Nipple Sparing Mastectomy with immediate reconstruction

TNLady

Marie, it sounds like you are doing great!  My nipple turned black and scabbed over, I'm 4 weeks post-op and mine is almost healed now.  You may want to buy some small sterile pads to put over it until it heals.  I would also put some Neosporin on it after washing.  The feeling comes back slowly.  The only place I still feel numb is where they took my lymph nodes out.  My drains came out a week after surgery, which was a great relief, but I have read some people have to wear them for several weeks.  My doctor told me that my fluid had to be under 30 a drain to take them out.  The most irritation I have now is from where I had the drain in.  They are very itchy still.  I'm so glad things went so well for you, you have been on my mind.  Keep us posted on your progress and take it easy.

marie111

TNLady: Thanks for the info. I see the PS tomorrow and I am really hoping he removes my drains but I am still getting about 40ml of fluid out of each one everyday. I can't believe you have all your feeling back, that is great and gives me hope ! Do you have feeling in your nipple too because they told me that would never come back ?

Marie

TNLady

Marie,  I only have feeling in one nipple.  It happens to be the one that turned black to begin with, go figure.  My doctor told me there was a chance that I could still get the feeling back in the other nipple. You are close to the 30 mark, so if you can't get your drain s out tomorrow, maybe you could ask him if you could come back in when it gets under the 30.  I was able to go back in a couple of days after my one week post-op visit to have mine removed.  They are very helpful in keeping the swelling down, so it is a good idea not to rush it, but they are soooo annoying!  Did your doctor rap you up in an ace bandage or anything?  I was wrapped, and that is another reason I had to wear the drain a couple of days extra, the BC side did have a little more fluid once he took off the tight wrapping.  Good luck tomorrow.

PB22

Marie, So good to hear everything went well with your surgery.  My drains were in two weeks. I had to have less than 20cc per drain.  I have feeling in both my nipples but not the sensation upon touch and still some numbness on one side of each breast.  I am expecting the nipple to be desensitized to some extent so anything above that is a bonus.

TN , I know what you mean with the pointed bra issue.  I am waiting for my to drop and fill in or else I'd want some more fullness.  I was thinking today how nice it would be to get my hair trimmed and a pedicure.  Just the fact I am thinking about it is such an improvement from where I was weeks ago.  Planning on going back to the gym tomorrow to use the treadmill. Still in PT and going well with range of motion.  

TNLady

PB, I'm glad therapy is going well for you.  I went bra shopping yesterday and I have figured out what type of regular bra we need until we drop and fluff.  Basically, it is going to have to be one without any padding/form whatsoever. Sort of like a training bra for a grown-up.  I had to try different sizes in each type of bra to find a good fit.  The biggest problem I had with the pad-less was some were a little wrinkly in the cup area, but I finally found one that was not too bad and would not show the wrinkles through a shirt.  I found one at Khols by Warner's.  It is wire-free and has a little plunge, so unlike a sports bra, I can wear a v-neck.  I'm sure you could find one in any department store.  Go treat yourself to some pampering, you deserve it!

 Went to the PS yesterday. 4-weeks post op visit-  I do not have to wear the surgical tape on my incisions anymore.  He says they are still a little high, so I can start massaging them down twice a day.  I bought some Scar Fade at his office to start putting on my incision scars-very expensive for a little tube.  Still not working out my arms in any way.   I still have a little hardness at the bottom of my implant on the BC side, but he said not to worry about that. He said everything looks good and I do not have to go back for four weeks.

TNLady

PB, I forgot to ask you, are you still wearing a sports bra 24/7?  I forgot to ask my PS yesterday!

PB22

TN, alot of my current bras have that wrinkle in them.  My orderfor the sports bras   from the moving comfort came, they are very comfortable except that I have to exchange them for a smaller size.  With all the fat removal I think I may have to go down to a 34.  I had ordered the 36 thinking I was swollen and would benefit from the same size but not the case.  I made it back to the gym to work on lower half and 30 on the treadmill. When I got home, I crashed and slept most of the day.  I started with a sample of the keto cote scar cream given from the PS and ran out so I ordered some on line. It is expensive as well.  I return to the PS Feb 5, which will be my 8th week post op. At my recent visit he said if I wanted more cleavage or fullness it would mean a larger implant size. I'm  a 375cc gel under the muscle.   Don't even want to think about exchanging them out now but will within the next year after things drop and fluff as you say.  Right now I look like I did in my 20's kind of like a "kid".  So for the readers who are after us in this journey, looks like week 4 and 5 is when you think about bra shopping!

Had my first follow up with the oncologist. My onc.. score was 15 so no chemo or radiation but I was placed on arimidex which I haven't started yet. I was pricing it out and its expensive.  I want to get back into working out to couteract any side effects. 

PS73

Hi guys, thanks so much for the positive energy!  I am doing good.  I don't sleep at night but its because of the pesky drains.  Im still draining approx 50-60ccs on the left and about 20 on the right.  I have a feeling the left will stay in til tuesday. 

I did well.  They let me leave a day early too!  My PS is a rockstar and got me my own room at the end of the hall.  I was a little nervous sleeping over night - kind of reminded me of halloween the movie.  I was completely allergic to dilauded, my face blew up 2x the size and turned red, I looked sexy but unfortunately my drains kept me from the bikini contest that was happening in the cancer wing. (i jest and no, not on drugs at all!).  My OR nurse was a fourteen year survivor and lovely lovely lovely.  ..i got my period the day of surgery to boot.  ..had been waiting for it for six months so Im not sure how I feel about it.  - ill go with happy since that is what I felt the day of and it certainly took my mind off of my scary surgery. 

My BS found nothing  bad behind the nipples so I got to keep them both, just waiting on the final path of the rest of the tissue.

Just wanted to thank you all again so much for your help and talking me thru expectations.  I couldn't have done it without you all!  xo

TNLady

PS73,  I am so happy things went so well for you.  I love your sense of humor!    We have to be able to laugh at ourselves, or we would go insane with all of this.   I had my period the day of surgery too, it was awful!  Is the swelling in your face better now?  That is great that you got to keep your nipples and I will be praying that your path turns out good.  Hang in there, you will improve each day.  It sounds like you have a positive attitude and that will help you in your healing process.  Keep us posted! 

PB22

PS73, great that the surgery went smoothly and you were able to get the nipple sparing as planned.  I too blew up from all the fluids given and the drug allergies and when I left the hosp. couldn't wear my shoes or button my jeans.  We will continue to follow along on this journey,. Takes a village ladies.

TN, I was told to wear what was comfortable. I wear to bed sport bra but one that is cottony like the tee shirt material.  I cannot go braless as the fabric burns my skin and nipples. I wear the camisoles with the shelf lining to PT and find those comfortable and have worn a regular bra without underwires for form to test the waters on appearance.  My friends/acquaintances notice nothing different about me.                                                                                              As my surgery was in Dec,holiday busy time for all,  I suspect those I haven't had a chance to tell what has gone on here regarding the dx and surg, wouldn't suspect a thing.  When you think about what we went through; having the dx, the consults and diagnostic testing,  and the tx of it by having the nipple sparing procedure, all within a few months, its like things are getting back to normal on the outside but we, on the inside, are still trying to figure it all out.   I'm trying to take my time in the recovery so my mind can catch up instead of getting back into the routine right now.  I am hesitant as the more I do the more is expected or asked and then you're back to it all and haven't had the rest and time you need to heal on the inside.

 The Moving Comfort company is exchanging out my sport bras without any problems.

Jill1965

Ladies, I had my total skin and nipple sparing mastectomy of the left breast Thursday.  The doc was beaming when he told my mother how successful the surgery was.  All the frozen section biopsies (nipple, nodes and skin) were negative, and he was able to proceed as planned with a tissue expander and ADM.  I have a "mini me" left breast for now with my own skin and nipple.  With the drain and a little swelling, it's a little lumpy, but I can already tell that the cosmetic result will be great in the end.  I am thrilled with the result!

TNLady

PB22, I agree with you 100%.  The healing process takes time, both physically and emotionally.  I go back to work next week, 5 weeks post-op, and I do have my concerns.  I am worried about my stamina, being around sick people, trying to be super-mom, etc.  I have days built in, so if it is too difficult, I can take more time off.  I have even thought about doing half days if necessary.  I think you are smart to take your time, until you feel you are ready to return to your old routine, you will know when you are ready.  I feel ready, just have some concerns, but I'm hoping this will help me to get my mind on other things besides BC.

You will love your bras when you get the right size.  I called my PS's office to ask how often to wear a bra, they told me 24/7 for around three months.  I guess every doctor is different. 

Jill,  Thank you for sharing, I'm glad your surgery went so well.  Please keep us posted on your progress, as it will help others.  May you have a speedy recovery!

PB22

Jill, congratulations on a successful surgery. I remember how thrilled I was when I first looked down to check out the handy work.

Wondering how Marie made out with her surgery????

marie111

Hello There !

I am doing well and slowly recovering. I am also thrilled at the handy work, it is quite amazing what they can do now. Unlike most of you I have TE so although it looks like my old breast - albeit a little perkier - it does look like someone just sat on them. I was not big chested a B cup at best so there is not much difference but I am looking forward to the fills. However I am a little nervous because I want to remain a B cup only maybe one that does not look like it breastfeed kids for 2 years !!! The pain is very manageable with Advil and I hope my drains come out this week - 2 weeks post op. I am however getting a little tired of the tightness - for those of you who have breastfeed I feel like I am completely engorged ! Please tell me this gets better ! I also have quite a bit of numbness and PS says it comes back for some and not so much for others - I hope I will be lucky since I am young and in good health. I do not have to wear a bra in fact I had no bandages except for surgical tape over my incisions and small bandages over the drains. Amazing .... I am very happy happy I decided to do the nipple sparring I don't think I would have done it otherwise.  I feel very secure in my decision but did have some major regrets last week post surgery but I think it was more the tiredness and stress of the procedure. I fell much better now !!

Stay well !

Marie

CrunchyPoodleMama

Hi, everyone - I'm going to have a nipple-sparing and hopefully skin-sparing mastectomy. I'm having trouble finding information about this too (even the info sections on bc.org don't even mention nipple-sparing as a possibility). I have a ton of questions that have come up since I met with my plastic surgeon and hope you all don't mind my asking.

Isn't the whole point of skin sparing so that you don't have to use TE's? I'm confused about that. Some of you mentioned the risk of stretch marks if you do a one-step reconstruction -- but if you keep all your own skin, wouldn't that not be a problem?

I'm so confused... the more I read the more confused I get! I have DCIS... had a lumpectomy... was going to do reexcision but my surgeon cancelled because there was too much DCIS still remaining.

What I don't understand is why my surgeon can't do a reexcision that is more extensive than he initially planned... then some kind of implant. Why is the next option mastectomy? It seems a bit extreme to me.

Then my PS was describing all the DIEP/FLAP stuff, which I realize now that I don't want to do. I want to have babies in my future... I don't want to NOT feel my baby resting against my breast! Does skin-sparing allow you to keep some skin sensation?

All I want is to keep my own nipple, keep my own skin, and have skin sensation.  I don't care if I wind up smaller or even a little deformed. Is all that impossible to ask?

FWIW, I have a high risk tolerance and am not concerned about the risk of DCIS appearing someday in now-healthy areas of my breast, or in the "good" breast. So I'd rather be as conservative as possible on the surgery front. 

Jill, I'm glad everything went so well for you! I see you're in Atlanta... who did your surgery? I've been very happy with my doctor but I don't like this "one extreme or the other" paradigm I feel I'm being pushed into.

KEW

Hi Julia--The TE's are to stretch the pectoral muscles, and skin if needed.  The TEs take time and can be uncomforatble, but I've heard that one of the possible problems with one step (mx with immediate implant) is that the pecs can push the implants out of the pocket and  you end up with the implant moving into your arm pit.  Also a friend of mine had single step and was in more pain than I ever was during the months of TE expansion, something to consider. 

I have some sensation coming back in both breasts, I'm 8 months out from exchange, and I'm getting some sensation back in one nipple.  Some women get a lot of sensation, for some it never returns.

Best--Karen

PS73

Hi Julia,

The nipple sparing allows you to keep your nipples.  The surgeon scrapes the cells behind the nipples and checks the cells during the procedure to make sure there isn't anything suspicious going on.  Just know that you can lose your nipples if they find something.  The old nipple sparing required the nipple to be cut off around the areola and then re-sewn.  Lots of studies including major hospitals like Sloan determined that this is not necessary and it was more about the oncological scraping which would allow the nipple to say intact.  I think that there is still some slight increase around 1% or so increase vs removing the nipple completely.

I don't know what you mean about skin sparing??  I am not sure if I did this. I did the alloderm which is a donor tissue which attaches to the muscle to help stretch it out vs naturally stretching over time which can be really painful.  Tissue expanders can be put behind the muscle and filled slowly - the good thing about the alloderm is that you can get filled to your original size so you wake up and its more comforting to see your body only slightly different.

There is a whole forum on DIEP and I think the big hospital is in New Orleans for this procedure.  ..I would ask more about the big gap in your stomache, this seems radical and off.

 *edited to add, I forgot to give an update.  Im almost two weeks out and doing good. Still no sensation but Im beginning to feel the tissue expanders.  Drains are still in which stinks, I need under 30ccs to get rid of them and yesterday i had 60 but today I have none yet so Im hoping that this wednesday they will both come out!  My foobs are rock hard!

"Never give in, never give in, never; never; never; never - in nothing, great or small, large or petty - never give in except to convictions of honor and good sense”
Diagnosis: 4/23/2009, IDC, 2cm, Stage IIa, Grade 3, 0/1 nodes, ER+/PR-, HER2+

CrunchyPoodleMama

Karen, that is great! and less than a year out, too... that is so great to know that sensation can return. I'm not "in love" with my boobs as far as the whole sexual thing, but if my husband and I are able to have a baby, I really REALLY want to be able to feel my baby resting against me. It would be devastating to me to hold my baby and see him or her resting on my bosom and not be able to feel it.

So all implants HAVE to go under the pectoral muscles? I really hate the idea of something going underneath my pectoral muscles. Is that how they do it with cosmetic breast implants too?

I do only want to be a B cup (although the PS insisted my current breast size is a C cup even after the lumpectomy) so maybe a smallish size would make it a little less painful.

PS73, thanks for the info! So glad you're doing well (rock-hard foobs aside)! Re: skin sparing, I guess I was thinking that for a regular FLAP type procedure, the breast skin is removed during the mastectomy and skin + tissue is taken from the abdomen.

I just remembered my PS didn't mention tissue being taken from my abdomen and said it would be taken from my back (I think??). I wonder why -- is abdominal surgery less feasible if you have a pregnancy in your future?

PB22

Crunchypoodle,  I am 6 weeks post op nipple sparing bmx and to answer your question regarding your desire to feel a baby against you, I held my furry dog and felt his hair and warmth against my breasts.  I have feeling in most of my breast skin except for one quadrant where the scars are  healing. 

Marie, glad you are pleased with the outcome.

CrunchyPoodleMama

PB22, that is SO reassuring... THANK YOU!!!

TNLady

Crunchypoodle,  so glad you joined in with us.  Skin sparing is when you keep just your skin and not the nipple.  Nipple sparing is when you keep both your skin and nipple.  It seems every PS has their own way of doing it.  Some will put the incisions at the crease of the breast, some around the areola, etc.  I had nipple sparing without Alloderm.  My implant are under the pec muscle and my incisions are near the fold of my breast.  It was painful and I do have some stretch marks, which I had before anyway (got all my boobs at once), but a positive for me was not having to have a second surgery.  As to whether you have to have expanders or not, my GS told me it depended on how much skin he had to take during surgery.  I went into surgery thinking I was going to wake up with expanders in.  I am 5 weeks post-op today and have much of my feeling back.  I have read that sometimes they can put the implant over the pec muscle, but I'm not sure how well that works.  One positive to it being under the pec muscle is that the muscle massages it when you move.  In augmentation they do not have to put the implant under the pec muscles because they are not taking your breast tissue out.  If we have missed any of your questions or you want to know something else, please just ask us.  I can tell you I do not regret having this surgery at all, I had DCIS in only one breast, but with my family history I decided to go with the nipple sparing BMX.  In my case, it was a good decision because when the pathology came back, I had a-typical cells in my good breast.  It is a big decision to make and I wish you the best. 

Marie, the tightness will go away, I don't have any tightness at 5 weeks.  That is a good way to describe the pain though, ENGORGED!  Hang in there you will improve with each day!

PS, I hope all goes well tomorrow and that you will be tubeless Thursday.  You will feel like you have been "busted out of jail " when they come out!  They may let you start massaging your implants this next week, that will help soften them up.  How is your pain?  You did not say anything about pain, so I'm guessing that you are doing pretty good in that department.

 PB, sounds like you are doing well.

Post-op 5 weeks:  I went back to work today!  I was not as tired as I thought I would be.  I teach middle school, so my job is more mental than physical.    I came home and cooked dinner and went for a walk after I ate.  So overall, it was a good day.  I will report back at the end of the week to share how I feel after four days of work.

CrunchyPoodleMama

TNLady, thank you SO much! You've given me info that I haven't been able to find on bc.org (although it's probaby buried within this forum in various places) and other informational sites. That really helps a lot. Thank you again!! Congrats on being 5 weeks out from your surgery!

PS73

Julia, good luck with your decision.  Once you make it, theres no going back so its almost freeing in a way.  At moments I feel like it was more aggressive than I would have wanted to go but I think its just the newness of it all.  We must do what we must do to survive.

TN, thanks, the pain is manageable kind of.  I don't take anything for it and I pulled a pec muscle opening the oven so it's difficult to lay on my side, I have to hold my left foob in place or its pretty excruciating like the muscle is lifting away from the skin (which technically it probably is).  I think it's prob the same as what everyone here has gone thru in terms of post surgical pain.  My PS told me I shouldn't be taking anything anymore.  I use a heating pad on my left pec and this helps.  I may take a valium in case the muscle is actually spassing, it would def help.  Ill take it tonight before bed - still sleeping sitting up.  ...still have over 30ccs of fluid and I still have 12 hours to go, Im around 50ccs on the left and about 10 on the right.  No left drain coming out tomorrow   Thanks for asking.

TNLady

PS, Be careful with the heating pad.  I have read on other threads where a couple of ladies got burned from the heating pad.  I think they did not feel it burning because their skin was numb.  I was afraid to use it because of this reason.  I still feel the pec muscles move every now and then, but it does not hurt anymore.  I think it is something we will get used to over time.  Hopefully you will be drain free soon.  I think the drains caused me the most aggravation.  Even 5 weeks later, I still have a little pain in that area, mostly to the touch now.   Hopefully, when you get the drains out, you will be able to enjoy sleeping lying down again.  Take it easy and keep positive!

PS73

Very good point!!!  I am numb.  The pain I was having, my dr thought was from a pocket of liquid so he squished my left pec/foob, luckily I felt nothing.  Lots of fluid filled the drain.  Isn't this so vile!?  I got the right one out but the left one, as thought, remains.  So be it.

TNLady

PS,  Wow, that must have been a relief to get that extra fluid out!   I can't believe it diden't hurt!.  It is a good thing your PS is leaving that drain in then.  I know it is a nuisance, but it will save you from having more problems in the long run.

I have almost made it through my first week back to work!   It was not as bad as I thought it would be.  I get my mind on something other than BC for a few hours.

I hope everyone is recovering nicely!  Best wishes to those having to make the big decision on what procedure will be best for them.  We are here to answer your questions as best as we can.

PB22

Its 6 week post op for me and I am feeling pretty  much back to normal.  I think it was the physical therapy that broke up alot of the scar tissue.  The therapist spent alot of time massaging the incision area of the sentinal node biopsy breaking up the scar tissue.  I was complaining to her of the pain under my arm which I thought was caused by either the mesh pocket pulling or the implant ending. Massage helped break that up as well.  Finished week two of the PT and have improved range of motion. Now driving and back to gym, concentrating on lower body.

TN, glad you are back to work, you must be exhausted at day's end.

PS73, hang in there, one more drain to go!

KEW

Julia-I think if you have the implants just under the skin there is more opportunity for rippling and other defects to show, and it I think one would be more likely to need a lift as the implant would be pulling against the skin all the time.

Careful of heating pads, ice packs, check clothes from dry cleaning for pins, etc.  There are ladies on the board who had the heating pad adjacent to the breast and didn't feel it touching and ended up burned.  I also have a friend who dropped her curling iron, while getting ready for work, it hit her breast, didn't feel a thing and later in the day discovered a 3 inch blister. That is why we need to keep our underwire bras in good shape and check them, if your PS allows you to wear one.  Mine did after about 5 months. 

Best,

Karen 

NewBride

Hi. I guess that I am the latest to join your thread. On Jan. 20 I had a nipple sparing left breast MX with immediate reconstruction 1Step direct to implant with Alloderm.  My BS and PS both say the surgery went very well.

At 2 days out I can report that my pain is minimal.  The breast mound is actually pretty good looking though quite firm right now.  Yesterday when my PS looked at it in the hospital,  the skin color appeared normal.  Today I am seeing a little redness across the top of the breast mound and the nipple is beginning to darken.  I understand that the nipple darkening can be normal but I can't help being a little worried.  Is there anything else I should be watching out for?  Any input from you ladies will be very much appreciated.

I hope you are all doing well and I look forward to being on this thread with you.

PS73

Im reporting in.  New Bride (first off congratulations on being married - I was wed last June and I know how incredibly hard it is to deal with being a newlywed while having cancer but Im sure you were beaming with happiness the day of your wedding which was well deserved).  I had a similar issue with my right nipple - it actually had a scab over it but it fell off over time. I put bacetracin (sp?) ointment on it all the time and then after a week I put the ointment on a bandaid and rotated the bandaid like the hours of a clock for a couple days and the scab fell off (if you end up getting a scab).  Now, no issues.

I still have my left drain in but it comes out tuesday!  My boobs are numb still - thanks for the hot water tip - I am really careful now.  I feel like I have come so far but there is still so much more to do, its so depressing at times - the sitting on my ass watching bad am tv hasnt helped me.

Hey my PS was on E news regarding heidi motags recent 10 surgeries (he didn't do them he was just asked about his opinion on them). He did so well and he and his wife just had a baby and their picture was behind him in the interview- so sweet (except she's prob like uggh because sh has this blue hairnet on in the pic and of course she is adorable and perfect). 

..well just wanted to say thank you to all of you great ladies who helped me thru this.  Last night at my husbands show (hes a musician when he has time) his drummer, who recently had a baby and knows of my cancer and surgery kept talking about how his wife nurses their baby and how our glands on our areolas have scensors which know what a baby needs in their milk at that moment.  I haven't been out in ages so it was my big night and without my scarf or wig - just my buzzed (id like to think french girl looking) hair. Inside I practically broke down but I put on a brave face, Im really sad to even write about it.  ..I know this was the right decision but this was the main reason why I wasn't going to do it, I hope this gets easier.  I haven't figured out why but this was the hardest thing I have done yet - maybe this makes me lucky but I just feel sad over it.

..so also, Im going to be away for a bit so I won't be on the boards most likely for a long time but I wanted to end on a positive and just say you were all amazing to help me thru this and good luck to those who will go thru it in the future.  Peace out homies.