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Nipple Sparing Mastectomy with immediate reconstruction

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Comments

  • vmudrow
    vmudrow Member Posts: 415
    edited May 2012

    Kate - I am doing great!!  It's been almost two years since I had my PBMX - went to the PS last week and he is very pleased - says the breasts had even softened more since he saw me 6 months ago.  I'm so sorry you are having more problems - you've had more than your share.  LE can be awful - I didn't have any nodes removed - so I'm assuming I can't get LE.  My mom had 20 nodes removed 22 years ago and she never got it - I guess she was lucky!!  Hope you can get some help with yours!!

  • fearlessfoot
    fearlessfoot Member Posts: 88
    edited May 2012

    Kate33: thank you for explaining about lifelong risk of LE! I had no idea. I had SNB during lumpectomy. I will be careful now thanks to your warning!

  • shawna32
    shawna32 Member Posts: 13
    edited May 2012

    Hi Ladies Thank you all for your insite..I had a appoitment with my ps this morning..I felt better from reading your comments before i left to even see him,,and you all were right,,everything is fine,,Im still hopeing to have these drains removed Friday.After I do get them removed how long untill i can wear something other than a button up shirt?..How long after they are removed do they do your first fill?

  • Kate33
    Kate33 Member Posts: 1,936
    edited May 2012

    I edited my post above. The site for Lymphedema info is stepup-speakout.com. (I originally put .org)

  • vmudrow
    vmudrow Member Posts: 415
    edited May 2012

    Yesterday had been two years since my PBMX!!!  Just wanted to thank everyone on here (especially you Kate) for all the info, help, discussions etc. - you have no idea how much it helped!!

     Hugs to everyone,

    Valerie

  • Sherryc
    Sherryc Member Posts: 4,503
    edited May 2012

    Shawna I think I was able to get a loose pull on shirt on about a week after I got my drains removed.  Just had to be careful about not raising the arms to high.

  • tinat
    tinat Member Posts: 2,235
    edited May 2012

    Sherryc - How are you doing?????

    Valerie - Congratulations!

  • Sherryc
    Sherryc Member Posts: 4,503
    edited May 2012

    Tina T I am doing great, thanks for asking.  I go for another fill on the 18th.  My nipples made it great and my scars look really good and for the most part I don't even notice that I have TE's in.  Of course my implants will have a much prettier shape but I am happy with everything so far.  Went to the MO last friday and he said my PS did an excellent job.  I thought so but it is nice to hear another professional who sees alot of different work comment on them.

  • Kate33
    Kate33 Member Posts: 1,936
    edited May 2012

    Valerie- You helped me as much as I helped you! Congratulations on 2 years out!

  • thatsvanity
    thatsvanity Member Posts: 51
    edited May 2012

    Hi Everyone,

    It is my one year anniversary since my nipple sparring elective mastectomy with alloderm and immediate reconstruction---no tissue expanders. My breasts are soft and doing fine, they are not perfectly matched but close enough for me too be happy. My left breast was the one that had a difficult time healing so it looks a little different than the right. As more time passes I am more and more unaware of the feeling that I have implants. They look excellent in clothes and swimsuits. I could have a little revision done, but I don't want to spend all summer healing from a surgery even if it is minor. It is more important that I lose 30-40 pounds ok 50 pounds,  than having surgery! I am grateful for the choice I made and I would not change my decision.

    Thanks for reading,

    Amy Lynn

  • tinat
    tinat Member Posts: 2,235
    edited May 2012

    Amy Lynn - Thanks so much for checking in.  It's so helpful and encouraging for women just embarking on this journey to know that there can be bumps (sometimes big ones) along the way, but there are also so many success stories out there.  Often the ones who are here posting are having problems and looking for help and those who have done well are trying to move on with life and aren't checking in here too often.

    I went the tissue expander route and it all didn't go according to plan, but I've had great surgeons that got me through it...in retrospect I wouldn't have done anything any differently.

    Thanks for the positive feedback!!!

  • thatsvanity
    thatsvanity Member Posts: 51
    edited May 2012

    Hi Tina t,

    You are correct I don't think a PBMX is a 100% sure bet that the end result will be perfect and without hurdles along the path, but we try and do our best and hang in there!

  • vmudrow
    vmudrow Member Posts: 415
    edited May 2012

    Amy Lyn

    Congrats on 1 year!!  There aren't many ladies on here that had PBMX for ALH - I too am happy with the outcome - it's been 2 years for me.  So glad you are doing well!

  • Kate33
    Kate33 Member Posts: 1,936
    edited May 2012
    This thread has become kind of quiet.  Hope that's a good sign that everyone's doing well!  Laughing
  • vmudrow
    vmudrow Member Posts: 415
    edited May 2012

    Hi Kate,

    I hope it's not quiet because doctors aren't doing nipple/sparing....

  • amom438
    amom438 Member Posts: 15
    edited May 2012
    I'll post something to waken it up, usually I just read but I got some good news this morning.

    I decided to go with a new Plastic Surgeon about a month ago. This morning at my appointment he said I was ready for exchange!!! Finally after 8 months to get this hard turtle shell off my chest is going to be fantastic. I have another 3 weeks to wait until my day but I am happy as can be.
  • Kate33
    Kate33 Member Posts: 1,936
    edited May 2012

    amom- That is wonderful news!  There's something about having a date you can circle on the calendar that makes it all bearable!

    Valerie- Have to admit I was wondering the same thing.   

    Not sure if any of you have joined Army of Women (armyofwomen.org) but they match up breast cancer researchers with women to take mostly surveys.  Their goal, unlike Komen, is to find the cause not the cure.  Anyway, just got selected to do a post BC survey by Duke.  They wanted to know things like your quality of life after treatment/surgery and things like that.  At the end you could add any additional info you wanted and I made sure to mention that more BS/PS's need to be trained in and promote NS.  That it had gone a long way towards emotionally accepting my MX.  This survey may be closed but I encourage all of you to join.  It takes very little time and researchers can have access to a broader pool of women. 

  • tinat
    tinat Member Posts: 2,235
    edited May 2012

    Kate - Thanks, I hadn't heard of this.....will check it out!

  • ginger48
    ginger48 Member Posts: 1,437
    edited May 2012

    Kate- we truly are in parallel lives. I just joined that survey too!

  • Kate33
    Kate33 Member Posts: 1,936
    edited May 2012

    Ginger- Yeah!  I thought some of the questions were interesting.  They really seemed to look at everything post BC- physical issues, emotional, body image, psychological and much more.  It's great to see them focusing on beyond the MX.  In addition to more surgeons trained in MX I also suggested they encourage counseling throughout the process particularly after treatment is completed when it seems more women are struggling emotionally.  That they automatically prescribe PT after MX to help prevent problems with frozen shoulder and other problems.  That cancer centers/hospitals have PS's on staff for recon rather than women having to go out on their own to find someone  (Some have this but not all.)  And that they educate patients on LE risk and prevention.  (Good thing they didn't limit me on the number of words I could submit, huh?)  I figured it was a perfect opportunity to ask for what we want.  I know it would be Utopia to expect it.  :)

  • ginger48
    ginger48 Member Posts: 1,437
    edited May 2012

    Kate- I have not opened mine up yet; waiting for when I have a little time to give to it but I agree with every point you made!

  • Sherryc
    Sherryc Member Posts: 4,503
    edited May 2012

    I am signed up with Army of Women but I did not receive that notice.  Maybe because I signed up way before my MX.  More surgeons need to do NS.  It took me 2 BS and 3 PS before I found one willing to try to save mine.  So glad I did as even my radiated nipple made it.  DH has been great through all of this but the one thing he could not wrap his head around was me not having nipples.  He said if mine failed and he had to deal with it he would but he just had a hard time imagining it.  Funny for me losing my breast was not a hard decision but I did not want to loose my nipples.

  • Kate33
    Kate33 Member Posts: 1,936
    edited May 2012

    Sherry- I wish surgeons could read your post and others on here and realize how important NS is for women. We should never have to fight for something that has been researched, is medically sound, less invasive, covered by insurance and provides such a benefit to a patient's healing and recovery. I'm glad you didn't give up and were able to have the surgery that was best for you and your DH.

  • dltnhm
    dltnhm Member Posts: 420
    edited May 2012

    So agree Kate33! Applause.

    I was thankful that my breast surgeon and plastic surgeon were in agreement to go for a SS NS mastectomy with my DIEP. Of course we knew going in that the NS depended on getting the clearest of margins in the nipple area - so a portion was sent to the lab while I was on the table to determine that there was a clear margin going into the nipple area. Since all the cards were laid on the table beforehand and all the i's were dotted and t's were crossed going in ... there were not going to be any surprises when I awoke. I would know if the nipple was absent it was because it was because they needed to clear it of cancer cells. I know these are difficult decisions and some women are not able to make them - but for me, it was the BEST decision and the BEST outcome!

    Blessings!

  • LISAMG
    LISAMG Member Posts: 28
    edited June 2012

    Nipple-sparing mastectomy: technical aspects and aesthetic outcomes.

    http://www.ncbi.nlm.nih.gov/pubmed/22531398

    Defining a Place for Nipple Sparing Mastectomy in Modern Breast Care: An Evidence Based Review.

    http://www.ncbi.nlm.nih.gov/pubmed/22284266

    Nipple-Sparing Mastectomy - Extended Indications and Limitations.

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3346171/?tool=pubmed

    Nipple-sparing mastectomy for prophylactic and therapeutic indications.

    http://www.ncbi.nlm.nih.gov/pubmed/21738086

  • tinat
    tinat Member Posts: 2,235
    edited June 2012

    I went to my hospital's cancer resource center today.  While in the waiting area I happened to pick up a Dept. of Health/NIH/NCI booklet (NIH Publication 04-5515) called "Surgery Choices for Women with Early-Stage Breast Cancer".  Not a mention of nipple-sparing surgery and I noticed it hasn't been updated since 2004!

    I sent a letter requesting that they please update this booklet.  Frustrating.......

  • Kate33
    Kate33 Member Posts: 1,936
    edited June 2012

    Tina- What really "chaps my hide" is what our own dear BCO has to say about NS-

    Subcutaneous ("nipple-sparing") mastectomy

    During subcutaneous ("nipple-sparing") mastectomy, all of the breast tissue is removed, but the nipple is left alone. Subcutaneous mastectomy is performed less often than simple or total mastectomy because more breast tissue is left behind afterwards that could later develop cancer. Some physicians have also reported that breast reconstruction after subcutaneous mastectomy can result in distortion and possibly numbness of the nipple. Because subcutaneous mastectomy is still an area of controversy among some physicians, your doctor may recommend simple or total mastectomy instead.

    I'm sorry, but if I were a woman recently dx the way this is worded would scare me away from having NS.  I feel like this is outdated information. 

  • Kate33
    Kate33 Member Posts: 1,936
    edited June 2012

    LISAMG- Thanks for the links.  Very interesting reading especially the first one which talks about a higher rate of nipple necrosis when the BS takes the incision around the areola.  Personally, I've never understood why they do this at all.  If you're trying to maintain blood supply to the nipple, and it's already in a fragile state, why place a new incision so close to it?  And if the whole reason for trying to preserve our nipples is to feel less disfigured why give a woman an additional scar?  The one I really don't understand, though, is taking the incision right through the center of the breast and then around the areola.  Unless a woman is very large breasted it makes so much more sense to place the incision in the IF where it is much less obvious.

    I had my MX at the Arizona Cancer Center in Tucson and at my last visit with my BS she said they are doing more research into expanding the parameters of who are candidates for NS with great success.  (Personally, I've never understood the difference between leaving the skin of the nipple behind and leaving skin behind.  If the nipple is cored out, and all the ducting leading to the nipple is removed, how can it be any more dangerous than leaving the entire skin of the breast behind?)  I think it's wonderful that more surgeons are realizing the important of NS but we still have a long ways to go.   

  • dobie
    dobie Member Posts: 279
    edited June 2012

    I had NS UmX on 5/17 and am doing well. Even though this breast had been radiated 5 years ago, nipple seems to be surviving well. Here's my issue : final path report shows LCIS in nipple tissue and I have been advised to have the nipple removed. Like Sherryc, I was more upset about the possibility of losing my nipple than my breast, so I was thrilled with option of NS and now pretty darned disappointed. Anyone have any other experience, knowledge or opinion about this situation? The actual ILC was far from nipple.

  • dltnhm
    dltnhm Member Posts: 420
    edited June 2012

    Dobie, did the surgeon have the lab look at your nipple tissue while you were having your mastectomy ? My pathology while under for my SS NS UMX with DIEP reconstruction showed clear pathology for my nipple. If it had showed any sign of cancer I had signed off on having my nipple and areola removed.

    Was it that your pathology on the table showed clean and the final actually changed? That would be hard to deal with. Personally if it were me, the nipple and areola would be removed if I were facing what you gave reported. Those are cancer cells the path report is revealing to you and how could the surgeon have left a clean margin in that area (which id different from the initial tumor site) if there is LCIS? Wouldn't gamble with that at all.

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