Nipple Sparing Mastectomy with immediate reconstruction
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Prayers and positive thoughts for Fairportlady today!
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I got some bad news yesterday about my oncotype. I'm much higher risk for recurrence than I was led to believe. so I am feeling really down and discouraged since the call yesterday.I thought I was beginning to see past cancer and imagine a life again and now I am really feeling down. but I wanted to say that I am happy that I saved my nipples. One of of the scabs came off yesterday (before my bad news call) and I was so happy that I saved 'em. I was happy that my nipples reacted to the cold and were erect. It was a nice feeling. Of course I got the negative news minutes later, but I am trying to remember that good feeling.
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Hi tnlady
I had the nipple sparing bi lateral mastectomy also, however I have expanders and am waiting for my reconstruction surgery in April. I am going witht he DIEP flap. Anyway, I did have the blackening around my nipple area and my surgeon was also aggresive around the nipple area and when I went back to my plastic surgeon she prescribed me and I am so sorry I don't remember the name of the product, but I will get it and re post later this evening, but it was an "oxygen cream". I would rub it all around the nipple area to help it breath and within just a few days it was almost all cleared up. I will post the name of the script when I get home as I am at work............
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Gulp, Hang in there and stay focused on the positives. I'm glad your are happy with your decision to keep your nipples and it sounds like they are healing well.
KatherynMary, Welcome! My nipples are healed now, but it may be something that Gulp can use. So, how long ago did you have your BMX?
I am thinking good thoughts for Fairportlady!
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Gulp: I'm also glad you got to keep your nipples and they are healing. You are so right on what you wrote to sweetie regarding the docs not being patient centered.
Fairport: I am hoping you are sleeping comfortably!
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Hi all
you are all so sweet and supportive! Good news and bad:
Good is I feel so great to have those TEs out: the implants are so soft and really do feel like breast tissue (my opinion means a lot: I am an OB GYN Nurse Practitioner and have done breast exams for 19 years!) Bad is my mysterious bleeding disorder reared its ugly head again. (I say mysterious because it was discovered last summer but they dont know why it is happening) I didnt have the terrible complications like after the BMX (needed emergency surgery 12 hours after, blood transfusions) but I have to keep my arms down for 72 hours and rest and call him immediately if it swells up and go to the ER for blood. I was scared and upset last night and my daughter and I set the alarm for every 2 hours to check it and reapply ice but it looks good so far! The bruising hasnt started yet. Pain is minor, I felt worse with the TEs! I cant remove the surgical compression bra to shower till the 72 hours are up and need to keep it on 24 7 till I see him next thursday but I have been peeking and they look good! I think I may have gone too small but Im a small lady and the proportion will be correct and Im NOT having more surgery than I absolutely have to. He was going to remove some scar tissue but couldnt because of the bleeding but he said he will show m how to break it up with massage next week.
Keep fingers crossed I dont start bleeding...my daughter is helping me, some spring break for her:( but she is a sweetie and doing such a good job....I am so lucky
Gulp: thinking of you: glad nipples are ok.....hope you arent feeling as down today ((hugs))
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Fairport: congrats on getting rid of the expanders. What size implants did you get? Now all the massages begin! Are you on any herbals that could be attributing to the bleeding?
Hope everyone's weekend is going well!
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Fairport, I'm so glad you came through surgery okay. Now, make sure you rest and let your daughter take care of you. I know in your profession you are used to taking care of others, but now it is your turn to be taken care of. Just think, you are going be healed and looking good by bathing suite time!
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PB I got 300cc implants, I think they look kinda small but they will be cute and perky and to be honest I had a taste of what it would be like to be big when I had the TEs which he overfilled, and it just wasnt me..I am "short waisted" and have small shoulders....Im sure it will look okay.
No herbal stuff: I have no idea what it is. But I think they could have been trying harder to figure it out. They were interested in why I was bleeding (a platelet functional abnormality) but not what is causing it. Once Im healed me and my perky little boobs will march on over there and start demanding some attention to this little matter!
TN ha! Thats just what my kids say, Im so Im letting them !!!!
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Gulp- I hope you are feeling better, keeping you in my prayers. Thanks for your comments. I agree and it was akward when I met the new guy (who I loved) and then ran into the other guy while leaving the office who told me he didn't know anyone who did NSM when in fact his partner did! So i told him when I saw him, that I liked him but he didn't do the surgery I wanted so I was choosing the other guy. I felt bad, but I shouldn't, it's my body right! I don't know why the dr's do that and it's bad when you have to find out in a round about way that something could be done in the same practice. As for the gummies this Dr. is the only in my area who does them and I may or may not go with them, I just felt I wanted to have as many options available to me when the time came for it. I just don't like the feeling of knowing I could have had something but my Dr. doesn't offer it. At least your dr was open with you about. That's all I ask, is that too much!!
Fairportlady55-so glad you got your implants and sorry your have some problems. I will keep you in my prayers too. From reading what you wrote I know how strong and brave you are and I know your going to fine. Hang in there we are thinking of you supporting you!!!
Just wanted to let you all know I saw a new PS who does nipple sparing. He was awesome!! I loved him and feel very confident with his abilities and knowledge. The other Dr in the practice said she thinks I am a candidate but I need to see her. So if she gives me the ok,they can try it. He explained there are variables and once they get in there it may not be possible, but I'm hoping it will! I'll keep you posted.
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Sweetie - I think you are being entirely too gracious with the PS who denied knowing anyone who does NSM. That was dishonest and unsupportive of him, entirely unprofessional when you are asking for guidance! Good riddance!
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Hi everyone,
Fairportlady, hope you are doing well. I'm sorry to hear you are going through this, hope you are okay, let us know. I was touched that with all that is going on, you thought of how I was feeling. I'm glad your new perky breasts feel good - I hate these TE and can't wait to be done with them. It's good to hear that they will feel more natural. I am still feeling down and shakey, trying to numb out, I guess. I am really upset still.
Sweetie, I agree with kschreve. Did you tell the new PS that his partner didn't tell you that he does NSM? And that you were considering going out of state to have the procedure, if you are a candidate? I bet the new PS would be pretty angry and wouldn't that be awkward between those two? I understand that you feel awkward about it, I think it's something a lot of women experience, trying to make everyone feel comfortable, that's how I am. But you are taking back the night! Also, imagine if you stayed with your original PS and had the surgery and then later on found out that his partner provided NSM.
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Hi everyone Well its been almost 48 hours since my exchange and I think Im out of the woods! No excessive bleeding! Woke up to a tiny drop on the surgical bra but thats it: I think Im free and clear! I honestly dont think I ever gave myself time to feel/react to what happened after the BMX and it all came flooding back the night before the exchange and scared me: not t be dramatic but it was kinda like PTSD....anyway I think its safe to say its ok! Also I have noticed I have a little more feeling with the implants than I did with the TEs! Oh and wow I slept soooo good last night: havent had such a comfortable night since before the BMX!
Gulp hope you are doing ok and feeling a little less stressed out today: jeeze there are so many ups and downs with all this. Good days and challenging ones. I know you'll feel better as time passes and you have come so far, having that big surgery behind you and at the last minute getting to keep your nipples! I still feel so happy to have mine, it just seemed right from the first day post op like it was still "me", just (as someone said here), with different stuffing!
Sweetie that brings me to you: so happy you met with someone who can give you that option. I still cant get my head around the way those docs kept that from you about their partner: you know I like a super confident surgeon (who wouldn't) but when that turns into a super ego that interferes with good patient care thats just so wrong. I wonder if it were a sister or wife or mother of theirs it they would suddenly "remember" there were docs literally down the hall who could give them what they want?!
Hope everyone is having a good weekend: kind of uplifting to be going through this in the spring: blossoming out and transforming to a new self....
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Fairport, glad you made it through the night without bleeding.
sweetie, agree with gulp and kshreve that you should let your current ps be aware that you were given the run around at such a vulnerable time, the other ps was not being a patient advocate at all. You were not even made away of all your options when the options were right under the same roof! Hopefully this new ps will take you under his special care and see to it that you get the results you deserve being you had to break through barriers to get to him or her.
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you ladies are the best!! Glad your feeling better fairport. I agree with you all about the plastic surgeon. I'm beginning to get a weird feeling its all about who you know! It seems like the real good PS and BS are really hard to get in to see and you have to push for them. I saw three PS in the same group. Later on I found out the first one does not have a good reputation for bedside manner (felt that right when I met him too) the other didn't tell me about the NSM. It wasn't until I pushed and called around that I got the right names and even then they try to push you to the other dr's in their practice who are maybe newer or do fewer reconstructions because they are too busy to fit you in. I will tell my new PS about his partner but I was so happy to finally meet someone who "fit" what I needed that I didn't bring it up then, but trust me when all is said and done I will. Now I have to see a new BS this week and get this thing going so I can catch up with all of you!!!
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you ladies are the best!! Glad your feeling better fairport. I agree with you all about the plastic surgeon. I'm beginning to get a weird feeling its all about who you know! It seems like the real good PS and BS are really hard to get in to see and you have to push for them. I saw three PS in the same group. Later on I found out the first one does not have a good reputation for bedside manner (felt that right when I met him too) the other didn't tell me about the NSM. It wasn't until I pushed and called around that I got the right names and even then they try to push you to the other dr's in their practice who are maybe newer or do fewer reconstructions because they are too busy to fit you in. I will tell my new PS about his partner but I was so happy to finally meet someone who "fit" what I needed that I didn't bring it up then, but trust me when all is said and done I will. Now I have to see a new BS this week and get this thing going so I can catch up with all of you!!!
PB how is a skin sparing and nipple sparing done at the same time? Where are the scars?
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Fairport, I'm glad you were able to sleep better and that you did not have bleeding problems.
Sweetie, you will have to let us know how your BS appointment goes. I agree with the other ladies, your new doctor should know how you were treated by the other PS in his group.
I hope everyone had a nice weekend and wishing everyone a great week.
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TNlady-I'll let you know, trying to get in asap, I'm always waiting on someone to call me back,these dr's are incredibly booked up. Wanted to ask you all before I go, the first Dr I saw said I could do a skin sparing mastectomy, but the plastic surgeon said if you nipple sparing it is a different cut on the side near the nipple, what do you mean mean when you say you did a skin sparing and nipple sparing, can you explain what the difference is. Where were your scars? Did the nipples invert after the surgery. He showed me and said they would be pretty much flat.
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sweetie, I had the nipple sparing, which is when they save your skin and nipples. Skin sparing only, is when they save your skin, but not your nipples. My nipples are not inverted, they still perk up. The nipple that turned black took some time before it perked up, but it perks up now. The nipple area (aerola) on that same side is lighter than the other side. I did not have any problems with the right side nipple. My incisions were under my breasts, not around the nipple. They are not all the way under the folds, you can still see them. It seems that each doctor has their own way of doing the incisions. Any other questions, just let me know.
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Sweetie: I had the nipple sparing and the nipples appear as they did before, they are not flat.
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Fairport: Glad you are healing well!
Gulp: What was your oncotype? Try not to get too discouraged by the numbers. Attitude helps a lot! I know someone with stage IV ovarian cancer right now (2nd time around) and is convinced she'll lick it! Try to stay positive.
Sweetie: my mother-in-law ended up with a different eye surgeon in the same practice because she didn't like the first one and I know it was a little uncomfortable for her, but she just had the attitude that she gets to choose her doctor and told them so! Keep us posted!
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Hi. I am thinking oncotype oncotype all the time. . Very anxious all the time. My oncotype was 22. I see the oncologist tomorrow. And one of my nipples is healed and the other one still has scab on it. Wasn't someone going to recommend a cream that helps heal the nipples? Fairport, glad to hear you are doing well. I know what you mean about the PTSD stuff, I'm kinda going through that now, anxious and thinking cancer 24/7. What is the exchange surgery like anyway? How long did it take? I can't wait to be able to have a good night's sleep. I am glad your breasts feel natural and I like how you have that OB/GYN experience as a NP! Sweetie, my nipples aren't flat. Before I got my bad news and was happy about my nipples, I joked to my husband that I'm going to insist on keeping the temperature low everywhere so my nipples will be erect! Thanks bcincolorado for your encouragement.
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gulp: I just looked at my onco report and the graph looks like a 22 puts you at the low end of the intermediate risk cagtagory. Have you done chemo or rads? I know my score, which was 9, meant no chemo or rads since the benefit wouldn't be too much and I take tamox instead,.....maybe you can be so fortunate as well. Let us know how your appointment goes. We'll all be pulling for you and sending good thoughts your way!
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I saw my BS yesterday..all margains clear. No node imvolment.
I had nipple sparing 3/16. The scar is from the right edge of my right areola. it goes straight across to the side. My nipple turned black for about four days then started pinking up quite nicely. I am two weeks out today, and it looks wonderful. I have a tiny bit of feeling in it..and yesterday got a good cold chill..sending the nips into THO mode..and got a strange zappy sensation in the right nipple. It kinda hurt ..but was happy to have some sensation there other than pain of the TE.
Hopefully I can lose the last drain tomorrow..I will be one happy girl then!!
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Gulp: Dont get too discouraged about the nipple scab: my left didnt completely disappear till 8 weeks post op. All I used was A and D ointment. My exchange only took an hour but he had wanted to remove some scar tissue which he didnt do because of the bleeding
so it may have taken a little longer if he could have. He did say he would show me how to massage to break it up. My breasts are not the same size now even though the implants are the same, because of the scar tissue I think. I have been reading not to get too discouraged this soon post op because it can take 3 months for the drop and fluff thing to happen which may make a difference too. Im not happy with the size of the smaller one, but once the muscle relaxes and they "settle in" it may look better. Im just SO MUCH more comfortable now: you'll see too, you will love it. Do hang in there and try to stay positive, I know its hard to do but you arent alone 
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Hi everyone, I'm actually in the waiting room at the onc's office and they have a computer. Thanks for your responses. bcincolorado, I haven't done rads or chemo and didn't really want to do tamoxefin. I don't know what the onc is going to suggest, but either way I am scared. I guess now is the time to start getting second opinions but honestly I don't have the strength or inner resources to do that now. I am still feeling sorry for myself, which I know is stupid. I feel like I did all the thought, discussion, research etc about getting a bilateral mastecomy (nipple sparing, of course!) and I am tired of doing this. I thought I was done! But I can see that this next stage is tricky because many docs will recommend chemo with my score and I don't know what to do. opps called my name
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twirland, Welcome! I had the same shooting sensation you are talking about in the nipple for several weeks. I think it is just the nerves reconnecting. I hope you get that drain out tomorrow, they are very annoying!
gulp, I'm praying for you!
Fairport, You sound like you are doing great! You are right, they do look better as they "drop and fluff".
I'm at work, so I better check in later. Just wanted to let gulp know-you are in my thoughts.
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gulp you are definitely in my thoughts and prayers! You know everyone here is supporting you! Tamox does have side effects but it is the one with the least of them according to the charts. You can join the Bottle O'Tamoxifen thread too and commiserate SE with us like hot flashes and getting up all night long with them.
I'll do that though over getting cancer again any day!Twirlandcurl: welcome! Congrats on no lymph node involvment! I know that is exciting news and clean margins! YEA!!!
I'm glad to know about the "drop and fluff" since I'll be doing exchange and be done with hit hopefully within the next 3 months. 3 months....seems like so long.....but it seems like just yesterday I was diagnosed and then biopsy and 3 surgeries. So much has happened in such a short time period. I imagine it will go by quickly but I'll be glad to get rid of the TE as much as I was the drains! Although with the drains I stayed home and didn't have to go to work.........so maybe it wasn't all that bad! But the drugged state was too much to endure too long.
Fairport, glad your are doing well!
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TwirlandCurl: Welcome and congrats on your path report.
Gulp: Praying for you.
Fairport: As things settle, they are ever so changing. I am almost 4 months out and must say they look even fuller, I'm guessing its the chest muscle relaxing even more and letting them fill in.I don't have that tight bra feeling either.
Today, had a wonderful day at the beach. First time in a swim suit to test things out. Was pleased with how they looked. Don't have a fullness in the cleavage area unless I push them up. Areolas still sore against fabrics. It was uplifting to do something normal for a change! Hopefully was able to raise the Vit D level some with the sunshine.
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PB, Glad you had a nice day at the beach. We start Spring Break Friday, and they are predicting sunshine with a high of 78. I'm going to put the suite on, sit on the dock, and get a little sun myself.
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