Nipple Sparing Mastectomy with immediate reconstruction
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Thistoo- You are in my thoughts and prayers for speedy healing and getting through this setback.
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Thank you so much for your reply Joyh 1109!!! Luckily i found this site thanks to my concerned husband..I am sorry to have learned you had the cancer diagnosis its my biggest fear and unless i do this it will way on my mind daily ..I have many questions about this procedure that some people might not wanna share..Will you feel comfortable anwsering some of my questions???
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Thank you Ella 1998 for your response..Im gratefull to have someone to talk too that has made this descion..Wow its a hard descion!!! Your right though i think id rather do this than have it weigh on me daily..I am very scared and have to make a very big descion but being able to talk to someone with my own case gives me much comfort..lol now tell me what to expect,,i wanna know it all...my docter sais knowledge is power so being the same case would you mind answering some im sure really personal questions for me??? I really look foward to hearing from you and again thank you soo much for your response..:}
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shawna32 - Hi, I can't help you with your decision to have mastectomy surgery without a definite diagnosis of cancer. So sorry you have to make that decision. I was initially diagnosed with ILC and had to decide between lumpectomy and single mastectomy. Then a second cancer was found in the same breast. Lumpectomy was no longer an option, but I then had to choose between unilateral and bilateral mastectomy. Nothing about breast cancer is easy and you're unlikely to find any two women with exactly the same story. It's just plain hard (especially in the beginning) and it just plain sucks
.That said, it usually gets easier once you've done all your research and have a plan in place. And if you choose nipple sparing surgery we are all here to answer any and all questions, no matter how big or small.
Good luck and best wishes with whatever you decide!
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shawna32 I would be happy to answer any questions you have. This is the perfect forum, I'm sure that others will chime in too. For me it was a good feeling to know that I have done all that I can to get rid of the cancer by having surgery. I've had no regrets.
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shawna32 i will be happy to answer all your questions. You can PM me any time.
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shawna- So sorry you are having to face this difficult decision. It's not an easy one to make and the hardest part is we never know if we made the right one or not. You just need to follow your heart and do what feels right. I'd just say take a breath and don't rush into anything until you've explored all your options with your surgery and, if you want, reconstruction. There are a lot of different choices out there with pros and cons for all. I've done a lot of research regarding nipple sparing as well as reconstruction using fat grafting and am happy to answer any questions as well. Good luck and know we're all here for you!
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Shawna32, I had a lump removed in May that was LCIS, which they don't consider to be a true cancer anymore. I have a family history of BC, but tested negative for the known mutations. Even so, I opted to have prophylactic bilateral NSM in August as I have two small children and didn't want to run the risk of not finding the cancer soon enough when/if I ever developed it. After having spoken to a couple of my cousins who had BMX, I felt comfortable that it was the right thing for me as well. You definitely have to prepare yourself psychologically if that is the path you choose. I would suggest that since you don't need to rush to surgery that you take your time and interview several surgeons until you find one that you are comfortable with. Please feel free to ask me any questions as well.
ThisToo, I am thinking of you and praying that all goes well from this point forward for you0 -
inLA- I noticed in the active threads that someone just started one called "Getting pregnant before starting Tamoxifen". Thought you might be interested-
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Shawna,
I had a NS/PBMX in March. I had no diagnosis of cancer but did have a very strong family history of breast cancer. While it was indeed a difficult decision to make, I believe I made the right decision for me. It is not the right decision for everyone, but if it is the correct decision for YOU, you will know it. I have had a very good result and am more than happy to answer any questions you may have for I suspect you will have many, many questions you need to have answered. Please feel free to send me a private message and I am very happy to help in any way I can! All the ladies on this thread are wonderful and you will get much help here!
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Thanks, Kate33! I'll check it out.
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Hi girls,
Thank you so so much for your kind words and encouragement.
Surgery went ok. It was a disaster as my kids were simultaneously hospitalized with pneumonia and it just broke my heart when I came out of surgery and sen my husband to be with them.
Both implants were removed. Expanders put in. Right nipple removed and quite a bit of surrounding tissue. I am feeling hopeless as my right side is completely flat and skin is tight and flat. How will I ever have any skin to expand? It's just flat. I never thought this would be my road when I embarked on this journey of preventative mastectomy at just being 27 and with healthy breast. I am young and healthy so defiantly didn't expect to be where I am now.
Going through this journey just intensifies my feeling of admiration to all women dealing with cancer, those that didn't have options, those who have so much more to worry than just esthetic outcome. You all should have monuments in your honor as it requires unbelievable strength, courage and believe.0 -
I want to Thank all of the wonderfull women that have given me insite on this..although i just read ThistooShallpass post and these are problems i dont want..poor girl ...Im young also and have seen so many pictures of these poor women that look like she was at a butcher..im definitly pointing to haven this done,,,but am afraid of complications like hers..I guess its a chance we all have to take in making this descion..I will say having you all to talk to about this does make it alittle easier ,,and to ThisTooShallPass im thinking about ya and wish you the best of luck,,and again thank you all soooo very much..
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Thistoo- I am praying for you and your little ones too that you will all be feeling better soon. I know it is hard as a mother not to be right there with them and to have your husband not be with you but we are all here and you can come on for support at any time. Remember...This too shall pass...you must believe that!
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ThisToo Thinking of you, your husband and your children on this very tough day. Sending healing thoughts, prayers and gentle hugs.
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Thistoo:
I am so very sorry to hear about your ordeal. To ease your mind a bit -- you will definitely have enough skin to expand as the more common way of dong mastectomies is to remove the nipple and most skin; sew up the incision; and start the reconstruction later -- with tissue expanders that expand the skin. (The skin is VERY pliable.) There are great new ways of creating a nipple that are truly looking better and better.
This is certainly not where you wanted to end up - especially after a prophyalatic mastectomy at such a young age. But please do not lose hope and remember you need to let yourself heal. Do you have extended family who could help your husband with the kids and help around the house? I don't know but perhaps there are volunteer groups who could help out? Neighbors or church members? People are willing to help - sometimes all you need to do is ask!
I am thinking of you big time and hope that the worst is behind you very soon. amsk.
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This too - thinking of you and all that you have gone through recently. Allow yourself to grieve the loss, but also remember that as amsk pointed out, you still have very viable options for your reconstruction. This is a detour you would never have chosen, but nonetheless you had to - you will get back on track in time and things will get better.
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ThisToo - Thank you for the update. Sending you good thoughts and wishing you much ease as you recover from surgery.
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ThisToo- Sending you some gentle hugs and healing thoughts not only for you, but your children too. Sometimes it really does pour when it rains. You have an amazing attitude and spirit, though, to be sending out admiration for others, when you yourself are going through so much. It really says a lot about you.
Shawna- Despite everyone's best efforts, like ThisToo's, complications can happen. The best thing you can do is find a breast surgeon and plastic surgeon who are extremely experienced in nipple sparing. The level of a surgeon's experience is the biggest factor in the success of NS. But even with the best experience there are still risks.
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Just an FYI for any newbies to this thread and just starting their research. I would like to dispell any confusion that might arise by the name of this thread. It confused me a bit in the beginning so I thought it might be helpful to clairify.
There are two methods for nipple sparing mastectomy:
Most of us who have been posting on this thread for a while have had nipple sparing surgery with immediate placement of tissue expanders (TEs) and are going through a longer process of expansion of skin and muscle prior to placement of the implants at a second surgery months down the road. It is the more established approach.
There are more and more women posting here who are having the "all in one" surgery where the implants are placed immediately following mastectomy (same day). No waiting, no tissue expanders.
One is not necessarily better than the other. There have been good and bad outcomes with each. There are benefits and risks with each. I just wanted to point out that you need to ask your breast surgeon and your plastic surgeon to explain their preferences and why they might recommend one over the other in your particular case.
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ThisTooShallPass - Oh, what a rotten, rotten day for you. When it rains, it pours, right? Sending good thoughts to your whole family...
I'm sure it's hard to see today, but things are definitely not hopeless. You would be amazed at the beautiful results that a good plastic surgeon can achieve. I'm not in your shoes, but I do understand how discouraging it is when things don't go according to plan. It will get better!
We are here to try to answer questions. We all get what you're going through even if our paths aren't exactly the same. Please keep the faith!!!
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ThisTooShallPass - My heart goes out to you and your little ones. Sending prayers for you all to get better soon. I am so sorry you had this setback but as the others have said, you will still have many options when the time is right. Hoping you can find peace with the setback and will be here for you.
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Good Morning This Too,
You are in my thoughts and prayers as are your children and your husband. I imagine this must be the most difficult thing you have experienced in your life and I do want to tell you that I am absolutely positive this too shall pass and get much better sooner than you expect! I know it can't happen too soon for you!
Like someone else said, a good plastic surgeon can do wonders with reconstruction. It may not seem that way right now but it is actually true. I am so sorry for the loss of the nipple but am very grateful that you are on the road to recovery. Sometimes the road seems long and difficult, but you do eventually get to the end of the road and the prize is there waiting for you. I pray your prize will be good health, no cancer, and beautiful breasts!
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This too - just sending hugs your way - you are going through some intense stuff, and I understand that at times you wonder how you will walk away with a "desirable outcome"...rest assured, your skin will stretch. More than you ever could have imagined. Things will be ok, even though right now it's hard to see that. I'm thinking of you and sending some moral support your way. I hope your kids are doing allright, hang in there! xo
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Hi girls,
Wow, THANK YOU so much for the outporing of support and encouragement. It means a lot.
I know I don't have the worst situation compared to women fighting for their life, but I just hope that some who read this thread in preparation for surgery or perhaps while making their decision to do prophylactic can take away something - that it's not always goes as it's planned. I have to admit I wasn't really prepared for this turn, but that's ok. Interestingly enough as my drama was playing out, there were news on Juliana Rancic doing her BMX and when I was watching Access Hollywood they made it seem like it's just such an easy procedure and "hey, you will have great breast after this." While it's true, maybe for many, some can have what I've got and I feel it wasn't communicated through in the programm, specially since their goal was to "reach young women" and I think young women should know. My sister had exact the same surgery a year ago with the same team of doctors and her results were outstanding from the day 1 post op. Just beautiful outcome, truly better looking breast than before surgery. I am so so glad for her but I think I might have expected the same thing and that was the wrong thing to do.
I have to say it was a crazy day. I was at ps office and right previous night me and my husband spent all night with my twins giving them meds and holding cold blankets to their heads and trying to cool them down from crazy fever. Their pediatric appointment was at 4pm and we were supposed to go. At my appointment my ps said, we have to rush and he wanted to do surgery as fast as he could in order not to jeapordize any tissue. My in-laws went with kids to pediatrician and were sent to hospital right away. As I was wheeled into surgery my husband was on the phone with dr from kid's hospital telling him that my son was dehydrated and they can't find a vein for iv and just imagine the state of my mind. When I was out of surgery I just pleaded for my husband to leave me and go to our kids as they needed mommy and daddy. Then I spent time in recovery and was discharged at 3am and went straight to the hospital to kids all drugged up and stayed there all night beside my son on the futon. Thank goodness for my in-laws otherwise no one else could help us, I would not know what to do. Pretty much since then I was between my home with my daugher and hospital with my son. Today is day 4 post op and my son finally got released after 4 days in the hospita. I feel like I didn't even have anythyng done as I couldn't think of anything else but my poor baby boy with iv in the hospital. Just a crazy timing.
I didn't expect so many replies and it was so wonderful just to know someone was listening. Thank you all so much for that.
Anyway, enough about me. How is everyone else doing?
inLA - How is your nipple doing? Is your drain out yet? I really feel for you and your desire to have kids. I cam't closely compare or even imagine your situation but can relate a little bit because we went through 5 rounds of IVF to get my twins and the feeling of wanting to have children and not being able to is very consuming and hearwrenching. I truly hope that after your treatment you will be able to start trying and won't have to wait too long.
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Wow ThisToo: I cannot believe all your family is having to deal with right now. It has to be so incredibly difficult with your kids so sick. Please remember to take care of yourself though. I am glad to hear you are getting some help from your in-laws. Would it be possible to hire a nurse or personal aide for a short while?It is interesting to hear that your sister went through the same procedure with the same team of doctors and had an excellent result. Have you asked your drs why your experience has been so different from hers? Do you think you tried to do too much too soon? I just wonder what the explanation is for such different outcomes. Not that yours won't turn out find in the end -- I believe it will; but you are having to go through a lengthier, more involved process involving additional surgeries. Your spirits sound good considering all you have been through. And yes - as you know people on this board are very concerned about you. Keep us posted - hugs and prayers - amsk.0
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ThisToo- I'm just curious- was everything identical with your sister's surgery? Did your sister also have the one step or did she have TE's/implants? It seems that those that do the one step the nipples seem to be in a more fragile state than those with TE's. Perhaps the immediate pressure on the blood supply might have something to do with it? Not really sure but wondering if there is a connection. Some women who have had NS with TE's have developed nipple issues and the PS's first response is to drain some of the saline from the TE's to relieve the pressure. Anyway, hope everything is healing now. I know it will be a longer process but there are still so many options for a beautiful result!
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Girls,
My sister has the exact same procedure down to the implant brand and Alloderm and "one-step". The only difference of can think of is my sisters breast were originally a B cup so she did not require a lift. Since mine were almost D and had a lot of sagging, I had to have a lift along with my NSBMX and Alloderm. I am starting to believe that that might have influenced. I mean, the day after surgery my sisters nipples and breast had absolutely no bruising or even slight discoloration. I don't know, this is just a mystery to me. I am also disappointed that my ps cut away so much skin on the first procedure and did such an aggressive breast reduction / lift knowing that I wanted to stay close to the same size. Well, what's done is done and I try my best not to reminisce about what could have been. Just now trying to really figure out what implants to get as I hated my look before.0 -
ThisToo - Once again, sorry this has become a longer road for you than you initially thought it would be. I hope your kids are feeling better because at least that is one less stresser. As many people have already said, your attitude is commendable and will definitely help you through this process. (I do hope that if you do have anger or grief or anything in that part of the spectrum, you allow yourself those feelings too - for me, those come especially when I don't have hands on things to attend to and, quite frankly, I have yet to figure out the best way to process them.) My thoughts are with you as you navigate through all of this...Thank you for your thoughts about kids. This is not how I imagined my late 30s to play out. I do know things happen for a reason and perhaps if my husband and I can have kids down the line, what I have learned from this will make me a better parent.
In terms of what's going on with healing, my left nipple is still healing well and my right is starting to look better but I am concerned. It continues to bleed a tad and there is a dark, non-scabby patch just underneath the nipple, which I am hoping is just a bruise. Above the right nipple looks healthy, however around the sides there are some red and raw patches. At this point I am heavy on the neosporin and thankfully I will be seeing my BS tomorrow so I will get more info then...Oh and I still have the lovely drain in. Hoping it comes out tomorrow although not a guarantee.
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ThisToo- It was only recently that some BS's would even attempt a NS on someone larger breasted and some still won't. The cut off for most is C cup or smaller. Many feel it is too difficult to maintain the blood supply to the nipple when it has so far to travel. So even though it wasn't successful I commend your surgeon for at least trying. I feel like we've got to constantly push the envelope or things will never improve. I know it's hard but keep your "eye on the prize"- the reason you chose to do MX. It was to lower your risk and you have done that and you can find a lot of peace in that. Keep up your amazing (!!!) attitude! It will take you far in all this! (((hugs)))
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