Nipple Sparing Mastectomy with immediate reconstruction
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Sweetie, sorry to hear about your disappointing visit with the surgeon. I had a lot of frustration too, which I wrote about either on this thread or the March mastectomy thread, I can't remember. My plastic surgeon seemed to lean away from doing the nipple sparing and my breast surgeon recommended it. I was going nuts! Finally I had the bs speak to the ps and they did the nipple sparing. My BS said that it's a new procedure and that surgeons aren't as comfortable with it, but that it's extremely rare for cancer to spread to the nipple. He said he's been asking for 10 years why surgeons are taking nipples. My doctors are in NYC, I think you should consult with them. Of course you are mentally and physically exhausted. Could you take a break and then maybe next week call for an appt? It is crazy making, that they are recommending a lumpectomy and keeping your nipple and you are interested in a mastectomy and keeping your nipple, but they have a problem with that. If you are interested I will give you my doctor's names.
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Sweetie: I too am sorry it was a disappointing/difficult meeting. It does seem as though the nipple sparing surgery is "controversial" for many. Although my PS has had a lot of experience with this, my BS was only "willing" to do it for the past year (it is interesting to me that it was phrased that way) To be fair it is too soon for me to say how it has worked out, but I think they look great and after my exchange next week i'll know better. Of course you are exhausted! You'll know when you are ready to look into it again but dont give up! You have a right to all the information and options. Oh and by the way I so agree: I had ADH and ALH: far from nothing, it was what tipped the scale and made me go ahead and have the bmx!----Kathy
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Oh Sweetie: You need to slow down on this and take your time and not rush into anything. As there is plenty of time after the surgery to play monday morning quarterback. There are so much emotions and ups and downs and hormones etc. being effected that you will always be second guessing. You need to find someone who does it and then tells you , your not a candidate before you move on
. Do you want to come to Fl? I can assist you down here with a consult. PM me if you would consider it. You can tan up like Fairport .You don't have to have the procedure here but find out if you are a candidate. Think about it. For me, no chemo, BRAC neg. Precancerous on the good side. Where is your invasive Ca located and is it the only one? In a lumpectomy often the doc can manually move the fat around so that there is no divit.
Seems like we should start a thread on what cities do this surgery.
Fairport, did you have your surgery in Rochester?
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Sweetie, as others have suggested, I will also strongly recommend seeking the opinion of a nipple sparing breast oncology surgeon to make a fully informed decision, especially if YOU may want this for yourself. There are LOTS of highly qualified/skilled surgeons performing these procedures in highly regarded institutions located in NY, not so far away. Reconstruction with NS has amazing safe outcomes for many women, especially when choosing a plastic surgeon who works on a regular consistent basis with the BS...a true team effort. I would be happy to provide names as well. Feel free to PM me anytime.
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Sweetie- My local BS was adamant about not saving the nipples, gave me reasons why, etc. So, I just assumed that was what it was, that her stats were accurate and moved on with my decision to have a bmx, no nipples. Then, I went to have my procedure in New Orleans and the PS talked to me about the bmx and recon, assuming I wanted to keep my nipples. Honestly, I'd not thought of it one time after my BS told me it was not possible. This new PS startled me. I asked him why he thought it would be OK, but my local BS told me it was unsafe. He said it's been the standard position for years that one would not save nipples. Now, they have criteria for safety, and they core out the nipple and get a path report on it to make sure, so they feel pretty good about the safety concerns. Still, I was not convinced. Then, we met with the BS there and asked her what she knew. She said for years she was against the nipple sparing technique, since she'd been trained against it. However, over the past couple years, she's become a convert. So, yes, this is really new and I think it takes some convincing and extra training for them to feel comfortable with it. You wouldn't want someone doing it who did not understand the full protective measures. You'd want someone who really knew their stuff. Is your area 10 cm away from your nipple? As I recall, this is the first requirement.
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,Sweetie...I had my surgery in Rochester, would be so happy to have you here: I could get you an appointment with my BS: not pushing you , you are exhausted but welcome when you are ready!
PB22: thats a good idea for a thread! Yes, My surgery was in Rochester NY. My breast surgeon is an oncology surgeon, did a residency at MSKCC . I remember him explaining to me about how he "cores out " the nipples. He and my PS do it together. I remember how excited he was about the nipple sparing procedure, you could tell he was very enthusiastic about restoring women to as close to their pre-op self as possible and recognized how that would include sparing the nipple if possible.(remember, this was the BS, you'd expect that from a PS but not necessarily from the BS.) He has only been a "convert" for a year, my PS for much longer.
for anyone wanting to do more research,Plastic and Reconstructive Surgery: June 2009-Volume 123 Issue 6 pp1665-1673 Breast : Special Topic Nipple Sparing Mastectomy
the abstract states "a review of the literature suggests that certain breast cancers may be amenable to retaining the nipple if they meet specific oncologic criteria: tumor size 3 cm or less, at least 2 cm from the nipple, not multicentric, and with clinically negative nodes" If you were to get the full article, the bib might be great since they site literature review. Also the authors in the bib will be identified by the institution they practice in . The bold suggests was me not them, suggests is a different than something like "clearly stipulates"
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Sweetie: How many surgeries the surgeon has done is important in leaving a nice skin flap for the PS to work with. So even if you surgeon agreed, sounds like you'd be his experiment. You do have to have enough skin to work with, you mentioned you are small breasted. Your surgeon doesn't want to refer you to the one who does this surgery as its his bread and butter and he would lose business. My surgeon has done this for 10 years on over 1000 woman, and his study is being presented this April's surgical convention. I hope your guy attends.
I am going to start a thread with requesting just the city where it was done, and if anyone wanted more info they can PM. you for the name. I hope you'll all contribute.
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What a wonderful group of women we have here! Sweetie, I hate that you are having to go through this. If nipple sparing is what you want, I would find a doctor that does it, and see if you are a candidate. Knowing all of your options, helps you make the best decision for you. Another suggestion, have you seen a plastic surgeon yet? Maybe a reputable PS in your area could recommend a doctor that does nipple sparing. This is a surgery that they have to do together, so maybe you would have some luck that way. Things will get better, just stay strong, and remember we are here for you.
PB, I like the idea of a thread for surgeons!
I hope everyone has a beautiful weekend!
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Ladies, I have the thread posted. something like where did you have your skin sparing nipple sparing procedure performed? Can you ladies find it and post your city to get it going?
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hi Ladies,
You women are amazing! I'm feeling very grateful for your support. I live in CT, outside of Hartford so any Dr's near my area would probably work best. PB22 your in Fl so I don't know. I'd have to fly down. I do have an Aunt who lives St. Augustine and ironically we were going to visit her this spring for vacation. I don't know how far you are from there? TN- none in my area is helping me. The BS and PS back each other up. I asked both and neither offered up any names. Like I said I think they just don't want to do it. I think I mentioned my BS offered skin sparring mas. so if she can offer that it makes sense to save the nipple because that's a more conservative mas.
Kschreve- my lump is 1.6cm near the skin in the upper outer quadrant about 3 inches from the nipple and about a small B not much to spare! Do you think that qualifies? If any of you want to PM the names of both your dr's please do, I would rather try to stay closer to CT for convenience sake. thanks!!
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Sweetie, I may have my dimensions wrong as to how far away from the nipple your area has to be, but there is a general distance they work with (I thought it was 10 cm, which would be about 3 inches). When I was originally researching, it seems the NYC team of Levine and Allen have been doing nipple sparing for awhile, and that's not too far from you. I know they do phone consults. I went to New Orleans, but many of these doctors are closely connected and have similar safety precautions.
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PB: That's a great idea! I went and posted my docs on the thread. I don't know how nany we really have here in town, but I feel blessed to find these two on my "recovery team!"0
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Sweetie, I sent you a PM regarding outstanding surgeons located nearby in NYC and Westchester, NY, even closer. Sounds like you might be a candidate since your tumor location is > 2cm away from the NAC. Just a clarification, 10 cm is approx 5 inches.. or half since 2.2 cm equals 1 inch.
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Ladies, thanks for your imput onto the thread of "Where these procedures are done". Hopefully it gives some insight that they truely are performed and the patient isn't off the wall for requesting consideration. Just being on breast cancer.org makes and you see how many woman are truely affected by bc, its just unbelievable how many woman there are.. When your in the office getting a consult you feel like your the only person. It amazes me when you see how many young and older beautiful woman have actually had reconstruction.
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PB, Thank you for starting the new thread Where are the skin sparing nipple sparing procedures done?, what a great idea! Ladies if you post on any other sites that may have women that have had this procedure done, post about the new thread so we can get more women posting their surgery cities.0
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I had a nipple sparing bilateral mastectomy with immediate reconstrution (tissue expanders and Alloderm). It was done at Santa Monica, UCLA Medical Center in Ca. Two surgeons actually did my surgery. My breast surgeon did the mastectomy and my plastic surgeon did the tissue expanders and Alloderm. It was an eight hour surgery. The results looked wonderful! I was so pleased with how they looked and there was barely any scarring. My breasts looked almost the same, even better because it was more symmentrical. Two weeks into recovery, however, I developed an infection on both breasts. My PS speculates that it could have either been contaminated Alloderm or an infection from the drains. So I had another surgery March 12 to remove the TE. I'm going in for another surgery in two months time to have the tissue expanders put in again for a second time. Hopefully, there won't be any complications.
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Aliting33, Welcome to our thread. Sorry you have had such a hard time. It's bad enough that you have cancer, but also having to go through getting an infection and losing your TE's. You will have to keep us posted on your progress. Is all the infection gone now?
Fariport, you are getting closer!
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TN LADY: I know!!! Thanks for remembering!!! 0
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Fairport: what do you have three more days to go?
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PB22 Ohhh yeah!!! Friday 3/26...... I am really looking fwd to getting a good nights sleep when these hard expanders are out,,,nothing (not tylenol pm or even ambien) is helping now. And ok I admit Im also looking fwd to seeing how Im going to look: my new self. Thanks for asking
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Alitling: I'm so sorry you are having to go through that!
Fairportlady55: I hope your exchange goes well! I'm excited for you! You'll have to let us know if it helps with your sleep. I still have some heavy duty meds from the mx around but that's a bit severe for a sleep-aid right now.
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I had a bilateral nipple sparring mastectomy with tissue expanders done in August 2009. I am going back in next Tuesday for a revision to the expander exchange I had in january. I am not happy at all with my results. I did not sag at all before and feel like i do now. My PS said he will not lift the implants again or make my pockets smaller to lift them. Has anyone ever had a loft or heard of a lift after a mastectomy? I have my nipples and incisions are under my breasts in the fold. I was a 32D before and have 550cc mentor gel implants in now. I am so upset about my results and am scared to go back in and do it again next week!
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Drumak: I had a lift during bmx procedures, went into immediate implant without the expander. I have an incision from areola down so skin could be pulled from each side to lift. Will be exchanging out from current 375cc to a larger implant in a few months and may need more of a lift to give me the cleavage I desire. Doesn't sound like it can't be done but you'd have to ask him why.
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drumak, Is it possible for you to get another doctor's opinion? Did your doctor give a reason for not wanting to do the lift or correct the problem? There is a lady on the exchange thread that may be of more help when it comes to sizing. She even has a site called 101 on implant sizing, or something like that. It sounds like you need to get some answers before you go in for surgery next week. I understand why you would be scared, I wish I could help more. Please let us know what you find out.0
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Hey Ladies guess what! I found a PS and BS who does NSM and they are both in the same practice as the BS and PS I was seeing. What's funny is my BS never mentioned the other doctor did it and neither did the PS mention the other dr in his practice did it even though I asked both of them if they knew anyone who did it .My BS said I am not a canidate but did not explain why. From everything I have read so far I am a canidate. She just does not support NSM. I am ready for an opionion for those other two drs, although awkward cause they are in the same practice. I emailed my dr last week with a bunch of questions about my diagnosis (the nurse told me too) she never called or emailed back. I gave her a week and finally called and they nurse said she gave her my questions and she recommends a BI MX (thanks for letting me know a week later!) I am not liking the way she communicates with me. Do you guys feel you had open communication with your BS and PS and that they personally returned your calls and provided answers to your questions. ALso any of you heard of gummie bear implants? another new limited option. I found one Dr who does it while other drs in the same practice don't do it. It shows you how much things can vary from Dr. to Dr.
Sweetie0 -
Hi sweetie I am so happy to hear you found a doc to do NSM (!!!!) but wow it sounds kind of strange to me that its in the same practice and your PS didnt even tell you. It is very important that you feel you have good communication and you should not settle!!!!!!
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Sweetie, I'm glad you found someone! I think good communication is important, but most important is how well they do their job. In my case I have had much better communication with my PS than my GS. I think he has better office help. I don't necessarily blame the doctor (GS), the nurse was the go-between, and she was not very good at calling me. I found myself doing the calling, but this has been the case with most of my doctors. I will admit that it did give me doubts in the beginning. He had a very good reputation, so I stuck with him. We have to be our own advocate and sometimes that involves being a little pushy to get what we want. So hang in there girl!
Have you set up an appointment with the new doctors yet?
I don't know much about he gummie bear implants, I think they have just been approved in the US.
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Wow! I feel so blessed to have a BS who gave me her cell phone number! I can call her personally with any questions. She even makes personalized cards for her patients (I have 3 now). It also sounds like most BS "abandon" their patients after the surgery as far as I'm concerned if you do reconstruction and don't see them again. Mine came to the hospital the next morning and did my discharge for home, saw me in her office before my PS appointment to make sure I was doing ok, and made me schedule another follow-up for when she thinks everything should be done so she can follow again too.
I know doctors are over-worked and I think maybe sometimes it helps them to "distance themselves" from their patients in order to treat them. But BC is so personal, I think we all just want a person who is a medical professional to treat us with respect, care, concern, and be honest with us. We all deserve the type of doctor I was blessed with as my BS.
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Sweetie: Good news you found another surgeon. Lets us know how the consult goes.
Fairport: Big day tomorrow? You'll be sleeping well in no time.
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Sweetie, I'm glad you found a PS and BS who do the procedure, how crazy that you weren't told. In terms of the gummie bear implants, my PS told me that the only way to get them is to be in a clinical trial as they are not yet approved. Only doctors who are part of the clinical trials can do it. He mentioned it when I met him for a consultation. He said he wasn't part of it, but if I were interested, he could refer me to someone else. I wasn't interested, I'd prefer to do something that was already approved. I was nervous about silicone anyway. Getting back to the awkwardness of switching doctors in the same practice, I think if it were me, I'd be so angry that they didn't inform me that I'd think to myself, let them feel awkward for not being professional and not very patient centered. I think it's bad ethics to not inform someone of something just because you don't practice it. I hope you find out that you are a candidate, but if not, you will get over it because they do look really good, and also because you'll know you tried your hardest.
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