Please Read If You Are Considering a Preventative MX
Comments
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I was diagnosed with DCIS (ductal cancer) in December. A big surprise to me was all the options I was given for treatment. The bigger surprise is that one option was never offered to me- nipple saving mastectomy. My surgeon never even told me this was an option. Luckily, I spent a lot of time on the internet and learned about it that way.
Since my surgeon did not advise me of this possibility, and wasn't trained in the procedure, I searched out and found one who did. It meant driving 4 hours round trip for every visit but it was worth it. I had this done in March 2010 and am very happy with the results.
So the only purpose of my post is to let other women know that, for preventative mastectomies and even some where cancer has already been diagnosed, this is a viable option. If you are considering a mastectomy because you have found out that you carry the gene I would recommend that you consult with a qualified surgeon to find out if you are a good candidate or not as some women are not.
During the procedure your breast tissue is removed while preserving the skin and nipple. When done by an experienced surgeon this type of mastectomy is just as safe as traditional ones. The breast tissue is then replaced with either an implant or some of your own tissue.
Many women have said the most traumatic thing physically about a mastectomy is the loss of their nipples. Although plastic surgeons can do amazing things to create a "new" nipple it will never look as natural as your own. If you'd like to learn more about this procedure there is a video on the show "The Doctors" as well as many threads on this site. Feel free to PM me, too. I would be happy to answer any questions that I can.
Kate
Here is a link to another thread of here if someone would like to read posts by other women who have had NSM done.
http://community.breastcancer.org/forum/44/topic/745796?page=31#idx_91
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Anne1962- Thank you so much! My DH says I am trying to save the world- one nipple at a time! LOL!
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Hi Kate. Had to write because I felt as if you'd written this message just for me! No BC at the moment- just high risk. Going to the oncologist next week to hear my actual risk. Thus far my choices are tamox or pbm and I'm strongly considering the latter and the procedure I'm most interested in is the skin/nipple sparing. Would you mind giving a bit more info (either here or on pm)? Did you opt for implants or your own tissue? Did your surgeon give you any numbers about increased risk for keeping skin/nipple? I've nursed four babies and well, my breasts are not where they used to be- are the breasts repositioned? So many questions. I'll check out the info you suggested but I'm also really interested in anecdotal info. Thanks so much for sharing.
Kelly
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Kelly- I am replying to you here in case others want additional information, too.
I opted for implants as I was too thin to use my own tissue. There are pros and cons for both. With implants, depending on how old the women is, she will usually have to replace them at least once in her lifetime resulting in an additional surgery. With procedures using your own tissue the recuperation is much harder and you usually end up with some pretty large scars. It is really a personal decision.
If you have your NSM performed by an experienced surgeon the rate of recurrence is EXACTLY the same as traditional MX which is less than 1%. During the NSM the surgeon will scrape the cells within the nipple and biopsy them during surgery. If any cancer cells are detected they would need to remove the nipple at that time.
Again, anyone considering this please consult with someone who actually does this kind of surgery. If I had listened to my original surgeon, who was not trained in the procedure, I would be looking down at two fake nipples right now.
Here is some additional information:
For women who have already been DX with BC. Your cancer cannot be located too close to the nipple. As surgeons perfect this procedure, though, the parameters for "too close" will certainly change. I would still consult with a BS.
Women who are large breasted are not typically considered good candidates. It becomes very difficult to maintain blood supply to the nipple when it has too far to travel. Again, though, see if the BS thinks you are a viable candidate or not. As far as repositioning the breasts I believe the PS can make some adjustments but probably nothing too major. This wasn't a factor for me, since I was so small breasted, so I'm really not qualified to answer this one. For those of you who are small like I was, though, they can increase your size by quite a bit and still keep the nipples in the right place. Several women on here are going from an A cup to a C with no problems.
After NSM, you will typically lose all sensation in your nipples. Some women do get feeling back. Most do not, but this is very common in women who have had breast augmentation as well.
With NSM you really need to find an experienced BS AND a PS. This is a team effort. Your BS will perform the MX but your PS will be doing the reconstruction and they, also, have to be skilled so as not to disturb the blood supply to the nipple while they are doing the reconstruction.
If you are opting for implants typically the PS will place tissue expanders beneath the breast skin and pectoral muscles. Usually this is done the same time as your NSM. Some surgeons, like mine, prefer to do it a week later to decrease the chances of infection. Then every few weeks they will add saline to the expander through a port beneath your skin. These are called "fills". They are painless and are done at the PS's office. Once you have been expanded to your desired size the PS will have you wait anywhere from 6 weeks to 3 months while the skin adjusts. After the waiting period you would have an additional surgery to remove the expanders and place the implants. This is called your "exchange surgery". The tissue expansion process can be uncomfortable for some but not unbearable. The most difficult part is the tissue expanders (TE's) are quite hard so your breast becomes hard as well. But this is just temporary until your exchange. For those women wanting to go this route make sure you discuss what you want your end result to be. This will determine what type and size of TE the PS will chose for you. For those who are considering using their own tissue, again I did not have this done so am not really able to give you much information there. But there are other threads on this site that talk about it and you can get information from your PS as well.
If you want to read some posts from women who have had this done there is a thread called "Nipple Sparing Mastectomy with immediate reconstruction". There are some wonderful women are there that would be happy to share their experiences with you. There is also a link on that thread that will take you to another called "Where are the Skin Sparing Nipple Sparing Procedures Done?" It is a fairly new thread so not all cities are listed, of course. One of the greatest challenges of NSM is finding a qualified surgeon. Depending on where you live you may need to travel to another city or even another state. (Mine was 2 hours away.) But if you think about the fact that this is something you are going to have to live with for the rest of your life what is a few months of inconvenience?
When considering any breast surgery please explore all your options. If you are considering a MX for preventative reasons you have time to educate yourself. I just wanted to make everyone aware that you can't count on your surgeon to do that for you.
For me, having this option made me feel more "whole" afterwards. But that being said, I would never imply that women who didn't have NSM are any less so. PS's can do amazing things these days to create a new nipple if it become necessary to remove yours. But I have a problem with surgeons just lopping off nipples because they are uneducated or they're lazy and it's easier to do so. It's barbaric and unnecessary in a lot of cases, especially for preventative MX's.
If you, or anyone else, has any more questions feel free to PM me.
Kate
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another happy cutomer here. I too, had the nipple sparing mastectomy with implant reconstruction. I had it done two years ago. In the past two years there are more and more doctors doing this procedure. I had the surgery done preventively as I had ADH, dense breasts and a strong family history (BRCA negative).
My incisions are in the fold under the breasts. Saving the nipples and having hidden scars has made a HUGE difference I feel. I still feel like me and I feel like they are my breasts still. I just fill like the "insides" have been swapped out.
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Please also be aware that many surgeons do not undertake this procedure because in minimizing risk they feel that keeping the nipple tissue is a risk to the patient. Numerous surgeons at a well-known NCI cancer center did not offer this procedure based on my own experience. As well as one can try to remove all cells, they acknowledge that this is in itself impossible, and continued follow-up required for those who have an identified risk for BC.
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Moogie- I see you joined this site April '06 and was just wondering when you had your MX?I'm not sure what you meant by several surgeons don't offer it based on your experience. Does that mean you had NSM and had a bad experience? If you had yours back in '06 they have come a long way in the last few years. Current research shows the rate of recurrence with MX and NSM is exactly the same. My follow up is no different than someone who had a traditional MX. Any cancer cells within the nipple would have had to come from a duct and all the ducts, and breast tissue, are removed during MX. BC does not start in the skin or nipple of the breast. It starts in the tissue. Surgeons who performed skin saving nipple saving MX in the past were not as proficient at removing this tissue and so there was a high rate of recurrence with SSM and NSM in the past. But that just isn't the case today.
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Here's a short video from the Mayo Clinic regarding NSM-
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All surgeons I met with at Both Duke , Sloan Kettering , and 2 other major hospitals were very clear that all cells, all tissue cannot be removed by mastectomy. EVER. They do their best but there can always be microscopic leftovers. I had my work '06-'07. In all assessments they felt my personal situation was too high risk for the procedure. Surgeons differ on their opinions on this, especially if there are widespread pre-cancerous changes, dispersed LCIS, ADH , etc...
Mastectomy is the most dramatic risk reduction tool we have, but it cannot eliminate risk due to its mechanical nature. And surgeons do differ in their use of the technique, and their preference or choice for or against it.
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Moogie- I agree with you that all tissue cannot be removed by mastectomy. My only issue is that having a NSM does not give you a higher recurrence rate than a regular MX. And I understand that some women, based on their diagnosis, would not be considered a good candidate for NSM. The only intention of this particular posting is to advise women, who are considering a preventative MX, that this procedure exists and if interested find out if they are a candidate from a qualified surgeon.
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NSM is a newer, high tech, modern surgery that can be life-changing. The "total eradication of microscopic cancer cells" echoes the old way of thinking behind the history of the brutalizing radical mastectomy that used to be the industry norm. Women would have their entire chest muscles, all lymph nodes and all their breast tissue *gone* after waking up from surgery for even the most minimal breast cancer.
Today things are fortunately so much more forward-thinking. The path report is what ensures the NSM is clear. Of course you cannot measure every last skin cell, but by factoring in clean margins, BRACA testing, oncotype score, and sentinel node biopsy, the doctors can better weigh the numbers. BC is never about being 100% certain, no illness is, but is about odds, weighing in for the more positive outcome. Each one must respect one's limits but I believe it is helpful to be open to possibilities.
Now we know that NSM can not only preserve the breast but become a lifesaving procedure that minimizes the physical and psychological trauma to the patient. I would definitely recommend that women who are eligible should research & consider it.
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Currently, the more up-to-date surgeons are performing this and it is common to find surgeons who have not had much experience in it at all.
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Moogie- Duke University and Sloan Kettering are institutions leading in technologies for nipple sparing mastectomy.
VIDEO: Dr. Zenn of Duke U. discusses nipple sparing/skin sparing techniques using SPY technology.
http://www.youtube.com/watch?v=yToz9cMKaIQhttp://www.mskcc.org/mskcc/html/95053.cfm
Memorial Sloan-Kettering breast surgeon Virgilio Sacchini has led research efforts in this area. "As the rate of contralateral prophylactic mastectomy has increased, we have wanted to improve the cosmetic results of reconstructive surgery," explained Dr. Sacchini, "and in certain patients, preserving the nipple and areola is a possibility." In the past ten years, success with skin-sparing mastectomy -- in which the entire breast skin envelope is preserved -- has led to increased interest in nipple-sparing mastectomy (NSM), a procedure that combines skin-sparing mastectomy with preservation of the nipple and areola.
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Moogie, 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 statement. It is also untrue that most NSM recipients need constant monitoring after surgery. This reason alone is why I chose to have the NSM/BMX. I kinda just wanted to be done with BC so factoring in my prognosis, I chose a BMX.
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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Thank you, White Dove and Kate: You guys are wonderful in putting this out there!
I am very grateful and will follow up with this with my original PS (wonderful, fantastic guy, but not a NS PS,) had a consult with the "boob surgeon" at MSK who told me that I would not match if they kept my nipple.
I am going to get another consult with the PS at Yale and ask more....I will post any findings or reports that I get on this thread.
FYI: everybody on this thread. I want to do a Prophylactic mtxmy skin sparing hopeful to do NS also. I am a DD on the one that I want this on, and need a reduce and lift also, so this is a big challenge for a doctor. Hopefully, I can find out lots and report back.
Thanks to both of you for the thorough research, thoughtful posts and kindnesses!! The PMs to me have been educational and supportive and I truly thank you both.
xoxo
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anniealso- Thanks for all of your encouraging posts on this thread and others. I am wishing you lots of luck in your search for a surgeon who will give you the results you are hoping for! Keep us posted!
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annie- you might also check with NYU- they're also a nci center. I know people who have had it done there.
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It was not offered to me, and I was very upset when they said they had to take my nipples. I now know it was offered by another surgeon in the same practice a few months later. I would have loved to be offered this option, and only get some solace in knowing the sensation might not have been maintained.
just another part I life I can't do anything about I guess. But good that others might be able to consider this option.
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WHITE DOVE:
I did not say that there was increased risk hypothetically, I said that in MY PERSONAL CASE interviewing over 5 surgeons in total, they deemed the procedure too risky. I also said surgeons are not all on the same page concerning the procedure and that is also correct.
to quote my own post :"In all assessments they felt my personal situation was too high risk for the procedure." It is important for everyone to explore all options available and have their personal risk assessments, with multiple opinions. It is also important to realize that all imformation and personal experience will not mirror your own.
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Ladies- I originally posted this thread with those considering preventative MX in mind. I did want to make everyone aware, though, that NSM has been highly successful with women diagnosed with DCIS, IDC, LCIS and ILC as well. So don't think if you've already been diagnosed that you would not be considered for this procedure. The main issues are that your cancer is not too close to the nipple and your overall size. Once again, the best candidates are those women who are not large breasted. Good luck to everyone is being able to have the most options possible as this empowers us.
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I wanted to add to the above by saying that after I was dx, I brought all the above concerns to my oncologist who told me that cancer of the nipple is very rare and if a cancer ever did show there then at that later time you would remove the nipple and that if it was in the nipple there are no ducts left after mx for it to travel to. She also told me that if there is a reoccurrance with the implant behind the pec muscle you would feel a grain of sand at the skin and it would be an easy procedure to remove. She said reoccurance is no higher with this procedure. I no longer have to have mammograms and my only monitoring is self examination. So if you think about it, if a cancer reoccurs at the nipple or skin its easily removed and if a cancer cell escaped and goes to a node(which is what most are fearing) than its the mastectomy procedure in itself and not the nipple being the cause. I see no reason for not saving the nipple.
For a start, refer to the topic of where are the skin sparing nipple sparing procedures performed. Ask the plastic surgeon , who the general surgeon they use who give the best outcome because its the surgical skill in preserving the most skin for the plastic surgeon to do his magic.
Also another reason this is usually not performed on a large breast, meaning obese is that the implant is only so big and if the skin/breast is so stretched out then the implant would not be able to fill out all the skin-there would be a huge sag between the implant and the nipple area. The pec muscle can only stretch out so far.
In the county I live in, I know of only three surgeons that perform this, so If I had a consult with every general/breast surgeon in my own city I would have them all recommending the traditional route as they don't perform it, so I could have went to 5 or 6 surgeon consults and all would have said no, it doesn't mean that it is dangerous it only means that it wasn't an option when they were trained and they have no experience in this. Ask your oncologist who has cosmetically good results with this procedure as they are the ones that see all the outcomes and ask the oncologist how many cancer of the nipples they have seen in their practice.
I will predict that the next generation of surgeons coming out of the teaching hospitals will be offering this in their practice or will know of this option to refer us to, its just not happening now. I haven't heard of one woman who regrets saving their nipples. It somehow makes everything feel like its all going to be ok.
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Annie - Best of luck to you in persuing the best. You deserve it!
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Moogie, -Exactly. NSM is not offered to everyone. At the risk of stating the obvious, it depends on the person's diagnosis and their choice as to either conserve the breasts (lumpectomy) or have an mastectomy.
I know & agree that NSM is only offered to those who are eligible. Women should inquire whether NSM or SSM is available to them and not assume that because one surgeon does not do it that their options are null! How many times have I heard of patients and even doctors who know little about NSM or didn't even know it existed! Let's continue to spread the good word about NSM and hope to help more women find the cutting edge treatments that maximize success with their treatment and minimize BC's assaults to one's body image. Correct - Not everyone will be considered to be a good candidate for NSM.
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Kate- I just had a bilat mast w/ TE's in May 2010. I think it is nice that you are telling women about NSM. I too wanted to do that and my surgeon said she would do it if I really wanted to, but explained that the risk in my particular case was that the nipple most times develops necrosis and has to be removed anyway. Basically, she talked me out of it. I wish I had gotten a second opinion though. I really think the nipples missing is bothering far more than the breast. I wish I had seem this post regarding recurrence rates prior to my surgery. I had looked at pictures of the NSM since my surgery and they all seemed to look okay. Some were uneven, but it beats having another reconstruction surgery. To me it would have been worth it. Take Care. Allison
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Well, I don't know if "nipple sparing" is really what we girls would like it to be. I personally don't have an 'appearance' attachment to my nips, but if it adds to the sensual/sexual aspect, then yes, I definitely want to keep them! I have had a minor surgery to remove a lump at 12:00 which was B9, and a sub-areolar incision to investigate bloody nip discharge revealed DCIS and IDC. Unfortunately, even though it was a small incision, the nip has not returned to life. The blood supply was disrupted and it remains numb; so the girl on the right is no longer part of the fun. Now I'm facing a lumpectomy which will remove the entire nip because the cancer is in the ducts directly underneath, remove the cancer that is lying in wait underneath the nip, and hopefully obtain clear margins and save as much of my breast as possible. I will be lopsided for awhile, until I find a prosthesis that will help "even out" my appearance. I am in the camp of "once you take it off, you can't put it back" and so I'm not inclined to remove more than necessary until I have pathology that indicates a high risk of recurrence.
I am so thankful for this site, as it allows us to discuss the reality of what we're facing. I cannot bring myself to discuss this with my family; they are soooo optimistic of my overall recovery (and so am I, actually), that sharing my moments of fear and anxiety about the minute physical aspects are not something I'm ready/willing to expose to them. My children are awesome and know what's going on, but until I look/feel "sick" they won't really understand. My husband is eternally optimistic, will stand by me no matter what happens to my body, but also protects me from going "down that road" of "what if". It really doesn't matter to him, which is really cool for the most part, but also a bit challenging because I need to process it all, even if it comes out as nothing in the end.
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PB22- Great post! Thanks for sharing!
Allison- I'm sorry your PS talked you out of NSM. There is a risk of necrosis but not one single women I have talked to on here has had that happen. In almost every case, though, they have had their nipples develop a black scab that can last up to a few months. If left alone the scab will eventually fall off revealing a healthy pink nipple underneath. My BS did warn me about the possibility of necrosis but I figured if it happened they could remove it at that time.
Mrs Nice- I totally understand the need to process. I, too, am so grateful for this site. I think it helps with the process and I swear it has kept me sane these past few months!
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Thanks so much to all of you for your input - just in time. Last week I celebrated my 2 year "cancerversary" after cancer in my right breast (lumpectomies, rad/chemo). Last month my routine MRI had shown a splootch in the opposite breast, but the resulting biopsy said all was normal, and the swollen lymph node I found under my left arm was clean per the ultrasound and mammogram.
In celebration of the clean report, I made an appointment with a plastic surgeon last Friday to talk about some cosmetic reshaping/balancing of the breasts, since the lumpectomies left me lopsided. After telling him my history & recent events, he said he wouldn't touch it cosmetically, and he was surprised no one had originally recommended a double mastectomy. He discussed a few things in my history that really concerned him; they were the same things that had concerned me, but I was told everything was OK. I think his validation of these is what gives me a sense of relief that I'm not just paranoid.
He referred me to another surgeon for a second opinion about a mastectomy, so I made an appt. for 7/6. What do I feel? hmmmm... a little fear, but mostly an odd sense of relief that someone is leaving no stone unturned. I asked about NSM, and he explained it briefly, but wanted me to discuss all options with the other surgeon. After reading these posts, my breasts may be too large to consider it, but my husband & I are both OK with doing whatever needs to be done after the consult.How sad and frightening it must have been for those who came before us without the support of connecting like this. I can't begin to tell you how much I appreciate your sharing your experiences.
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LaurieA- I just want to wish you luck on July 6th. I hope that you are able to have NSM as I think they will be very happy with it. I would recommend that the BS you see is actually one who is trained and performs NSM's. I have heard time and time again that the ones that don't do it are the ones that advise against it. It does make me wonder about their motives some times. My own experience was the same as my original surgeon said it was too risky but after consulting with a qualified surgeon she said the opposite. That I was, in face, an excellent candidate and I have been extremely pleased with the results.
LIke you, I think about the ones that came before us that didn't have this wonderful site. I think about the thousands of women who may not have access to a computer and the internet even today. I know, for me, this site has been invaluable for so much information that has completely changed my quality of life. Someone said all BS should tell their patients about these discussion boards and I totally agree.
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Kate33 - It was great of you to start this thread. I know my surgeon suggested the NSM for my situation, but she said that alot of breast surgeons aren't willing to do it. She has been interested in it and started doing it about 4 years ago - so I was just lucky I had her, I didn't know it was an option. I hope people find this site and the information they need.
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