Nipple sparing or not?

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lucy1992
lucy1992 Member Posts: 2
edited June 2014 in LCIS (Lobular Carcinoma In Situ)

My first time writing on "The Board".  I am 47 and I have been diagnosed with extensive LCIS in my left breast, after original findings of microcalcifications and ALH.  I am also fibrocystic and have had 2 previous biopsies in my 20's and 30's.

I have chosen to have a PBMX which unfortunately isn't scheduled until the end of July.  I was originally hoping for nipple sparing, but then thought if I am going to be proactive - then I should go all the way!  I was also fearful of the nipple tissue dying (necrosis, I believe).

I am now thinking of the nipple sparing again.  This is what happens when there is too much time, I suppose!  Also, the idea of this whole process not being completed for a year is daunting to me!  If I forgo the nipple reconstruction and tattooing - that will bring me to 4 months post surgery where I may start to look ahead!

Any comments, advise, words of wisdom would be greatly appreciated!

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  • Paula32
    Paula32 Member Posts: 12
    edited May 2013

    Hi Lucy.  I had my PBMX in September of 2011.  Like you, I had extensive LCIS in my left breast, plus ADH, and a few other atypical cells.  I was diagnosed in May of 2011, and decided on the surgery by the end of June.  The wait until September was tough.  I remember waking up in the recovery room, and just being so grateful that I no longer had to worry that there was something "lurking" in my breasts. 

    Because my biopsies showed more than just LCIS, (nothing invasive-no DCIS), I didn't feel comfortable with nipple sparing surgery.  I had immediate TRAM flap reconstructive surgery.  Then, 6 months later I had a surgical revision of my abdomen, a hysterectomy, and nipple reconstruction. 

    My biopsies during the mastectomy were more of the same results that I had gotten pre-op.  No hidden invasive cells.  So, I probably would have been fine with the nipple sparing, but at that point, I just wanted to be as low risk as I possibly could be.

    My plastic surgeon did an amazing job with the nipple recon.  But the only negative with the nipple removal is that there is not the same sensation I once had.  As I have told my husband and doctors, given the same choices again, I wouldn't change a thing.

    I wish you well with the wait.  Sending you positive energy and peace.  I am happy to answer any questions you may have about my experience;)  

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  • lucy1992
    lucy1992 Member Posts: 2
    edited May 2013

    Thank you so much, Paula! 

    I am very happy to hear that you have had a positive outcome and are happy with the results.  It is such a difficult process from beginning to end...diagnosis, waiting, recovery, etc.

    If you don't mind me asking...you mentioned not the same sensation as you once had - so you do have some sensation though?  That is also one of my concerns...do you also have some sensation in your breasts still or no?  I am choosing to have silicone implants.  Did you have silicone or saline?  Did you have the tattoos done after your nipple reconstruction or no?

    The idea of the tattoos for me is funny/odd!  I am not personally a tattoo person (though I appreciate the art)...my niece who sports a few laughed when I told her about the procedure.  Now we would have something else in common...however, I will not be showing mine off!!

    Thank you again for you time and the positive energy and peace being sent - it's much needed!  Wink

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  • SimplyAudrey
    SimplyAudrey Member Posts: 242
    edited May 2013

    Lucy,

    I had nipple sparing PBMX......and the sensation is MUCH reduced.  I did end up losing most of my right nipple (that was the breast most affected by LCIS and had excisions prior) but areola is still there, and still have my left, though it is stretched from the TE's and implants (sientra oval base profile cohesive silicone gel - went from 34 A+ to 34 C).

    If you talk to women who have breast reduction for non malignant reasons, many describe loss of sensation in the nipple.  Anytime an area is surgically manipulated there is a chance of loss of sensation. 

    Just something to be aware of.  To me the sensation loss is ok since I exchanged it for an incredible amount of peace of mind.  :)  Eventually I will venture to Baltimore to see Vinnie for 3 d tatts.  I am really impressed with his work!

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited May 2013

    lucy - I was originally a candidate for lumpectomy but chose nipple sparing BMX instead.  Since my surgeon was advocating for lumpectomy my nipple(s) would have still been there anyway.  Pathology was done on the cored nipple area and I am satisfied with the safety of the procedure.  My surgeon screens his nipple sparing patients for severl factors - your natural breasts can't been very large, they must have very little ptosis (droop), and the tumor must be away from the nipple/areola.  I was happy to wake up from surgery and have my own nipples, it made me miss my natural breasts less.  I have almst no feeling at all - I do have feeling in the cleavage, but absolutely nothing across the breast itself.  My incisions are in the IMF so if you are looking at me straight on, I have no incisions across the breast itself.  My surgeons do one-step, direct to implant, with nipple sparing also, but I went the expander route.

    Here is a link with some info:

    http://www.ncbi.nlm.nih.gov/pubmed/21385742

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  • Paula32
    Paula32 Member Posts: 12
    edited May 2013

    Hi again Lucy;)  I forgot to mention that I had a skin sparing mastectomy.  Because of that,  I have some sensation in the skin of my breasts, but the nipple is numb.  As Audrey said earlier, I am so relieved that I no longer have a high risk of invasive breast cancer that the trade-off of no nipple sensation is worth it.  Everyone is different, so there is no right or wrong decision. 

    My reconstruction surgery did not involve implants.  I opted for making my new breasts from abdominal muscle and fat.  The reason for that decision was that I have had allergies to different  things in the past, and I thought using my own tissue was safest for me. 

    My reconstructed nipples are very realistic looking, thanks to my very talented Plastic Surgeon:)  I have not yet had areolas tattoo'ed.  After having 2 major surgeries within 6 months, (the PBMX and recon, followed six months later with a total hysterectomy, and  nipple recon) I needed a break.  So far, it's not that important  to me, but who knows.  That may change!

    Still sending you positive thoughts.....take care.

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  • MammaShells
    MammaShells Member Posts: 53
    edited May 2013

    Hi Lucy, I'm 41 and like you had extensive LCIS, ADH and ALH and opted for a nipple sparing. The surgeons were able to biopsy the tissue in the nipple area during surgery and we agreed that if it came back clear we would go ahead with the nipple sparing. The tissue was clear and I am happy that I was able to have the NSM, I did lose some sensation but can feel hot and cold. It is a very personal choice, for me it made adjusting to the change in my body a bit easier. Feel free to PM if you have any questions at all.

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  • Crescent5
    Crescent5 Member Posts: 442
    edited May 2013

    I had nipple sparing. The girls look pretty much like my own with their original cherries on top. I have some feeling, but not close to the sensitivity I had previously. Very very glad to keep the nips.

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  • Pointvalue
    Pointvalue Member Posts: 146
    edited June 2013

    Hi Paula,



    I read that you had a hysterectomy after your pbmx. I am curious is this because of Lcis? I am thinking of having and Ooph. I have a significant family of bc. I also had a pbmx last summer. Lcis was found during pathology.



    Sending you happy thoughts!



    Elise



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  • Paula32
    Paula32 Member Posts: 12
    edited June 2013

    Hi Elise.  A few months after my bpmx, my plastic surgeon wanted to reinforce the abdominal mesh he had placed originally because of some weakness.   At that point, he said that if I ever needed to have a hysterectomy, it would be difficult because of the placement of the mesh.  Because of some pre-existing fibroids, and my age, (53 at the time) I opted to have a total hysterectomy. I had not gone through menopause yet.  Even though I do not have a strong family history of breast ca, that surgery has given me much peace of mind.  My gyno and breast surgeon were happy that I made that decision as well. 

    I wish you well Elise. I think that I would have opted for the ooph even had I not needed the hysterectomy.   Thanks for the happy thoughts-love them!

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  • auntiems3
    auntiems3 Member Posts: 67
    edited June 2013

    Hi Lucy,

    I had skin/nipple sparing PBMX on May 15th.  I had two lateral scars on the left breast from previous excisional biopsies one at 3 o'clock and one at 9 o'clock.  The right breast had two core biopsy scars.  I had ALH/LCIS in both breasts, and my last biopsy didn't get clear margins so I had 3 nodes removed from the right.

    My original breast size 36C minus. After reconstruction with tissue expanders, I hope to be a full C cup.  The breast surgeon consulted with the plastic surgeon prior to my procedure and they decided to go with a half moon cut over the top of the nipple and extend the incision across the breast towards the armpit utilizing one of the lateral scars I already had.....  Imagine drawing eyeliner across your top lid. 

    I am 4 weeks out and the results have been amazing and the recovery from TE's is a lot shorter than TRAM or DIEP flaps. ( I need to go back to work in late July/early August)  I need one more fill in July, and the final exchange to permanent implants will be in August.  Limitations are small.  No heavy housework or vacuuming, or mopping.  No lifting over 10 pounds.   Small loads of laundry,  no driving the until the week after the drains came out (they were the most difficult part of the process) I knew there would be loss of sensation, but, at 55, I can learn to adapt in exchange for piece of mind.  I do have feeling in the cleavage and over the tops of the breast. And the nips look good too!  I am happy with the results, minimum scarring and back to almost normal in a short period of time.

    My BS assurred me that nipple sparing for me was a very good route and made me feel confident in my choice.

    My DH and I planned this out for a year, I know how hard it is to wait, but being sure about which path to choose takes time, and when you find the right path for you, you will know.

    Best Wishes-Marie

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