Nipple Sparing Mastectomy with immediate reconstruction
Comments
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I would definitely post photos. I just don't know how to do that and haven't signed up for the picture forum. I have 'before' photos ... 'during' (oh those awful drains and some not too nice blisters that I did get most likely from surgical tape used during that 9+ hours surgery) and some 'after' up until now.
Whatever I can do to help others I will do. I know that looking up photos online via google search, etc. and finding what others looked like really helped me to take some of the fear of the unknown away.
I also need to learn how to get a pic up on my profile.
We are all in this together!
Thanks for the encouragement Tina!
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dltnhm - Hi again! If you click on your name your account page should appear. Look for a link to "Edit Profile" (something like that) near the upper right of the box and you should see an option to browse for a photo from your computer to add as your avatar.
Regarding the picture forum... send a private message (PM) to Lilah, DawneHope, or firni to ask for access. It's a totally separate and privately moderated site. You have to have quite a few posts here before gaining access (don't know the exact number). It's so helpful to see the real nitty gritty instead of the nice "before and after" pix we so often see on PS websites.
Hang in there!
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Hi ladies,
I am new to this website as of a few weeks ago and just found the topic. I had a mastectomy nipple sparing done on Monday just 3 days ago. I am now nervous that maybe I should have just got rid if it. I am feeling really anxious about it today. My nodes were negative so that s good. My tumor was far away from my nipple and small so that's why they said I was a good candidate for nsm. I am just starting to feel anxious and get light headed when I see my new boob. The numbness of the breast and nipple just really freaks me out. Does anyone seem to ge over that?? And for those of u that did do nsm, are younhappybyou did. What extra screenings do u now have to do...just MRIs...?0 -
Hello Ladies just wanted to let eveyone know that I had my NS BMX with TEs on Dec 9th. I went for my last fill in last week and am scheduled for my exchange surgery Feb-16 th. So far I have to say I am happy I was able to do this procedure. I have a scar on the outside of each breast that follows the area that my underwire bra followed before surgery they are very thin. My nipples and areoles look good. I do have a slightly lighter area on the areole of my rt breast were the BS "scraped". When the scab came off the area was slightly lighter. I may darken some but its ok if it dosn't. Now my DH just thinks they are the greatest thing since sliced bread...He says they look awesome. looking forward to the 'squishes'. Praying everything goes well with it.
Praying also that everyone is doing well and healing
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sjensen29 - Welcome, but sorry for the reason you have to be here. Sounds like you're having some normal post MX feelings. There's definitely a grieving process that takes place, plus the effects of surgery (anesthesia, etc) can mess with you for a while. Regret, fear, second-guessing, anger.....all pretty understandable. The whole thing sucks, plain and simple!
Just so you know, you would have had numbness even if you didn't have nipple-sparing surgery. I actually was pretty pleased right out of surgery as I had tissue expanders and my PS filled them quite a bit right at the beginning. I looked very much like my pre-MX self. I really didn't have my first real breast cancer meltdown until the first time I was able to take a "real" shower after surgery. The lack of feeling when the water hit my chest absolutely floored me and I fell apart. It's a very sad and unfortunate part of all this, but you will get used to it pretty quickly.
I'm sorry you're having doubts or regrets about your decision to save your nipples. It sounds like you were a great candidate. Does your BS do many NSM? Is there a reason you are second-guessing this? You asked if most women are happy with their decision. Personally, I am thrilled I was offered this option.
Regarding follow-ups...you didn't mention if you had unilateral or bilateral surgery. That will definitely make a difference in your follow-up care. I had bilateral surgery and I recently got my implants so I will have an MRI every 2 years to check for leaks. Otherwise, manual breast exams would find any new breast cancers as they can only now happen in any breast cells left behind just under the skin. So, my breast surgeon, oncologist, and gynecologist will all be doing thorough breast exams. After 5 years I guess it will be up to my gynecologist as I won't be seeing the MO or BS anymore.
Please keep us posted with how you're feeling. It's all very overwhelming in the beginning, but try to focus on healing right now. Best wishes!
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Janie-bug - Sounds like everything went well for you - congratulations! My DH has also been very supportive and as amazed with this whole process as I have been. I had a bumpy ride after my MX surgery (healing issues), but reconstruction has gone well and I'm very pleased. I have a fabulous BS and PS and I'm so grateful.
Good luck!
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Thanks for the tips Tina. For some reason I cannot do that on myhusband's pad which actually makes sense now that I write it down. I will try the picture part using our home computer later today.
Hope your Saturday is extraordinary.
Diana0 -
sjensen- If you're nervous about the NS because you're concerned with the cancer coming back you should know that current research shows the rate of recurrence is exactly the same as someone who did not save their nipples. And while it can take some getting used to having numb skin it would definitely be harder to get used to seeing your breasts without nipples. (And if you hadn't saved your nipples you would still have numb skin.) It's been shown that women who have NS adjust better and more quickly to the MX. As far as follow up some recommend an annual visit with your BS, for 5 years (3 for those who had DCIS), who will do a breast exam.
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That's interesting..thanks for the comforting thought!
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Sherry, good luck with your surgery. I am so conflicted. After seeing the PS, was petrified.......am so afraid of it not working, and I do not want "flap" surgery of any kind. She has a 90% success rate and says if there are "issues" post op, she uses hyperbaric oxygenation...interesting..after leaving her office...I was thinking....am going to do 6 month check-ups.........then yesterday was told I need to look at my breasts as angry, and should have surgery. She did say my breasts were in good shape and I told her I did not want bigger, a little smaller (and I am not big--want a B-) and she said that would help. thinking of going to Johns Hopkins just for a second opinion, maybe they can give me their thoughts on successfrul NSBMX with my radiation history.
DECISIONS DECISIONS...
Donna
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Donna my PS also said that if he does not think I am healing fast enough he will send me to hyperbaric treatments.
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Hi Ladies,
Well I cancelled my surgery date for Feb 15th, (my oncologist didn't seem very impressed) and I made some appts with a new BS and PS in Vancouver who I know have done NSM procedure with success. The problem is I cant get in to see them until Feb 27th and Mar 13th (they are all away at some conference), and that would mean waiting until April for surgery, my tumour was measured 6mm at dx in November, that would mean surgery would be 5 months from dx. My oncologist says I am pushing it as far as time is concerned. Has anyone else here had to wait like this, it's really making me nervous, maybe I should consider a lumpectomy in the meantime? does anyone know at what size a tumour becomes more of a concern? The more I read about the surgery the more convinced I am that this is the route I want to go, I just wish I could get seen earlier so I could make a decision either way.
Lisette
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Lisette,
You need to know the features of your cancer. I know you said it is invasive. Has it been tested for Her2? Is it a grade 3? Those components make it more aggressive. You need to know how aggressive your type of cancer is when deciding how long is safe to wait.
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I am very happy with my new foob. I had a left NSM with immediate reconstruction with implant and Dermal matrix. I was HUGE before my surgery (36DDD). my new foob seems to be a large C/small D. I don't know for sure as I still have one huge boob. I had neoadjuvant chemo and I am in Rads right now. I saw my PS today for a follow up and he said I will be able to get my new and improved right boob (reduction/lift) as soon as my rads are over. I am so excited!
I feel very fortunate to have professionals that are up to date on new technologies. I wish everyone was as lucky as me. I strongly urge anyone who is not satisfied with the answers they get from any of their doctors to get additional opinions.0 -
I forgot to add that I wanted to be smaller. I was never happy with my chest and now I am bonding quite nicely with my foob.
Smiles!0 -
Thought I'd post an update for women who are going to be going through this procedure. I had my unilateral (right) NSM on June 28, 2010, so I am over 18 months out. I was 51 years old.
I had DCIS, grade 3 and opted for this after lumpectomy which took almost half my breast. I was barely an A to begin with. After my surgeon said margins were not good, I decided on the NSM instead of radiation.
I had my surgery at Mayo in Scottsdale, AZ. They used Alloderm on the right breast. The left breast was augmented to match the right breast and the symmetry is excellent. My plastic surgeon said she could probably manage to make me a large B or small C given that my natural breasts were fairly small. My cup size ended up D which was a surprise because my breasts do not look or feel that size and I fairly small at 34 around. I thought I was at most a small C.
I am very happy with the choice I made for surgery vs radiation. I am also very, very pleased that my nipple was spared and I only needed one procedure. I had no complications at all.
I have no feeling in my right nipple or the inch or so around the nipple. I had reduced sensation in my left nipple on the natural breast that was augmented but this has now returned. My nipples seem to stay erect all the time. I had silicon implants (Natrelle) and they feel colder than my normal body temperature.
Cosmetically, I think I look better and for the first time in my life I can buy a bra that actually fits my breasts. I would never have opted for augmentation for the sake of having larger breasts and I would go back to pre-DCIS days in a flash. Noone wants to deal with this for sure.
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Lisette123 - I had both a 8mm ILC (Grade 1/Stage 1b) and a 5mm intraductal cancer. I was told that lobular CA grows slowly, but can actually turn out to be larger than measured by imaging due to its web-like structure. I also had to wait for consults, but I was assured that it was perfectly OK to take my time to gather the information I needed to make the right choice for me. My NS BMX was about 2-1/2 months after diagnosis. dancetrancer is probably right in that your tumor stage and grade are important. 6mm is a small tumor, but that's not the only factor that comes into play. My cancers were considered small and "well behaved" so my docs did not express any urgency for surgery.
I'm glad you decided to listen to your gut and are at least finding out your options from surgeons who offer all the options. If you decide or find out you have to go a more traditional route at least you won't always wonder "what if....." Rats! If the docs weren't actually gone you could ask to be on a cancellation list.
Honestly, it's all been doable, but none of it has been fun and the period between diagnosis and surgery was pretty stressful. One day and one step at a time......
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When I got home last night I had my insurance approval in the mail. Having surgery March 26, NSSM BMX with alloderm and TE's. One less thing to worry about now.
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geegster ... Isn't that elephantitius of the newly constructed 'boob' or 'foob' as you call it ... a kick. At first I was like "Whoa Nellie ... whatever did my PS think he was doing giving me such a huge boob. Perhaps my belly fat really was already responding like belly fat in my breast region and inflating and bloating. Whatever would I do with this large breast that was easily triple the sie of my right breast?" The nurse told me all about swelling and the PA at follow-ups would say "this swelling will go down, then, the swelling is going down nicely, etc. and how complimentary the two girls looked." That helped a lot :-) I am 4 1/2 weeks post-surgery and they already look waaay similar with a little added and rounded with my new one. I also know my PS did give me a little more knowing that my chemo and radiation follows this and predates the 'end' (for lack of a better word) when he will remove the extra circle of skin, close that down to a line scar, and add fat or remove any necrosis (if it occurs) and then do whatever needs to be done on my right girlie girl to achieve symmetry. In the meantime ... I am actually more than ready for a BRA ... even though I'm a pretty little gal.
:-)
Diana
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I am 3 weeks post op bilateral skin/nipple sparing mastectomies with immediate silicone implants/ reconstruction with alloderm. Incisions submammary and right axilla for sentinel nodes. I did have the radiation injection immediately preop to locate nodes. Dx right breast grade 3 comedo, multifocal DCIS ER/PR neg, sentinel node bx neg. Pre op A/A- cup with dense breast tissue and fibrocystic dz bilateral. Am 49, 5'8" 130#. I am in the military as a flier and did not want radiation (am fair skinned, small frame with hx heart dz in my family). I also did not want Tamoxifen due side effects and my military status. So, chose bilateral for peace of mind and so I will not ever (hopefully..) have to deal with breast cancer again. I did not want bigger breasts. I wanted to look as close to my pre-op self as possible. I am probaby an A+ to a small B post op but all my clothes still fit.... I have a wonderful husband and surgical team and virtually no pain post op. I have
absolutely no regrets about my decision. What I am experiencing though and want others input on is skin sensitivity. How long does that last? On the DCIS (right) side I am pretty numb laterally up to
the nipple with touchy skin sensations on top and middle - light clothing drives me crazy. A tighter fitting soft undershirt is better. That is the side of the axillary incision so more nerves were cut there - so I expect more numbness on that side. The surg onc tells me the numbness should subside but it will take months. Plastics says 6 months to a year. On the opposite (non-DCIS / non sentinal node bx) side I am having nipple sensation but it is more of a pins and needles kind of sensation that I am hoping is a good sign that my sensation may untimely wake up - I had very sensitive nipples preop. I am also having numbness on the left side too but it is far less than the right side. I have light touch sensitivity on both sides so I am doing some desensitization exercises - light touch, tapping, cotton... So, my questions... Does the numbness ever go away? Has anyone experienced
these neuropathic type sensations? That tingly electrical feeling? I strongly believe this will get
better in time... Again I am only 3 weeks out. I started taking B complex as I know it supports the
nervous system. Just interested in others' experiences with this.0 -
Speech, tell me about your sensation now on the mastectomy side. Where was your incision? Did you have sentinel node bx?
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Lisette, I think second opinion is a good idea if you want to save your nipples but since your cancer is invasive I must agree with your surgeon - you are pushing the envelope on time. You are having nodes taken right? I had my surgery for non-invasive DCIS
month post diagnosis and I thought I was pushing it as a non-invasive patient. In terms of nipple necrosis post op I was not told of that risk and did not see it as a strong risk in the literature I searched. The California cancer institute is an excellent on-line resource to search your unique situation. Try to be relatively sure you feel you are a good candidate for NSM before you keep up the wait. More and more women come into the the NSM fold every year. My surg was three weeks ago and I am very pleased with my decision to spare with BMX. Every woman is different in terms of their path - that's for sure. Good luck with your decision. </p>0 -
Becky- It's hard but look at the skin sensitivity as a good sign that nerves that have been bruised or damaged are regenerating. I know it can be maddening, though! Everyone heals at a different rate so it's hard to predict when this will go away or when sensation will return. For me, the skin sensitivity got better after about 5-6 months. With the exception of about a silver dollar shape around the nipples I have most of my sensation back across the breast.
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speech- With the exception of where we had our NS (though they were both in AZ), and the fact that I had BMX, our stories all almost identical! 51 years old, DCIS, grade 3, Alloderm, silicone, etc. Like you, I would have never considered augmentation, and am still getting used to the feeling of implants, but I feel very lucky to have been able to have NS. I did want to mention, if the cold feeling of the implants ever bothers you, I had that too and fat grafting eliminated it completely. Now they're as warm as the rest of me!
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Kate... thank you so much! That is so encouraging! I just experienced the cold thing for the first time. I am relatively thin especially my upper body. What does the fat grafting entail?
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The doc would not do HER2/neu testing on my DCIS... Maybe because I had BMX?
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Becky- Fat grafting is relatively new and different PS's have different techniques for using it to improve your recon. All of it entails having liposuction done (typically to the lower half of the body where most of us carry excess weight) and having the fat injected into the breast area. Some doctors place the fat over existing implants, some can create entire breasts using just fat (no implants) and some, like mine, swap out the implants for smaller ones and then inject the fat into the space left behind. When space is created first there seems to be a higher rate of fat retention afterwards. When the fat is just placed over the implants the retention rate is about 50%. The way I had it done it is about 85%. You don't have to be extremely overweight to have this done. I am 5'4" and weighed about 120 lbs at the time of my surgery. My PS swapped out my 375 implants for 225's and then did fat over the entire breast. The great thing about the fat is it looks and feels exactly like breast tissue so PS's can use it to cover the implant, improve the slope so there's no "step off" and fill in the cleavage area to look more natural. You can find out more information about it, if you're interested, on the thread "Has anyone had micro fat grafting?"-
http://community.breastcancer.org/forum/44/topic/747737?page=1
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Thanks Kate!
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