Nipple Sparing Mastectomy with immediate reconstruction

Anonymous

I just contacted BCO and asked them to review current research and possibly update the site.  I told them I felt the little information that was offered seemed to be slanted against NS.  But current research shows it is just as safe as SS and has the same rate of recurrence.  I also asked if they could post information about micro fat grafting.  Even though this type of reconstruction is fairly new I think women should be made aware of all of their choices so they can make an informed decision.  Maybe if everyone wrote in and suggested the same they would change this.  Just go to the home page, scroll down to the bottom and click on the "Contact Us" button.

momof3brca

TinaT - The info you shared in response to vhshea's question about what the PS actually did in treating your skin problem is exactly what I was wondering also.....that was so helpful.

vhshea -  It sounds like my daughter and you have some of the same things going on.  She is 8 days from surgery.  Immediately after surgery I noticed what looked like dark purple bruising....it continued to get darker.  She also has some areas close to her incision (which are in her breast fold) that are oozing and she has a black dot thats just a bit smaller than a BB which the PS says is necrotic tissue.  Today she saw the PS who said it seems to be looking "just a little" better,  She also said we wont know for a couple weeks if this tissue will survive or not  I will be checking to see how you do.

Just_V

momof3BRCA - i did see the PS yesterday - he sounds more hopeful - first fill not for 3-4 weeks, giving the nipple and breast area a chance to continue healing - he says that the scabbing should fall off in a total of 4-6 weeks, so we will know then.  and he believes that the necrotic tissue i do have should be fairly easy to correct.  i feel much better physically now, and emotionally since the skin does seem to be healing to some degree... Tina is so right about the doctors failing to prepare us for what we will see... guess they figure the nurses will clue us in, but the hospital nurses are general and not BC, especially not NSS, specific... thank goodness for this forum and our lead educator, tina!

vmudrow

I saw my BS yesterday for my yearly checkup and told her I was so lucky to have found her because she does nipple sparing - she said that here in Utah not many surgeons do it, not trained and still a little controversial.  She thinks it is great for patients that qualify. 

Kate - about the info you posted - ture you do lose nipple sensation - but if you don't have a nipple no sensation there either

Anonymous

Vmudrow- Exactly! Like I said, what is listed on NSM on BCO seems to be against it but wondering why that is. Even women who have had it done, and ended up losing a nipple, still seem glad they at least tried to save it. I've been researching the safety of NSM even more recently. The overall view is it is just as safe as SS. If a recurrence does occur in the nipple it is treated by removing the nipple at that time. Seems like the more conservative approach would be keep them and monitor.

louis13

i agree Kate..you cant put them back on after...and as i discussed with doc, it is no big deal to remove nipple if pathology does come back with anything undesirable the week after surgery- done in the office i am told...and i wonder, even in a worst case scenario where if later on you developed cancer from your nipple despite benign pathology at surgery...i just dont think this is dangerous place to get cancer, very accessible and going to be pretty evident asap??? 

vmudrow

louis13 - yes my BS told me that if anything developed under the nipple that it would be able to be felt very easily - remember everybody to monthly exams, and contact dr. if feel anything like a BB or pea.

Natrellex2

Hi Ladies,

 After undergoing a rt breast mastectomy in Feb. 2010 (with an expander), which also included the removal of lymph nodes, I did not have the option of NS surgery.  However, one year later, after the Doctors found some small calcification on my left side, I opted for a prophylactic mastectomy and decided to choose the NS option as well as immediate implant with alloderm.  I am currently one week post op and have noticed some bleeding from the nipple.  I am a little concerned since I was not told about any special care for the skin.  Did anybody else notice this, perhaps your doctors gave you the heads up and ways of dealing with it.  (do I apply lotion or leave it alone?)

 Thanks

TinaT

Natrellex2:  Since you weren't given any instructions I would suggest calling whomever is on call for your PS and get their advice before applying anything to your nipple.  It's a long weekend so I'm sure they're fielding lots of calls from people who aren't comfortable waiting until Tuesday for answers.  Is your nipple scabbing over or looking fine, but just bleeding?

There's another thread for women who've had one-step Alloderm/implant surgery.  I don't know how many had nipple-sparing surgery, but here's a link:

http://community.breastcancer.org/forum/44/topic/736507?page=85#idx_2545

Best wishes!

Anonymous

Natrellex2- I would definitely let your PS know about it and look for signs of infection.  Discharge and discoloration of the nipple are very common but it seems to slip our doctor's minds to tell us about it.  I was told to keep things as dry as possible but others have been told to put antibiotic ointment on it!  Wish the PS's would agree on something.  A lot of times you will develop a black scab over the nipple that will remain for a few weeks.  Once it heals the scab will fall off and the nipple should be all pink and healthy underneath.  

Natrellex2

Thanks ladies for your quick responses. 

 TinaT

A scab has formed, I noticed the bleeding yesterday after a shower. I will call my PS office and hopefully talk to one of the nurses.  All of my other incision sites seem perfectly fine.

Kate33

Thanks for the description of what I can expect over the next few weeks....

Just_V

so almost half my nipple is back to an almost normal color! the scab is off -- and i think the scabbing will continue to dissipate - think i will definitely lose an area under the areola of about a 1/2 diameter, and some in the fold under the breast where the inicision was -- i am really  becoming much more hopeful! 

my PS said that the scabbing generally is gone in 4-6 weeks - i am at 3 1/2 weeks, so seem to be on schedule.... one more timeline element i did not know before but b/c of the NSS and the additional healing of the skin, my first fill will not be until about six weeks post-op....

tina - i know i've already bugged you with this, but thank you thank you thank you for the assurances about what to expect from a healing perspective... it truly has calmed me down a number of times.

by the way - BC sucks.

TinaT

vhshea:  Yay!!!  So glad you found fresh pink tissue under the yucky scary mess!   It's very disconcerting.  And glad they'll hold off on fills for a while.  Again, my situation wasn't typical.  I think if it wasn't for the dye reaction I wouldn't have lost any tissue at all.  My PS did pull most of the fluid off that TE when enought time had passed and it was evident that trouble was a-brewin' under there .

I'll post some pix after my appointment on Tuesday with some closeups of the problem areas.  It's fading more and looking better.  I think it's going to look just fine after the PS does his magic! 

Hang in there girl!!!

Oh, by the way - BC sucks. 

momof3brca

Ladies, this evening as I changed the dressing on my daughter's breasts, I noticed there was some fluid gathering in the lower part of her breast.  When I applied the ointment on the area you could see the fluid move around.  I called the PS immediately and of course its the weekend so I got someone on call.....he wasnt too worried after asking a few questions.  Its not red or tight or hard or painful.....  I am still uneasy because its in the area where she is having skin issues and that skin seems so fragile.....seems like adding fluid under it could make it tear or even burst....She got her last two drains out yesterday so I wonder if that caused it.....ughhh....what next...  Did any of you have raised blisters on your skin and nipple?  She still doesnt have scabs just peeling skin....it looks really raw.... The dark bruising is better but this phase looks pretty bad too......she is so upset....   Thanks once again!!

TinaT

momof3brca:  Sounds like it could be a seroma.  The drains were removing serous fluid.  When they're gone the fluid can collect.   

If it was me I'd follow the PS's instructions, but call back if there's a change.  There's lots of good info on breastcancer.org besides the discussion forums.  Here's a link to the info part of the site.  You can also google seroma and you'll find lots of info about seromas:

http://www.breastcancer.org/treatment/side_effects/seroma.jsp

momof3brca

TinaT - Thanks so much!  Will go see what I can find out.... Today theres really no change that I can tell....but its not worse.....

TinaT

I just posted some pix on the picture forum.  Had an expansion yesterday, but also posted some side-by-sides of my healing issues from nipple sparing/blue dye necrosis.  Actually, very encouraging for me to see how much better it looks now.  Just a few tweaks by the PS and I hope it will someday be just a bad memory....

sweetie2040

Tina-saw your recent pics..all I can say is Wonderful! So happy you've made it so far and now it's on to the good stuff. You look so beautiful with the TE. You are going to have fabulous results when you have your exchange. You hung in there and had a great Dr and now there is a light at the end of the tunnel!

TinaT

sweetie2040: 

How are things progressing for you?????  I went back to your picture thread and looks like no new updates there....did I miss something?

Natrellex2

Hi ladies, I'm fairly new to the thread, how do I access the pics?

TinaT

Natrellex2:  The picture forum is not a part of BCO.  It is a privately moderated site.  Please contact Lilah or MBJ by private message here.  However, they usually like you to be well-established on this site before giving you access so keep on posting your questions and support!

justagirl

Natrellex2, to obtain picture access, you need to post like 50 times so they can get the feel that you  really belong here and aren't just some weird perv. 

kim2005

Hi all,

 I had ILC 5 years ago and used my latissimus muscle with implants for reconstruction on my L breast....I did lose my nipple and have a tattoo.  For the past 5 years I've had MRI's each year on the R breast and a few months ago they discovered a rare benign tumor they call PASH.  Needless to say, I'm really tired of the constant 'waiting game'.  I decided to have a NSMX on the R breast and have the surgery scheduled for Aug 31.

I'm starting to get scared though.  I asked PS about possibility of losing nipple and he said 10-15%.  That sounds low based on reading here.  We talked about using Alloderm too though the fat-grafting is sounding amazing.  My PS doesn't have enough experience with this so I'd need to go elsewhere for that.

My R breast is still attractive and for 5 years it's been challenging for me to look at my L breast and for 'cancer' not to come up in my mind immediately.  I'm afraid to lose the looks on my R breast too.  I know this may sound vain but I also know that you guys will understand better than any of my friends who have not had to deal with these issues.

I'm apologizing right now for the length of this message too!  Some of you have mentioned a picture thread.....where/how do I find this?

I teach yoga too....I'm very sad to be gone from teaching and hoping I can go back in a few weeks and just instruct verbally.  How long did it take before you felt comfortable say stretching your arms completely overhead or behind you without feeling that you would damage anything?

This indecision is killing me!  With this R side being a prophylactic MX I'm torn between continuing to monitor breast with MRI's or have the MX and deal with the outcome.  My husband is trying to be supportive but somehow I feel bad for him too if I lose my R nipple and fullness.

Thanks for listening

vmudrow

kim 2005 - just be aware that if the nipple survives most ladies lose sensation.  I had nipple sparing MX for ALH (precancerous) because I was tired of all the tests, worry etc.  I have been very happy - both nipples survived!!  I had tissue expanders, then exchanged to implants - the recovery was no lifting arms over head for about a month and about 6 weeks before I could start exercising again.  Good luck and keep us posted!

Hugs, Valerie

sweetie2040

Tina-thanks for asking. Nothing new to report, still have tons of ripples. Right now taking the summer off and I'll think about options again in the fall. I'm just tired of surgery. I look fine in clothes and in the right bra. I'll keep you posted.

TinaT

Hi kim2005 - The picture forum is not officially connected to this public site.  It is a private site and you have to get passwords, etc for access for privacy and security reasons.  Please send a PM through this site to Lilah, firni, or MBJ for info.

By the way, there's someone named Cameron who had PASH.  She has quite a lengthy thread on the picture forum and is very open and informative about her journey.  She didn't have nipple-sparing surgery, however, so she's not on this particular thread.

I have pictures there as well.  I had bilateral NSM, but had healing issues so lost part of one nipple to necrosis.

It ain't easy, is it????

Anonymous

Kim- Research shows that the greatest contributor to the success of NS is your surgeon's level of experience.  Not to say that you wouldn't lose it if you had the most experienced BS out there but if you want to stack the odds in your favor do your research and find someone with lots of experience.  There have been some new members on here who have had some issues but overall I would think the success rate is much higher than that.  (That's why I would question how much experience your BS has just to make sure.)  I see much more success stories on here than failures.  As far as fullness, though, you shouldn't lose any of that.  You decide how far to go with your fills and the ultimate size of your implant.  Even though your BS doesn't do fat grafting this is something you can do later if you're not happy with your results.  There are also a few surgeons who are doing a complete breast recon using just fat grafting.  No TE, no implant at all.  The benefit of this is your pectoral muscles aren't altered, no implant to replace down the road and no foreign object in you.  I wish I'd known about this option because I think a lot of issues I've had have to do with the stretching of the pec muscles.  One of the surgeons is in Miami.  You can read about this option at miamibreastcenter.com.

Only you can decide which is worse- the possibility of losing your remaining nipple or the worry that comes with every MRI.  It's such a personal decision and there's no right or wrong answer.  Only what feels right to you.  Good luck!  (((hugs))) 

Anonymous

Tina- I just saw your new photos and you look absolutely amazing!  I think you win hands down for best looking TE's!  LOL!  Despite some challenges you've always had such a great attitude about everything!  So happy that things are working out for you!

TinaT

Kate33:  My husband and I have just both been amazed.  He just keeps saying, "Good for you for pursuing this and doing all the research and being willing to travel so far - it's been worth it". 

I had to apologize to my PS recently.  I remember at my first post-op visit I was sort of grumbling because my right side looked great, but the left (cancer) side was a bit wider and had a tiny little point at the bottom (now I know it was just a little fold in the TE).  I guess since the right side looked just like my real breast I assumed that was the norm and I was stressed that the left one didn't come out right.  As the PS walked into the room his PA said, "She's concerned about how the left side looks".  He checked me over and said, "I hear you, I hear the concern in your voice.  I think it's going to be OK."  Geez, they probably wanted to smack me upside the head! 

I was in damage control for so long that it feels now like things are moving really fast.  I think I'll be able to schedule my exchange for later in the summer or early fall! 

EileenKaye1

To TinaT

Congrad's--you look awesome.

Thanks so much for sharing.

Eileen