Nipple Sparing Mastectomy with immediate reconstruction
Comments
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Sandy105: Yahoo for your team!!!
One of the heroines in my journey has been my local BS. She did a surgical breast biopsy on me in 2009 and was the one actually able to get an MRI authorized for me last year after 3 other docs tried (well, one tried and two weren't really willing) - no family hx, no abnormal mammo findings, no lumps felt - I just WANTED one because of dense breast tissue and crappy, useless mammograms. She is also the one I saw when two cancers were found on that MRI. In a fog and trusting her completely, I was ready to do whatever she recommended. I will be forever grateful to her for coming through for me again by "sending me away" to San Francisco because she knew I was a good candidate for NSM.
From what I remember her saying, NSM is not offered here not because the breast surgeons aren't interested or willing, but because there are no plastic surgeons here who can offer the full gamut of reconstruction options (DIEP, etc). I did have a consult with one of the local PS while in my info-gathering phase and he told me that the microsurgery equipment is not available here to do flap surgeries. So, sounds like a complex program needs to be put in place, both equipment and the experienced microsurgeons/plastic surgeons to use it. I don't know if it would work to tell patients they can have NSM, but only if they choose implant reconstruction. The autologous reconstruction options seem to be the hangup here.
I am 11 weeks out and still dealing with surgical healing issues so I am NOT the poster girl for NSM. I haven't even had an outpatient TE fill yet. One breast looks great and the other will be fine once the PS does a little tweaking (had some necrosis of part of the nipple and some adjacent skin). Still, I would do it the same way (well, maybe I'll skip the blue dye necrosis part). I intend to offer myself as a reference to my local BS for anyone woman who has questions about NSM.
Sorry for the long post. Can you tell that we're passionate about this cause? Have a great day everyone!!!
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Sandy- It wouldn't hurt to call your local newspaper or t.v. station and give them heads up on your campaign. They are always looking for good human interest stories and this would be an excellent one. Just a suggestion!
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Hi guys! Geez, I need to catch up! Sorry it has been so long since I wrote in. I have been in babyland these days. Currently I am 20 weeks prego now and I have to report that I totally have feeling in my nipples even more with this pregnancy. Don't know if that is a good thing or a bad thing but I don't have any boob soreness, just nipple soreness! Crazy huh? Anywho, I just wanted to say hi to everyone and hope that everyone is doing great. It will be a year this week since my NSM already. I guess I went from pink for a bad reason to pink for a good reason as I should report to you all that I am having a little girl!
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Hi Hurleygirly! Love your photo. It is too cute! Glad all is well with you and the baby. Can't believe you have sensation. That is so great! (Never thought we'd be all happy about nipple soreness, hun? What a bizarro world BC is! LOL!) Keep taking care of yourself and the baby bump. She'll be here before you know it! (((hugs)))
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hurleygirly - super news! I am so happy to hear you are feeling well, pregnant with a girl (I have two daughters so I may be partial - loooove baby girl clothes:-) and nipple sensation to top it all off! Really, it is bizarre how things like nip sensation become so life-altering after BC, very happy for you!
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Cheynenna-I wasn't told about NSM either. I learned it about by my research online and on BC.org. I was scheduled for a SSM and at the last minute found a BS and PS who did the NSM in my area who were also top notch surgeons. I get very upset that women are not offered every option available to them so they can make the most informed choice. It just seems odd that a patient has to approach a Dr and ask them if the can do something. I found the reason most Dr's don't mention it is because they don't do them. The girls gave you great advice about what a NSM is. Try to find a Dr in your area and talk to him/her about it.
Sandy-I totally agree with you. Love the idea of the shirt. I hope the word gets out there. I am doing a BC walk/race this weekend and I wish I had one of those to wear.
Tina-I know you've been having a hard time, but hang in there. It sounds like your Dr's are excellent and are keeping things under control for you. Just concentrate on letting your body heal and once it does you can proceed with the the fills. I relate to your issues, because mine were somewhat similar and eventually everything turned out fine.
Hurleygirl-Hey! So good to hear from you. It's been about a year for me too since my NS BMX. I remember talking to you when we were both going through it. So happy your doing well with your pregnancy and a little girl, wow! My first was a little girl and it is so much fun having a girl. It's great your having some feeling in the nips too. That's pretty amazing. I don't have any what so ever. I think you must have had some incredible docs over there because you don't look like you had a MX at all. Keep us posted on how your doing.
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TinaT - don't feel bad I haven't had a fill yet either and it has been 25 weeks! I too had necrosis issues, 3 surgeries to fix that (along with NS/BMX and AND) and finally the loss of the left TE (that is why no fills) but I was fortunate that my necrosis was related more to the alloderm and TE itself and now that both are out I am completely healed without losing the nipple. The scarring on the lower part of the breast will resolve and I think the result will be good. I have been in chemo since mid-Feb but the TE will go back in sometime in late June and then let the fills commence!
I was fortunate that the first BS I was referred to by my insurance company was a nipple sparing advocate and a great deal of his practice consists of this type of surgery. He has hand-picked PS's to work with him in the OR and definitely informs patients if they are good candidates. He even has a NS slide show prepared for patients to watch on the wall-mounted computer monitors in the exam rooms. He also does port placement if you will require chemo at the time of mastectomy so you don't need another surgery, and he does the IF incision.
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hurleygirly: Congratulations - it's always great to hear happy news!
I'm just curious...have you had nipple sensation all along or did it take a while to return? One of my nipples didn't completely survive the surgery and the PS keeps saying it would be an easy tweek to even them up down the road. I initially thought I had some feeling in the inact nipple, but nothing now. I'm reluctant to have it reduced to match the other if that will further decrease the chance of getting some sensation. So - I'm trying to decide whether to choose symmetry and have even less chance of feeling because they'll both have been messed with or to wait it out with unmatched nipples waiting for something to happen.
Anyone else have a nipple-sensation success story to share to give me some hope?
Again - congrats!!! Take good care of yourself!
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Hurleygirl - So glad to hear you are doing well - Congratulations on a baby girl!!! That is so exciting - so when are you due?
Sandy105 - I am going to the Komen Race for the Cure this Saturday - wish I had one of your T-Shirts to wear - I really don't think enough ladies know about NSM - wish I would have thought about it sooner - maybe I could wear a sign or something - oh that might be too weird
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Hey Kate! I seriously was thinking today, "omg...I haven't been on BCO in ages..must catch up!". I am halfway through already! Yahoo! Hope you are doing great. It is super warm here is CA today...are you getting the heat in AZ?
Anne,
Yes..I purposely chose the double mastectomy route with no Tamoxifen so that I could attempt getting prego. I would have been over 40 when I was cleared to start trying if I went the other route and I wasn't willing to wait until then. In hindsight, choosing the NSM was the best decision I have made. I think this disease really scares the heck out of us but when we stay focused on the positive and how good our odds really are, we can attempt to get prego! Don't get my wrong though...I will be relieved when my estrogen drops right after giving birth! LOLFiredancer,
Yes, my obsession with the pink clothes has begun! Too many cute things out there! I will be broke for sure!Sweetie,
Good to hear from you! I hope you are doing great. How a year changes us huh? It is a bit weird how I am getting more sensation with the pregnancy. I had some before but now I REALLY notice it because it is a soreness. I have to say though that I am enjoying not having painful boobs that get uncomfortable and big during pregnancy. It's funny because I keep getting my friends asking me if I am going to breast feed and I just look at them and say, "Hello? Don't you remember visiting me last year? Silicone people..silicone!" Hahahaha.... -
SpecialK: Wow, I don't feel so lonely being left behind now
. Glad to hear that your surgeon advocates NSM. I hope you are back on track soon! Hopefully, just a few more weeks of healing for me then we can refill this TE and get back to the starting gate! Shall we race?Even though I'm weary of the weekly 6-hour roundtrips (sometimes twice a week!) for the problem side I'm still awestruck whenever I look at the breast that pulled through like a champ. It's had nothing done since the TE and 325cc put in at surgery. From day 1 it has looked like a slightly smaller carbon copy of the original. Every woman should have the opportunity for this surgery if they are a candidate!
Thanks to all for your encouraging words! My PS has been great and very positive about my final outcome, but it's great to hear success stories from people who have actually gone through it.
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TinaT - I think you will beat me! However, I will be interested to hear how things go for you. Before I began chemo I had an appt at the PS and another patient was behind me while I was talking to the receptionist. She left the office just behind me and approached - she apologized for eavesdroppong but had her TE out due to an infection and wanted to tell me that once she finished chemo had it put back and that it all turned out so great. She didn't want me to worry and she reassured me that the aesthetic result was very good. I thought that was nice of her and it did make me feel better - this was right after my left one was removed and it was not so nice looking. I had a decent looking side and a raisin side!
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Ladies,
Thank you all for the inspiration to continue to recruit runners for this cause! I learned a bit ago we are now at 62 and climbling toward the 100 goal. We have a number of young college women and men who are running! While it is certainly true, not every woman's nipples can be saved, it is also true every woman has a right to know about NSM and to be evaluated for suitability by a competent surgeon.
The first designs for the shirts were done with paint pens! The actual shirts really won't be all that different. Those going to races this weekend could always design a shirt using a pink tee and black and white paint pens.
Hugs to All, Sandy
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Tina
I had sensation in spots at first, but it was always a dull sensation not like it was prior to surgery. I did feel that after some time, I did get back more sensation and then when I became prego, I noticed even more. I definitely don't feel like I have numb boobs or nipples...just areas that are and I don't have the sensation like it was before surgery. A lot of my girlfriends who had just augmentation done actually have numb spots as well. I have to catch up but did you lose one nipple entirely or did a portion of it die? I can say that since being prego, my areola area and nipples have gotten bigger! I read on Baby Center that it is common for this to happen but for some reason, I assumed it wouldn't happen to me. I also read that they shrink back down after giving birth so I will see what happens. Now I have headlights! Never had that before! LOLVmudrow
Good to hear from you! It has been awhile. I am due in September. Ironically..I am due pretty much a year to the day of my exchange surgery. I haven't forgotten about everyone..but I have to say that I haven't been thinking about BC lately...I guess that is a good thing, but it seems sureal to even think back to what happened a year ago. I've been feeling good, despite my horrible First Trimester. Never wanna do that again! The second has been great although I am totally showing now and I know that I won't be able to see my shoes soon! Still wearing heels though! LOL How have you been?To ladies who are about to get your NSMs. In hindsight, I can honestly say that it was the best decision I have made and now I focus on what is to come in the future as opposed to worrying about a relapse. I know it CAN happen but my mind won't go there and I have absolutely no regrets! I hope everyone will stay strong and know that there is a light at the end of that horrible tunnel! Much love to you all!
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hurleygirly: My tissue reacted very badly to the methylene blue dye used for the sentinel node injection. I developed necrosis in about the outer 1/4 of the nipple and several patches of skin adjacent and lost that tissue. The other breast looks great, no problems at all. It's been almost three months with no progress on the reconstruction front.
I am so grateful, though, that the wounds never went through all the skin layers so I got to keep the TEs. And, no infection! So, it hasn't been fun, but it could definitely be worse.
Night all!
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Tina-my Dr kept telling me after I lost part of my nipple that he would do something to "tweak" it-(funny word when talking about nipples) but as time went on we decided to leave well enough alone because the skin there is very thin and he didn't want to risk trying anything on it that might compromise it. He didn't suggest altering the other one to match that one either. I think he takes a conservative approach. After awhile though it didn't really bother me. I was just happy with whatever part of me I could keep. He said he could tattoo it to match better because it is a lighter color,but I'm not sure I'd even do that. I'd be interested in what your Dr suggests though because if there is a good way to fix it without compromising it I'd look into it.
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sweetie2040: It's going to be a good long while before I'm finished, but I'll keep you posted.
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Hurleygirly: So good to hear from you! Please keep us updated on your progress with your pregnancy. I'd LOVE to see pictures when you have the baby. Good to hear about the increased sensation in the nipples too.
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Tina: Oh I am sorry to hear about what happened to that one side. I haven't been on here since Jan and have missed your posts. I was thinking the same thing as Sweetie's doc about maybe doing some tattooing on that one. Did you happen to post picts at all? I haven't been on there either these days. Gosh, I wish everyone lived near me because not only does my ps do breast reconstruction but she does burn reconstruction and I have so much faith in her to work wonders.
I had no idea that the die they use could cause a bad reaction. I didn't have the SNB but yet my bs told me he did indeed take out the sentinal node. How he did so without do the SNB is beyond me, but he assures me to this day that he knew which one it was. Weird huh?
cc4npg: Good to hear from you too! My stomach is bigger that my boobs now! LOL
I will def post some picts when I get some. Today I had a checkup and we heard the heartbeat. There were these loud thumps and my obgyn says to me, "well you have a very active one in there". Those thumps were kicks! Oh and ladies...you probably already saw this new report tht came out of Vanderbilt a few months back (I think it was Vanderbilt)...about soy now being good for bc? It was 50/50 for awhile and so we didn't know whether we should cut it out of our diets or go soy crazy. Studies are now showing it is indeed good for us so we can eat edamme once again! Yeah!
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hurleygirly - today May 6th is our 1 year "Fooberversary"!! So glad this past year is behind us and next year you will have a cute baby girl! And I doubt your stomach will ever be "big".
Is anybody on here that is going to the get together in Vegas - not sure if I want to be the only NSM...
hugs to everyone, Valerie
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Valerie- When is the get together in Vegas and when do you have to commit (i.e. non-refundable reservations)? I'd love to go and meet everyone in person!
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I didn't know anything about this Las Vegas trip! Is it open to all with NSM? I would love to go and have the chance to meet all you wonderful ladies in person!
Sandy
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Kate and Sandy -
It's under the thread "The 3rd Ta Tas Sisterhood Reunion in Vegas Baby" The dates are Sept. 30-Oct 3, 2011. They wanted reservations by March - but they are staying at the Mirage and some other ladies are staying elsewhere - they have some gete togethers planned. I asked and they said all are welcome, I think I'm the only NSM that's asked about it. It is only a 6 hour drive for me - so I don't really have to commit yet. It would be fun to meet all you guys!!
Kate - I think we were talking about it last year weren't we? This is the 3rd year they have had it.
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First I've heard about it too, but I'm not subscribed to that thread. Interesting... but not sure if we'll be in the area at that time. No one's having anything near Los Angeles later in the year are they? We usually go there once a year to visit family...
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Vmudrow, Happy FOOBERSARY to you too! Does that mean we can check off a year in being cancer free? This calls for a drink...oh darn no alcohol for me! LOL
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so I have a question --I am small - almost an A cup - my right breast is the SOB (stupid old boob) with the cancer... my surgeon will take out 5cm which i think is like the size of one of those little Cutie oranges, and she does do NSS and SSS if possible. I am thinking about going ahead and increasing the size of my breasts to close to a B cup (I know they cannot determine exact size) -- has anyone else had experience with a mastectomy and reconstruction on one breast and then augmentation on the other to make both slightly larger than before? Do they always look different from one another?
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vhshea- There's a member on here called MBJ and I think that is what she had done. You could PM her and ask. She's really nice so would be happy to help you I know!
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vhshea: I can't help you with the "matching" question because I had bilateral surgery. However, check out both the TE (tissue expander) and Exchange threads. You'll find women going through every conceivable combination - going bigger, going smaller, augmentation and reduction of the non-cancer side, etc.
Good luck!!!
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Thanks Kate - I've sent a PM to MBJ...
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TinaT -- Good suggestion - so many topics (never wanted to know this much about this stuff, ya know?)... i will check them out..
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