Nipple Sparing Mastectomy with immediate reconstruction
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Hurleygirl-how fortunate to have that you have much sensation! I have so very little, especially on the side that had the BC. I was wondering if it had anything to do with where they Dr made the cut. My cut was from armpit to nipple and your's was underneath, right? I wonder if it makes a big difference in additional nerves being cut,etc. Interesting about your friend since they went in through the armpit area.
BRACA1-the nipple does undergo some kind of a transformation. It is not necessarily flat all the time. Mine is flat but it will "pop up" without me knowing. I don't have any sensation but it still responds to cold,etc. I think everyones experience is a litle different.
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Sweetie, Y I totally feel that a lot has to do with the incision..as for my friend...I seriously don't get it but I suppose all the nerves weave in a way where one could have gotten severed near her armpit and it so happened to be the one giving her feeling in her nipples!
My nipples were always on the small/flat side so I seriously think my actually stayed the same!
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My mx nipple was half way sticking up since healing from surgery. These days, though it is more erect that before, which I prefer because the pushed down nipple sort of made a dent in the areola at the base of the nipple. I don't have that dent anymore.
I am getting feeling back in my augmented (non-MX) breast and nipple. The incision was posterior to the nipple (she tried to get it in the area that would be the fold, but it is actually above that area. My MX incision is around the top of the areola and moving toward the side of the breast. I still don't have much sensation in that breast or nipple. It doesn't really bother me. It just is.
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sherrie- I've never heard anyone on here talking about preserving a sensory nerve so maybe you're lucky- maybe your BS is on the leading edge here. As far as being able to reconnect it- where do I sign up? I'm going to have to look into that!
BRCA1- I don't see how your surgeon can predict what your nipple will look like. Some of us end up with perfectly flat nipples and others, some (like me) end up with nipples that are permanently "on" (which isn't always a good thing!) and others are somewhere in between. I've never understood why everyone is different, though.
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BRCA1: I agree with others. I've heard many women talking about post mx nipples being "on" all the time. Then others end up with somewhat flatter nipples. Maybe some has to do with how large and stretched you go with TE's after mx? Really no idea though.
I noticed on my cancer side that my incision is longer than the non cancer side. It extends further toward the armpit, probably because of node removal, but wonder if that played a part in the increased numbness on that side. I'd like to sign up for the sensory nerve surgery too! I'd like to know more about the dr that did the surgery, and if that procedure has a name, so I can ask my PS about it.
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Wow... great questions to ask my PS and BS at my pre-op appts coming up!
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I was talking to my father about nerve damage after surgery (he's a retired general surgeon). He said it's hard to say when or who will get feeling back after surgery. It depends on the nature of the surgery, the nerves involved, etc. He told me to give it all a year. As I said before, my belly was numb after two C sections, but now I have feeling in the previously numb area. I have hopes for some return, but if it doesn't happen, it will still be okay.
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I agree. Over time, a lot of feeling does end up coming back gradually. Nerves take a long time to reconnect and heal. Surgery takes a year to heal from... all very true. Even without the feeling I'm still very thankful I had nipple sparing and I too will be ok if it doesn't all come back. You get used to the numb feeling (I had 2 C sections too and another surgery... almost all feeling back and what didn't come back I don't miss).
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Probably this is the stupidest question ever, but what do you wear after a single-sided mastectomy with immediate DIEP reconstruction? Do I absolutely have to wear a dress that buttons down the front? What about a big loose shirt and leggings? Or an oversized hoodie?
I'm having a hard time finding a button-front dress, and I'm hyperfocusing on wanting to wear something I think I'll look good in. I know this is demented and really really superficial but does anyone have any suggestions for post-mx/recon wear that is kind of fun and cool?0 -
Kitchenwitch: Keep in mind, you won't have to wear a button up for long. I wore one for maybe 4 days (no DIEP, just nsm w/TE's here). You don't want to raise your arm up and pull on the incision. I really didn't care how I looked after surgery, and you may not either between the discomfort, anesthesia, and pain meds. How about something that either zips or snaps in the front? Have you looked at the button up shirts? Just keep in mind, it won't be long you wear this kind of stuff. I actually got way too much and never wore it.
Look at consignment shops... and look at scrub tops (I'm in the medical field) because they have some really cute ones that button/snap. Or layer yourself, button up top under a zip hoody for looks maybe. I think you may find the button up tops a lot more comfortable for a while.
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Hi everyone,
Well, I just got the go-ahead from my BS/PS for a NSM/TE for Dec. 6th (my 37th birthday...seriously?!?!). I waited to post here till I was sure I was a candidate for the surgery. It was such an odd feeling, but, I felt a huge relief to know that if I was going to do PBM I could get NSM. I am grateful for the chance to keep my nipples. I never imagined in a million years that I would be so "nipple-focused" as I am now
I have been reading this topic for a few weeks now, trying to go back to the beginning and work my way up...it has been sooo informative and comforting at the same time, you are all amazing women with so much to share and I appreciate it all!
Well, all of my appts & blood work are done, now I just wait for the next few weeks to pass, it seems like forever away, but right around the corner...I think I am tired of the anticipation and lack of sleep that comes with it...but now I am focusing on getting familiar with what to expect after, I'll be hanging around here and "soaking up" all the details that you've shared...thanks for that!
ps, not sure what happened to the font...oops!
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Congrats on being able to get a NSM fire-dancer!
Sorry you have to have it on your birthday though!I also am grateful that I was a candidate ...and anxiously await my surgery at the end of this month!! I'm planning on taking plenty of before, during, after pics to help people like us visualize more what it will be like. I know alot of the pis on the picture board have really helped me.
~ Susan
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Hi ladies- for those who have upcoming NSM surgeries I wish you all the best. I noticed that everyone on this thread seems to have a postive attitude about things. I'm thinking being able to save the nipples even though we don't get feelling back or only some feeling somehow makes this journey just a little less tramatic.
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sweetie2040 Saving the nipple(s) is a wonderful option. Many women cannot take advantage of it because of where their lesion(s) are located.
All the best to you who are facing surgery. It will all be okay in time.
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Firedancer - Welcome and congrats on being a candidate for NSM. Hope all goes well for you through all stages of the process. Glad to have you joining us.
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cc4npg: thanks for the suggestions! I know it's not that long. I'll try some thrift shops for something that buttons up front.
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Thanks for the welcome, ladies!
Susan, I agree, it was amazing how grateful I was & the weird(?) sense of relief I had when it was confirmed. I'll be thinking of you for a smooth & speedy recovery! I know I am fortunate for the option and won't forget that. I am going to check out the topic re: how to prepare for surgery too, it's time to get the house, kids & me organized! It seems that between this topic and that I'll gather a ton of info!
I just gained access to the picture site, I plan to visit as soon as I can get a moment, what an amazing idea...and even MORE amazing that women are so open to sharing, I hope to be able to contribute, but do not have the means at home to get my photos to be on my laptop, something I will have to look into fixing!
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Speech529-You are right. I just meant that having this option is a blessing. I also think a lot of times women are not "offered" the option when they are actually candidates and that is sad. It is so hard to have to deal with any of this so anything that can make us feel a little more whole helps so much.
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I wish I could count on being able to save my nipple - but this year has gone so badly. I started out thinking with stage 0 DCIS I would have a lumpectomy (and maybe a re-excision) and then rads and get on with my life. Now I'm having a mastectomy, and I feel very glad I found a BS who said he would do nipple-sparing. (My original BS just doesn't do that.) But he cautioned me that the path. report will determine whether I really get to keep it, sigh... and of course I know there is also the slight risk that it will be lost anyway, but he says he has only lost three. Anyway, I am glad for all those who can keep their nipple. Anything we can do to try preserve what we can of ourselves is meaningful.
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Kitchenwitch, I got alot of similar cautions from my Dr's. I was diagnosed with LCIS, (also have ADH & strong fam HX), but have been told there is a 20% or more chance when they go in they could find in-situ or invasive cancer in these small, yet dense breasts. I was explained that the Dr's (BS/PS) would do their best to save the nipple (BS has lost I think 2 in the past several years-plus). I am having SNB which also is a worry of mine (I know the percentages are low from SNB, but my mom is a long-time LE sufferer, & I have seen enough to worry me, I am actually involved in a clinical study for tracking LE in Mast. patients). I'll be sending positive vibes your way...hope you get to save your nipples!
But, like Sweetie mentioned above, this is an option that we are fortunate to know about. My 1st BS, whom I respected greatly, told me he doesn't preform the NSM, but thought I would be a good candidtate, so he "passed" me along to an extremely well-respected colleague whom I would have probably never seen prior, because she is so in demand. I feel lucky for the knowledge of this surgery and also because prior to any meetings with BS/PS I came on bc.org and learned that there was such a thing that existed.
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sorry, I don't know why it posted before I was done...
I wish all of us going through these difficult decisions the support we need to make the right choices for each of us...wishing you all a peaceful evening...
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Sweeti I know what you meant....some women are not offered who are candidates because their surgeons don't do the procedure. It was pure luck that I ended up in the care of a surgeon who has experience with the NSM.
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I've had family in town and they've come between me and my BCO so I'm a little behind! Just wanted to say to Kitchenwitch- I totally get wanting to wear something semi-attractive after MX. I went with a cute warm up that I could just zip up the front. I didn't need a t-shirt underneath because of the bandages and it was easy to get on. And the sweat pants were nice to wear under that highly fashionable hospital gown!
fire-dancer- Glad you are able to get a NSM, but not exactly on your birthday wish list, huh? This site will be an awesome resource for you, though. I only wish I had found it before my NSM.
sweetie- I agree with you that being able to keep the nipples makes it less traumatic. When I think that my first BS was not even going to tell me this procedure existed I still (10 months later) become so livid. There are a lot of women who want this kind of MX who find out they are not a candidate but there are thousands more who would have been and are never told about it. That's why I tell everyone on here- Spread the Word! Save the Nips! (I mean whales are nice and all, but nips are so much better....) I tell everyone I can because you never know which woman will be the next one to need the information. Now we just need to figure out how to get booked on "Ellen" or something!
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fire-dancer: I agree it is great that this option exists, and I'm really really glad for everyone who is offered N-S and gets to keep them! I have a neighbor who actually had my exact dx a couple of years ago. She's built very differently from me, so she had mx with immediate reconstruction, NS wasn't even on the table and she didnt' even know about it. But she is very happy with the superb job they did, and she didn't have to have rad.
I'm just feeling sorry for myself in advance (and i might get to keep it) because everything else has been so unpredictable this year. The lesion is near the chest wall (so that might require rads) so.. maybe the DCIS cells will not be near the nipple. That's my big hope.
I'm having sentinel node biopsy too - and I'm pretty worried about that and LE as well. BS said he would take just one node (tho if two were stuck together he wouldn't have any choice but to take both). Part of me is almost glad that Nov. 18 is fast approaching and I'll start gettig some answers.
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Kate33: I like the warm-up suit idea! And I saw one on sale somewhere. So I'm going to do that. Thanks!
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Good luck for all with upcoming surgeries. The warm-up suit was an idea that really helped alot. I would also think about getting clothes with pockets for drains. I was lucky to have found a hoodie set (from Danskin) with yoga pants with pockets on the front; as well as a jacket with inside pockets. The pockets really helped, especially when going out in public, I'd just put the drains inside my hoodie and zip up. The hospital provided me with specially made clothes for BC patients but I ended up not wearing them as the warm-up suit was so much more versatile. The good news is now when I wear my "surgery clothes" I do so with a sense of gratitude that that time is behind me.
I would also recommend getting a good haircut before surgery and arranging for someone to help you with washing your hair in the beginning (if possible) as arm movement can be tight. Also, I would find out about what bra recommendations your PS/BS have to say. Bras were not part of the discussion at the time but now that I have learned so much from the Bra 101 thread, I realize I should have paid more attention to proper bra fit even for the TEs.
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Kitchenwitch: My BS said the same thing... cautioned I'd get to keep it only if biopsy of tissue right under nipple was negative for cancer. He did a frozen section at surgery and it appeared negative, then they further looked at it microscopically and it remained negative. The way he put it, he believes we have the same chance of having cancer return in the nipple (which is minute) as someone who has a lumpectomy. That's the whole principal idea in saving nipples... the theory that if a woman can have a lumpectomy with clear margins and keep her breast and nipple, the same should go for a woman who has a mastectomy provided you have clear margins. No surgeon can guarantee he took all our breast tissue because there's a lot of it under the skin, and it's the same with saving the nipple. But statistics are revealing it's less likely just as it is with cancer returning in the skin sparing mx. So hang in there and think positive! I know it's hard!!0
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fire-dance congrats on your surgery! Mine in 11 days and one day I feel I am ready and doing well, another day I am not sleeping and going crazy thinking about it...from what I understood, waiting is the hardest.
I ordered this for my drains, read very good reviews. http://www.pink-pockets.com/home
I also bought 2 very cute Christmas pajamas with buttons at the front. Next week I will ask my husband to start washing my hair, so he can help me when I can not do it myself . Last Thursday I stopped drinking my glass of red wine, Dr told me it is a blood thinner and I should eliminate it. As of today no more alcohol for me at all until after surgery. Hope some of this info helps you...
I had my med and I am quite concern about Celebrex. It is for after surgery swelling, but warning I read on Internet regarding this med worry me. Does anybody took it? Does it really helps the swelling?
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BRCA1: Someone sent me a nice private message saying that waiting before the surgery is worse than the afterwards parts. Mine is on Thursday. I am back-and-forth on being calm and very upset.
Lately I've been telling myself not that I am having a mastectomy, but that I am going in for noticeable plastic surgery. I will come out with a very flat stomach, and my left breast (the new one) is going to be very perky and beautiful. (I"ll have the right one made to match when everything calms down.) Mostly this strategy seems to be working for me.
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Brca1, what a good idea to have your husband practice washing your hair. After my surgery it was so uncomfortable standing in the shower in pain, with handling drains and having my husband fumble around with my hair, getting shampoo in my eyes and it was obvious he was out of his element. Not as romantic as they make it look on TV or in the movie the "English Patient".
Celebrex is an anti inflammatory but more for joint pain, arthritis. Not appropriate for swelling from surgery which is usually fluids in the natural healing process. It helps the joint pain from using the arimidex. With celebrex its not taken like a tylenol, when you have pain, its taken daily to build up in your blood stream to keep inflammation at bay.
Kitchenwitch, I didn't focus on the mastectomy either, I focused on the positive outcome expected with the reconstruction advances of today. Now, for me, 11 months post I am feeling the anxiety and exhaustion of the entire process from dx to healing. You have all this postive energy to beat it and now that the cancer is removed, its like what just happened here, and it is difficult to learn to assimulate what being a cancer survivor means to you and how to move on. Remember what your surgeon said about "lumpectomy, clear margins, keeping the nipple so why shouldn't mast. keep their nipple", true figuratively speaking but with lumpectomy, radiation is required to prevent reoccurrence, and then luck, with us NSMers its luck. Mine was close to the chest wall with what they call a clean margin being only millimeters in comparison as a huge margin in the other part of the breast. That millimeters always gives me something to think about. However, radiation would be too close to the chest wall and could cause damage, so lets hope luck is on our side!
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