Nipple Sparing Mastectomy with immediate reconstruction
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Thanks for the responses on the path report. I will have to double check with my breast surgeon.
Sweetie, I'm glad you are through the worst part. I remember the tight feeling, it will last for several weeks. After my meds were out, I took Aleve for pain when needed. I used Palmers cocoa cream to keep my breast skin supple, actually I still use it. You will feel better each day, just try not to overdue it.
fairport, How are you doing?
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Hi Ladies,
I''m doing a little better. Got rid of that oh so tight surgical bra and got a sports bra, big relief! Perocet gives me me horrible dreams so they switched me to Vicodin and another muscle relaxer. They seem a little better. The pressure is getting a little better, but last night was tough and I started crying. I'm watching the nipple, Still black-ish but not horribly so. I see the PS on Thurs. I wanted to say to all your wonderful ladies, do you know I had the NSM because of all of you! Your thread enlightened me and helped me pursue it, so because of you sharing your experience you opened the door for me to know and understand and then pursue! How wonderful is that!
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TN wish I could help on the path report. Its good you are double checking with your breast surgeon. Sometimes I feel like I shouldn't be here, since I didn't have breast cancer myself: I had the precursors to breast cancer and a very VERY bad family history, so my surgery was prophylactic. What so many of you have gone through is so so much: and you all show such strength! We are all sisters in the nipple sparing mastectomy though, I know!
Im doin ok thanks for asking. I am waiting for my PS to get back in town to re-drain this lump. which I think is still "old" blood: I think I had a lot of bleeding with the exchange (due to my bleeding disorder: those of you still awaiting surgery dont be scared: I am an exceptional case!) and I think the old blood from that is finally working its way to the surface. I will be so glad to be done with all this. Infection looks better now: still on the antibiotics. I think I got it from the pooled old blood hanging around. On a brighter note: I seem to have done the drop and fluff thing: my boobs look great!!!! Like Im a teenager!!!!! Which, since Im 55 years old, says a lot!
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Sweetie: dont worry if the nipple looks black: its normal. Dont pick at it, its just scabs and it takes a while to resolve. I was so freaked out at first because both nipples looked black and necrotic: but they are both FINE now! I hope your pain gets under good control......and Im SO HAPPY you got to have the NS procedure!!!!
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Fairport: Glad you are hanging in there and have a good attitude. I know it must be hard to wait until he gets back and get this resolved. You sure look great in your photo for your age! I'm only 49 and sure don't look that wonderful!
I too thought I had a necrotic nipple when mine was all black. I was so afraid it was going to "fall off" since my PS had told me it could happen. He didn't warn me first it mgiht look like that though, so I was sure relieved when the scab came off!
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I have to say...again...this forum daily encourages me! I know the road ahead is going to be rough (May 5th-surgery date) but you ladies empower me. Your courage and strength shines thru! Everyone of you are beautiful and I know through your willingness to share your life-stories, that I also can walk this path and find myself stronger in it! THANK YOU!!
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Sweetie: You will feel much better when those drains come out. How many lymph nodes did you have removed?
Fairport: glad you are happy with the results. Are you back to work?
bcinCo: you're back at work how are you doing?
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I'm feeling kind of down tonight. I've had increasing pain in my left breast, armpit, shoulder and arm for about a week now. Sunday I woke up and couldn't get out of bed without practically screaming and had a temperature of 103*. I called my PS (she actually gives out her cell phone number) and she phoned in antibiotics for me. She called me today and said she wants to see me tomorrow which means a 4 hour round trip. She said if it is an infection they may have to admit me into the hospital.
I know there are lots of BC patients who are a lot worse off than I am but I feel like every time I start to feel strong something knocks me back down. I'm so ready for all of this to be over. I want my life and my body back!!! I feel like I'm never going to feel like myself again.
Thanks for letting me vent!
K
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Hi everyone. I'm new here and have hit up TNLady for some advice which is greatly appreciated. Thanks TNLady!
I am due for my NSM on May 6th (it's sneaking up fast) and honestly don't know how I even feel about it...I think I would call myself "numb" at the moment. I am doing the left as preventative and the right due to a small amount of DCIS. I had a mass already removed from a lumpectomy back in Feb from which the DCIS was found and because it was 95% ER+ and PR+, radiation and Tomoxifen was suggested. I am 35 years old and a newly wed and we were planning on trying, but Tomoxifen would have pushed baby dreams into my forties and I simply didn't want to wait nor deal with any of the potential side affects. My other option which I decided to take, was an NSM and I was lucky that my surgeon does indeed perform this particular form of mastectomy.
I just have fears right now that I can't shake. Fears that I will have all sorts of complications. I try and look up homeopathic remedies that could possibly help circulation and thus prevent my nipples from dying! I have a call in to the doc with some questions and will post if I hear anything back from her in regards to these remedies. One that I was reading about was Niacin. Has anyone have any knowledge or experience with Niacin for treatment? It causes your blood capillaries to expand and helps with circualtion in your skin. I probably sound nuts right now! I swear I think I am going to be spending my recovery at home snorting cayenne pepper and having niacin hot flashes just to increase my circulation due to my paranoid mind!
Anywho, I think I am simply freaked out about the unknown. I have a guilty conscience about seeming more concerned about aesthetics than actually having cancer but I can't help it. I think we have all been conditioned living in a world in which there is a lot of pressure to look good. I know it affects me and this is why I am so paranoid. Anyway, I am just ranting but I guess if anyone has any advice a week prior to surgery, I am all boobs..I mean "ears" about it!
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I would try not to worry so much. My PS told me that my BS was very good at preserving the nipple. Then told me if the nipple didn't look satisfactory, he would make me a new one. I heard that and was relieved I guess. I just didn't worry.
After surgery the PS told me to leave it alone..it was flat-black-ugly. NUMB (still adjusting to that )..but the black color first started peeling off the areola..then the nipple part started lifting off. I didn't realize at the time that it was just a scab really. When that came off and I saw that beautiful pink skin underneath, I knew all was well.
you will not have any feeling in the nipple..I wouldn't do anything to stimulate circulation because of that.
Kate-I feel the same as you. I am sick of all of this crap. But I feel bad because I am not really suffering like others.
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Kate: Im sorry about the infection, I sure know how frustrating it is to not be over yet. You vent away thats why we are here!! I hope all goes well for you when you see the PS. I am so sick of it too!!!!!! ugh!!!!! hugs to you
Hurleygirley: I agree with Twirlandcurl: try not to worry so much: worse case if your nipple doesnt make it they can make a new one, but dont freak out when you first see them: mine looked all black and necrotic but in TIME (up to 8 weeks for me) all the black scabs fell off and I too found pretty pink nipples underneath. Also, I dont think any of us should feel guilty about caring about the cosmetic result: it is normal and understandable to want to be restored to close to what we started with. I used A and D ointment on mine every day, I didn't use anything else. Just make sure your surgeons approve of any natural kind of remedy: I worry about a fine line between something "improving circulation" and causing bleeding....of course that may just be because I am the poster child for excessive bleeding so I am extra cautious
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bcincolorado: thanks!!!!! 50's are the new 30's right ????
PB22: went back to work and SO much better with implants those TE's kicked my butt! How about you?
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hurleygirley, glad you joined us! You will have the support and guidance from everyone here. Don't worry about ranting, that is what we are here for, to listen. And you are NOT nuts! What you are feeling is natural, we all have worries of the unknown. So, don't be afraid to voice your concerns, and in the process, you may help someone else!
Kate, you are in my thoughts! I'm anxious to hear what your doctor says. You are a strong woman and you will emerge from this setback even stronger!
Hurleygirl, Sweetie, and Gagirl, You don't know how good it makes me feel to hear your compliments! I get teary eyed! I know that sounds silly, but that is the whole reason we are here, to make something positive out of something negative. And you guys will be doing the same, by sharing your experiences, so the chain keeps going. We are so fortunate to have a place to share.
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fairport, you do look great! I like that, the 50's are the new 30's! So, I guess the 40's are the new 20's! Hehehe
We are just getting younger! 0 -
Surgery today....getting ready to take off in a few minutes. Feeling really good about getting this done!
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Well when you start to get gray hair in your 20's (my daughter says my son gave it to me!) you start to dye that hair early because gray hair and pimples is just too sad!
At this point (49) I'm not ready to give in and let it go. Dealing with BC is enough for right now. Bring on the hair dye!PB22: Yes, I went back to work the day after my drains came out, believe it or not! I can't say I work really quickly or at at the same efficiency. I am very tired and think some of it has to do with Tamox waking me up at night a few times. I would much prefer to win the lotto and focus on recovering right now, but I heard you actually have to buy a ticket to do that.
Thanks for asking about me.Kate: I hope you are feeling a bit better today. {{{{{{{kate}}}}}} It's ok to rant and vent and tell us all how you are feeling, since we can all understand, and we care.
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janny, you are in my thoughts! Best wishes for your surgery! Please let us know how you are when you are able.
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Fairport and all: I'm 4 months post surgery and actually, as I was driving today, I thought to myself, wow, I have no breast discomfort or heaviness or iron bra feeling. I think its starting to feel like part of me. Just in time for the surgery next month to change out the implants and start all over again!
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Thanks everyone for responding to my post. I don't know anyone that has gone through this in my life and I feel like I need an outlet! I guess being someone who is a control freak and has bouts of anxiety doesn't help my worrying mind!
Janny, I hope your surgery goes smoothly and that you have a positive recovery.
Twirlandcurl and fairportlady55, thanks for elaborating on the nipple aftermath. I want to be prepared if I look down and see black and know that it doesn't necessarily mean that my nipples are going to die!
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PB22 - I was reading your post about not needing hormone therapy if you are ER/PR negative. Perhaps you can answer a question that I've been wondering about. My cancer was DCIS and ER/PR negative. Therefore, I'm not taking anything. But, if my cancer returned, or recurred on my other breast, how would they know it would be ER/PR negative? I'm just wondering why I was never given hormone therapy as a preventative measure? I did end up having a bilateral mastectomy and the negative status was the motivator for this decision. But I just wonder why we're not given this medication incase a recurrence is ER/PR positive?0
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PB22- I had no lymph nodes removed. They biopsied both sides even though the right side didn't have cancer (just precancer cells) and everything was fine. I was so fortunate, they found exactly what they initially saw on the pre surgery pathology and MRI.
Fairportlady55-thanks, I hope they will be fine, I think they are from what you guys have said, I see the PS tomorrow so we'll see what he thinks.
I think I will feel better without the drains. My boobs look all crazy and hard and the nipples are stretched. The incision goes right to up to the nipple. How does the end result look when you finally get your implant?
TN-your welcome-everyone who opens their heart to share their story helps someone else and I call them my angels! I believe when you go through something hard and share it with others it helps them so much and it goes on and on like that, that's why women are so strong and beautiful in so many ways!
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I got a fill today..I am now more lopsided..SWEET
PS told me today while I was there..."Just so you know..this wont hurt me one bit"
what a joker....
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Good luck Janny, we will all be here when you get back!
Now I'm going to get confused, we have twirlandcurl and hurleygirley. If not confused , dizzy.
Mantra, I'd give that question to the onc. but my guess would be that we are on hormonal suppression for those cancers that have been proven by biopsy to feed from the hormones. Its preventative in the event a cancer cell escaped prior to the mastectomy procedure, which is the standard of care. Have there been reoccurrences that were er/pr + in a person that was initially negative within the 5 year risk period to warrant the SE's that come with the hormone suppression? That would be a question for a new thread or perhaps its answered in a reoccurance thread. I hate to be on the suppression even knowing the benefits as its seems like we already paid a heavy price with the bmxs. You won't have to put up with the hot flashes, boneloss or arthritic pain not to mention wt gain!
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Hey everyone-
Thanks for the words of encouragement everyone. It really meant a lot to me. The latest update is PS said she didn't see any sign of infection in the breast except one of my stitches had worked its way to the surface and was inflamed. My temps been normal the last few days but she's going to have me finish the antibiotics just in case. She is making me hold off on any more fills for a few weeks. She said there is a chance I won't be able to expand to the size I want to be so that is disappointing. But I will be at least as big as I was before all this so I truly can't complain.
On another note I saw "sweetie2040"'s post that said it was because of our posts that she ended up having NSM and I think that is so wonderful! We really need to get the word out that this is an option for many women. My BS asked me if she could use my case history and photos for presentations she is giving to Ob/Gyn's to make them aware of this surgery. (I, of course, said YES!) She is also going to start a mentoring program where new patients can contact previous patients which I'm going to participate in when it gets going. It just makes me feel like something good can come out of all this. I just wish there was a way to spread the word even more. There are probably thousands of women out there who would be great candidates for this surgery and just don't know about it. Let's spread the word!!!
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{{{Kate33}}} What a great idea! How wonderful you are to mentor someone else through this!
I agree, that it isn't something I even knew existed until my PS asked me if I was having it done. If the cancer isn't in that area, why not do it and look more natural and have less procedures done?
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Thats what inspired me to start the thread on Where the nipple sparing procedures are perfomed as a resource for those who are having trouble finding a surgeon. Thanks to everyone who has already noted on the thread what city they had theirs done in so that they can be PM'd for more info and keep the thread alive!
Kate, I love that idea of the mentoring program. I had told my surgeons to feel free to have his patients call me. If more woman can see the cosmetic outcomes, they would have less anxiety.
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Hi Ladies - Jumping in to tell you about my brave sister. She watched me go through a lumpectomy, chemo, radiation, and Tamoxifen. We also went to genetic counseling together. Her odds are very high for cancer - too high for comfort. She has decided to go through with a BMX. Her surgeon is going to do a NSM.
Here's a question for you veterans - she is a single working mom with a 9 year old boy. She needs to get back to work after surgery as soon as possible. She is hoping to get back within 4 to 5 days. From what I've read, this doesn't sound possible. What was your experience?
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My first mastectomy with tissue expander took two weeks to recover. However, my second mastectomy with tissue expander had zero recovery time. Different doctors and perhaps different methods? Not sure but the difference was like night and day. BTW, I did return to my office job 4 days after surgery. I still had drains in! But I felt great and was beyond bored staying home.
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Hi Ladies, quick question, I'm ten days out from surgery and left nipple is still black. The PS said he is just going to watch it and not worry just yet, I know I read some of you had this happen, can you give me any insight on this? Also how long after your MX did you have your first fill?
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PB22-
How do I get to the thread that tells where NSM are performed? I would like to add my surgeon if I can. It's so great that you did that.
Sweetie2040-
My nipples were black for about 3 weeks. It was hard not to try to take off the scab but it will come off when its ready and you'll be so happy to see they are healthy and pink. My PS filled my expander to 100 cc's at the time of placement. I had my first fill 2 weeks later and my PS put in 75 cc's. If I had to do it over again I would have started out with less cc's and gone every other week. I was going every week and it was too much for me. But everyone is different.
Good luck!
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