Nipple Sparing Mastectomy with immediate reconstruction

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  • jwilco
    jwilco Member Posts: 486
    edited February 2012

    Thanks.  I'm trying but it has ruined my frame of mind for the weekend.  My fear is that it feels extremely similar to what I felt that got me started with this whole mess.  I just saw the breast surgeon a month ago and I don't think it was there then.  I had very slow growing type of BC so I'm hoping it is something else.  <sigh>  Thank you though for your words of encouragement. 

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  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited February 2012

    jwilco yes, it can be something benign like fat necrosis or scar tissue.  Could it be a cancer recurrence?  Yes, but the chance of that happenning so soon after your surgery is low and worrying over it isn't going to change the outcome...just gonna make you miserable in the interim.  I have a spot right now that is being checked out by mammo/US next week, so I understand exactly where you are coming from.  BC sucks, it's hard not to look over your shoulder all the time, but you need to find strategies to not let it run your life.  That's easy to say, not easy to do - but hang in there!  

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  • jwilco
    jwilco Member Posts: 486
    edited February 2012

    I think my fear is that they missed this tiny lump.  It's not in the same area of my breast as the original.  But with skin sparring I am really hoping they didn't miss it.  Plus I would think I would have felt it sooner.  I'm trying very hard not to let my mind wander to the bad place.  I wish there was an emergency lump checking clinic.   

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  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited February 2012

    Me too jwilco!!!!  It sucks how much we have to wait for testing.  It only adds to the agony/worry.  I had to jump through hoops to get in to see my BS early and get these tests.  I feel for you, I really do, since I'm in the same boat! 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2012

    jwilco- More than likely it is scar tissue like others have said but I was wondering if your surgeon used Alloderm?  If so, it can take awhile for it to become fully integrated with our own tissue and it can create hard spots, too.  A few months after exchange I was freaking out because I felt a lump on the side of one breast.  I found out later it was a ridge of Alloderm my PS had used to keep the implants in place.  I know it's hard not to go to the dark place and worry about recurrence, though.  It's an after effect of cancer that we will all probably go through at one time or another.  Just keep in mind it usually turns out to be something very benign but it's always good to get it checked out.  Keep us posted.  ((Hugs))

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  • jwilco
    jwilco Member Posts: 486
    edited February 2012

    Hi,  No I had a lat flap, no alloderm.  My biggest fear is that it feels like the original lump did.  It's going to be a long holiday tomorrow.  I doubt the dr office is open.  I'm so upset and can't believe this could be happening again. 

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  • SuperFoob
    SuperFoob Member Posts: 505
    edited February 2012

    I seem to have a "hard" spot too, like Kate. I also have FlexHD (same as Alloderm) to form a sling and the hard spot seems to be where the Flex stuff is connected. My PT said it could be the Dermal Matrix stuff (the FlexHD) or it could be a seroma, or fluid build up. We are currently focusing on it in PT, at least until my Radiation gets bad, massaging it gently. It could be my imagination but over the last week or so since massaging it, it feels different. Not smaller, per se, but softer.



    It totally sucks how every little thing makes you think cancer now. But like others have said, worrying about it isn't going to change it. It is very hard, but ya gotta try to learn some coping mechanisms or you'll go nutso.

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  • Sherryc
    Sherryc Member Posts: 5,938
    edited February 2012

    Hurleygirl congrats on the new baby.  I have new twin granddaughters and they have been such a joy.

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  • hurleygirly
    hurleygirly Member Posts: 157
    edited February 2012

    vmudrow & Sherryc, Thank you! Yes it was quite the journey and my baby girl definitely has been the light at the end of the tunnel. I will change my icon with a new pict of her. Kate sees her picts all of the time on Facebook...I go nuts with the picts! vmudrow, so good to hear from you. How are you? Hope you are doing fabulous!Smile

    jwilco, I just recently saw my oncologist and my BS and although anything is possible, they both basically said that recurrence is really really rare. It always makes me feel better when I hear that. Of course, getting it looked at is always a good thing even just for peace of mind. For me, peace of mind is everything..since I struggle with bouts of anxiery from this dang disease!

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  • TinaT
    TinaT Member Posts: 2,300
    edited February 2012
    hurleygirly - Awwwwwwww......love the pic of your "mini me"!  What a cutie!!!
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  • Dianarose
    Dianarose Member Posts: 2,407
    edited February 2012

    Hurleygirly- Your baby girl is beautiful !!!

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  • jwilco
    jwilco Member Posts: 486
    edited February 2012

    Thank you all for helping ease my mind.  I do have a bit of anxiety due to this disease, or maybe it was there all along and this made it worse.  I hope to just get it checked and move on with what ever happens.  Trying to not let it get me all upset.  I think my fear is that it was there and they missed it. 

    Hurleygirly - beautiful baby!

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  • vmudrow
    vmudrow Member Posts: 846
    edited February 2012

    hurleygirly - Your baby is gorgeous!!!!!!  I am doing great!!  I'm not on here too much, but it's good to see everyone is doing well!!

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  • Beckydar
    Beckydar Member Posts: 10
    edited February 2012

    Huskylover and all - Just found out 1 month post NSM my margins were close 0.3mm so have been told by the BS I will a) get tighter surveillance (MRI, ultrasound and the heat sensing test - don't recalll the name of that one) versus b) ANOTHER mastectomy to take off the remaining breast tissue/nipple that was left and go back to expander / implant.  After reading the studies this weekend my risk for recurrance with my grade/type seems to be anywhere from ~5 to 20% (depending on the study you read) and if there is recurrance it is likely to be invasive. So my take is I have a 80-95% chance of no recurrance - that's pretty good odds.  My DCIS was only 1.2cm!  Very small - but I think cancer is like the honey badger - it don't care!  I don't think I am going to go the reexcision route.  BS is going to do HER-2neu now (I had Grade 3 DCIS comedo and HER-2neu is typically not done on DCIS) since I had the close margins which will add another piece to the pie. Anyone out there with close margins have anything to add??

    Dianarose - I chose silicone after researching it a lot and talking to lots of people.  One was a nurse friend who works with a PS (10+ years). I am small frame as well with a preop A cup - now I am an A+ to a B-.  I am not afraid of the silicone - the saline is in a silione shell anyway (not the same but interesting).  She said on small chested people they look and feel more natural not only to touch but in you. She actually had saline and one of hers ruptured - she got saline only because she was unable to get silicone as they were only available for reconstruction / cancer patients at the time.  Once they were on the market for everyone and her saline popped she went for the silicone and she loves them - that was 5 years ago.  That's one story.  We all have to do what we think is best.  I am a nurse practitioner and I did my homework.  I figured the worse case scenario is I won't like them and I can have them removed.  I am 49.  They have come a long way with the technology of silicone implants over the years too in terms of rupture potential.  I have a friend who has had hers for 25 years and they look great.  She said her mammogram tech whom she has known for 10 years said hands down she would go with silicone if she had to have implants b/c she has seen so many issues with saline - that is anecdotal evidence from a mammographer but it was someone who has seen a lot of boobs! I am pleased with my choice.

    Hurleygirl - your baby is ADORABLE!!  You GO GIRL!

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  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited February 2012

    Beckydar - yes, unfortunately, I have been through (and am still going through) major issues with close margins.  See my bio for the full complicated story.  I had positive margins in the retroareolar tissue on the left (areola only had been spared there), so I had to have the areola removed post MX.  That was a toughie.  I also had multiple close margins bilaterally (< 1 mm) (in addition to the positive retroareolar margins), and after multiple opinions, reluctantly decided I had to have radiation on my left side (currently at 10 of 28 tx's).

    On the R they saw a fine linear calc after MX (had mammo's, MRI done post BMX due to the bilat close margins).  They could not effectively biopsy it then b/c my reconstructed breasts were too small.  Now that I have had a 2nd fat grafting and am a bit larger, I am lined up for repeat mammo/US this week with possible biopsy if the calc is still seen (it may have just been artifact - fingers crossed).

    Unfortunately, being small breasted with minimal fat tissue between my breast tissue and skin/pec fascia combined with extensive DCIS made for a bad combination which led to bad margins post BMX.  Combining that with the spared nipple on the R, the increased risk means I will have to be followed with mammo's/MRI's despite a BMX.  This is an unusual situation as most do not need continued imaging after BMX, but apparently, it does happen to a few people (like us, unfortunately).   

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  • Sherryc
    Sherryc Member Posts: 5,938
    edited February 2012

    Hurleygirl she is just precious.  I know you are enjoying her.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2012

    hurleygirly- Wish we lived closer because I would babysit for you anytime!  She is so sweet!!!  It's so great to hear some happy endings on BCO!

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  • jwilco
    jwilco Member Posts: 486
    edited February 2012

    Just a little update.  Saw the BS today, was sent to the breast center for ultrasound and possible biopsy.   Good news!  I didn't need the biopsy.  The breast radiologyst was convinced that it was benign and most likely fat necrosis.  Actually she may have said oily cyst.  I did not know that fat necrosis can feel hard like that.  She said yes.  She also said that when I have my fat grafting in March I will feel more lumps but to always feel ok about coming in to have them checked.  So I felt better and wasn't treated like I was insane.  I wanted to share this in case others feel a tiny lump to know it most likely is ok.  I wish I had more confidence in that dept.

    Thank you all for helping me through the long weekend.  This site is full of such informative and supportive women. 

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  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited February 2012

    Jwilco, that is FANTASTIC news...Yaaaaaaaaaaaaaaaaaaaaaay!!!!!!!!!!!!  

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  • Beckydar
    Beckydar Member Posts: 10
    edited February 2012

    Dancetracer - OMG!!! What a total nightmare!!  So, tell me this - how did you get a second opoinion on your path?  I really feel like I need this given my situation with a Grade 3 comedo necrosis - multifocal not multicentric and close margins anterior and posterior.  WOW!  I am ER/PR- with HER-2neu pend.  Tell me how that's done as I going to request.  Thanks soooo much!  Hang in there - there is room for us small breasted women in the herd!  We shall overcome!  Only difference is I have silicone.  I think I would have more peace of mind if I had a second opinion on my path (and maybe a 3rd and 4th!!). 

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  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited February 2012

    You can get a second opinion by calling the institution where you want to have it done and asking them their procedure.  I highly recommend Emory.  They were the ones who caught my 3 mm IDC when 3 other pathologists missed it.  I can look up the actual name of the pathologist (s) if you end up going that route - perhaps you can request they look at your case.  I actually went there for a 3rd opinion on rads, and they insisted on their own path review (which I am very happy they did!).   I would call them and see if they will do a path review for you without you coming in for a consult.  They will tell you how to get your slides sent there, or may even handle it completely for you.  My insurance has covered all of my path reviews - I've been very fortunate!   I so totally understand the need for peace of mind, but I hope my story doesn't freak you out!  It's very rare, so keep that in perspective. :-) 

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  • Beckydar
    Beckydar Member Posts: 10
    edited February 2012

    Not a total freak out but a WOW moment.  I live in Asheville NC so Emory is not a bad haul even if I had to go there.  It's small town America here and while I do feel I have had excellent care  I know there is a human element involved.  I adore my surgeon and know he wants to do what's best for me.  He will be on board and has told me all along he is fine with second opinions.  I just want peace of mind.  Thenks so much for the reply!  I will keep you posted.  Another set of eyes can't be a bad thing. 

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  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited February 2012

    Cool Beckydar - that is so great your surgeon is on board with 2nd opinions - really helps so much!!! 

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  • tigerw0man
    tigerw0man Member Posts: 63
    edited February 2012

    Hi ladies-



    I had my exchange surgery yesterday, just went in to have the Ace bandage removed this afternoon. Right now, my new breasts seem really flat. Is it safe to assume that they will puff out a little over the next few days? I had been a 36C prior to surgery last August, I put on a 38C bra today per the PS instructions and it fits pretty well. He used 600cc Mentor high profile round silicone implants. Maybe they just seem flat because of how much the TEs projected and I look dramatically different than I did yesterday morning. :). Also, my left TE had rotated so the top was pointing at my armpit, so now since the exchange, my nipple is pointing out a bit. He said that this should correct itself over time as the skin and muscle towards the center of my chest was so stretched from the bottom of the TE being there and it just needs to adjust. Did anyone else experience this, and did it straighten out? Thanks for your help all! It's so nice to be able to hear about your experiences to know what to expect.

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  • Urban_Mom
    Urban_Mom Member Posts: 34
    edited February 2012

    Hi Tigerwoman! I am right behind you, my exchange was the 23rd.  They seem to look a little different every day, don't they?

    I actually had a question for anyone out there - I had only one Nipple/areola heal successfully.  I imagine that it is the same as if I had not had the NSM, and that I will at some point in the future have to go for tattooing / nipple creation so that the right matches the left.  Has anyone else been down this particular road?

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  • TinaT
    TinaT Member Posts: 2,300
    edited February 2012

    tigerw0man - Implants do tend to project less than the TEs.  However, it will take more than a few days for them to settle in and for the muscles to relax, etc.  Don't make any judgements yet.....way too early for that!  Keep us posted!

    Urban_Mom - Sorry you didn't get to keep both nipples.  I lost about half of one nipple and due to necrosis the areola and adjacent skin are scarred and without color.  Haven't decided what to do about it yet!

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  • Sherryc
    Sherryc Member Posts: 5,938
    edited February 2012

    I am 4 weeks away from surgery and starting to get a little anxious when I think about it.  Was diagnosed a year and a half ago so I am ready to have this done and get it over with.  My boobs have been cut on so many times and are so lopsided I hate it.  I put on a shirt today and it hangs funny and makes me so self conscience.  DH tries to make me feel better about it.

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  • TinaT
    TinaT Member Posts: 2,300
    edited February 2012
    Sherryc - Four weeks will fly by before you know it!  Just keep envisioning how great it's going to feel to finally have this hurdle in your rear-view mirror.  Hang in there!!!
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2012

    tiger- It can take up to 6 months for your implants to fully settle.  (They call it "drop and fluff" on here.)  Our TE's give us so much projection and we really get used to seeing that.  And some PS's will overexpand us, too, making everything even bigger.  So it can be quite a shock seeing ourselves after exchange.  But it will get so much better, fuller and softer.  

    Sherry- Your feelings are so normal.  It is a very anxious time and one we never imagined we would ever be in.  There's so much unknown about it, too.  Just remember you are in a much better place than most.  You've been smart and researched how to prepare and you know you have this site to help you through the whole thing from start to finish and beyond.  And it sounds like your DH is very supportive, too, which can help so much.  (((hugs)))

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  • Sherryc
    Sherryc Member Posts: 5,938
    edited February 2012

    thanks Tina & Kate.  Kate yes I know I am fortunate to have been on this site for quiet a while now and I have researched the heck out of BMX with reconstruction.  I even met with three PS and had an appt with a 4th.  But after meeting the 3rd one I  knew he was the one so I cancelled the 4th opinion.  I don't regret taking my time and I do feel good about my decision and know this is the right thing to do. Now if it could just get here!!! haha not inpatient at all

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