Nipple Sparing Mastectomy with immediate reconstruction
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Hey everyone! My PS finally e-mailed me my photos so they are up on the picture forum. Better late than never!
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VIDEO: Nipple Sparing Mastectomy by the Mayo Clinic
http://www.youtube.com/watch?v=hJk1K_0pXt8Hope this is helpful to anyone interested in what is IMO a revolutionary procedure.
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whitedove- What happened to the link you just posted?
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Kate Wishing you the very best!!!
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WD- My NSM photos are on the picture forum if anyone is interested. You were lucky your BS recommended it. My first surgeon never told me about it. I had to find out on my own. And then when I asked her about it she tried to talk me out of it. I found out she wasn't even trained in the procedure. After I found out, from a surgeon who did do them, that I was an excellent candidate I was extremely pissed off at my first surgeon. If I had listened to her my nips would be laying in a land fill somewhere.
3 DAYS, 10 1/2 HOURS, 40 MINUTES UNTIL MY EXCHANGE!!!!! Yippee Squishee here I come!!! (Not that I'm excited or anything! Thanks for asking!)
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OK, I have to vent. Some woman on another thread, who had her MX in '06, is telling me (and everyone else that's reading) that NSM is very risky and that continued follow up is required. When I told her current research shows the rate of recurrence is EXACTLY the same for MX and NSM she continues to argue with me. I wanted to tell her maybe she should talk to the hundreds of "high risk" patients on this thread who are perfectly fine and happy with their nips intact! Ignorant people shouldn't post!
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If she won't believe me maybe she'll believe the Mayo Clinic!
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Nipples laying in a landfill.
***Shudders***0 -
2006 and 2010 are light years apart.
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It is not totally factual to say that the risk is higher with NSM and thus leads to surgeons not undertaking the procedure. I would hope future recipients contemplating this do not get discouraged by that. It is also untrue that NSM recipients need constant monitoring after surgery.
http://www.ncbi.nlm.nih.gov/pubmed/18291263
Nipple Sparing & Skin Sparing Mastectomy with Immediate Breast Reconstruction is safe with a comparatively low local recurrence rate and the same distant recurrence rate as for breast conserving surgery and total mastectomy. Moreover, it results in objective cosmetic outcome and patient satisfaction as good as those for breast conserving surgery, and greater patient satisfaction with body image than that for total mastectomy.
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Whitedove and Kate33- I agree with you about the NSM. This was one of the first threads I went on when I joined BC.org and basically how I learned about NSM. Many women ARE good candidates and the procedure is safe for them. There is also a lot of protocol that goes into place during surgery like if you have a node involved, they WILL remove the nipple. The problem I think is that a lot of Dr's just are not doing these and for them it 's easier to just keep doing things the way they always did instead of being trained on a new procedure. I couldn't find anyone in my area who did them until the last minute I got lot lucky and found out an excellent Dr. who was already in the practice I was going to (had another Dr first who refused to do it) just started to doing them with an excellent PS also in the practice. They were both excited about the procedure are a talking like it is a future option for many patients. I might add my PS also participates in the gummie study. When you go through this it is hard enough and the worst thing is NOT having options. I think the more options we have the more empowered we can feel and have some sense of control over what is happening to us. To me having my nipples meant a lot. Even though I lost part of one I still have the shape,color and size of both and I feel more like me. To me having these choices made all the difference in the world. Before I knew I had this choice I was totally distraught and heartbroken. Being given back just this little thing was a big part of my restoration
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Kate33-Good luck with your surgery! You must be sooo excited. We'll be thinking of you!
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sweetie2040- What a great post! I started another thread called "Please Read If You Are Considering a Preventative MX". I figured, if nothing else, get the word out to women who don't have BC yet but may have a MX. Most of them would be excellent candidates for NSM. Since you found out about the procedure by coming on here there must be lots of other women who don't know about the procedure, either. I wanted to copy your post word for word and put it on the other thread.
Yesterday a woman was posting inaccurate information on it saying keeping your nipples put you at a higher risk and that those that had NSM would need to be followed up continually. When I told her that her facts were wrong she wouldn't believe me. White Dove posted a kick ass rebuttal to her, though. Thanks White Dove!!!
My DH says I am trying to save the world one nipple at a time and maybe he is right! It just kills me, though, that any woman would lose her nipples because of ignorance or bad information.
I agree with you that having options empowers us. When I found out about NSM's I knew I had to find out if I was a candidate from a surgeon who actually did them. If I found out I wasn't then at least I knew that I had done everything possible to get the results I wanted. And, like you, I feel more like me having been able to keep my nipples, too.
I have posted a link on that thread to this one (per White Dove's suggestion) so I'm hoping it will spark some curiosity in other women and, who knows, maybe save a nip or two!
Thanks for the good luck wishes!
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"There is also a lot of protocol that goes into place during surgery like if you have a node involved, they WILL remove the nipple."
Not at my hospital (UCSF)- I had node involvement early on and went into surgery not knowing whether it was cleared up or not but if it was not, they were not going to change the NSM plan, just advise rads after surgery. They decide who is a candidate by the distance of the cancer from the nipple, but I get the impression they're able to do them for the maority of their early stage patients.
For the record my TEs look pretty weird and not so attractive but my nipples look TERRIFIC- I will post on the picture forum sometime soon.
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Kate33, good luck on your upcoming surgery. I also posted on your site. I have found that when I run into a woman who has had the total mx and not the skin sparing/nipple sparing, I am immediately cut off with comments like " well I didn't want to have to worry about it anymore" or "my surgeon wanted to save my life" and "I didn't want to leave anything behind" etc. etc. Its like they think I had a lumpectomy. I dont' rebuttal with this because I dont want the person who was already comfortable with their decision to second guess anything but my only wish would be for the next person to know the option, which is what you are doing on the site you posted on. I would like those woman who have had the total mx, to be able to say to who they are mentoring, I had this procedure but there is another procedure to look into and to validate the NSM.
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HI,
I had same dx as your had a lumpectomy las year and opt out radiation.
Did your doctor gave you the option of lumpectomy and rads , was mx the only choice? I was just wondering. My doc is in NY, Sloan Kettering. Where did you have your surgery?
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PB22- I wish they would say that, too. The challenge on this site is that you have women who had their MX 10 years ago and other who had it last week. Their experiences are going to be completely different. I just wish those who had theirs years ago would offer support but not medical information because it is outdated. Thank you for posting, by the way. It was very well written. I appreciate you sharing your experience. I did have someone PM me and say she didn't even know NSM's existed and now, because of what we have written, she is going to change her surgery and find someone who is qualified. I figured if even one women didn't lose her nipples because of reading our posts than I'm happy.
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good luck with your exchange Kate..I am going in on July 6 for a revision of my TE. Guess I need a larger TE so that when my PS augments my natural side, it wont appear larger than my mx side.
Glad your gonna be squishy soon...woooo!!!!!
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Kate, great idea for a new thread, I'm going to head over now and check it out! Best wishes to you on your exchange, you will be in my thoughts and prayers.
SOGNY, Yes, my doctor did recommend lumpectomy with radiation. Actually, that was his first choice, but he also discussed my other option, which was NSM. I have many reasons for my decision to do the NSM, most of which I have posted previously on this thread. I had mine done in Chattanooga, TN. If you are curious about where they are done in your area, we have a link posted at the top of the page that PB started, "where are nipple sparing procedures done". How did your doctor feel about you opting out of radiation? Did he offer you other choices?
PB, Well put!
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twirlandcurl- Thanks so much and thanks for posting on my photo thread. I am sorry you have to have a TE revision but I know the end results will make it all worth it. Good luck with your surgery as well.
TNLady- Thanks for your comments about the other thread. I do wonder if I should rename it or start another that says "Please read if any of you are considering MX". I'm afraid I may be missing those with DCIS, IDC, etc.
Well everyone, I think I have started that pre-exchange nesting today. I've got my post-op prescriptions already filled, the fridge is loaded with Vitamin water, I'm running like 10 loads of laundry, organizing sock drawers and just generally getting my "nest" in order. Tomorrow I will treat myself to a mani, pedi and facial before surgery on Tuesday. (Have to look pretty going into the OR, after all! LOL!)
Hope everyone is having a wonderful weekend!
Kate
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SOGNY: To answer your question, I initially presented with a DCIS from mammographyand was given the option of lumpectomy and radiation and sent to have an MRI to see if there was anything else present before seeing the radiologist. The mri showed another cancer very small making it multifocal, still in same quandrant but would require a larger quandraectomy instead of the lumpectomy with full breast radiation instead of the seed type-local. I figured I would require reconstruction to fill in this quandranectomy and it would have been on radiated tissue so opted for the nipple sparing mx with no regrets.
If you look toward the future, if quandrectomy w radiation was chosen, I would have had continue reconstructions and more for the symetry on radiated tissue, lifetime follow ups w mammograms and a future of biopsies, contralateral breast occurance, worry over an long term effects of the full breast radiation, and I think more worry being breast tissue is remaining and if it mutated to a more aggressive cancer 10 years down the road. With the bilateral mx, eliminated most of the above except the reoccurance worry which is no more than the healthy individual. I can sleep at night thinking I did what I could do, now I have to exercise and be health conscious with my diet and show up for followup appts with onc.
The draw back would be losing the nipple sensitivity.
My surgery was in West Palm Beach,
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Kate~I've been off the thread for a week or so...chemo
.. but I've been trying to read and catch up on everyone! I can't believe it's time for your exchange surgery already! Congrats! Oh- also, Happy belated birthday! What a fantastic birthday present! I'm hoping for the same timing myself; to be done with chemo in August, and scheduled for exchange in Sept. (my birthday is in mid- Sept.)! My first round was last wk...so far I've felt great, no side-effects @ all. I'm doing THx12(weekly) which is dose dense. My MO is great, I love her. She's been awesome. My 2nd round is Tues, hopefully I'll continue to have great results with no se's! I have one more fill and will be @ 425cc's and will just have to do the waiting game til chemo is over. My PC said the break will do me good anyway. They're looking great; I have very little scaring. I need to get on and post some pics...how do I go about doing this? He said he was going to make me his poster child when he was done! lol! Not exactly the poster child I invisioned being when I grew up! haha!Hurleygirl~ How are you? How are the fills coming along? You should be almost done or pretty close! Any exchange dates on the calender?
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GA girl - So happy for you that you are finishing chemo in Aug and that you look so good! Glad that you are a poster-child for great results with your NMS.
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Skin Sparing Nipple Sparing The New Standard of Care.
Skin Sparing Mastectomies. Prettier Breasts. Equal Risks.
Wow. Did anyone know that Cedars-Sinai had this?
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Hey guys...I'm back. Went away this weekend to celebrate our 1 year anniversary. Gotta tell all you girls that I rocked the bikini this weekend with the expanders...hahaha! I did catch a few women starting at my boobs...I think they just think I had a crazy boob job!
So, I feel like I have missed so much. There are some definite "nipple sparing haters" out there. Maybe not haters but a lot of women who love to point out the innacurate points about something they really have absolutely no experience with. I guess that is why I tend to stick with out thread since we all have gone through it and have been educated from our own oncologists and surgeons. Reading info on the internet can only get us so far, especially when a lot of studies were from a few years back.
Kate, I wish you the best with your exchange. I am super excited for you!
GAgirl, Glad to see you again and that is awesome that your chemo won't be lasting too much longer! You are ahead of me with your fills as I am at 270 and this upcoming Friday, get yet another fill ( I am going to guess maybe 50-60ccs more). I don't think my ps needs to over expand me. I think I am going the same size as Kate (375) and I don't have a date set but would guess that late August will probably be exchange time. How time flies by! I didn't think that it would.
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GAgirl01- Thank you so much for your post. I am feeling the love from you girls this week! So glad your chemo is going so well with no SE's! That is awesome and I hope it continues. Also, hoping the Boob Fairy comes for your birthday as well!
As far as posting on the pic forum, there is a thread on there that explains it step by step and it is pretty easy. I do know some times you have to resize your photos, which I didn't have to do, but I''m guessing they tell you how to do that as well. Good luck!
TNLady- I second WhiteDove and say thanks for starting this thread. I have "met" so many wonderful women who have really gotten me through these past 4 months.
hurleygirly- I am sure you totally rocked the bikini because I have seem your photos and you look frickin' AMAZING. No one would even be able to tell you have TE's and if women were staring it's because they are jealous of how gorgeous you, and your DH, are! Thanks for the PM you sent. I'm feeling really good about my decision of 375 cc's.
OK, everyone, I am going to start getting emotional if I stay on this site much longer today. Just want to say I love all of you so much. You have been my lifeline the past 4 months and have gotten me to my day of exchange much saner and more whole than I would have been without you. This site is a Godsend and you are all angels!!!
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http://www.medicalnewstoday.com/printerfriendlynews.php?newsid=185630
"Increased use of these modern, reconstructive surgery concepts will result in a decreased use of standard, centuries old 'cut across the chest' incisions causing severe disfigurement and long-lasting emotional distress for cancer patients. These are the most modern aesthetic techniques and principles that can be applied with the same rigor as is given to the treatment of cancer, and combined can result in a more satisfying outcome."
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Kate33: I wish you a speedy recovery from your exchange tomorrow! I hope it goes smoothly with no complications.
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Just had to get one more visit in before heading to bed!
whitedove and bcincolorado- Thanks for the good thoughts!
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