Nipple Sparing Mastectomy with immediate reconstruction
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(")_(")o. HaPpY eAsTeR eVeRyOnE!
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How is everyone doing - it doesn't seem like this thread is very active anymore - I hope ladies are still having the nipple sparing procedure. I had a lady call me a few weeks ago that had just found out she had bc and her doctor (my BS) said she was a canidate for the nipple skin sparing surgery. She could only find myself and another lady out of state that had come to Utah to have the surgery done. So I invited her to come visit and I was able to answer alot of her questions - showed her the new foobs (she asked to touch them) - she was just so worried about how the outcome would be. Well - she did have the surgery, after seeing quite a few BS and PS - she went with both of mine. Her nipples survived - YAY - and she is happy she had it. I was certainly glad to be of some small help to her.
If there is anyone from Utah out there - let me know I'd be glad to answer any questions.
Is anybody on here going to the Las Vegas get-together???
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I am in Nashville, TN and had NSM performed 6 weeks ago but NOT in Nashville. If there are other ladies in the Tennessee area who would like information on the precedure, I am happy to help in any way I can.
I agree this thread has become less active and I fear many women do not know about this procedure nor who and where it is currently being performed. So, ladies, let's get the news out to every woman facing this surgery!
I am happy to answer any private messages and to speak with anyone in need!
Hugs to All,
Sandy
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I think it is important for this thread to stay active enough for newbies to see it. I'm surprised how many people are not even aware that you may have the option of an NSM. I just went through my exchange and it is really amazing how natural and "real" they look.
... My PS has also asked me if I could be their "go to" person for new clients that need some reassurance, have questions for people that have actually gone through it, etc. I told him I would be honored to. And I will definitely be telling them about BC.org. 0 -
I just had it done on Apr 14th with the inframammary incision (under the breasts.) I had TE's placed. It. Looks. FANTASTIC. I'm very pleased. I have to do radiation, but I am going to do everything I can to keep my radiated breast looking good.
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sweetbean - so glad surgery went well for you! I am still amazed when I look at myself in the mirror and see vitrually no scarring due to IMF incisions, NSM was defintley a blessing in this crazy mess! Emotionally, I feel comfortable in my own skin and I realize how lucky I am for that... I wish you all the best!
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Hi ladies - YES! We need to keep this thread current - NSM truly made all the difference for me out of the whole BC mess. I try to share my experience with women as it has come up in hopes that more people become aware of NSM, and understand that there are options in mastectomy surgeries.
I hope all of the ladies who have participated on the NSM thread are doing well and please, women who are considering it or want to know more - this is a great source of info & support!
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Yeah, glad to see this thread active again, too! I've made it my mission when I'm out in about in the world to educate as many women as possible about NSM. I told my new hair stylist, my neighbor, the woman who gave me a facial, a flight attendant on the plane, etc. I found out about this procedure by accident doing research about BC. My own doctor never even told me about it. (I should say my ex-doctor!) Spread the word, ladies!!! Maybe we should have our own t-shirts- SAVE THE NIPS! LOL!
I am going in for a revision May 13th. I've been very happy with the NSM but not so much with the implants themselves. I am flying to MIami to have surgery with Dr. Khouri at the MIami Breast Center. He is going to exchange my implants for smaller ones and then do fat grafting over the top which will hopefully alleviate some problems I am having like rippling and pain. (I think the pocket may be too tight for the implants.) He said with enough fat grafting he would eventually be able to remove the implants all together. No implants + NSM would be amazing!!! Anyway, excited but nervous about yet another surgery.
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Hi all, even though I'm STILL dealing with healing issues post NSBXM in February
and have made no progress with my reconstruction I am recommending NSM every chance possible on various threads here. I have shed some tears since my diagnosis, but none have been over what I see in the mirror since surgery and I mostly credit NSM for that. Like fire-dancer, I am amazed (even though I'm far from done).NSM is not available in the large city nearest me. I will be forever grateful to my local breast surgeon for making me aware and for urging me to travel to a city 125 miles away to pursue this because she thought I was an excellent candidate. If I hadn't been connected to her I likely would have ended up with traditional surgery and reconstruction and would be in a much different place emotionally right now.
Best wishes to all - hang in there!!!
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Tina - so sorry you are still dealing with some complications...I hope that things start to heal and move forward for you!
...but yes, it is amazing when I think of the emotional outcome and how I have reacted. I do owe that part to the NSM, I really think I'd feel somewhat differently had I gone traditional BMX...
Kate - best of luck to you and your travels to Dr Khouri - please keep us posted as to how you are doing! Good luck!!! :-)
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Tina- Well said about the tears not being about what you see in the mirror. That sums it up perfectly! Sorry you are still having issues with the healing process. Hope things turns around SOON!
fire-dancer- Thanks! I just requested my "before" pics from Dr. K's office that I will put on the picture forum. Definitely want to document it for others.
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hi all, haven't been on in awhile, but just popping in, as I hope to get my NS prophy in late summer. Still need to get the consult and see if I am, as a DD, a candidate.
I know there are alot more PSs getting on board with NS!! This is very exciting! I am wanting to know more re: the IMF method as it is the lollipop scar that is giving me pause in all of this. Don't know why really, it just is.
Glad to see our thread is still active! Kate, such wonderful news, very excited for you!
xoxo
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Thanks, firedancer! I completely agree! The surgery was so much less traumatic because I woke up and still had pretty normal looking breasts. In fact, the blood supply was so good that my PS was able to expand me more than normal during surgery. Add that to the fact that I am a pretty small girl and I woke up looking waaaay better than I thought I would. Looked pretty proportional even right after surgery. I recommend that and the IMF all the time. Made a huge difference and I think more women are candidates than not.
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Actually, did anyone also have radiation? I have to have radiation because my tumor was close to my chest wall. Any tips on protecting my nipple?
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anniealso- There's another thread where women post where they had their NSM done. (There's a link at the top of this thread.) I know I saw someone post about a BS doing NSM on D cup girls. You might have to scroll through to find it and I couldn't tell you where he was located but if he's doing it then others might be, too. I did read, though, that on larger breasted women it is hard to do the NS through the IF. Something to do with getting all the breast tissue while still maintaining blood flow to the nipples. This was quite awhile ago, though, so progress may have been made there. Good luck! I really really hope it all works out for you!
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Thanks, all! My wounds and healing issues have all been related to the methylene blue dye - either a full-blown bad reaction or the NS procedure compromised the tissue enough that it simply couldn't handle both the dye and recovering from surgery simultaneously. My BS has done many NS surgeries and has never had a patient experience more than a transient skin irritation before I came along. I've had some skin and partial nipple loss to necrosis and am still dealing with trying to get a hole closed up in the middle of an area the PS tried excising and stitching closed. Because the incision healed only on the ends it left a large "hole" in the middle just adjacent to the nipple. It is showing signs of progress (I've been packing it 3x a day for weeks now). Hopefully, in a few more weeks it will be fully closed and the little raw area on the side of the nipple will be healed. THEN we'll refill the TE and finally be back to square one!
BTW, I guess I am one of the lucky ones whose BS does the NSM with inframammary incisions. Mine healed up great. It didn't seem to have anything to do with me, I had the impression that's just the way she prefers to do it.
I've got to hand it to my PS - he is as determined as I am to make the best of this. I know it would have been easier to excise the whole struggling area (nipple and big patch of skin) long ago and pursue more conventional reconstruction on that side, but he and his PA keep saying, "We're not giving up on you, we all have the same goal in mind." He thinks I may need a little "tweaking" of the nipple on that side, but that my end result is still going to be good. I want so badly to believe him that I'm going with it!!!
(Edited - Sorry, probably too much information!)
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Go girls, let's keep this thread active!
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I'm having issues with my PS's billing office and my insurance company. Am not sure my revision is going to happen. I'm just so frustrated. They said I could appeal it but I might lose my May 13 surgery date. (Of course, I found this out after I booked my 5 night hotel stay in Miami that is non-refundable!)
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Hi girls,please tell me about this nsm? i was never offered this. im so upset! can you please tell me about it. my right side has a scar from almost the middle of my chest all the way undar my arm. i dont mind the scar i guess, cause i am alive but, can i still have enough skin for exspanders? my bs knew i wanted reconstruction, but im so flat there? im having my left side taken as well, though no cancer in it. with the left side i want to have the nsm. will they do that? i have been running around with one boob for 1 year now. i have an appt with a ps who does this next week, i guess i will have to have an exspander on the right? and i hope he will just clean the other side out with the nsm? im so upset that nobody told me of this.. with my dx i would have opted for this. i feel like i should have done my own research but i was so scared i didnt think, i thought the BS tells you these things... can they match both sides? thank you so much
Chey
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Cheyenna - That is too bad, but not all BS do nipple sparing. I was lucky that mine suggested it - I didn't even know about it until then. They can do it on one side - I would think you would have expanders on both sides, being able to match both sides - of course you need to ask your PS those questions. Hope it goes well!! Valerie
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Cheyenna -A NSM is a mastectomy that saves the nipple by the BS making the incision under the breast in the fold (IMF) or around the side of the nipple and out towards the side. My scars are under the fold and about 4 or so inches long. Now that I have implants they are almost unnoticable. The cosmetic outcome is quite remarkable for most women who are able to go this route. I was told after my NSM my chance of ever having BC again was at 1-2%...
Valerie is right, not all BS do NSM, the first one I saw didn't, but thought I would be a good candidate for it so he guided me to my current BS. If the single mx you are going in for isn't urgent, perhaps you can take some time to check around your area or ask your BS if they do it or know someone who does and see if you are a candidate. If you are meeting with a PS next week, ask them if there is a particular BS they have worked with who performs NSM. There is a thread on BCO - NSM and where they are done - look at the 1st post on this thread for the link.
It's really an amazing option for women who are undergoing mastectomy. Read back on this thread a bit and there is a ton of info about it that might give you some knowledge for discussing this with your Dr's. I hope that you find the answers you are looking for and are succesful in your search for NSM.
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cheyenna- Unfortunately, it's not a law that doctors have to tell a BC patient all of her options for treatment except in New York and even that law doesn't cover reconstruction options. This is definitely something we need to work on and is a big pet peeve of mine.
That being said, I would definitely seek out a BS to do a NSM on your other side. You probably weren't told about it with your first MX because your surgeon wasn't trained in it which is what happened to me. (Luckily, I found out about NSM in time to switch surgeons.) There are certain reasons why you wouldn't have been a good candidate for the procedure, though. If your cancer was too close to the nipple they wouldn't have been able to do it. Or if you are very large breasted most BS won't offer it. I'd be tempted to write a letter to your original BS, though, and ask why you weren't told about this.
When you find a new surgeon make sure they are very experienced in the procedure as this definitely effects the rate of success. They are able to do amazing things now with reconstruction so I would consult with a few different PS to see what all your options are for the other side. Good luck and so sorry this happened to you. It is just wrong, wrong, WRONG! (((hugs)))
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cheyenna: Like fire-dancer, I was totally unaware that NSM existed and (fortunately) the first BS I saw urged me to pursue it and even made the arrangements to see a BS and PS who do the procedure (125 miles away). Not everyone is a candidate; breast size and shape, proximity of cancer to the nipple (if it's prophalactic that's not an issue), prior breast surgeries and radiation, etc all might come into play. The BS does the mastectomy and the PS takes over - back to back surgeries. There are a number of different reconstruction scenarios that could take place (flap surgery with your own tissue, tissue expander/implant surgery, immediate implant surgery). I was actually steered to the PS who then told me which BS he wanted to work with. I made consult appointments with both on the same day.
There is controversy regarding the nipple. It is technically considered to be breast tissue, not skin, and many still argue flat out that it should be removed. NSM has been done for a few years now, but still considered "unproven" by some in the world of breast and plastic surgery. It is definitely for the most motivated patients willing to do some research to find the right surgeons and to get answers to all questions.
Good luck, hope it works for you!
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Good Morning Ladies,
I wanted to respond to this lack of information being given to women facing MX. It makes me furious to see the number of women who were NOT told other options might be available to them to prevent the loss of skin and nipples. SHAME on the docs who did not mention this just because they don't know how to do it!
Requiring this surgery is bad enough. All docs should certainly inform all patients of all options which might be available. I understand not every woman will be suitable for NSMX for any number of medical reasons. But I cannot understand why this method of MX is not front page news.
I think those of us who have been fortunate enough to have learned about this must make every effort to educate all other women. My best friend is a runner in a BC marathon in early summer. "My team" will be wearing shirts with this slogan:" Nipples CAN BE saved! Learn all about it!"
So far, there are 40+ runners on my team, and we are hoping for over 100! If just one woman sees these shirts, asks questions, saves her nipples, we will consider this a victory!
Hugs to All, Sandy
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Sandy - YEAH!!! Good for you!
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Sandy- That is awesome!!! Good for you! Who knows- maybe someone from the press will be there? I think that is so great you are doing that!!!!!
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Thanks ladies! It upsets me so much every time I hear about another "victim" I want to do something about it. I think the term "victim" is certainly accurate for we expect docs to tell us the whole truth and all options but apparently, not all feel any obligation to do this. Without knowledge, how can we make good choices?
Surely, most docs know this is an option suitable for many women yet they say not a single word about this option. So, I guess that leaves it up to us!
I am not running in the marathon, but I may be there to pass out water and information!
Hugs, Sandy
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Sandy- Victim is the perfect word because for many they are being disfigured for no good reason. I've even seen some surgeons, who are trained in NSM, to still do the incision right through the center of the breast when the women would have been a perfect candidate for it being in the IF. The only reason for this is a lack of training and pure laziness. My BS told me that by doing a NSM and doing the incision in the IF the surgery can take twice as long. The fact that some doctors don't think this is worth it is appalling. Let's do everything we can to save future "nip vics" from mutilation.
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Sandy -- I think you and your team are AWESOME!!! I really hope you get recognized by some sort of media at the race, to bring even more attention to your idea would be super - it is such an important message to send and a creative way to do it...I hope you get your 100 participants or even more :-) !!! Gooooooooooo team!!!!
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Sandy105: Yahoo for your team!!!
One of the heroines in my journey has been my local BS. She did a surgical breast biopsy on me in 2009 and was the one actually able to get an MRI authorized for me last year after 3 other docs tried (well, one tried and two weren't really willing) - no family hx, no abnormal mammo findings, no lumps felt - I just WANTED one because of dense breast tissue and crappy, useless mammograms. She is also the one I saw when two cancers were found on that MRI. In a fog and trusting her completely, I was ready to do whatever she recommended. I will be forever grateful to her for coming through for me again by "sending me away" to San Francisco because she knew I was a good candidate for NSM.
From what I remember her saying, NSM is not offered here not because the breast surgeons aren't interested or willing, but because there are no plastic surgeons here who can offer the full gamut of reconstruction options (DIEP, etc). I did have a consult with one of the local PS while in my info-gathering phase and he told me that the microsurgery equipment is not available here to do flap surgeries. So, sounds like a complex program needs to be put in place, both equipment and the experienced microsurgeons/plastic surgeons to use it. I don't know if it would work to tell patients they can have NSM, but only if they choose implant reconstruction. The autologous reconstruction options seem to be the hangup here.
I am 11 weeks out and still dealing with surgical healing issues so I am NOT the poster girl for NSM. I haven't even had an outpatient TE fill yet. One breast looks great and the other will be fine once the PS does a little tweaking (had some necrosis of part of the nipple and some adjacent skin). Still, I would do it the same way (well, maybe I'll skip the blue dye necrosis part). I intend to offer myself as a reference to my local BS for anyone woman who has questions about NSM.
Sorry for the long post. Can you tell that we're passionate about this cause? Have a great day everyone!!!
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