Nipple Sparing Mastectomy with immediate reconstruction

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.

TNLady

PB, Good to hear from you, It sounds like you are doing well.  It stinks that we can only work out our lower half.  I have the soreness under my arms also.  I notice it when I move my arms a lot, especially after walking.  I still have not checked on the PT, but it sounds like it is helping you a lot.  I will talk to my PS when I go to my next appointment.  Is your PT specialized in reconstructive surgery patients?   I did pretty good this week, but I'm exhausted tonight.  To beat it all, I think I have a cold now.  I believe it would have been a good idea to take at least one more week off, too much on my immune system. 

 NewBride, Welcome, nice to have you!  I'm glad to hear your pain is minimal.  My nipple turned black too, but looks much better now. It only has a pin point black spot in the center at a little over five weeks post-op.  I understand your concern, if you read my earlier posts, I had anxiety over possibly losing my nipple.  I think it happens to a lot of people who have the nipple sparing.  My nipple looks better now, but is a little flatter than the other one, maybe this too will get better with time.  As far as the redness, mine went through stages of color, but not really red.  If it worsens or if it is hot to the touch, I would call your doctor and see what he/she recommends.  Are you taking an antibiotic?  My doctor sent me home with ten days worth of antibiotic.  One recommendation, buy some Palmers cocoa butter to massage into your skin, it helps keep the skin supple and helps with the stretch marks.   I'm glad you have joined the thread with us, any questions you have, please let us know. 

 Kew, nice to hear from you!  I have my pictures ready to post, but my daughter and I have not been able to figure it out yet.  It is saying my pictures are too big. We are going to try again this weekend.

 I hope everyone has a wonderful weekend!  My husband just bought a Harley, so if the weather is nice tomorrow, we are going for a ride!  We were going to wait until the kids were out of college to purchase a bike, but this experience has shown me that you have to enjoy life while you can.  I'm thinking I'm going to get a tatoo too! LOL  I found a breast cancer t-shirt that has a dragonfly with the pink ribbon in the center, I'm going to modify it a little, but I'm thinking of putting it on my shoulder.  It will be like my badge of courage! Speedy recovery to everyone!

TNLady

PS,  I think what you are feeling is natural.  With each day I seem to get better physically, but I have those days where mentally I'm not up to par. Hang in there, I know it will get better.  We will miss you and you will be in my thoughts.

NewBride

PS73. Thanks for the congrats. I was married in July. My DX came in Oct. so we were blissfully ignoraant of my DCIS on our wedding day. I'm so blessed. My husband has been amazing through the whole this whole thing. I see from your profile that you were married after your DX. What a testimony to the strengh of the love between you and your husband. Also says much about your courage to move ahead as planned with your lives. Bravo. Thanks for the info regarding your nipple experience. I guess I'll try not to worry too much. What a drag that your husband's drummer is such a mouth breathing, knuckle dragging unibrow of a clod. Well, feel bad for him. At least you can do something about cancer. He's probably going to be that stupid for the rest of his life. I know that you are taking a break from these boards for awhile. Maybe we'll talk later. I seems we might have quite a bit in common. My husband and I are both in the entertainment industry too.

TNlady, I think I may have seen your posts on the 1Step thread along with Ally1423 who also had nipple sparing. Thanks for sharing. I think one of Ally's nipples also turned black and is now OK. Yes, I am on an antibiotic. My PS prescribed 5 days of Cipro 500mg tabs to be taken two times a day.  My bruising appears minimal except for one dark bruise next to the nipple and the swelling appears to be diminishing, perhaps because of the arnica that I have been taking.  Drainage seems to be tapering off (30cc overnight).  Nipple isn't any darker this morning and redness is not any worse.  Guess I'll just keep an eye on it for now.  Late for a hair appt.  Back later.  Bye for now.

fairportlady55

Hi everybody! I had BMX nipple sparing with TE on Jan. 11, almost 2 weeks ago.Both of my nipples are black, but I asked about it on the exchange city thread and was re assured that it is normal and they will eventually fall off. I had my first fill last tuesday: wow that night I was in a LOT of pain from muscle spasms plus I was only a week post op. The expanders are really hard: I agree the perfect description is that it is like how I felt when I was really engorged while breast feeding. My next appointment is this tuesday, and Im going to premedicate myself with my muscle relaxant . The last drain was removed yesterday.....feels so good to be free of them, although both sites where they entered are very sore. My foobs are mostly numb, but I can feel enough to know if something is touching them ...can feel pressure but not light touch. Best of luck with decision making to all of you who are new and trying to find the best path to follow. Each of us have our unique set of reasons to do this (mine were done prophylactic) but if it helps at all, I have no regrets.   

TNLady

Fairportlady,  Welcome, glad you joined us.   The drain sites stay sore for a while, I still have some soreness from mine.  I'm glad you are happy with your decision.  My left breast was prophylactic, and I have no regrets either. Please keep us posted on your progress.

 I hope everyone had a nice weekend! 

fairportlady55

thanks TN!

I slept through the night for the first time since my surgery on the 11th! Now that's progress! I am scheduled for a fill tomorrow,  I plan to pre medicate myself, and once home from that appointment will ready the bath and glass of wine! Thanks for the welcome , I am so happy to have found you all. 

PB22

Fairport, good luck at tomorrow's appointment.  New bride, can't imagine having to be thinking about all of this as a newlywed.  PS 73, sounds like your drummer is a boob himself that should be excised. 

TN to answer your question regarding the PT,  I go to a regular orthopedic PT place as my prescription was written for "range of motion". I selected the place I go to for the close location as I wasn't driving then.  When I called I told them my surgical hx and requested  a PT with experience with mastectomy pts, and it be a woman.  I was told that if I had an lymphedemia problems then I would be referred to the local community hospital physical therapy department which treats that specifically.  Turns out my PT has a mother with bc so she is sympthetic.  On one visit they had me assigned to the PT assistant for the exercises but then my PT did the massage.  I did tell the PT I wanted only her and I since changed my time slot to a less busier time.

NewBride

see my latest at page 41 of 1Step thread. Or go to my profile. Bad news today.  Don't want to type it twice.  But will look forward to your replies.  Thanks. Hope you are all doing well.

fairportlady55

NewBride:

I am sad you are facing all this especially as a newly wed. I have only been here about a month but even that short a time has taught me that there are so many wonderful supportive and knowledgeable women here and they (we) are behind you and supporting you and sending HUGS..try to take all this one day at a time, its hard I know but in the long run its so much better to focus on healing and positive things rather than becoming fearful about things that might not even happen. (I have to constantly remind myself of that and am far from perfect! I do know though that when I am focused on what is happening now rather than what might happen tomorrow I feel a lot better and stronger...)

So ladies: about my fill appointment yesterday: it was my second fill, 50cc in each. (had 25 in the day they were placed and my first fill appointment last week I took 50 in each.) So can anyone advise me: Last night was my WORST NIGHT EVER! The pain is one thing, but the constant muscle spasms were unbearable. finally fell asleep at 5 am after yet another muscle relaxant and vicoden. I was advised by the NP who works with my surgeon that it was possible that I would have excessive pain with the TEs because I worked out frequently and have very strong pecs which may make stretching them challenging. I dont know if thats true or not but I do know that if I will always be that uncomfortable it's going to be hard to manage alone (my sister from out of town came to be with me for 3 weeks, so she wont be here next week when I get my next fill).So to you all  who have walked this path before me: any suggestions? Im maxed out on pain meds. Should I go with much smaller fills (which means even LONGER before I am rid of these miserable TEs) or do you have any tips to manage the pain? Heat? Ice? and thoughts would be so appreciated. (today I have a lot of pain but the spasms have subsided)

thank you !!!!!! 

NewBride

Fairportlady, Thanks you for the kind words.  I am feeling a little better today and even have a little good news to report.  Path from the nipple area was negative so If the nipple survives the surgery (and it looks like it might), I get to keep it.  I had 1Step w/ Mentor 325ml round moderate plus silocone implant.  That seems to be doing well too.  I see oncologist on Fri. we'll probably talk about my colloid carcinoma.  I'll everyone updated.

PB22

New Bride, hang in there, I'm sure you'll have all your questions answered on Fri when you meet with the onc.  Concentrate how well everything is going today that you get to keep your nipple and you are healing.  Keep us posted as we are all learning with you regarding this collidal type cancer.

Fairport, I didn't have the TE's went immediately to the implants and can tell you I shared the pain. It was excrutiating.  The pain got better after one month when I went from  narcotics to anti inflammatory called Altram.  I believe it is the tight pec muscle that was pushed far at once for me. I also worked out.  Hind sight would suggest to those not to work out the pec muscle prior to surgery as you don't want it tight.  I should have stopped working out the muscle the day I got the dx.  The other pain you feel the sharp ones are the nerves regenerating, that will go away. Ice helps for short duration a few minutes at a time as you don't have all your feeling there and don't want to freeze it off! I never used heat and at PT they don't use heat on me.  You will see that massage helps the pain as well.  I am 7 weeks post op and feel very tight like I have a tight bra on but that is the extent of the pain. It does get better with time.  

PB22

New bride, I had to re read your posting. I am interpreting that you had the mastectomy for DCIS and the path came back another carcinoma that was not detected and the issue is that there was no biopsy of the SN at time of mastectomy so at this time one cannot see where the breast would drain to locate the sentinal node.  The one question I would ask the onc is will Pet scan be enough of a diagnostic measure to determine if there are any node involvements. 

Kristinka

fairportlady,

I had terrible pain with the fills, too.  Darvocet and Flexeril, when taken together, stopped the spasms and allowed me to sleep. I've heard that valium is a great muscle relaxant.  You could check another thread, "Got my first TE fill yesterday - Ouch!" for tips on pain.  Hope you feel better!

Kristen

TNLady

Sorry Ladies, I have been busy the last couple of days, so I have not been able to check in.  My niece just had a baby girl!

NewBride, You will be in my prayers and let us know what the oncologist says.  You stay strong girl and I am sending out positive vibes to you!  I'm happy your nipple is doing well. 

Fairportlady,   I feel your pain.  I did not have the TE's, I had immediate implants like PB, but I had the tightness and the shooting pains from the nerves too.  I just took what the doctor prescribed till I used it all, and then took Advil for a few days.  I did not use heat or ice, beware of either one with your numbness, the pain will get better each day.  I do remember feeling better one day and then having more pain the next.  So, be careful when you have a good day to not overdue it.  I am at six weeks post-op and hardly notice the pain or tightness anymore, except when I get really cold and my pecs tighten up.  I worked out previously and I have read this has caused problems for others too.  So any ladies reading this prior to surgery:  Do not work out your pecs!

PB, it sounds like you are doing well, except for the tightness.

 6 weeks post-op report:  Well, it has been a busy week and I have had my ups and downs, mostly ups.  My pain is so infrequent now, that I am not constantly thinking about my boobs or should I  say "foobs".  Driving is still not fun.  Today I went to turn with just one hand on the wheel-big no no!  I still have hardness in the right implant, but the left is nice and soft now.  I have been massaging my right one and it seems to be getting better.  I still have pain under both of my arms, not too sure why that is still bothering me.  I can see why I could be having pain on the side that I had my lymph nodes removed, but not sure why the other side is still hurting.  My left breast has dropped nice, but my right breast is a little higher.  This could be due to the tightness not letting it drop.  I have been told this could be due to capsular contracture .  Hopefully, the massaging will work this out.  Work has been going good, but if I could make a suggestion to any ladies out there reading this that are preparing for surgery,  take up to six weeks off, if that is an option for you.  My job is not strenuous and I still had a tough time going back after four weeks.  We need time for healing our bodies and our minds.  I think the toughest part for me was being social again, I still wanted to "nest" at home and feel I was not quite ready to deal with other issues so soon.   It does seem like six weeks is a turning point, so hang in there everyone, it does get much better.  Hugs and well wishes to all!

TNLady

Good suggestion Kristinka!  Fairportlady, you could also check out Exchange City.

NewBride

PB22,  That's going to be at the top of my list.  Colloid carcinoma is pretty rare (about 3% of all BC).and because of its mucinous nature is hard to detect with mammo. My stereotactic core needle biopsy shot right  past it.  (insert really bad word here).  Because of DCIS, albeit extensive and high grade, I elected no SNB.  Both BSs I consulted with were fine with it.  So now here I am.

PB22

New Bride, I understand your situation,  will be following along with you.

TN, I agree with you, six weeks seems to be the turning point especially for driving and going back to normal activities.  I am finding on some days I'm so thrilled to be back to my normal activities and then the following day whiped out requiring a nap. TN do you have any numbness in parts of your breast as I still do?