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Nipple Sparing Mastectomy with immediate reconstruction

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Comments

  • TNLady
    TNLady Member Posts: 219
    edited February 2010
    Hi Cherries!  Nice of you to join us.  It seems like 6 weeks is the turning point for all of us.  I agree with you that it was not as bad as I thought it would be.  My boobs aren't perfect either, one is still higher than the other, but it should drop with time. I keep telling myself the most important thing is that the cancer is gone and at least I have perkier boobs now.  I still miss my old boobs though. :(   All in all I am doing great.  I just can't wait for the weather to turn warmer, these things don't do well in the cold!  I'm glad things are going smoothly for you.  I bet you are excited to get your implants.  They should be a lot more comfortable for you.  Welcome to our thread!
  • Goldieknox
    Goldieknox Member Posts: 33
    edited February 2010

    Hello,

    I too had a bilateral nipple sparring mastectomy with immediate reconstruction, but my reconstruction was with permanent expanders. It has been 13 weeks for me.

    Honestly, it never crossed my mind and no one ever said to me before the surgery that if I chose to keep my nipples, that afterwords, there was a chance that one nipple would be pointing high and to the left and the other would be pointing low and to the center. Very distressing, and very obvious unless I wear a very padded bra. 

    I also have the right breast riding very high and tight causing discomfort in the upper pole and pushing out towards the armpit, while the left one from the very beginning was rounder and a much better shape. If only they both looked like the left one. 

    Have you had any luck with the compression bandage your PS has asked you to wear yet?

    Thank you for starting this thread/forum. Just reading over some of the other posts has made me feel better about some of my concerns, but of course I still have a million others, lol.

    Hope you have a great day!

  • TNLady
    TNLady Member Posts: 219
    edited February 2010

    Goldieknox,  Sorry to hear about your troubles.  My nipples are not exactly the same either.  My right one looks like it did before surgery, but points in a different direction.  I'm not sure why it does that. The left one is still recovering and has just started to perk up.  I'm not crazy about how they look, but I'm still glad I got to keep them. 

    I have been wearing the compression strap faithfully for almost a week now, but I still do not see much change.  My biggest concern it that it is pushing both breasts down, and the point is to push the higher breast down to be even with the other.  They should design something to wear over just the one breast. 

    I'm curious about your permanent expanders, could you tell us more about them?  Do they use saline to fill them?  Are you finished with your fills?  How has your pain been?  We are glad you joined us, and look forward to hearing more from you. 

  • Goldieknox
    Goldieknox Member Posts: 33
    edited February 2010

    My permanent expanders are Natrelle 150. They have a silicone filled outer lumen and  a saline adjustable inner lumen. The injection ports are  actually below my implants and sits on my rib cage. You can choose to have the injection ports removed after fills are complete or not. My PS said I will set off metal detectors, lol. Guess I will find out if that is true or not soon enough. They are tear dropped shaped and textured. Was there anything else you wanted to know about them?

    My fills are not complete yet. My right side is actually over filled at the moment, and the left side is under filled. Funny how the left side still looks so much bigger.  I really experience no pain during the  fills, but there is discomfort after, and the right side always hurts.

     I've been wearing a compression bandage too, but all day instead of just 30 minutes. I was told to wear it at night as well but I just can't get to sleep with the darn thing on. It's been a month for me and I have seen no change with it either. It does however make the pain in the right side better, but only while I am wearing it.

    Next fill is in two days.

  • bcincolorado
    bcincolorado Member Posts: 4,757
    edited February 2010

    Marie:

    I had my nipple turn black and was concerned but it was just a huge scab!  After surgery Janurary 7th I just lost almost all my scabs (the worst ones at least) this week. 

    I felt better after they were gone.  Hang in there.

  • TNLady
    TNLady Member Posts: 219
    edited March 2010

    I need your prayers!  My husband fell off of my parents roof on Sunday and had to be airlifted to UT Knoxville.  He fractured his L2 vertebrae, but  fortunately he will not need surgery.  He has to wear a brace for up to eight weeks.  It could have been a lot worse considering he fell about 18 feet to the ground.  He is home now, but very uncomfortable and in a lot of pain.  This has not been our year, I guess I am going to have to keep reminding myself of the positives.

  • fairportlady55
    fairportlady55 Member Posts: 152
    edited March 2010

    TN: oh my gosh I am so sorry about your husband! Thank goodness he doesnt need surgery and will not have permanent damage! I know they say the Lord doesnt give us more than we can handle but wow you have had enough already!That must have been so scary to have to have him airlifted and everything! I sure will pray for you.

    I have not been on here for a week or so, had a lot of pain and wasnt up to much: this is different for everyone, and for me the fills have just been miserable. The good news is I just had my 2nd to last fill today and am tolerating it MUCH better! The even better news is that my exchange surgery is scheduled for March 26th! I am really REALLY psyched to get these coconuts OUT, but a little scared too. I developed an unexplained bleeding disorder this past summer (like I didnt have enough to worry about) and ended up needing blood transfusions and a second surgery the day after the bmx to stop the bleeding. It was scary ...but my PS says the exchange is WAY easier and it should be fine. They are giving me a drug beforehand to make my blood clot easier which I had with the bmx also. I still have a scab on one nipple but it looks like they are going to be good. I dont think I will have perfect symmetry with the nipples, although he says later he can correct that if need be.  Retrospectively, I probably would have been a great candidate for the expander/implant combo like you did Goldieknox, so I could have avoided another surgery, he didnt even mention it as an option...

    So I just the other day read the story in People Mag. about the journalist who had the nipple sparing bmx , I have to say I was a little disappointed at the tone of it, she came across as saying this whole process is easy and not a big deal, and the picture of her 2 weeks post op to me was quite misleading. Maybe you all didnt react like I did....maybe im just cranky and need to lighten up.

    Hope everyone is healing well and pain free this week...

  • Goldieknox
    Goldieknox Member Posts: 33
    edited March 2010

    TNLady

    Oh no.That's terrible.My prayers are with you both.

  • PB22
    PB22 Member Posts: 176
    edited March 2010

    TN:  Your husband will be in my prayers for a full recovery. You are certainly being tested.

    Fairport: What is the cover of the People magazine as I would like to pick up the issue?

  • fairportlady55
    fairportlady55 Member Posts: 152
    edited March 2010

    Hi PB  Its the People Mag this week with Susan Boyle on the cover: the story is on page 111

    TN Thinking of you and hoping your husbands pain is improving.... 

  • PS73
    PS73 Member Posts: 171
    edited March 2010

    Shoot.  Sorry to hear about your husband.  I hope he gets better soon.  Yes, just when we are about to snap, we are given some more weight to carry. 

    Ive been running this week.  I feel pretty good.  I wear a super strong bra which is like duct tape and my boobs havent fallen off yet.  I still cant quite grab super high things off the shelf without feeling a burning stretch in my left armpit.  I think this is because of the drain that was in there for so long.  Sometimes I wonder if it didn't come out too soon since I was still draining over 40ccs.  The PT lady didn't see lymphademia fortunately.

    I will have to read this article. 

  • TNLady
    TNLady Member Posts: 219
    edited March 2010

    Thank you Ladies for your thoughts and prayers.  My husband is doing well, still in pain, but it could have been much worse.  He is strong and will recover quickly.

    Fariportlady, Sorry you are still having so much pain.  Congrats on the exchange date, you will feel much better with the implants. Will you bank some of your own blood before your exchange?  That stinks having that extra worry, but I'm sure the exchange will not be as intense.  I will definitely pick up a People magazine and read that article, I'm very interested in what it says. 

     PS, Your running, that is awesome!  I love your comment about your boobs not falling off!  HeHe  I have tried jogging a little, but still not totally comfortable with it.

    I hope everyone is doing well.  We don't have long before we will start getting some warmer weather.  We had a snow day yesterday, which worked well for me, it saved me a day.  I am home with my husband for this week,  next week my daughter in on Spring Break and will be able to stay with him.  I am looking forward to Spring!

  • gulp
    gulp Member Posts: 44
    edited March 2010

    Hi everyone. I have been reading your posts here tonight. I am scheduled for a bilateral mastectomy on Monday March 8th and somehow the detail of sparing my nipples hasn't really come up until yesterday. I am extremely confused and don't know what to do. My plastic surgeon seems to discourage nipple sparing, (maybe just in my case, not sure, ) saying that it's more riskier aesthetically. My breast surgeon is much more encouraging about keeping the nipple, saying it can be more aesthetic. I tried to contact my oncologist, just to make sure it's okay cancerwise, but haven't heard from him yet. If he feels it's not a good idea in terms of risk factors, I would follow his advise. Otherwise, I don't know what to do. I feel uncomfortable if the plastic surgeon isn't recommending it, as he is the one doing it. It's the last thing I need to think about 5 days before my surgery. I wanted to try and focus on getting things done at home, cleaning up, etc. etc and trying to relax if possible, but now I am a wreck. Any suggestions? I'm curious to hear other women's experiences.

  • kcshreve
    kcshreve Member Posts: 349
    edited March 2010

    gulp - I had originally decided not to have save my nipples, since my breast surgeon was against it and told me it is thought to be risky. The plastic surgeon is the one who explained to me some of the precautions surrounding the decision, why it is being considered possible: needs to be 7 centimeters from the nipple, needs to be "cored out" and the underside sent to pathology for a double check.  Supposedly the worst case scenario is that the path report would come back with cancer cells.  If that happened, or if there were a nipple recurrence, the protocol at that point would be to take off the nipple.  Deeper than the nipple there should not be breast tissue left - whether you are doing implants or a diep-type reconstruction.  Now, I must also add that I had DCIS, which is a different form than your cancer.  This may make a significant difference in the decision, I don't know.  In the end we have to be at peace with our decision - whatever gives you a sense of peace and feeling settled.

  • bcincolorado
    bcincolorado Member Posts: 4,757
    edited March 2010

    I was told by my BS and my PS that if they could save them it would look more "natural" when reconstruction was finished.  My PS did warn me that there is a chance they would not "survive" though and could fall off after surgery (he assured me I would not have a big gaping hole.

    During the mx the BS had tissue sent right under my nipple/areola area and sent for immediate pathology to see if they had to go or not.  I didn't know until after surgery they could save it.

    My nipple did turn black, but it turned out to be a huge scab (from the pathology) and so far I'm glad I was able to keep them.  My surgery was almost 2 mos ago and hopefully almost done with TE fills now.

    I hope your surgery goes well.  Leave it to your doctors.  I think it all depends on where your cancer cells and tumors are if they can stay or not. 

  • fairportlady55
    fairportlady55 Member Posts: 152
    edited March 2010

    Hi everyone

    TN hope things going well for you today! I cant bank my blood because my platelets don't function properly: if I have a complication it has to be donor blood, but everything I read and have heard is reassuring as far as the complexity of the exchange surgery. Hopefully it wont be an issue.

    gulp: welcome. My circumstances were different: my biopsy showed pre cancer cells: lobular and ductal hyperplasia,  my bmx was prophylactic so in my case there wasn't concern about the nipples although they did core them out and sent everything to pathology. Like many women have described, mine also turned black, but it was just scabbing, it took a long time for it to resolve (this is my 8th week post op and there is still a tiny scab on my left nipple) . Cosmetically the nipples are not perfectly even, but the te's are not symmetrical either. My exchange surgery is 3/26 and my PS says he is going to even everything out and not to worry. So I won't. As has been said by others, the main thing is to feel comfortable with what you are having done and at peace with the decisions. I did get the impression that the nipple sparing is uncommon and an evolving option (at least in my area): my PS had a lot of experience with it, while my breast surgeon had only done 6 before mine....guess that made me lucky #7  :) Good luck and we are here for you...

  • PS73
    PS73 Member Posts: 171
    edited March 2010

    gulp - good luck with what you find out and good luck with the surgery next week.  I ditto all that is said above.

     TN - our exchange is the same day!!  I go in at 7:30am - what time do you go in?   I don't know if you buy into herbals or not but I am going to start taking a high dose of vitamin c and bromelain and some others two weeks prior and arnica the day before and four days after.  This helped me heal great post mastectomy - they even let me out a day early from the hospital.

  • TNLady
    TNLady Member Posts: 219
    edited March 2010

    PS, I think you got me and Fairportlady mixed up, I already have my implants.  I'm glad you are taking the supplements.  I am a supplement junkie, and vitamin C is the best, you cannot overdose on it.  Also, you may want to look into pineapple juice, it is also good for the healing process.  I would start drinking it now. 

    gulp, I agree with what the other ladies have said.  If your breast surgeon is recommending it, then I would feel comfortable doing it.  Your cancer must not be close you your nipples, or otherwise he would not mention it.  I do not regret my decision on doing the nipple sparing.  Sure, my nipples do not look exactly as they did before, but whichever procedure we decide on, their going to be changed.  Overall, I am happy with how they look and feel very fortunate that I was able to do this procedure.  Have you looked at some before and after pictures to see the different outcomes?  Is your PS wanting to do the skin sparing procedure and make your nipples later?  We are here to help, so any questions you have please ask.  I know this is a tough time for you and it helps to have support.

    My husband is doing better, still in pain, but on the mend.  I just keep thinking of what could have happened.  I am usually a postive person, but this has been a tough year!  I think I need a vacation! 

    Hugs to all!

  • PS73
    PS73 Member Posts: 171
    edited March 2010

    my bad - you are both tan so I got mixed up Tongue out  Fairport - we are surgery sisters :)

    - i have bromelain capsules but the regimen my holistic dr gave me didnt include them for some reason??

    ..this has been a shitty year for me too! Well, rolling twelve months ending next month hopefully. dx on 4/23, honeymoon canceled 6/29, sister dx with early melanoma 10/1, dad dx with prostate 2/12ish.  too much cancer. sorry for the rant.  im digressing.   TN - hope your hubbie feels better soon!

  • fairportlady55
    fairportlady55 Member Posts: 152
    edited March 2010

    PS73: 3 weeks from tomorrow!!!!! Hooray for us!!! And dont be sorry for the rant: thats what we're here for :) Besides, that DOES sound like the worst year ever: But spring is coming, a new beginning, with new foobs!!!!

  • TNLady
    TNLady Member Posts: 219
    edited March 2010
    PS, I wish I still had that tan!  Don't worry about venting, we all need to do that now and then, and like Fariport says, that is what we are here for.  Sorry to hear about your family members, that stinks.  You guys will have your foobs soon, yahoo!Laughing
  • PS73
    PS73 Member Posts: 171
    edited March 2010

    Thanks guys.  I KNOW!  I cant wait.  These rocks are like cannons and they are numb to boot so I have no idea when they knock into things - lol.

  • TNLady
    TNLady Member Posts: 219
    edited March 2010

    PS, at least you still have a sense of humor after everything you have been through. :)  They need to design little sensors for our bras to let us know when we are getting too close to something.  LOL

  • PS73
    PS73 Member Posts: 171
    edited March 2010
    Laughing
  • TNLady
    TNLady Member Posts: 219
    edited March 2010

    Hey Girls, I have been doing Jillian's 30 Day Shred. (Walmart has it for $9)  She has three 20 minute workouts at three different levels.  The only thing I have a hard time with is the push-ups, but she does not have you do too many at once..  I have never liked push-ups, but the workout is fun and does not take an hour to do. 

     I hope everyone has had a wonderful weekend.  The weather has been beautiful here, sunny and in the 60's.  There is something about nice weather that brings the spirits up!

  • gulp
    gulp Member Posts: 44
    edited March 2010

    thanks everyone for writing back. I thought I turned on my email notification thing, but didn't, so I didn't realize that anyone had written back! I just read your responses now. It was good to read your responses. I decided to try and spare the nipples, Tomorrow is my surgery and I am really starting to get anxious. Anyway thanks again for your responses and wish me luck!

    Karen 

  • TNLady
    TNLady Member Posts: 219
    edited March 2010
    Gulp,  I am glad you made your decision, I don't think you will regret saving your nipples.  I will be thinking of you tomorrow.  Let us know how your surgery went, as soon as you are able. 
  • bcincolorado
    bcincolorado Member Posts: 4,757
    edited March 2010

    Gulp:

    I hope your sugery was a success!  I know I am so glad I was able to do the nipple sparing.  Of course if the cancer would have prevented it I wouldn't have hesitated.  At least I looked not as deformed and it wasn't so much of a shock to me sincde I was able to have them after surgery,  Keep us posted on how you are doing!

  • sweetie2040
    sweetie2040 Member Posts: 470
    edited March 2010

    HI everyone,

    I've new DX stage one on left and Atypical hyperplacia on right, leaning towards bi max, i'm very fit and active and small breasted now-small b, and am very saddened about having to go through mastectomy. Lumpectomy not a great option since I'm small and would be very distorted. I am planning on skin sparing mastectomy, but heard about nipple sparing. I read through much of your posts here and wondering what is the criteria for having this. My dr says she flat out doesn't do them and my P/S didn't say much and didn't know anyone who did them in our area, I'm outside of Hartford, CT so we have very good Dr's in the area. I'm just curious if it is worth it to try to find a Dr to do it. The idea of seems wonderful. I love my nipples now and it they are a big part of me appreciating the breasts I still have for now, I'm  mourning the fact of having to lose them, If I could save them that would be so comforting. Any advice? Also do any of you know why this is not a more common procedure, why aren't dr's offering this to us if it is possible? I heard it has been around since the 70's and I thinnk it makes sense in the cases where it is suitable.

  • fairportlady55
    fairportlady55 Member Posts: 152
    edited March 2010

    Sweetie: welcome to our thread, I am sorry about what you are dealing with and I understand the sadness of making such a choice. I had bilateral nipple sparing mx on Jan 11, and my exchange surgery for the implants is 3/26. For me, I think seeing my own nipples after the surgery helped a lot: I felt like the inside of my breast was different but the outside was close to the same. I have no feeling in my nipples but just having them I so appreciate.

    The procedure is somewhat controversial, some doctors dont want to do it for fear of cancer developing in the nipple. There is also no guarantee that the nipple will survive: they "core out" as much under the nipple and areola as they can. I did a lot of reading on this. My PS had done over 1000, while my breast surgeon had done only 6 (I was lucky #7: they did it together, BS did the mastectomy and PS put the tissue expanders in and took over from there)  They have a lot of experience at Sloan Kettering, not too far for you. Here are 2 references you can go to to begin to get more info:

    !. American Association of Plastic Surgeons 2008 Annual meeting abstract: "Nipple Sparing Mastectomy and Immediate Reconstruction: Experience with 54 Consecutive Cases" http:www.aaps1921.org/abstracts/2008/P10.cgi

    2.Plastic and Reconstructive Surgery:June 2009-Volume 123-Issue 6-pp1665-1673 Nipple Sparing Mastectomy

    You do of course want someone with a lot of experience, and also who understands why that would be a comforting thing. I believe the main criteria has to do with the distance from the abnormal cells to the nipple. Hope this helps. I know its a tough time, but you are doing the right thing in researching your options! ----Kathy

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