Nipple Sparing Mastectomy with immediate reconstruction

CrunchyPoodleMama

Most surgeons know whether the nipples are viable during surgery itself, but you wont find many that will admit to this little secret.

Wow, really? What specifically makes them know whether it's viable or not?

fire-dancer, I will be using iodine liberally on my nipple and incisions. I wish doctors told patients how useful iodine is on incisions and scars. I recently started using it on my really ugly lumpectomy scar (it was dark red and had spread out, and looked horrible even 6 months after my last surgery)... within a few weeks the skin started regenerating itself. Since iodine is also antibacterial, etc., I imagine it will be fantastic to use right after surgery and in the weeks following.

I'm going to ask about using coconut oil instead of vaseline since I don't use petroleum waste products anymore.

vanderlady

I used A&D ointment on my drain scars and belly scars from lipo but that was after they had healed. 

BRCA1

CrunchyPoodleMama  I am a big believer in healing power of coconut oil. I am taking 2 tsp per day (organic virgin coconut oil , with coffee and with smoothies) and as soon as I will be able to apply it on my incisions I am planing to use only coconut oil to heal.

Anonymous

Thanks for all of the tips, ladies!  I have used A&D on minor cuts and will inquire this week about my options. I'd like to pick up whatever I need prior to going to the hospital so there is no need to send my husband out when we get home  I don't know much about coconut oil, but it sounds interesting.  I also never heard about iodine either...surgery is next monday so I'll look into these in the meantime.

Kitchenwitch

Am I going to have scars from where the drains were?? (Not that they're "were" yet - I hope hope hope with all my heart they come out tomorrow.) 

Anonymous

Kitchenwitch- I do have scars from the drains but I had drains 3 times.  It's been 5 months now and they are very faint and hardly noticeable.

vanderlady

Crunchy -- You put coconut oil in your coffee?  Is that right?  I tried to use coconut oil for cooking but my family protested so much..... they didn't like the taste.  I loved it when I would fry an egg.  I was taking it by the spoonful as well but haven't in a while.... will have to start that up again.  I have been giving it to my puppy on top of his food. 

I haven't tried the coconut oil on my incision sites but I'll give it a try.  I used to put it on my face as a moisturizer but have since switched to almond oil as it is a little thicker and doesn't get in my eyes.  Pam

BRCA1

vanderlady , it is me who put coconut oil in coffee, not Crunchy Here is a link if you want to know more about coconut oil  http://lifewithbrca.blogspot.com/2010/09/power-of-nature.html

I love it in my coffee and also in the smoothies, very yummy! As soon as I can I will start apply it to my nipples and incisions.

nmi

Just got the call from my ins co with the approval to redo nipple & some other symetircal issues.  I was not going to worry about the symetry anymore, but PS said he could do it all under local anesthesia I was ready! So excited to be fixed and done!!

Anonymous

nmi- Great news for you!  So nice to see some light at the end of the tunnel!  Hope your PS can "fix" you and that you will be very happy with the final results!

Kitchenwitch

Welp, I still have two drains in. At least I could dump one of the little Chinese purses I was using to hold them so one side is free. Should be another week. Irritated by this but will have to deal.

Meanwhile, both PS and BS think nipple looks pretty good - it's very very dark. "Angry looking," according to BS. He says his hospital (NYU) has only been doing nipple sparing for two years - so I find that all very interesting. Very glad to at least get the chance to keep it. Makes it much less traumatic. I am not going to see him again till January but I'll be following up frequently with PS in the  next few weeks so she'll keep an eye on it. She noticed some blistering but didn't see anything unusual, so fingers crossed.

vmudrow

Kitchenwitch - you nipple sounds like alot of ours here and I think it will all turn out fine.

vanderlady

Kitchenwitch -- Very interesting that NYU has only been doing them for 2 years.... yes, we are all veyr lucky.  Mine was pretty black too in the beginning.... wished I had taken some pictures.  IDK, that didn't bother me too much. 

Congrats NMI! 

Sorry BRCA1 -- Will try the coconut oil in my coffee tomorrow morning.  Will check out your link.... thanks. 

Pam

vanderlady

BRCA - Just read your blog ..... didn't realize you are just postop from your BMX.... good God girl, you are doing good if you are up at your PC so much!   Hang in there.... it gets better.  I was playing tennis 6 weeks out.  Really only needed Tylenol 2 days out.  So, did you get your ovaries taken out?  Loved the part about your ex!  :-) 

nmi

Thanks, vanderlady and Kate.

BRCA1-I started putting coconut oil in my coffee too, I guess I read that from you.  Hope you continue to feel better.  Read your blog, very interesting. Loved the part about your ex too! you go girl!!!

vmudrow

vanderlady - Good to find someone else that plays tennis - do you play league?  What is your rating?  I just started playing again last week since my exchange surgery 7 weeks ago.  I think I could have played sooner - but just following doctor's orders. 

Kitchenwitch

Vmudrow, Thanks! I think it has a good chance too. I don't mind it being mad and dark now - as long as it calms down and pinks up again.

Hmm, coconut oil for healing... maybe I'lll give that a whirl instead of the vaseline.  Don't forget, Crunchypoodlemama, that there may also be some bellybutton healing involved - I hjave to smear that too with something, so it's like 3, 4 sites that need gook.

By the way, CPM, I started taking iodine before my surger (maybe a month and a half?). I always wondered if maybe it would help the margins or help DCIS to ... retreat? I seriously am amazed that they said they got it all and were really happy with the margins (many!) post mx. I am going to keep taking it!  

BRCA1

Thanks girls, I am 5 days post op and doing good. Today is the first day I will try not to take narcotic pain med , only Tylenol. Drains are pain (you know where) , but we gotta do what we gotta do, don't we?

My hysterectomy will be sometimes next year ( app with Dr on Jan 19)...looking forward to menopause at age 35!

I love my comment about ex too

About coconut oil. I have very dry lips and have to use lip balm almost every hour. When I did my research about coconut oil I went to the store and along with oil I got coconut oil lip balm. You have no idea what is the difference! I use the lip balm 3 times a day now and my lips are very soft...so can you imagine what coconut oil can do to our incisions and nipples! Plus, you will feel the difference in you hunger...after coffee with coconut oil you stay full longer, because fat in oil . It helps to loos weight as well, as it is speed up metabolism.

Also, Google pineapple extract pills after surgery benefit. I am taking it too .

CrunchyPoodleMama

All this talk about coconut oil in your coffee makes me want to try that now! Does it turn "oily" in the coffee though? The only reason I use cream at all is to lighten it a little... I've used fake milk before that turned into oily globules... hoping that coconut oil doesn't do that too badly.

I love coconut oil for a lot of things, though I only use it for stir-frying when I'm making something that is Thai or Indian.

BRCA1, I use coconut oil on my lips too when they get dry... absolutely nothing works better!!

Crunchypoodlemama, that there may also be some bellybutton healing involved - I hjave to smear that too with something, so it's like 3, 4 sites that need gook.

By the way, CPM, I started taking iodine before my surger (maybe a month and a half?). I always wondered if maybe it would help the margins or help DCIS to ... retreat? I seriously am amazed that they said they got it all and were really happy with the margins (many!) post mx. I am going to keep taking it!  

That wouldn't surprise me at all!! So happy that whether iodine played a big role or not, they got good margins!!

I definitely plan to use both iodine and coconut oil on the sites where they lipo me for the fat graft. I probably mentioned this, but not only the incision from my lumpectomy but also the biopsy mark from over ONE YEAR ago had still had a dark red scar. It looked so awful. Once I started using iodine on it, it cleared up in less than two weeks, and now I can't even tell where it had been!! LOVE the iodine + coconut oil combo!!

Kitchenwitch

BRCA1, did you say... dry lips?? God what a problem I am having with that! OK, sending DH to store tomorrow for coconut lip balm and oil. I think I'll like the lip balm. I don't always love the smell of coconut oil things but I do happen to love the flavor of coconut. 

Crunchypoodlemama, I don't like the idea of coconut oil in my coffee... but coconut MILK on the other hand.... how would that be? It's a very good milk substitute and it has coconut oil in it. About the iodine on incisions... just a bottle of liquid iodine from the drugstore? Will get that tomorrow too. Doesn't it stain? 

vanderlady

Crunchy -- that's amazing that the iodine on the red scar helped in 2 weeks.  Funny b/c I wasn't too far out from one of my surgeries and I had mentioned to the resident I was going to put iodine on and he said oh no....... blah, blah, blah.  I really don't think modern doctors know the true value of iodine. 

BRCA -- What is the brand of your coconut lip balm?  I'm going to look for some.  No offense, but I wasn't really liking the coconut in my coffee this morning.... although I did notice it made my lips nice and moist!!!   Have you ever done oil pulling with coconut oil?  It's been a while but perhaps I need to start that back up too.  Having 3-4 surgeries in one year really messes up with one's schedule. 

Three more days til revision.... I've been so moody.... very unusual. 

Oh, I'm so happy to meet new "iodine" friends.... I can't live without it!  My mom is 78 this month and her hair is really thinning out.  She had tried iodine a few years back but wasn't able to tolerate.  I had mentioned to her that would help with thin hair and she said she might try it again.  When I take 50 mg Iodoral or more, I notice my hair gets really thick.  Wish it could do something for the gray! 

vanderlady

BRCA -- Sorry you lost your mom, gm, and ggm to this horrible disease.  Yes, she is an angel looking down on you and yes.... fight, fight, fight .... you are doing the right things!  At least you have the knowledge that they didn't.  Pam

vanderlady

Kate -- Have you looked into Iodoral (iodine) at all?  It is wonderful for fibromyalgia.  There are some days I can't even get out of bed my muscles are so sore..... just pain all over my body.... this has been going on for years.  I would reach for my bottle of Iodoral, take 2 pills, and within 20 minutes I'm out of bed and back to normal.  Again, can't live without it.  Check out www.breastcancerchoices.org  for more info and/or to purchase.  There is also a thread on here about iodine.... .MBJ... is on there a lot too.  BTW, where is she?  She must be on vaca or something.   Pam

CrunchyPoodleMama

Kitchenwitch, I ordered Lugol's iodine through Amazon.com... yes, it does stain for a few hours but it's well worth it! (I'd like to use it on my acne scars but I guess I can't go around having orange skin on my face!!) I put a drop of Lugol's iodine on a cut my husband got on his finger and it healed in less than a day.

vanderlady, it really infuriates me that doctors seem to have "forgotten" the value of iodine when it used to be prescribed so freely by doctors! I guess they think all the new chemical/synthetic drugs must be superior to a time-honored natural substance. I didn't know it could help with fibromyalgia too! Wow!

LISAMG

"For those that just had their MX the #1 thing the surgeons forget to warn us about is that, more than likely, your nipples will develop black scabs.  This does not mean you're losing your nipples.  It happens to just about all of us. "

I do not believe this is the norm for most women. Yes, it may occur or be somewhat common, but I did not have this experience at all. I know many many women ( 40-50+ cases) who had preventative NSM's and never developed black nipples and/or scabs. I do feel this can sometimes be a result of the breast surgeon's technique and/or coring of the nipple and the location of the mastectomy incisions. Just think its rather important for women exploring a nipple sparing procedure that post surgical nipples can vary as previously mentioned, but certainly not in the majority of cases.

julie75

Kitchenwitch:  I have drain scars from my BMX, which took place on 09/17.  They are still red (rather irksome, since I have a dress with a low-cut back that I've been wanting to wear), but they have faded quite a bit.  I've been putting Neosporine on them, which helps the healing process.  Also, your PS may be able to inject them with some cortisone, which might flatten them out. Dealing with the drains was the worst part of recovery for me, but I kept them pinned to cloth belts that I have, which basically kept them out of the way.

The PS was able to spare my right nipple, which had a black scab over it.  I really thought the scab would never come off, but it has, and the nipple now looks pretty normal.  Again, I've been putting Neosporine on it. 

Good luck with everything!

BRCA1:  Congratulations of getting through this, and I'm so sorry you lost your mother, grandmother and great-grandmother to this.  Agree with Pam (vanderlady)  they are with you during this journey.  As to pain meds, I went off them after 5 days and just went with ibuprofin, which worked.  Hang in there; it does get better!

vanderlady:  Great tip on the iodine!  Didn't know it helped with thinning hair; I'm going to get some ASAP.

{{{HUGS}}} to all!

LISAMG

Kitchenwitch, I see you mentioned NYU surgeons from above. Did you have your surgery at NYU? I am thrilled with my results & had my risk reducing NSM at NYU 3 months ago after jumping off the surveillance highway. My surgeons were amazing and the care was outstanding. Hope u r doing well and have a smooth recovery!!!

speech529

I just reviewed the slide show that was posted a while back, very interesting.  My breast surgeon showed me a slide show of the procedure I had prior to my surgery.  It was from start to finish.  I was very fortunate that she was willing to share this with me.  It helped me so much to accept the procedure.  I know for some people, they don't want to know, but for me it was a relief.

By the way, half of my nipple turned black and then dropped off to reveal beautiful, soft skin.  I never had any panic about it because there was no indication of infection (swelling, heat, redness, oozing, etc).  But for anyone worried, contact your surgeon right away to make sure all is well.

I am 5 months post-op and I am very pleased with the medical/health and cosmetic outcome and I think I look better than I did before.

Kitchenwitch

Crunchypoodlemama: Hmm, I have to ORDER liquid iodine from Amazon?? OK, will do. I don't mind admitting but... wow. You used to be able to just walk into any drugstore and buy a bottle. Along with the glass mercury-filled thermometers.... Wow, I really am kinda old! (I do have the iodine tablets I ordered from Amazon, but I want something for my incisions.) Yeah, it bothers me that docs have abandoned some of the old stuff that worked perfectly well. My mother used to swear by boric acid for eye infections. Mix it with boiling water, let cooll, rinse eye. (It does NOT burn like acid.) Used to be able to buy it in any drugstore. Now..... not so much.

 Julie75,@ things and i'm not even sure one will come out next Tuesday at the appt. (One definitely will and that willl be nice.) Grrr, drains. Going to try pinning them  inside clothes today instead of what I've been doing, which is keeping them inside silk Chinese shoulder purse. Helpful, but I'm getting a little sick of the sight of it!

takeadeepbreath

couple of folks suggested these pnk-pockets for drains--seems like a good idea, I ordered a pack yesterday...they are the removeable pockets that hold two drains and just stick on your clothing:

 http://www.pink-pockets.com/home