Nipple Sparing Mastectomy with immediate reconstruction
Comments
-
As I approach my 1 year since diagnosis ~ I just wanted to say a huge THANK YOU to the original poster and the women on this thread. I especially remember the encouragement of Kate33. I had never even heard of NSM until coming here and just knowing this was a possibility made the thought of a BMX that much easier to swallow. I was very fortunate that the BS I was referred to by my GP just happened to do NSM.
I have found that almost NOBODY outside the BC.org world knows about NSM and I make sure I mention it whenever I have an opportunity. I'm not shy!
Never thought I'd be discussing my nipples with the women and men at work! I had my NSM BMX on 11/30/2010 and my exchange in 4/2011. I don't have feeling in my nipples (they do respond to cold) but I'm SO glad I was able to keep them because I look like "me".
So thank you to the women on this thread...and I hope more and more women will be aware of and be eligible to take advantage of this procedure.
0 -
Therese - I'm two weeks out from my ss/ns BMX w/immediate implants & Alloderm and I have a lot of funky feelings in my breasts - while still in-patient I had terrible muscle spasms from my pecs having been manipulated and they gave me valium which really took the edge off that - that subsided w/i a couple of days. Now I have pressure, a swollen feeling, and sometimes zaps and zings that really feel like nerve-related stuff . . . as Kate33 says, bring it up w/your PS if it's bugging you or even if you just want to check in on it. For me, none of it's been too troublesome - have only taken regular Tylenol since I was discharged, but it's hard to know what's "normal." Neurontin is a fabulous drug and if you are in a lot of discomfort, I'd explore that.
It is so interesting that ss/ns MX is so unheard of in so many places b/c it was LITERALLY the first option my surgeon mentioned. I do have the benefit of being at a major Boston teaching hospital. It's too bad it's not well-known more places b/c yes, there is a HUGE comfort level in coming out w/very similar-looking parts to those you go in with!
Sarah
0 -
Chiming in here as well since I had NS/SS BMX on 09/13/11. My BS said ALL her mx procedures are done ns/ss absent medical reasons barring same. I totally agree that it made the whole BMX process less stressful since I still feel like I look like me for the most part. My BS is not part of any large medical facility or teaching hospital but simply a down to earth & seemingly sensable lady! Nice to know the nips are safe even in my suburbs....
Karen
0 -
Kate, thank you for that info! My BS and I did not know that the law only covers matching, no prophies....have you noted that now the MRI laws are getting changed? More drs. want them, and they are denying them....yoiks.
I haven't heard about the 1st level of appeal we sent, loaded with letters.....but I hear it is very common to go to the third level.
(sigh) "suitable for mammography indeed"....it's not my boob that is dense.
What is really weird to me is that the oncologist and the radiologist are at cross purposes with each other. They are in the same cancer center, yet due to her call on my report, I cannot get the MRI. Bizarre.
0 -
annie- So sorry you are having to fight like this for something you know is what your body needs. It's just so wrong. It's doubly frustrating when you have 2 different doctors in disagreement. It shows even more that the whole BC thing is no where near a perfect science. Hope you can get it all straightened out, have done what you need and move on once and for all. (((Big hugs)))
So glad to hear that more and more women are being offered the choice of NS. Unfortunately, it's still more the exception than the rule. The more women know about this option, though, the more they can demand that ALL surgeons get trained in this and offer it to everyone who is a candidate. No one should ever, ever have to lose a body part unneccesarily because it's just easier for the surgeon to do it that way. We, as women, need to demand more so thank you for all of you who spread the word!
0 -
Curious about this law regarding matching in a UMX. I had the NSM in May, with a TE installed. Had the exchange procedure in July. All along I thought the TE was being overfilled, but my PS assured me that he was working to make both breasts match each other once all was said and done.
So fine, in the July procedure I also had the other side lifted (mastopexy). No issues there, but now, 3 months later, it's pretty obvious that the implant is too big. So back under the knife I go for a revision. Since it's primarily for cosmetic reasons (though isn't my personal satisfaction something greater than just "cosmetic"??), would this subsequent surgery still be covered? I have the consultation appointment in two weeks, so I'll find out more details then, but I figured I'd ask here just the same. Thanks.
0 -
orangement- Since the wording is insurance has to pay so they are symetrical or balanced, and they aren't, I would assume it would be covered. Especially if they made you larger than you were originally. My first PS made me too big, too, and I had them swapped out for smaller ones, and it was all covered by insurance. Good luck!
0 -
Thanks for your reply, Kate. It's reassuring to hear of other stories like mine, though I feel bad that you had to have an additional procedure that really should've been avoided. I guess that's what bothers me the most about all this, that they couldn't get it right the first time. Oh well...
0 -
orange- I hear about lots of women who end up wanting to go smaller but not sure I ever hear of anyone wanting to go bigger. I'm not sure if PS's are just so used to doing boob jobs all day and just assume we want to go bigger or if it's just not an exact science and they're just kind of guessing on size. But when someone is a uni they should be able to know how big to go to match. Sorry you're looking at another surgery. For my revision it was more about wanting to do the fat grafting to cover up the implant since I was having issues with rippling and other things. They took out the implants, put in smaller ones and then did the fat grafting over the top of everything. I ended up about the same size but it just looks more natural so I'm glad I did the extra surgery for that reason. I really hope they can fix things for you and give you the results you want and deserve!
0 -
TinaT, Kate33, and Sarah, thanks for the insight and perspective. It's so helpful. I may be expecting too much in too short a time. It really helps to know tht other women are also having these pains -- although I wish none of us were! Kate, thanks for the suggestion that I consider removing my bra. That was definitely bothering me, but I hesitated to take it off for fear that I might be creating more problems. Saw my ps today who told me he preferred that I not wear it. Orangemat, here's hoping that insurance covers the second surgery.
Have a great day tomorrow all of you!
0 -
Hi, I haven't been on for awhile - hope everyone is doing well. October 8th was my one year since exchange surgery - time has flown by.
There is a lady that would like to gain access to the picture forum. I think she PMs Lilah, TimTam, MBJ? She has made 51 posts - and is thinking of having nipple sparing. I will let her know about this thread - thanks!!
Hugs, Valerie
0 -
Valerie- MBJ is going to be off line for a few weeks because she's moving so have her PM one of the others. There's also whippetmom and Estepp. So great to hear from you! Hope you're doing good. Love your new photo! Very pretty!
0 -
Hi Everyone,
This is my 1st post.
I was diagnosed Aug 3rd. After much research and soul searching have decided on a BMX with TSM and direct to implant immediate reconstruction.I've done my research and had 3 consultations with BS and PS. I originally thought DIEP Flap would be a good choice , I mean a Tummy Tuck at the same time sounded good, even though recovery would be hard. However I am not a candidate. I am really glad I ended up here. I am in the process of scheduling my surgery for late December 2011. Anyone have any sage advice? I can use all I can get.
0 -
hawaiik,
I'm new on this thread, too. I usually hang out on a DIEP thread. I'm just wondering why you're not a candidate. I know lots of docs will tell women they don't have enough fat, when they really do, if they have a different doc! I'm 5'6' and weigh about 117, yet I had flap recon. Just wanted to get that out there. I don't know if this has come up on this thread or not. Good luck on your immediate recon - it gives the absolute best results if you make sure to find really experienced surgeons!
0 -
hawaiik- I just wanted to welcome you. Someone once posted this is the club no one wants to join, the hazing is a bitch but the sisterhood is for life. I'm glad you found BCO because this is such an amazing place! There is so much information and support! It was my absolutel lifeline as I was going through treatment. I'm sorry you are looking at having a MX but glad you have so much time to prepare. It sounds like you have really done your homework. (Smart!!!) There are some great threads on here about how to prepare for surgery, what to buy, pack, etc that are really helpful. Though it's tough thinking about a MX being able to have nipple sparing really does go a long way towards feeling "normal" afterwards. So glad you have this option. The only advice I would give you is to keep doing what you're doing- research, research, research. There's only so much our doctors think to tell us so this site was a great place for filling in the gaps. Wishing you the best. (((hugs))))
0 -
Hi Minnesota,
I had 3 PS consultaions. I am 5'3 1/2 " and between 115-120 depending. Right now about 115 with all the stress. All three are experienced Diep surgeons and all 3 said not enough fat/tissue. 1 did say I could have a latissimus dorsi flap with implants, but that wasn't his 1st choice as it sacrificed muscle. 1 ps was in New York, 1 in Newport Beach , 1 in San Francisco. The 1 in New York is supposed to be one of the developers of the DIEP procedure , so Im not sure I can only guess its the way my body fat is arranged???
I do have some muscle since I used work out , so could that be why? Im surprised by your post and would like to know more.
0 -
Hi Kate33,
Thanks for the welcome and hugs I really need them! I will work my way through all the things you mentioned. I love your intro about the abbreviations, and what to ask your doctor. Sometimes it's hard to think clearly when you are in the middle of it all. I was so overwhelmed when my BS told me it was cancer, I think she was just as surprised as I was since I did not have a biopsy first. It was her opinion to do the lumpectomy straight away since I had a biopsy in 2005 and there was already a marker in there. She wanted me back in surgery that same week! Thank goodnes my Primary Doc had BC herself and said lets do some research. I am naturally that way and then it began, so yes I have taken my time.
0 -
Hi Hawaiik, sorry you've had to find this place, but glad you did! I'm almost 4 weeks out from my NS BMX with immediate reconstruction (saline implants + Alloderm). You are doing all the right things, in my book - as Kate33 said, research and preparation are key . . . those surgeons are too busy to give you the low-down on the day-to-days pre- and post-op. There is a great thread here on shopping/packing/to-do's for surgery and recovery (http://community.breastcancer.org/forum/91/topic/699896?page=1) that I found IMMENSELY helpful. And just jumping in and asking questions is great, too.
I'm happy to answer anything at all, based on my recent experience - I think both short- and long-term perspectives and ideas can be helpful. I will say that so far, I don't regret my decision at all - I too was told I couldn't do DIEP (I'm about the same size as you, quite muscular) and I also was worried about the recovery time from DIEP and the muscle loss w/LAT.
Sarah
0 -
Hi Hawaiik,
I too was told I did not have enough tummy fat for a DIEP. I'm 5' 4" and about 125# - really thin from the waist up but plenty-o-fat in the hips and thighs, LOL. I had nipple sparing on the R (my prophylactic side), and so far I am thrilled with the results!
0 -
Hawaiik- I wanted to make you aware of another recon option besides flaps and implants. It's not readily available but since you mentioned you consulted with several surgeons in different locations I wanted to pass this on. Surgeons can now do either whole breast recon, or augment implants, with fat grafting. It takes very little body fat to do this procedure. The great thing about it is there's no need for additional incisions or trauma to other muscles. They use a method of liposuction to remove the fat and inect it into the breast area. If they do the whole breast there's no foreign objects to place or replace down the road like with implants. Some surgeons do require you to use something called the BRAVA system and it can be a lengthy process (depending on what size you want to end up it can take several rounds of fat grafting) but the results are wonderful and a lot of women retain a lot more sensation afterwards. I wish I had known about this before my recon. I recently did the fat grafting over the top of my implants and that alone made a huge difference in my results. I do have some names of various surgeons doing this procedure across the U.S. if you're interested. You can PM me or just post a question here if you want more info.
0 -
Hi Kate - thanks for the info. It isn't a new photo - after 1 1/2 years I finally figured out how to get a picture on here
Hawaiik - this is a great place - I too was not a canidate for a "tummy tuck" - the best advice I can give is don't worry. For me the surgery was not painful and I have been very happy with the results. Let us know if you have any questions.
Hugs, Valerie
0 -
Hi, I just found this forum and I'm so glad. I am scheduled for BMX with NSM with one step reconstruction on October 28, 2011. I have had a hard time finding any information on this surgery. The plan is for alloderm and Mentor saline implants. Does anyone have any information at all to share with me. I am hoping to be a little smaller after surgery. I am a DD now and would like to be a C post op. Please I would love to hear from anyone that has had this prodedure.
0 -
Hi Denise - you are scheduled for the exact same surgery I had 9/19 - also w/Alloderm and Mentor saline implants. What would you like to know? Surgery was easier than I anticipated (anticipation for me is usually the worst part). Recovery is feeling slow - I am a very active person with an 8-year-old daughter and having my mobility limited, in addition to the fatigue is frustrating. However, all looks good from a healing standpoint and I am looking forward to week 6 or 8 when I'm cleared to start regular activities again.
I was a B cup before surgery and am a little smaller B now - I had BC 10 years ago in my left breast and had lumpectomies so that breast was a little smaller - my surgeon matched the right to the left. I assume you communicated w/your surgeon re your size preferences post-op? So important to get that out - but my guess is you have, b/c from what I have read this procedure's not good for women who want to get/stay bigger.
It's too soon to tell you how I feel about the way they look - I think they will be fine. I will say there is NO WAY to tell I've had any surgery at all when I'm wearing a bra. Really amazing. Naked, I look a lot like myself, just w/some new scars and a little differently shaped breasts. They are firmer and will always be that way. I have some swelling on the sides of my chest that's distorting the way the implants look for now - particularly on my left side where I had radiation before - that'll go away in time and I'll see "final" results.
What else? Just ask. There are lots of women here who're willing to share.
Sarah
0 -
Sarah, thank you so much. I wanted to cry when I read your response. You are the absolute first person I have found to "talk" to who has had this surgery. The PS anticipates that I will go home with 4 drains. Were these a problem? On my final visit with him, I got so upset and confused looking at the pictures. I started doubting my decision and thinking maybe I should have gone the TE route. I finally decided that I had been headed in the "one step" direction since the first visit with the BS and I wasn't going to start changing things now. I finished chemo on 9/16.
denise
0 -
Denise, it's my pleasure - I know how hard this can be! I had 4 drains too - they were a pain in the rear more than anything. You might want to check out this thread: http://community.breastcancer.org/forum/91/topic/699896?page=1 - LOTS of great tips for prepping for surgery. Some women found that the post-op cami's with drain pockets were helpful. I didn't have one of those but instead just pinned my drains to whatever I was wearing. Also - get a lanyard or shoelace so that you can pin them up when showering or sponge-bathing. Your PS can tell you if you can shower right away - some do let you, some don't.
What made you doubt your decision? Was it just overwhelm? There is so much info., and for me, it felt like there was no choice that I really wanted. Who wants to do this??? I chose this procedure in large part b/c it would get me back to "normal" as quickly as possible.
Congrats on finishing chemo! This is a long haul for you. I will say that I think surgery is easier than chemo - I did chemo back in '01-'02 and find that although this surgery is physically and emotionally challenging, the fatigue is more bearable than chemo - when you rest after surgery, you feel rested! Not something I felt w/chemo. Also, although there are down days, for the most part you're making progress every day/week after surgery - unlike chemo where every treatment brings you further down in energy. I hope you find it to be this way, too.
Again - any questions, I'm here. Hang in there, this is the hardest part!
Sarah
0 -
Denise- I had NSBMX with alloderm on June 22, 2011. It was supposed to be immediate reconstruction but after the breast tissue was removed my skin was looking too distressed and they had to put expanders in instead. I am not sure if this is common or if your doctor even mentioned it as a possiblilty. I am only sharing it with you because I really had not researched any other options and after the fact felt out of sorts and uninformed about other options. I really wanted as little surgery as I could but when it did not work out that way I wished I had done a little more research into a backup plan. Good luck!
Ginger
0 -
Thanks , you are so sweet to reply, I will go to the forum you suggested that is my next step I am a planner so I will start packing now! I have no idea what to expect, right now I am just feeling the relief of making a decision. It's been a heart wrenching thing all the way around. I feel good now and satisfied with my choice. My surgeon does not use alloderm which I think is a little different.I don't know what type of implants I will go with yet. Im told silicone feels most natural but 1 of my best friends had saline implants for her breast augmentation and they look the most natural I've ever seen. Although you cannot compare augmentation to recontruction .
Karen
0 -
Ladies,
I know this might be perceived as a weird question, but did anyone have pictures taken of themselves , you know, in their Birthday suits, before surgery?
0
