Nipple Sparing Mastectomy with immediate reconstruction
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twirl- Yippee for you, too! Lots of exchange dates coming up!!! GAgirl, hurleygirly and you are all within weeks of each other! (Let's see- twirl, girl and girly. Hmm, I see a theme here!)
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For everyone who has exchanges coming up there is a great thread called "Exchange City" where a member called "Mykidsmom" posts everyone's exchange dates. It's great because you get a lot of info on what to expect before and after exchange and everyone cheers for you. Check it out if you haven't already. You need to PM "Mykidsmom" to have your date added to the list. Hope everyone's having a great weekend!
http://community.breastcancer.org/forum/44/topic/728266?page=570#idx_17077
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Fairportlady55-awww thank you! Really I have to say it was the support and knowledge I got from this very thread that made it possible for me to even get a NSM. I started reading about it here and talking to you ladies and researching it and then the key was actually finding someone who did it. At this point it's almost like a secret, so few Dr's in the area are doing them, it's like you got lucky if you found one. I really hope this procedure becomes more widely available to more women. I have always said throughout this ordeal all I wanted to know is that I had every choice available to me when making a decision. In the end someone may not chose a NSM for personal reasons, but isn't it good to know they have the choice.
Kate33- I'm coming up for exchange the beginning of Oct. I see my Dr this week to go over sizes and I am definitely asking about rippling. I still love the quote you have on your profile. I told my sister-in-law about it and she said she is going to put it on a T-shirt for me for Christmas and you bet I'd wear it after all this!
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This may be a stupid question but with NSM, do you keep the sensation in your nipples or are they numb and kept for cosmetic reasons? Thanks, I'm having a BMX with DIEP flap reconstruction done at the same time. I didn't realize they could keep the nipples.
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VJSL8-chances are you won't have sensation or very little. When you have a skin sparring you usually don't have much feeling either although some women report some sensation coming back in the skin or even the nipples. I think but I am not positive that NSM are usually only done with implant reconstructions. I don't know if they are possible with DIEP. I had a NSM and my left side is completely numb but my right side I have some skin sensation, but no nipple feeling.
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I have about 90% of the feeling back. It slowly came back over time. When I had my last fill last week..I felt the needle go in. That was the first time I felt it. My NSM was in March.
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Thanks sweetie2040 for the information.
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twirlandcurl-wow,that's great. Is the feeling you have back in the skin and nipple or just the skin? I have some sensation on the right side (non cancer side) in the skin only, nothing in the nipple and left side completely numb.
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mostly the skin. The nipple is kinda weird. I can sense the touch..but it is like a numb feeling. my PS said the feeling would return but the smooth mucles are severed so it won't ever get a "higbeam" if you catch my drift.
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twirlandcurl- that is good your Dr. thinks more feeling will return. I am hopeful of this too. The one nipple I have pops up and goes back down although I can't feel it happening and don't know why it does. If I jump in the cold shower it may pop up but I can't feel it so it's really wierd.
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FYI - Nipple sparing can be done with ANY type of breast reconstruction, not just implants.. i have seen some pretty awesome DIEP's with nipple sparing. of course, you want a breast surgeon that works consistently with the plastic surgeon for BOTH DIEP and NSM. I am 4 weeks post NSM and I have full sensation across the top of my chest. I can also feel some sensation with both nipples. Its purely a bonus, thats all and certainly not the norm. I guess i won the lotto...LOL0
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VJSL8, I didn't have a nipple sparing mastectomy, so I probably shouldn't be commenting here. But I thought it might be interesting for you to know that even though my nipple was removed during my mastectomy, and even though I never bothered to have a nipple constructed after my implant reconstruction was complete, I often have nipple sensation. In fact, I remember a thread on this discussion board a while ago where a lot of us were laughing about the fact that even though who don't have real nipples, or any nipples at all, we still have nipple sensation. That's because much of what we feel is actually in our minds. So if you are used to feeling something when that area of your body is touched, you may still "feel" it, even though the feeling isn't real. Another example: When I get the shivers, both my breasts feel exactly the same and I feel both my nipples become erect, even though I only have one natural breast and nipple and the other is just a piece of silicone.
My understanding is that as many as 60% of women who have mastectomies have some phantom feelings. These can be pleasant (such as feeling your nipples) or unpleasant (pain, itching, etc.). As for whether it's possible to have real nipple sensation after a nipple sparing mastectomy, my understanding from medical articles I've read is that it is possible, but the amount of sensation will be small. Approx. 80% - 90% of nipple sensation comes from nerves that by necessity are cut and cannot be reconnected when the breast tissue is removed during a mastectomy. The remaining 10% - 20% of nipple sensation comes through the skin and can be maintained or regained after a nipple sparing mastectomy. The fact is that the only real feeling that any of us can have after a mastectomy, whatever type of mastectomy we have, is through the nerves that travel through the skin - after all, there are no nerves inside the breast anymore. So the real feeling that we have are surface sensations only.
In the end though, if you have nipple sensation, whether it's real or phantom, or a combination of both, it probably doesn't matter. I enjoy my nipple sensation, even though I don't have a nipple!
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Twirlandcurl & hurleygirl~ Congrats on dates for your exchanges!! Let's say good-bye to those TE's. Yippee squishees here we come! Looks like we're all joining the soft boob club around the same time. Congrats also on regaining what sounds like alot of your sensation. Thats wonderful. I've been gradually seeing mine return as well. I've felt the needle injections with the fills from the very start with full sensation on top, and am having increased sensations underneath on both sides. Hopefully this will only continue to improve with the exchange. Can't wait to hear how everyone is doing!
Lots of hugs!
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last three days I have been having these twinges of pain from my sternum to my nipple. I had my last (over) fill last week..and since then...YOWSA on the nerve action.
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Beesie-Thanks for the post. The topic of phantom feelings is fascinating as is the idea of regeneration of nerve cells. I have heard a (from BCO of course!) about the use of tactile stimulation with the use of different fabrics/textures and how that is sometimes recommended to "retrain" the nerves to grow.
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sweetie- I actually saw my tag line on a t-shirt online! Tell your SIL she can buy one at cafepress.com. They have a lot of different styles with that saying on it. Here is the link-
http://www.cafepress.com/dd/43145320
VJSL8- It's very rare to get sensation back in the nipple but it does happen. I would definitely encourage you to seek out a BS and PS who are trained in this procedure to find out if you are a good candidate. Your cancer cannot be too close to the nipple and most BS do not like to perform them if you are larger than a C cup. There are, however, some surgeons who have started doing them on larger breasts. There is a link at the top of this thread where women are posting where they had their NSM done as it can sometimes be difficult to find a qualified surgeon.
twirlandcurl- It sounds crazy but the pain you're describing is a good thing! It means that your nerves are regenerating and that means it is possible to get some sensation back. Most of my sensation did not come back until about 6 weeks after exchange. I now have feeling back over both breasts except for the nipples. If the pain is really intense some doctors will prescribe Gabapentin. I take it and it has really helped. I still get the occasional "zinger" but very rarely now.
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Hi ladies. I'm happy to find this forum. I haven't posted on any forums since before my surgery. April 21 I had NS BMX with TE placed. I finished my fills in early June - 550 cc. I'm scheduled for my exchange on Oct. 7. I can't wait. It will be heaven to sleep on my stomach again. That's my goal for Thanksgiving. It sounds like my surgery and reconstruction are fairly typical. Somewhat painfull, frequently uncomfortable, but much better than living with cancer.
But... during surgery I experienced nerve damage to my hands. The PS and nuerosurgeon believe the cause is being strapped in one position for over 7 hours. My right hand is pretty much normal now, but I still have numbness and pain in 3 of the fingers and half of the palm of my left hand (the median nerve). Needless to say it's been a very long 4 1/2 months, hard to type, can't style my hair, ladies in the office put on my necklaces :-( Has anyone else experienced this? My PS says in 11 years she's never seen it. The neuro dude says he's seen it with other types of surgery, but not with MX. Just need to know if I'm an oddball or if they just weren't aware of others having this problem. It's been pretty depressing but I keep hoping for a light at the end of the tunnel.
Thanks for any info you can share.
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debbys17: I haven't had hand numbness but other places on my arm. Mine started to get better after a few physical therapy sessions. The therapist said muscles tend to go into a permanet spasm, which can also constrict nerves, after trauma like surgery. You might want to see about going. I think most insurances will cover it for several sessions and it can't hurt. Well it CAN.....but it might make you feel better in the long run!
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debby- Welcome! I haven't had the hand numbness but have had it in my shoulder. They do cut a lot of nerves during MX so I'm actually surprised we don't have more numbness issues than we do. I would definitely check out physical therapy, as bcincolorado suggested, as I can imagine how frustrated you must be. The good news is the exchange surgery is much shorter than the MX so if it's a matter of being in one position during surgery this next one will be a lot better.
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Hi everyone!
Debby: welcome and sorry you have such a problem! I have quite a bit of numbness but not like yours: mine was under my arms, which is much better now, and my sides around toward my back, which is also gradually improving. My BMX was in January, and I must say it is still an ongoing process, ever changing. I am hoping yours will improve in time too. Physical therapy sounds like a great option....
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Thanks for the encouragement ladies. I have been going to weekly physical therapy and chiropractic appointments, My chiropractor is trying low level laser therapy and I have about an hour of exercises to do each day. So it's hard to ignore when it takes up so much of my time. I have been assured that no nerves to my hand were cut, it's just a compression injury, and should heal in 12 to 18 months. I do think my hand has very effectively distracted me from my breasts and TEs. I have numbness in the chest and under my arms, but I expected that. I am definitely looking forward to the exchange.
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Hi Ladies,
I saw my surgeon last week and asked him about the NSM and he said it is not a good idea. He said often patient has to go back to fix it because it inverts.... Did anyone experience that? Or is my surgeon just not wanting to do it? I really wish to keep my nipples .... =( Please help
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Hi Monika: I know not all surgeons do this surgery and not everyone is a candidate depending on where your tumor is located. Mine did tell me there was a chance it might not "survive" even with NSM. I haven't heard of inversion and mine sure didn't do that. I can't imagine it would be that bad to have it "filled out" during exchange or something. You might want to check with another surgeon for another opinion too.
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bcincolorado thanks . I will talk to my surgeon again and go for a second opinion.
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MonikaV If you can keep your nipple, do it. Perhaps you could get a second opinion.
There are serious health reasons (such as tumor location) to remove the nipple but if you don't need it removed, then keep it. I was able to keep mine and SO glad I was able to. It is very slightly inverted, just at the base but it responds to cold and touch even though I don't have sensation. Hope it all works out for you.
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Monika, welcome to the thread. I had a very successful NSM and having my nipples makes me sometimes forget I had a BMX. I am very pleased with my new physique and feel so fortunate to have kept my nipples. I have never heard of the risk of nipple inversion either. I have learned from BCO that what women are told about NSM by their doctors depends a lot too who their doctors are, how well they are trained and how much experience they have in NSM. It is wise to be a pro-active consumer: I'd ask how many NSMs the surgeon has done in the past 12 months and in total. The ones who are unfamiliar with the procedure tend to discourage it, IMO. I agree that getting a second opinion would help. You are in CA where the NSM docs are plentiful - perhaps you can find a good NSM surgeon from
http://www.breastpreservationfoundation.org/ or this BCO thread:
http://community.breastcancer.org/forum/44/topic/750056?page=2#idx_48
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Speech529 and Whitedove: Thank you for your support. I will call my surgeon on Monday again and tell him that I want the NSM and I will also look around for other doctors.... Have a great weekend ladies.0
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MonikaV-I agree with the other ladies. I had to really look for a Dr who did NSM. The first two I saw didn't do them so they simply didn't offer them to me. I really wanted to keep my nipples if possible. I finally found a third Dr who said I was a candidate. I am so glad I did it and it feels less traumatic to me because I have more of myself. I did lose part of one nipple, but even with that I'm still glad I have most of it. It was important to me so if you feel that way I would really pursue finding a Dr who does them to see if you are a candidate. I had no problems with inversion, in fact I wish they would stay flat, they pop up too often even though I can't feel them. Keep in mind if you keep your nipples that means one less surgery too since you wouldn't need nipple reconstruction. I haven't heard or read much about inversion. To me that wouldnt seem to be much of issue, you'd still have your nipples so what if they were slightly inverted, still better than not having them at all!
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Sweetie thank you. Yes I am determined to talk to my doctor again . I will call him on Monday and if he does not do the procedure I will look for someone that will. I want to keep my nipples.
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MonikaV, Both of my nipples are fine and I'm so happy I was able to keep them. They both perk up when touched, or when I get cold. Keep searching! Best of luck to you, and please keep us posted.
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