nipple sparing surgery without reconstruction

Bettyboops

Has anyone had nipple sparing surgery without reconstruction? I am having a bi-lateral mastectomy in a week. I originally was going to have implants with nipple sparing surgery (if they can). Have had a change of heart and am calling the breast surgeon tomorrow. I don't think I can handle subsequent surgeries and the lifelong maitenance project that goes along with implants. I am not a candidate for the trans flap and any of those types of reconstruction. Advice, comments, ideas?

I need help! Thanks!

Bettyboops

thanks kayb, yes it's an individual decision -  it's so hard to make and I don't like any of the options really. I know some women have no probs others have nightmare scenarios. I feel that I don't want to deal with subsequent surgeries. I'm 55 and counting...Thanks for sharing.

cinnamonsmiles

So you are thinking of saving your nipples but NOT getting reconstruction?

LindaKR

BC1 - please let me know what you find out.  I'm planning a PMX this year (had UMX almost 3 years ago).  Tired of foobs, loop-sided, pain, LE issues from the bra strap, etc.. and just want to other one off.  My husband would like a way for me to keep my nipple (sweet ?), I'm pretty sure that they would have to take it off and put it back on, I'm pretty large, but haven't asked the docs the questions yet.  I would love to know what they tell you - can just the BS do it, or do you have to have a PS, I'm pretty sure you would have no feeling, but the appearence might be more natural, I don't want any extra skin left to hang around, my BC side is actually concave and the skin is super tight because of the high radiation doses I received.  I think it's a great question!

SpecialK

bc1 - without an expander or implant under your pec muscle your saved nipples will be very low on your chest without being relocated, of course, this is depending on how large your breasts are now, so you maybe looking at BMX plus a lift. You will not be saving any sensation with nipple sparing, do you just want them for aesthetics?  What about a direct to implant surgery using a small implant?  Both of my sisters-in-law have implants (for augmentation) that are almost 30 years old - no problems.  I believe that implants are not warrantied past 10 years, but that does not mean they have to be swapped out at that point.  I did skin/nipple sparing with tissue expanders, then implants, and I am now 56, was 54 at diagnosis.

beacon800

I have no specific info on this.  On the face of it, it kinda seems like a lot of work to save the nipple if there is no breast and yes, it will certainly have to be appropriately relocated on the new breast area.

One other possibility is to tatoo a nipple onto the unreconstructed chest area.  I have seen that done as there was a photo on the website of one of the well known nipple tatoo artists who had done that for a patient. 

I have thought about something like that tatoo from time to time.  I am unreconstructed also.  Not sure if it's right for me.  I think it would look more "normal" but I'm not sure I would care about it that much.

Let us know what your doc thinks of the idea

LindaKR

A friend of mine has her nipple tattooed - it looked so real, I wanted to ask to touch it because I couldn't believe it wasn't a realy nipple, I did restrain myself.  Just saying it was very well done.  The lady that did my friends does it free for BC survivors!!!!

tuttifrutti

I had nipple sparing bilateral surgery and had tissue expanders put in -having been told I could not keep my nipples unless I did implants . The tissue expansion has been horrific for me. I hate the sensation. I hate my chest muscles being pulled and tight. I do not want to get implants anymore ! I do want to keep my nipples and I have found zero information regarding this ! I have only found your post. bc1-what has happened for you ? I plan to get the tissue expanders out... but my PS  is encouraging me to still think about it. I'm becoming quite sure I want only me on the inside. If I want fake boobs I can wear a prosthetic if need be. I hate the feeling of my pectoral muscles twitching -even when I yawn ! I pray that the PS can explant the T.E. and "tailor" my skin so that my nipples are still there and not placed too far down. any comments ? do you know of any experts ? Thanks !

Tomboy

thats what i want.

Bettyboops

hi ladies,

I just found this old topic of mine! I am 10 weeks out from an explanation and just started a new topic " implants Removed-Yay! Check it out and let time know what you think. I think you can guess that I did go through the expander and implant process but was never comfortable. I'm very happy now!

Best,

Ashweb901

did any of you ladies manage to save your nipples without reconstruction? I’m having my expanders taken out and my PS has not met with me since I made my final decision. There are no photos I can find anywhere to show him what I want

Icietla

Hi Ashweb901. I am wondering if what you have in mind is what is called Top Surgery? Here are some photo views of what is called FTM Top Surgery. I understand there is an outstanding Surgery Practice doing this type surgery in Florida. That might be the one nearest to your indicated locale.

https://images.search.yahoo.com/search/images;_ylt=AwrNJkmQ1c5bQQIAWUxXNyoA;_ylu=X3oDMTByMDgyYjJiBGNvbG8DYmYxBHBvcwMyBHZ0aWQDBHNlYwNzYw--?p=ftm+top+surgery&fr=mcasa

Mominator

FTM (Female to Male) Top Surgery is a gender affirming procedure for transgender men and non-binary individuals that creates a masculine chest. Top Surgery involves breast removal (Subcutaneous Mastectomy) and male chest contouring, and may also include free nipple grafts, or nipple/areola resizing and repositioning.

You probably would want to discuss your goals with your surgeon. What you want is mastectomy with nipple sparing without reconstruction. I'm not sure if you want "male chest contouring." 

Almost anything is possible these days, probably even saving nipples without reconstruction.

Best wishes.

Icietla

I believe the "male chest contouring" is optional with FTM Top Surgery.

I hope you find a Surgeon who will achieve for you the result you want, Ashweb901.

Gaia74

I had skin and nipple sparing BMX a year ago with immediate reconstruction via implants. Long story but the incisions opened at home and I had the implants removed 3 weeks after mastectomy. Ended up needing radiation, PS agreed we could see about trying again for recon after rads. I'm not interested and so ended up with nipple sparing skin sparing no recon. Everyone is surprised with the unintentional outcome, surgeon said she never would have thought it would have worked- it's all very tidy and flat. Nipples are a bit floppy and uncomfortable as they are the only things that rub on fabric, but all in all it looks “good.”

pattycolumn

Gaia74, similar circumstances as you though surgery was in November 2018 so I have to wait until the skin heals for surgery. No radiation and hopefully no chemo. Stage IIB, invasive lobular.... Ironically, I just thought about saving the nipples at my extra skin removal surgery in the fall. All the extra skin is fascinating and Stephen Kingish looking at the same time lol. On a scale of 1 to 10, how uncomfortable to you? Thank you for sharing your story!

blah333

You can't have "chest contouring" with a mastectomy. Trans top surgeries do not take ALL BREAST TISSUE. Women who have breast cancer mastectomies get "all" breast tissue removed. That's why the results look so different.

pattycolumn

@blah333 Can you please explain? What is chest contouring? What are trans top surgeries? I understand that all the CONTENT of my breasts are gone, but the skin and nipples are still there. In fact, it looks like a lot of wrinkly skin but tacked down (doesn't move yet but I can tell it's loosing up). My PS said he will put some fill to build up the upper portion of my breasts. I will have a lot of questions for him when I see him as it gets closer.

@blah333 I read all the previous posts and now know what chest contouring and TRANS top surgeries are! Thanks to all of you for the posts. So much to know about all of this.

Thank you!

amygil81

Ladies, thank you for starting this discussion. The sexual sensation from my nipple is what I miss most from having my left breast removed. I asked about a nipple-sparing mastectomy to keep that sensation. But my tumor was multifocal, so they needed to take my whole breast, nipple and all. I'd personally be reluctant to move my remaining nipple, for fear of losing that sensation too. I'd strongly suggest that you discuss that possibility with your surgeon, and make sure that you're comfortable with whatever the answer is.

snowcones

Hi Gala74,

I am so glad you shared. I have been trying to search for a surgeon to do my step II surgery. I was dx with high grace DCIS 12/26/218 & had nipple/areola/skin sparing BMX with TEs 2/13/19. My PS (at Stanford) did a new procedure called a hybrid where half of the TE is inside the pecs & half is hanging held up by the matrix. I have 2 maternal aunts with metastatic breast cancer & my grandmother had one breast removed at my age. I also didn't want to deal with radiation, HRT for 5 years, & every 6 months monitoring had I chosen to have lumpectomy.

I keep reading about breast implant illness & it makes a lot of sense because it is still a foreign body engaging the systems 24H a day for the lifetime of the implant. Anyway, I asked my PS to just take out my TEs, then put autologous fat over the pecs, then close me up. He says he doesn't do that. He wants to proceed with the silicones, but I do not want to anymore. I am 32A to begin with so I am basically flat chested plus my husband says he doesn't care either way. He is just worried it might affect my psyche later as I am a little vain

Anyway, do you mind sharing who your surgeon is? If he/she is not local, perhaps someone he/she knows from CA?

I am also curious on how it looks & how long was your recovery from the surgery?

Thank you.