Nipple Sparing Mastectomy with immediate reconstruction
Comments
-
Sweetie: My BS was willing to try the skin sparing and nipple sparing procedure but explained that during surgery she would take cells under the areola and nipple and have them analyzed immediately and if there were cancer or pre-cancer cells there they would have to go. I was fortunate enough to be able to keep mine. Of course my nipple is a little inverted right now since there was tissue taken out of there. I have TE in place now (left side only was mx). My PS may be able to make it look a little more normal at exchange, I don't know we didnt discuss that at this point. I'm personally glad I was able to keep mine since I dont' think it was quite a shock for me after the mx to see myself. But if there was cancer there...I'd rather they be gone.
0 -
Sweetie & others,
So glad to see this thread here for women to learn about the available option of Nipple Sparing and a special thanks to TNlady for starting it!! No matter what type of reconstruction a women chooses, whether it be a flap procedure, expanders or immediate implants, nipple sparing can be incorporated with them all. However, NS may not be an option for all women, especially if you have very large breasts with pitosis and/or the current nipples fall below the inframammary folds or an invasive BC diagnosis. It is, however, a very viable choice/option for many women choosing a mastectomy for prevention and/or for women with early staged BC that is located far enough away from the NAC/nipple areola complex. There is much current research supporting NS and its oncological safety outweighing the risks. The problem often lies with surgeons performing these procedures and those that do not who will often tell women its not safe...simply because they may not have the experience and/or current knowledge. Only you can decide what is best for you, but seeking opinions from both sides of the spectrum would be highly recommended to make a fully informed decision. Gather all the facts, seek different opinions and do your homework. When choosing a surgeon who performs NS, you want experience/skill and someone who has performed LOTS of these procedures for a successful outcome, preferably a surgical oncologist and NOT a general surgeon...there is a difference!
Below are 2 more references that may also be helpful to you. The first citation is written by a well known NS surgeon who has performed several hundred nipple sparing procedures. The other article is based on a current research abstract I posted on another website [where you will find lots of other NS articles as well]. Hope this helps!!
http://www.diepflap.com/nipple_sparing_mastectomy.html
http://www.facingourrisk.org/messageboard/viewtopic.php?f=306&t=35282
0 -
Welcome Sweetie and LISAMG!
Sweetie, I agree with what the other woman have said. It is a personal decision. I know there are not a lot of doctors out there doing this procedure yet, I was just very fortunate that my doctor was one of them. I had never heard of the nipple sparing before my diagnosis. My mom had breast cancer and a mastectomy, but nipple sparing was never mentioned to her. I am very happy with my results. Before you make a decision, you may want to find a doctor in your area that does this procedure. It sounds like Fairportlady knows someone not too far from you. I would set up an appointment with the doctor and see if you are a candidate for nipple sparing. It is a big decision and difficult one, but we are here to help. My decision was easier knowing that I would be able to keep my skin and nipples. Any questions you have, please just ask.
0 -
Hello Everyone: I agree it is important to have a surgeon who is experienced and chose the surgery that will have the best outcome for your long-term health and survival....not just for cosmetic reasons. I know a nurse who has decided to delay her mx and is on hormonal therapy only since she has a teenager at home and feels BC won't kill her tomorrow, so she's ok with waiting awhile to deal with it. She's already decided against TE too and wants DIEP or a Flap done too. I know her docs weren't thrilled with her decision to wait, but it is OUR lives and OUR bodies. Just get the facts and talk them out. It would have been a whole lot eaiser if they had just told me what to do I think since you always seem to second guess yourself!
0 -
Hi Ladies,
thank you all so much for your replies!! I'm going through so much!! I can't sleep very well and am agonizing over what I should do! I have decided a second opinion is in order and am calling a new surgeon and P/S tommorow to review my risks and options. I am going to talk to him about this option. I really wanted a lumpectomy to begin with, but now that i have two breasts involved, one with invasive and one with atypical hyperplasia it makes me concerned about future risk and recurrence. I am trying to find that balance if one exists in treating the cancer and reducing the risk to the farthest degree and retaining as much of me as I can!! To me it sounds like nipple sparring or skin sparing is the best compromise. My friend just had a bilateral mastectomy with implant expanders and just showed me..they are rock hard lumps! they look OK, but no nipples and are purely now "accessories" as opposed to functional. God this whole thing sucks!! I am coming to terms with the fact I am not going to be the same person I was before cancer, but somehow want some consolation prize. I think you all can relate. Thanks for your support and I will keep you posted! Want to ask you, you mentioned some sensation and some loss of sensation, have any of you been told or have any of me had sensation anything like before? Do you have any erection of the nipples or is that flat out gone?
0 -
Hi Ladies,
thank you all so much for your replies!! I'm going through so much!! I can't sleep very well and am agonizing over what I should do! I have decided a second opinion is in order and am calling a new surgeon and P/S tommorow to review my risks and options. I am going to talk to him about this option. I really wanted a lumpectomy to begin with, but now that i have two breasts involved, one with invasive and one with atypical hyperplasia it makes me concerned about future risk and recurrence. I am trying to find that balance if one exists in treating the cancer and reducing the risk to the farthest degree and retaining as much of me as I can!! To me it sounds like nipple sparring or skin sparing is the best compromise. My friend just had a bilateral mastectomy with implant expanders and just showed me..they are rock hard lumps! they look OK, but no nipples and are purely now "accessories" as opposed to functional. God this whole thing sucks!! I am coming to terms with the fact I am not going to be the same person I was before cancer, but somehow want some consolation prize. I think you all can relate. Thanks for your support and I will keep you posted! Want to ask you, you mentioned some sensation and some loss of sensation, have any of you been told or have any of me had sensation anything like before? Do you have any erection of the nipples or is that flat out gone?
0 -
Sweetie, I'm glad you are going for a second opinion and looking at all options. As to your questions about the nipples, I have some sensation or feeling in my left nipple, but not much feeling in my right nipple. They both still get erect when cold, touched, etc. I have most of the feeling back everywhere else. The only place I'm still numb seems to be under the arm where I had my lymph nodes removed. I wish you the best of luck with your doctor's appointment tomorrow. If you don't get the answers you want, don't give up, keep searching! Let us know what you find out.
0 -
Hi Ladies, I've just caught up with reading everyone's posts. I took a break for awhile. I had my 3 month visit last week with the onc. and prior to that visit I wanted to just not think about cancer as I was anxious enough. Been having the joint aches and pains with the arimidex which was discouraging it took me by surprise as I did well on the first month of it.
Welcome the newer posts and looking forward to hearing from Gulp.
PS73 and fairport, won't be long now. hang in there.
TN still wearing that band.
I never had a problem with my nipples, they always had good color and have been perfectly aligned. As you know eventually will be changing out my implants for a fuller size for more cleavage. I hate to think about ruining a good thing the second time around.
Sweetie: welcome, I'm glad you are looking into the nipple sparing. You live so close to NY or Boston, I am hoping you have that consulation to answer your questions. I have erect nipples in the shower and on touch. They look normal. They have feeling mostly sore now. They are sore with certain fabrics.The feeling is basically on the outside, nothing on the inside, no arousal or sensations that are sexual. I am still numb under where the arm pit were the node was taken and on that side of the breast. Keep us informed.
0 -
Hi Ladies
10 days and counting till these rocks are exchanged for nice soft implants ( thinking of my surgery sister Cindy too!
Sweetie: how did your second opinion go? Let us know how you're doing. I had (have) trouble sleeping too, my primary care physician gave me an Rx for Ambien: it has really helped. I dont like taking a lot of meds but it was really hard tossing and turning every night and for now it helps a lot: maybe you might consider it? My nipples get erect too, I had on a t-shirt the other day and you could see the nipples a little and even though I still have the TEs (which as you know from your friend are rocks and very un natural) it looked kind of hot
! Its so recent since my BMX (Jan 11) that its too soon to say about sensation: I do have a little in the left nipple,but have been told in time a lot of sensation comes back for some women.0 -
Hi ladies!
Second opinion is Thurs, I'm really leaning towards BI mas. I know I can have skin sparring,but I'm hoping this Dr will offer me nipple sparring as well! that would be sooo great. He's a highly acclaimed surgeon who has being doing this for years so I know he knows a lot. Fairportland- I did take Ambien when I had the MRI, and I did l like it. I think the lack of sleep is my mind churning so much, but I do get some sleep. If I think I'm obsessing I will ask for a scrip, but for now I want to want to see I get a sense of "peace" about what to do. I'm glad your doing well and getting feeling back. That's so awesome!! My friend will be ready for her implants any day and I'll let you know how she feels and looks. I can't wait to see for myself. It's good to see someone in person at the various stages. It helped when I saw her, although they look hard, I could see it was still her, her skin! I could envision they would eventually look very good when all was said and done.
TNLADY_ glad you doing well too, your alsos very lucky! I hate the thought of losing my nipples cause that's the part of my breasts I like the most. I know ppl say with a mas. you look good in clothes and I'm sure that is true, but for me its about the way I feel more than how I look.
PB22-Glad your doing well too, at least you have some feeling, that is so great. When I think of that compared to having no nipples, I'd gladly take anything! I wish you continued healing!
0 -
Hi ladies!
Second opinion is Thurs, I'm really leaning towards BI mas. I know I can have skin sparring,but I'm hoping this Dr will offer me nipple sparring as well! that would be sooo great. He's a highly acclaimed surgeon who has being doing this for years so I know he knows a lot. Fairportland- I did take Ambien when I had the MRI, and I did l like it. I think the lack of sleep is my mind churning so much, but I do get some sleep. If I think I'm obsessing I will ask for a scrip, but for now I want to want to see I get a sense of "peace" about what to do. I'm glad your doing well and getting feeling back. That's so awesome!! My friend will be ready for her implants any day and I'll let you know how she feels and looks. I can't wait to see for myself. It's good to see someone in person at the various stages. It helped when I saw her, although they look hard, I could see it was still her, her skin! I could envision they would eventually look very good when all was said and done.
TNLADY_ glad you doing well too, your alsos very lucky! I hate the thought of losing my nipples cause that's the part of my breasts I like the most. I know ppl say with a mas. you look good in clothes and I'm sure that is true, but for me its about the way I feel more than how I look.
PB22-Glad your doing well too, at least you have some feeling, that is so great. When I think of that compared to having no nipples, I'd gladly take anything! I wish you continued healing!
0 -
Hello Ladies,
As you know now I am about 3 months out. The implants are ever changing for the better getting more "fluffed" as its called. I still get sharp pains probably for the nerve connections.
Today was able to hold a plank at the gym and jumped rope. I attribute that to the "moving comfort" bra that held me in place.
Sweetie: good luck. Waiting to hear. Fairport: I attribute the ambien to helping me sleep through the discomfort. I got off it at 8 weeks post op, but unlike you I wasn't getting the fills. Looks like you are a month behind TN and I.(Dec 7). Best to PS73 and Gulp. BCinCo thanks for posting the info.
0 -
Hi everyone,
It's great reading all the posts, thanks for all your interest and support. Sweetie, I'm glad you are getting a second opinion. I read your post right after my surgery and didn't have the strength or energy to write back and then my power went out for 2 days. I'm glad you got those good responses.I really felt for you. I had a lot of stress in the days leading up to my surgery and if I had my act together I would have started looking for a new ps. He obviously hadn't done too many nipple sparing procedures and preferred to reconstruct a nipple. But I held my ground and said I wanted to preserve my nipples. I had the surgery on March 8 and just came home from my follow up visit. I am still not so sure how it looks. I was told to keep my surgical bra on after the surgery and today at the doctors office, they looked at them and I lost it and started crying. The RN brought over a hand held mirror and I quickly looked but the bandages are still right outside my nipples and it was hard to really get a look because I was overwhelmed. I have a lot of fear about twilight zone looking breasts, they said they look good, and I think the doc said I made the right decision. I am really glad I kept my nipples, I am just scared about taking off the bra and looking! I think the stress over the whole thing is starting to kick in for me.
0 -
Gulp, Glad to hear from you. I remember the anxiety I had the week after surgery, when the bandages came off, that is normal. It will get easier each day, and if they said they look good, I bet they do. Did you hear back from your post-surgery pathology report yet? Let us know how it goes Thursday, we are anxious to hear.
PB, Glad to see you back. I have not been wearing the band in the last week. I don't like the fact that it is pushing the other breast down, I'm happy with where it is. My right breast seems to be dropping on its own, so I'm going to give it more time. I am going to have to get the bra you mentioned. I have been doing Jillian Michael's 30 day shred, the bouncing is about to kill me! Last night I had two sports bras on and that still did not help. Glad your workouts are going good!
Fairport, I am getting excited for you! Not long and you will have nice soft boobs! Yay!
I hope all of our other thread members are doing well!
0 -
Gulp: Good to hear from you. So glad your wrote you stood your ground and the PS obliged. Now he's telling you that you made the right decision. I did not have the anxiety post op you are going though. When the surgical bra came off, I was so pleased I had breasts and they looked like mine except for the scars. I was showing everyone who visited. I wanted them to see that there is a solution. I think it is because my mother had a radical in the 70's and wish she were alive to see how far we have come. I think your feeling this way because of all the stress you had leading up to your procedure , fighting to keep your nipples and now you are releasing all that tension. You will probably have a long sleep now! Every week they change and look different. We are here to help you through it.
Sweetie, we will await your second opion, it will be like you have this whole forum in the room with you!
0 -
Thanks PB and TNLady. After I wrote my recent post, I looked in the mirror, took off the bra and looked. They look pretty good, I guess, a little banged up and not exactly symmetrical. So how much do they change and look different? I am not sure how the process works, in terms of the tissue expanders settling in and how the shape changes. I am going in next week for a .....I forget the word, more tissue expanders? The PS said something about how if the nipples aren't aligned, he could do something to fix it, but I'm not sure what. I was expecting him to say something about reconstruction, but he didn't. I am also blanking out on how long the tissue expanders have to stay in before the exchange. Another question I have is about the surgical bra. How long do you have to wear it? My PS did say something about not having to wear it, I can wear a sports bra if I have one. I'm scared to take it off, is there any risk I'll screw up the shape? You can see I'm a nervous wreck. I don't know how to show my breasts to my husband, and what to tell him about how they will probably change. PB, sorry to hear about your mother. It's true, we are living in a different world, I heard a very sad story today about my friend's grandmother who had a mastectomy in another country in the 70s and there was no reconstruction and how it was a source of sorrow in her marriage.
0 -
Gulp: Just wanted to say my nipples look SOOOO different now than they did a few days post op (my BMX was Jan 11) at first it was kind of scary because they got black, I thought that meant I was going to lose them but through this wonderful site i learned from other women ahead of me that it was normal. Anyway, the nipples evolve, so whatever you see now: now worries. Wait and see...
I am guessing you are going to go back in for them to start to "fill" the tissue expanders, as far as how long they will stay in, a lot has to do with what you think as the size increases gradually...one thing for sure: how things look with the tissue expanders in place is NOT how they will look in the end when they are switched out for the impants: which will be softer and more symmetrical
hope this helps..:) TN Lady: thanks! Im sooooo soooo psyched for 3/26!!!!
Sweetie thinking of you... let us now
0 -
Hi Gulp and everyone, I had a nipple sparing bmx. My nipples were a little scabby but they healed. About a month ago my nipples started losing their color. My areolas are smaller and I have a few white spots where there is no pigment anymore. My ps says it's lack of blood flow and I can get tatoos. I'm not sure I want to. If the exchange goes well and everything is in place, I won't have to wear a bra. We'll see. BTW, I had prophylactic surgery. My surgeon thought it added a little risk and if I had cancer he wouldn't suggest the nipple sparing
0 -
Hi ladies!
All you women are great! What an awesome support system you ALL are! I haven't even started my journey yet and I feel your positive support and encouragement by my side. I read all your posts and about what you all are going through or have been though, I'm only praying I may be able to have the option you did. When I think about mastectomy it's not so much loosing the breast tissue that bothers me, but losing my nipples that bothers me. The way I look at the rest of it, is the BS is just scooping out the bad part! I'll let you know tomorrow what he says. I wanted to ask you ladies did any of you have a lumpectomy or consider one at all and why or why not?
0 -
Hi everyone. Thanks for letting me know what's going on. Cherries. Let us know what you decide. It's helpful to know about other's experiences with this process. Does your surgeon mean to tattoo over your nipples? I wasn't sure that I understood. Fairportlady, it is good to know things will look different. Once I get my tissue expanders to the size I want, how long do I have to wait for the exchange? Sweetie, I think it's great that you know in advance that your nipples are the most important thing to you, you have an advantage over a lot of women who may not really think it through because they are so overwhelmed. And like someone said above, if you are unable to save your nipples, the reconstructed ones look really good, so I think you'll be okay either way. I did have a few lumpectomies before my bmx. First I was diagnosed with DCIS and the surgeon had trouble getting the margins so he had to go in three times. Then I found out before one of my surgeries that I had invasive lobular ca on my "good breast" so they had to take that out too. I could have just stopped there and had radiation, which is what my bs recommended, but I decided to have a bmx so I could get on with my life. Now I don't have to do radiation or any more mammograms. One thing that pushed me to the bmx decision was that one of my cancers was not found on the mri or mammogram so I was scared to have to rely on screening to detect a recurrence. And then the other day I got my pathology report from the bmx and there were two other areas of DCIS that were not found on the MRI or mammogram. If I didn't have a bmx, I would have had to probably get those taken out too. I had small breasts to begin with and they were already getting banged up. They were uneven to begin with and of course most of the breast tissue taken from the lumpectomies were taken from the smaller one, so they really looked lopsided.
0 -
Hi gulp
thats the million dollar question! You will need to speak to your PS about how long you need to wait for the exchange. I am not an expert ,but there are a lot of great women here that are very well read on this that can explain the rationale to you I bet. I have seen some women post they need to wait 6 months, some 3, some one, my PS says 3 weeks. I think a lot has to do with how the TEs are placed. I did not have alloderm, it seems like a lot of women have had this, and I wonder if that plays any role in the waiting time? I'd be curious to know myself if anyone knows the answer to why there are so many variations....
0 -
gulp,
thanks for sharing! I also small very dense breasts so I worried a lot about what lumpectomy would look like. The dr even said she would have to take about 2.6mm out and that is a lot in my case! Also I really don't wan't radiation and at this point I don't think I need chemo cause there's no lymph nodes from the MRI, although they have to verify with surgery. Hearing what you went through also makes me think, about having to keep going to through biopsies and screenings and waiting to see another suspicious area. I really don't want that. Then after all that your breasts are banged up as you said and tissue is removed, what are you left with. Not much for those of us with smaller breasts. It's interesting you wound up with ILC on your "good breast". Right now I have ALH on the "good breast" and IDC on my left. It doesn't make me happy,but it makes BI seem much more reasonable!
0 -
Sweetie, Gulp is a good example of why I went with the BMX to begin with, plus my family history. I have read where so many woman have had lumpectomies and radiation and then the cancer comes back, or their margins are not good, and eventually have to go through a mastectomy. My doctor wanted me to do the lumpectomy with 7 weeks of radiation, that is what he encouraged me to do, but after much soul searching the BMX was best for me. Another factor for me was location, I live over an hour away, one way, from a radiation center. I made the right decision because they found a-typical tissue in my prophylactic breast post-op pathology. To me the hardest part was making the decision on what to do, once that was made, I felt much more at peace. We are here for you! Good luck tomorrow!0
-
Cherries, My left nipple is a lot lighter than my right. It was the nipple that had a scab after surgery. It is also the one that has more sensation, I'm not sure why.0
-
gulp: My PS said that after I finished my fills my exchange can be anytime after 3 months since everything has to heal and strech first and settle into place. He'll measure and determine what implant 5 weeks after my last fill and then we'll schedule exchange surgery at that point.
I too had more cancer than first though because of dense tissue. I was originally diagnosed as IDC that was .7 cm and then it was found to be over 2cm and my final pathology (after 2 lumpectomies before the mx) reads that I had in me IDC and DC and 2 different pre-cancer cells as well.
My onco assures me the tamox is keeping anything "lurking"in those dense tissues on the right side from growing bigger at this point. I'll just stay on that Tamox train for now.
0 -
PB, I feel silly, I have the moving comfort sports bra! I have been exercising in my JCPenny zip-up sports bra and sleeping in my moving comfort. I am going to have to switch that around I guess. Oops!
I wanted to ask you, since we are about the same time out post-surgery, are you having a problem with fatigue? I'm still getting very fatigued and really have to push myself throughout the day.
0 -
Sweetie, at first I was given the option of a lumpectomy with radiation. Then after MRI another DCIS was found in the same quandrant which would call for a quantrantectomy plus the radiation. I felt that too much tissue would be taken and reconstruction required of some sort anyway and didn't want that after radiation. I also thought figured there would be more biopsies and worry in my future so the bmx was best for me. I didn't have expanders, it was straight to implant.
TN: I thought we had bought the moving comfort bras at the same time. Yes, I am fatigued. Especially noticed when cleaning the house. I can't see to get it done all in one day. I also find that after being busy out of the house for a few days, I have one day where I want to crash. Today I was exhausted all day and didn't make it to the gym. I'll have a few energetic days then tired. I am also on arimidex which has given me joint stiffness. I do seem less motivated when it comes to projects. By this time, I normally would have flowers planted outdoors, can't seem to find the energy to maintain what I do have. Even if I'm out of the house and sitting alot ie watching my boys in their competitions and band performances, I find it tiring.
0 -
Sweetie: I was thinking about you today since I think you had your consult today. I hope it went well and you will be at peace about whatever you decide.
0 -
Sweetie: Good luck today!0
-
Hi all you wonderful ladys, Gulp,fairportland,TNlady,Bccolorado,Pb22 and rest...thanks for your support had the second opinion yesterday with a very experienced surgeron who comes highly recommended. He said he doesn't do nipple sparing and doesn't agree with them becasue bc can be in the tissue, this blows my mind because he recommended I do a lumpectomy on invasive ductual carcinoma! Now If I did that I would take out the lump and still have the nipple! I just don't get that logic. What i think is that the doctor's don't really want to do this type of surgery because it involves more and it's easier for them to not do it! At this point I have consulted two doctors who work with a major hospital and I can find no one in the area who does it. They keep pushing lumpectomy as well and I have small breasts and he even said I won't like the way it looks and then said I won't like reconstruction either. thanks for the encouragement doc!! I know it sucks either way, but gosh give me a little hope. I am leery of lumpectomy because I don't really want radiation and can't see the point of half a breast that is shrunken by radiation and distorted. So I have a nipple but I won't feel very good about the breast overall anyway. At this point I have ALH (precancer cells on the other side) he wants to take the lump out and see what it is but says he thinks it's nothing. How can precancer cells be nothing?! He's seem very conservative in his approach and I think it's because that's the standard of treatment and they won't push for more unless you push them or your disease warrants it. I am waiting for the gene test (did any of you have it?) so if that or the excision on the other side is positive it's straight for MX, nipples or not. If negative I'm back to weighing out lumpectomy/mastectomy. No chemo at this point, (i hope) MRI doesn't show nodes. Did any of you need any chemo? Anyway ladies you've all been great and I may try calling a hospital in NY to see if I find a Dr there who does nipple sparing as one of you recommended, but at this point I'm mentally and physical exhausted! thanks for thinking of me and I'm glad your all doing so well! It is encouraging to hear your stories!
0
