nipple and skin sparring bilateral mastectomy
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I was diagnosed about two weeks ago. I met with my surgeon last Thursday and she said that if I was going to go the mastectomy route that I may be a good candidate for the nipple and skin sparring mastectomy because my DCIS is small and may be far enough away from the nipple. I don't get to meet with the plastic surgeon until the 23rd so I have time to research. I am also waiting for an MRI and the results from the BRCA test. If I don't do the mastectomy than I would have a lumpectomy with radiation and Tamoxifen for five years. Well from the start I was not thrilled about the radiation or having to take the Tamoxifen for five years. I was having a hard time with the fact that I would lose all feeling in my breasts if I choose to do the double mastectomy. I am married and we have a decent sex life so this has been hard for me. After looking at some pictures of this procedure I pretty much have decided that this is the way I think I want to go. Has anyone had this procedure that can give me some feedback on how well it worked for you and if you are happy with the results? Also if you had it done all in the same surgery or was it a process over a few months? This has been a rollercoaster ride for me with my emotions but I finally am starting to come to terms with the decision I have to make and would really like to just get the show on the road. The waiting for the test results is the hardest part. -
You may be aware of this, but it's not clear in your post so just in case, from my understanding you still lose most of the sensation even with a skin/nipple sparing because all the nerves that lead to the nipples have to be severed when the underlying tissues are removed. If sensation is important to you, you may want to discuss with the surgeon exactly what you can expect in that regard, and maybe browse through the mastectomy forums here at BCO. The surgery is the same whether the patient has DCIS or invasive cancer, so you may get more information by expanding the forums you inquire in.
Loss of sensation was probably the primary reason I chose a lumpectomy instead of a mastectomy. I did do rads and am almost 2 years into the Tamoxifen with no regrets.
Best of luck with whatever you end up deciding!
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Thank you Annette47 for your reply! I think that I have come to terms with the loss of feeling. I am DCIS in situ, grade 3 and both ER+ and PR+. There is history in my family of ovarian cancer but not breast. I unfortunately have had issues with my mammograms every year that I have had them and it is quite stressful. I am blessed to have been married to my husband for 26 years now and he has told me what ever I choose he will support me 100% It just sucks that cancer is forcing me to have to make a decision that will affect me for the rest of my life. I have been walking this path with a very close friend of mine for the past 9 months and have seen her go through the process. I don't think I want to have to do this more than once so for me I am trying to get feedback on other peoples experience so that I am well informed before I make the final decision. I am happy that your decision worked for you and that it is going well for you! Best wishes for you to stay cancer free;) -
sorry you have found yourself here. I was diagnosed with DCIS in December and 3 weeks ago I had a double mastectomy and immediate reconstruction with DIEP. The doctors said I could do nipple sparing, but the plastic surgeon thought he could get a better cosmetic result if I didnt keep my nipples. In the end, I decided to go with his decision and I didn't want to have to worry about lingering Cancer cells in the nipples in the future. I am only 35 and I was definitely worried about my appearance and what my husband would think. I'm still far from healed, but honestly I am pleasantly surprised by the outcome so far.
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thank you for you reply. I won't see the plastic surgeon for a few weeks but I am glad to hear that you had a positive experience because that is what I would like to have happen. The nipples are not a deal breaker but would be nice if it can be done. I know what you mean about peace of mind though so the doctors advice will be considered first. Good luck to yo
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hi there, I just had a Uni mx- skin and nipple sparing. It came out great...until the pathology results came back a week later. I had residual DCIS in my nipple. So I had to go in again to get it removed. But (so far) I still feel good that I did it this way. I had two top breast surgeons who recommended nipple sparing because they felt it was unlikely that there would be an issue. I was deemed a good candidate for this type of surgery and I felt comfortable making a decision based on this likelihood. But it is of course it is case by case. I highly recommend getting a second opinion so you can think it over. I got three opinions! I will be getting reconstruction now..
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Hi there,
I had bilateral skin and nipple sparing mastectomies in April 2014. I had immediate implants, no expanders, so all in one surgery, however I am going in for a revision on Thursday, to change implants to try and correct some minor cosmetic issues due to my thin skin. Overall however, I have very good results, and had a smooth recovery (hoping that experience repeats itself this week!)
I always knew I was getting skin sparing, as mine were purely prophylactic, but I had been less sure about the nipples. I am very glad I did keep them though, I think it made me see my new breasts much easier as my own in a way, even though they were not quite the same. My nipples were nothing to write home about before surgery, they are pale and quite flat, but I appreciate them much more now. Before surgery I hardly was bothered about keeping them or worried about losing them if they did not work out, but as soon as I had my surgery I because ultra concerned about them surviving...we bonded I guess as I checked them everyday, stressed over every change in colour, and applied ointments and such
As for sensation, I do have some skin sensation and even some pretty high sensitivity in parts, but they are definitely not like they were before. This for me is not such a bad thing as even though I am still quite young (34 at time of surgery), have a strong and happy marriage and a good sex life, I had pretty painful and fibrocystic breasts, and had stopped getting much sexual enjoyment from my breasts due to this and my anxiety over my risk affecting my perspective of my breasts, but if your breasts are a big part of your sexual pleasure this is definitely something to be aware of, and it may take some time to adjust to in actuality, from what I have heard from a few friends who had these surgeries and did derive a lot of pleasure from their breasts.
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Hi,
Sorry you have to go through this but allow me to share my experience thus far.
I just had nipple sparing bilateral mastectomy with immediate reconstruction via Breast implants 2 weeks ago (23 February 2015). I'm diagnosed with IDC, 7mm, grade 1, 3cm away from nipple.
It was 1 surgery over 6 hours. During surgery, I had 3 main doctors: anesthetist, Breast surgeon who did the mastectomy, and a PS who did the recon. Prior to surgery, they had to inject radio isotopes to help my surgeon identity the sentinel node.
I was lucky. I woke up and felt alright. I was in the operating theatre at 1:45pm. I was back in my hospital room at 8:30pm talking to my family and having pumpkin soup.
The first week was a bit challenging due to the drains. I started with 4 drains in total. By day 3, I was down to 2. Day 7 post surgery, they were taken out and I went home. Generally I was back to my usual happy self even on Day 1 post surgery. But I get tired easy. Chatting with friends visiting would zap my every and I would need to pause and lay back.
Physiotherapy is important. My physio came Day 1 post surgery and she helped me get up from bed to start walking. And then she taught me some shoulder and Pec muscle exercises. Luckily, I seem to be able to slowly manage the exercises she taught me even on Day 1.
Feeling. The nipple is definitely numb. I touch my Breasts and I don't feel much. Week 1, my chest also had a tight feeling. Now that I'm on Week 2, this has definitely gone better. I find myself walking without feeling my "chest pressure" now. The nipple feeling was important for me. This was a pleasure point and this was my biggest downside for choosing mastectomy. But that was pretty much it. The upside for me was so much more. I'm happy to share why I chose mastectomy and I've actually posted it here in the forum too. I am single by the way.
Cosmesis. My Surgeons are all happy about my results. Admittedly, as the swelling and bruising are starting to settle, I'm starting to believe them. It's actually looking good. I went a little bigger. Surgeon removed 250cc and my PS put in a 410cc implant. I used to be a cupA. Let's see what my final bra size will be. I had a tiny necrosis on my left nipple (3mm) and that's healing well. I have my incision in the Inframammary fold so it's easy to hide. My PS is also working with me to help minimize my scars. He's injecting Botox on healed scars and giving me creams for them.
I hope this helps. Let me know if you have other questions x
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I had the same surgery in 2013. I have no feeling in my breast or nipples, but I wasn't hoping for that--just wanted to keep the nipples for cosmetic reasons and to simplify the procedure. My PS did a biopsy of the tissue under each nipple before we went forward to make sure there wasn't indication of bad stuff in there.
I've healed well and scars are minimal. I stayed small so this might have helped the healing time, which was about 4 weeks altogether with no expanders needed, just smallish silicone implants and some fat grafting.
Claire in AZ
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I should add the pathology in the "good" breast came back as mild hyperplasia, ILC, so I was glad that I had the BMX. Nothing about hyperplasia was ever indicated on any post-tx mammo followups, or the two US and breast MRIs I had.
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thank you ladies for your feedback! You are an inspiring group of woman. I have pretty much come to the decision to go for the bilateral mastectomy so it is nice to hear about the positive outcomes. I am not a vain person but loosing your breasts is a life altering event so if I can keep a little part of me when it is all said and done I would be elated. I know that when the surgery takes place that there is always a chance That they find more so I hope to have a backup plan in place with the ps. I like the thought of taking the power away from my cancer.
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I had my nsbmx with direct implants 2/13. My nipples are still healing and they hurt! Guess that's a good thing, and I think everyone's different.
Best of luck!
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I was diagnosed with DCIS in December of 2013. In February of 2014 I had a nipple sparing double mastectomy. Both my surgeon an plastic surgeon told me that they thought I was a good candidate for the nipple sparing mastectomy. I had a 9 hour surgery with immediate reconstruction. I left the hospital the following day with saline implants. I had 4 drains for the first week and once they were removed I was much more comfortable. I was blessed to have two great surgeons that did an amazing job. It's been one year since my surgery and I'm very happy with the outcome. I still don't have any sensation on the cancer side (right) but I do have a bit more feeling on the left. The scars have faded tremendously! I'm 48 and for me it was important to look as normal as possible. I had a small procedure several months ago to fix a gap that was noticeable (to me) after the implants had settled IN. I would recommend this procedure if you are a candidate. I was fortunate not to need any further treatment like radiation or the 5 year medication.
Best of luck on your coming procedure!
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I am happy you had a great outcome! Thank you for sharing it with me. I am hoping that the plastic surgeon will say the same thing as my other surgeon and give me a go for this procedure. I think if I can come out somewhat looking like my old self that it will make the process not so bad. Good luck to you
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Ok so this is going to sound weird. I have always had issues with my nipples. Can't stand for them to be touched and could not breast feed because of it. It inflicts this weird, gross, gonna jump out of my skin feeling sprinkled with despair. Since I am still healing from my nsbmx (problems with ulceration, etc) this gross awful feeling is always there. Am I alone?????
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I have had the hypersensitivity to my left nipple after my nipple sparing surgery in December. So uncomfortable! It has significantly decreased at this point and rarely seems to bother me. That nipple was also hypersensitive before my surgery. I can't feel anything on my right side. -
Sorry about your diagnosis. It is similar to my story. I was diagnosed with multifocal DCIS in my right breast 5 years ago at 42. My sister had stage 2 BC at 39 and watching her go through chemo, radiation, surgery and Tamoxifen led me to having a NSDM with immediate reconstruction. The surgery was tough, but I made it through. My breasts look good but I have never found the silicone implants comfortable. They are under my pec muscle and get particularly sore when I workout. I got tired of how uncomfortable they were and one implant started to become painful. My small town PS wasn't any help with why they were uncomfortable. I went to a different surgeon in a bigger city (a woman- no offense to male doctors, but I don't think they really understand what a woman is going through). She said I had capsular contraction on my painful breast and I would have to have surgery to fix it because it was just going to get worse and more painful. I am having the implants removed on 4/8 and will have autologous fat transfer (AFT) to make new breasts. This is a fairly new procedure and not a lot of doctors do it. Honestly, I am so excited to get rid of my implants. I find them heavy, tight, cold, and numb. I got the implants thinking it was the best and easiest way to move on from BC but they are a constant reminder instead. I don't even like to have them touched. I know a lot of women don't have a problem with implants, but unfortunately I wasn't one of them. You are smart to do your research on implants, get other's experiences and explore other reconstruction options. Also keep in mind that implants will have to be replaced over time. There are issues with all options and unfortunately your breasts will never be the same. I hope that using my own fat will feel more natural and that some of the tightness and numbness will away. I also know that what happens after their removal is a big mystery because nothing is a sure bet after surgery. One can just hope everything goes well. I'm also considering having the nipples removed, the numbness it annoying.
I would highly recommend seeing a qualified PT after your surgery to help with healing. I didn't do that (was never recommended) and really wish I did. Through these discussion boards I have found women who did PT find their implants more comfortable. Everyone is different so you have to take advice with a grain of salt. It can be very helpful but you have to do your own research and do what is right for you. Occasionally women who have had boob jobs try to relate their experience with mine, and despite their best intentions, this is not a boob job. It is very different.
Good luck with everything. Be patient and kind to yourself.
Barbara
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Barbara: Please keep us updated. I am very anxious to hear about your outcome. I am only 6 weeks post-op but can't stand the feeling of the implants...they are like rocks and hate the way they feel when they move. Yuck! I hate them! I have lots of rippling on the cancer side that I didn't think you could get with under the muscle.
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Thank you Barbara for sharing your experience! I just had my second MRI today. I had one last Thursday and the contrast went into my arm instead of my vein so I had to redo. Today was much better. I met with the PS this past Monday and he said that I am a good candidate for the nipple sparing mastectomy. He did tell me that expanders is a better way to go so that the skin has a better chance of surviving and to stretch the muscle over time. Hearing your experience and others on this sight has helped keep me from freaking out. I like to know what I am in for and what helps and doesn't. I know every case is different but it helps all the same to know that we are not alone. Now I wait for the doctors to coordinate a date for surgery and see them one more time. I am anxious to get it done but scared also. You woman help more than you know! -
Keep us posted Middleagemama! My NSBMX turned out fairly well. My areola is much smaller though. I can't wrap my head around the rippling issues when the implant is under the muscle. I will definitely be looking at fat grafting to correct the rippling and dents. I did not do TE's. I had one-step to implant because I only wanted a high B, low C. Looks like a low B to me. Sigh. -
Decisions, decisions...take your time and the more information u take in the better for your own personal choice. I had a nipple sparing mastectomy on my right, but was unable to have it on my left where my cancer was located. My right side looked great from the get go, 11/11/14, and my nipple does respond to stimuli already, just no feeling. I had reconstruction with tissue expanders, but unfortunately my left expander had to be removed due to an infection 12/22/14, will get it replaced 4/16/15 after waiting 3 mo. I am glad I have my right side as a good example to make my left side look like it's old self! Every person needs to make their own decision...hope you will come to a good plan for your own journey...nipple sparing was the right choice for me even though when I was first diagnosed my first thought was no mastectomy....your thinking changes as you become more informed! Good luck!
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Thank you sixtysweeper63 for sharing your story! I am two weeks and a few days away from my surgery. I am a candidate for this procedure so I will be having a BMX with reconstruction with TE's and last but not least SNB on my left side. I have decided that no matter what I would be going through with the BMX because I want off of this cancer rollercoaster. I have since found out through my MRI with contrast that there may be a second location on the same breast but since I am having the BMX I am not having anymore biopsies. Thanks again for sharing your experience. I could not have stayed sane if it wasn't for all of you wonderfully strong woman to help me through! -
I'm so glad I found this topic board. Next Fri, I will have my NSBMX with TEs. I have no experience with health challenges or surgery (never even had a baby). So it's easy for my imagination to go wild with how awful the pain, post-op drains and fatigue will be. I'm terrified about being an invalid for several weeks. Your posts are much more positive and hopeful than others I've read. Thanks for inspiring me. I think I'll be OK. Bless you all.
Jea
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evelynsfirstborn, this forum has been lifesaver for me! You are having your surgery a few days before me. Good luck to you. We can compare notes after since we are having the same procedure.
Tish
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I'm feeling more peaceful about the surgery as it gets closer, Tish. This time next week, I hope to be cancer-free and, even though I'll be hurting & dealing w/ drains, I'll be closer to recovery. I expect to be healthier than ever eventually. Last week, it felt like i was going in front of a firing squad. It gets better. We got this
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Barbara510 - Let us know how you made out with the fat transfer!
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Jea, so glad you are feeling better this week! See you on the other side
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Getting close to my surgery day. Amazing to me how much of this process is a mental balancing act -- it's been an emotional roller coaster this week. Anxiety & calm. Feeling positive then fearful. Will be glad to move on to the next phase. It's the unknown that's so scary. Wishing all of you, good health.
I will never take it for granted again.
Back in touch when I can.
Jean
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Jean - you will do just fine!!! I remember how awful I felt but then it's done and you're moving forward. We will be thinking about you.
Are you having nipple-sparing?
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Hi Lily59, thanks for your support! I feel like I've been in a holding pattern for so long. It will be good to get the recovery started! It helps to hear from you that you survived surgery with grace. Yes, I am having nipple-saving surgery. The DCIS mass in right breast is close to chest wall so I'm a good candidate. But I know anything can happen. A little nervous about the dye injection this afternoon. Praying that sentinel node is clear tomorrow. Gosh, there are so many wonderful women urging me on I love you guys!!
Jean
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