant would protrude through the skin and look quite odd. I do wonder about the loose skin, though. whitedove told me, though, that her PS could do something about that afterwards. I'll see if she can post what her doctor said.
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Kate33-thanks for explaining that. You know how I wish I could have had mine closer together. My Dr did say it had to do with where my pec muscles end. I just find it so odd because I'm so tall and excerise a lot so you'd think I'd have big enough pecs, but I guess not. I wonder about the loose skin, because if it could be pulled up maybe it would eliminate the ripples too?
Kitchenwitch-glad your doing well. I think if your nipples are still doing fine there will be no problem. I'm glad your happy with the outcome. Did you ever post pics?
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Sweetie: Dr. D told me that if I lost the nipple, I'd have less skin to strecth and might not have been able to expand as far - thats another plus for nipple sparing if you don't start with alot of material to begin with.
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Heebie-your right. I think being able to save the nipples gives you much more of the look you already had. I think your going to be very happy with how you end up. If he already got you to 400cc in TE your going to be a perfect size for your frame. Dr. D really does an amazing job. I feel he is one of the best and I would only go to him for anything I need done.
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Hi Everyone. I am BRCA! Positive and had my first horrible experience today with a Plastic Surgeon! The MD took one look at me and said, you look like a D cup, I cannot do a Skin Sparring Nipple Sparing Mastectomy on you! I do not have a cancer diagnosis, and this is hard enought for me, this is the only surgery that I can handle at this point. I already had the Hysterectomy 2 months ago. I am a Kaiser patient and have already started protesting
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Rnjules- Just wanted to let you know there is a doctor in the Santa Monica/Los Angeles area named Dr. Jay Arthur who is doing NSM on D cup women. You can find information on him at plasticsurgery.org/md/DRJENSEN.html. I'm not sure how far he is from where you are but it might be worth the trip. I traveled 4 hours round trip for my BS and am so glad I did.
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i'm home from the hospital! the surgery seemed to go well and my BS said the nips looked great! I now hold my breath that they stay that way. I'll have to read back a bit to remind me of how the nipple-waiting went soon, can't now, am still "off" due to the meds and focusing on the computer is tough. My incsision is underneath, and I feel beyond tight ! I've felt some wierd sensations, assuming it's confused nerves? but I have no idea. The pain is still tough, but hoping to move to tylenol & muscle relaxants soon (maybe the wknd?). The percoset making me woozy, and forget about the morphine drip, I couldn't see straight, so they ended that pretty fast. I was like just jelly everywhere.
I am relieved to have gone through this and to look down and still pretty much see me, albeit concave, but it's still me! I haven't begun to bruise too much, I'm sure that;ll be interesing, but till then yay for the nipples!!!
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fire-dancer - glad to hear you are doing ok!! You are right YAY for the nipples!
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Ugh, girls, I'm crest-fallen. I had my pre-op appointment with my surgeon today (surgery is in a week) to go over what I thought we had agreed on. As he was reviewing my chart, he said "so we're doing skin-sparing..."
"Skin and nipple sparing," I corrected him.
He looked at me like I had three heads and said, "Why would you want to do that?"
When I told him it was for cosmetic/psychological reasons, he told me that I've had so much DCIS he would try it, but he wasn't optimistic and he could very well have to take the nipple. (He explained he would do what others here had done -- an initial test of tissue while I'm still under, then a later more thorough testing of it to check for DCIS.)
THEN, I asked him about the sensory nerve, and he didn't seem to know what I was talking about! He said to get all the breast tissue from the nipple, the nerves would have to be damaged and I would likely never have nipple sensation again.
Okay, I guess I can live without nipple sensation, the main reason I want to keep it is (like I told him) cosmetic and psychological reasons, but boy it sucks the way he was so flat-out definite that I would never regain sensation. I suspect he was saying that to try to discourage me from wanting to do nipple-sparing. Mind you, he does NSM's and is good at them, so it's not like he's inexperienced at them -- I guess he doesn't think I'm a good candidate! Well, I think I AM, unless and until biopsy proves otherwise!!!
Ugh, I'm still pretty discouraged and dreading this surgery all the more.
Oh, and my plastic surgeon will NOT be doing an initial fat graft at the time of mastectomy (after several flip-flops), so I will have a saggy, sunken, probably nipple-less boob area for months (and possibly for well over a year, if I accidentally-on-purpose get pregnant before reconstruction is done). *sigh* THIS. SUCKS.
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Whoa, fire-dancer, I took so long to type my post that yours wasn't there yet! WOOHOO, congrats on having it over with and for having it go so well!!
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Welcome home, fire-dancer! I'm glad you have a good feeling about your nipples! Yay for them!
Crunchypoodlemama, any chance you can find a surgeon who is experienced with nipple-sparing and reconnects the nerve?? That said, I;ll tell you that my surgeon is super experienced with both those things and I don't have much sensation. My boob feels like a weird numb baseball. The feel of it (to someone else) is good. My nipple... i don't know. just too early to tell, I guess. But I won't be surprised if the sensation never really is all that earth-shattering. But it's good if you can go into the procedure with utter confidence in your team. By the way, my DCIS was VERY extensive. I was told I might have to have radiation because of it, I was told I might lose the nipple because of whatever the path report said. I was lucky - they got it all and the nipple seems to be holding its own. I wish your doctor could talk to my doctors!
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Kitchenwitch, this surgeon is pretty much the best one who's covered by my insurance (I met with the other two last year and I frankly don't trust them at all to even do a mastectomy, let alone a NSM). I may call some other surgeons in the area and just see what they say about it. Of course, at this point, it's too late to switch... this darn surgery has already been rescheduled twice, the year is running out (I need to have this done before the end of the year for insurance purposes), my parents are planning their trip, etc. *sighhhh*
If your surgeon reconnected the nerve, then I'm sure it will regenerate just fine... I wouldn't expect you to have sensation this soon.
So happy for you that it's worked out so beautifully for you!! I wish my doctor could talk to yours, too!!
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fire-dancer- Very happy that things went so well and that you're home. Just remember to be gentle with yourself for several weeks and keep taking those pain meds for as long as you need them. Sending you gentle (((hugs))).
CrunchyPoodleMama- Aww, I'm sorry you're having such a hard time and your surgeon's not making it any easier. This is a scary time as it is and you need to have complete confidence in your surgeon. All you can do at this point is stress over and over as many times as possible to your surgeon that it is very important to you to save your nipples. (Even if you have to harangue him all the way down the hall into the operating room.) My final path report also showed multiple areas of DCIS but did not prevent my BS from doing NSM. As long as the cancer is not close to the nipple it should have no bearing on it. I really hope it all works out for you. We are here for you no matter what!
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Crunchypoodlemama, I'm sorry. It just sucks having to work around an insurance schedule and have doctors your insurance company approves. I went out of network and I'm going to get slammed with a huge bill any day now. At least he knows how to do NSM. Maybe fight for it just on cosmetic/psych grounds, and you'll at least have your own nipplle if the path report is clear. Wishing the best for you!0
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Fire dance, congrats girl, you did it! Take your time to recover and please drink a lot of water and don't forget Vit C.
Crunchypoodlemama, my nipples are numb and I hate it and I will never have sensation in them, BUT it is so comforting to have them and do not go through reconstruction. Maybe you should insist on saving the nipples? My Dr didn't want to keep my nipples ether and even sent me for MRI the night before surgery, I cried in her office trying to explain that it will be very difficult on me emotionally to get rid of healthy nipples. She eventually give in....I guess I am trying to tell you to be more tough with Dr and do all you can to convince him to save your nipples.
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Thank you, girls... what would I do without you??! Kate, I had to laugh at your idea to harangue him all the way to the operating room... girl, we think alike, 'cuz I was already planning on doing that! heehee
BRCA, I'm sorry about the sensation thing... yeah, I'm not looking forward to that... but I'm so glad you were able to keep yours!
When my husband was on his way home from work yesterday, I called him bawling about what the doctor had said, sobbing, "and I just can't live without a real nipple!!!"
Without missing a beat, he exclaimed, "You can have mine!! We'll have the world's first nipple transplant surgery!!" LOL - if nothing else, I'm glad I have a husband who is loving me through all this and keeps me laughing!
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Crunchypoodlemama, your husband sounds like the best! What a sweetheart! I agree with BRCA1. Insist (not the easiest thing to do, I know) that he do NSM, especially because he knows how to do it. If the path report says you can't keep it, that's another thing entirely. I went into my NSM knowing I might lose it later because of that. But why not at least try to keep it? Especially if the thought of losing it makes you sob? We have to be sooo tough! We're all tough about losing our breasts and going through rebuilds... I wish you all the best in making your doctor understand how important this is for you. My BS did not do any slides or preliminary testing during the surgery. He said something I can't remember, exactly, about inconclusive results. He preferred to do the surgery, get the path report after and go from there.
Crossing my fingers for you and your nipple.
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Firredancer-Congrats on coming through surgery well. Get rest and fluids. Sounds like everything went well and your doing great, so glad to hear that. You will be sore and tight for a while, that's all very normal. Your body has been through a lot. I was really tight for a while but as the days and weeks go by things get better and better.
CrunchyPoodleMama-I have said it before it and will say it again, you have to be your own advocate. The Dr's do tend to be discouraging at times and I don't know why. Maybe they don't want to give us too much hope in case things don't go right. It sounds like you are a candidate. I had IDC on one breast and on the other breast I DCIS and LCIS in several areas and was still able to keep my nipple. It is true you may not have sensation in your nipples although some women do, but you are right just having been able to keep the nipples is a big boost physiologically and cosmetically. To me it made such a big difference in my own mind and that's what counts. We are all routing for you. Don't give up hope and please keep PUSHING for what YOU want. If it is possible and there is not a medical reason to remove them then as Kitchenwitch put it why not at least try.
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Rnjules: You should really be able to find a surgeon who will do nipple sparing... keep looking! Try not to get depressed on it yet, you just haven't found the right person yet!!
CrunchyPoodleMama: My first suggestion... get another opinion if possible. I knew nothing about the sensory nerve at the time of my mx. I do have feeling in one nipple, but not the other. Right now, you're concentrating on the worst case of everything (I know, I did too). But the fact is that you have just as much chance of keeping your nipples as many of us here. I was also told if any cancer cells were found beneath the nipples, they'd have to come off. As for the way the breasts will look after surgery, yes, they'll look sunken some... different... kinda alien. It won't last forever though. Are you having tissue expanders? If so, they may even put a fair amount of saline in during surgery, so you may be very nicely surprised. If not, then just keep in mind the initial look has nothing to do with the final outcome!! I think it would be really mentally good for you to try to look at it like this: "I will probably wake up from surgery with more than a decent chance of having my nipples, based on what other people have said who have had dcis like me. I will probably look different, but not near as bad as I think, based on what others here have said. I may not have a lot of feeling at first, but to my surprise I may have some feeling in the nipple, but doctors can't tell me that I'll never have feeling again because nerves can and do come back to some extent... it just takes time."
That being said, have you looked at pictures on the forum of others who've had this type of surgery? It will help prepare you mentally. And truly, no doc can tell you you'll "never" regain any feeling! That's just plain silly!! Nerves do grow back many times, but they grow very slowly... I stress very very slowly. I thought the numb feeling I had after surgery was something I'd never adjust to, but some of the feeling has come back, and the numbness has changed some. I don't know if I've gotten used to it or maybe it's still numb but not as numb. It's not near as bad as our minds lead us to believe.
I'm so sorry about the loss of your babies. You've been through enough, for sure. My thought on pregnancy is this... if you do wind up pregnant, either accidental or on purpose, and that puts off the reconstruction by a year, that wouldn't be my main area of focus. I would be much more happy to hear you had a successful pregnancy, and had to live with flat boobs, than to hear you had successful reconstruction but a failed pregnancy again. I have a cousin who was never able to even achieve pregnancy. She's 40 now and over the last couple of months has had 5, yes FIVE, heart attacks. Your body has proven it can achieve pregnancy, and I don't know all the details about what may have happened, but I gotta tell you I have faith and am praying you'll be able to have a child. Hang in there!
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Thank you, girls; THANK YOU!!!! Ahhh, you all are the best!!! cc4, had your surgeon reattached the nerve in the nipple where you don't have sensation? Hopefully it will return eventually. One interesting thing about the Brava system (the suction cup thingies that some of us are using for reconstruction) is that it seems to restore sensation even for some women who haven't had breast sensation in years. Somehow the suction action stimulates the nerves to regenerate, or something? I wonder if that might be something useful even for women who have standard types of reconstruction like implants... just a thought.
I've been rehearsing in my head what I'm going to say to the surgeon Wednesday morning, LOL. I'm going to tell him, "Unless there is definitely, without a doubt, DCIS in the nipple, I want you to save the nipple. If there's any question at all, or if there's only ADH, do NOT take the nipple!!" cc4, I like your suggested thinking as I go into the surgery... you're absolutely right... thank you again!!
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Crunchypoodlemama, I was going to suggest a script in advance! Why not ask him what the downside is, to keeping the nipple and removing later if that's what the pathology report dictates? Does he WANT to remove something that doesn't need removing? (wide-eyed shrug, how could that possibly be the case?)0
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Hi BRCA1, me too! I am really trying to network with other people in my situation, you are the first who is just like me! Did you have to have tissue expanders? I would love to hear about your surgery
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When I had my initial dx (60 x months ago) It was thought that I had 3 x tumours in my right breast.Multi focal, invasive ardino carcinoma. I was offered the skin sparing option.I said no and that I would simply prefer have a profolactic left mastectomy later. It turned out to be the best decision I have probably ever made in my life.I had the (first) mastectomy on the Tuesday. My surgeon rang me (still in hospital) on the Saturday evening. He was so excited he said he had to call me with the results immediately. In all the info, he said "I can't believe how the patholigist even found this...but there were 2 x more tumours, and one was only 2 mm but it was malignant and it was in the the tip of your nipple!!" I was 43 x years old , I asked my surgeon how long would it have taken for us to realise something was there (if we hadn't done the mastectomy). he assumed about 8 x months.I asked him how long would it have been before it would have been too late to do too much about it. He said 3 - 4 months. So that's my experience for what it's worth.
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Thanks Aussie Deb...a fellow Aussie assume? I am currently trying to decide what to do. 2nd diagnosis for me and I have had enough...not hanging around for number 3. Saw the breast surgeon last week but the procedure for me will be with tissue expanders. Appt with PS in a few weeks. I was starting to waver until I read your post...thankyou.
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Thanks for all the homecoming support, gals!
I just came back from my 1week post-op check-up. My PS said everything looks great! He took out 2 of 4 drains (yippee!!!) and gave me these surgical-grade mesh squares to place on my nipples to keep them moist, then a little gauze. No more surgical bra. He did notice that one nip is a bit more red than "normal" of course I panicked, but he said to relax and just keep an eye on it, only to worry if it looks infected or I get fever, etc...but overall, he was very pleased with me one week out. I'm a bit nervous about the redness, and will just do what he told me and be vigilant. Hopefully this shall pass. I also hope to lose the last 2 drains before christmas...I feel like a science project with all these tubes coming out of me
Glad to be off the percoset, just advil and the occasional muscle relaxant, maybe I won't have such wacky dreams anymore...they were getting reallllly bizarre!!! ;-) crunchypoddlemama: good luck getting the answers you are looking for and being your own advocate..., you sound like you've got a good hold on what you are looking for, wishing you the best!!!!
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Hello everyone. Its been awhile since I posted. Decided to take some time off the boards. It has been 1 year since my bmx and 7 months since the revision and change to a larger implant. Had my recent visit with the oncologist who ordererd a mammogram to see how much breast tissue remains. Had that today. I never complained of mammogram compression before but this time it really hurt getting the skin under the arm in there. Couldn't wait for it to be over. I sat down with the radiologist who reviewed it for me. Was interesting seeing the implants all round and perfect in there. On the drive home I broke into tears, more of a PTSD episode.
I will say that my breasts seem to have filled in more. I think its the chest muscle loosening up alot and I have no pain or tight bra feeling. Hopefully that gives hope to some of you.
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Hi Jeanie (PB22)! Glad to see you on here, again! Sorry the mammo was so awful. I totally get the PTSD thing. Seems like any medical procedure these days puts me over the edge. Almost had a break down in the dentist chair. (Of course, I do that, anyway!) Thanks for the update. It does give me hope that someday everything will feel more normal!
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