Nipple Sparing Mastectomy with immediate reconstruction
Comments
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angellunch - Unfortunately, many of the nerves are usually severed during mastectomy surgery. This is typically the case whether the nipples are spared or not. Most of us tend to have sensation around the periphery of the breast skin but numbness in the central breast skin/nipple area. Sensation can return, but it typically does not feel the same as before surgery. Some women have posted positive reports, but most say that it is more of a sensation of clothing touching the skin and some report that it is actually uncomfortable. I think I read at some point that the incision location can come into play, but I can't remember if that was proven or just speculation.
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TinaT - thank you for your response. I feel sad that I lost all feelings. When I do my TE fills, the PS just thrusts the needles through my skin into the TE port and I don't feel a thing. Also, after mx, the PS poked 1/2 inch of needle straight into my nipples to check if it's alive and I didn't feel it. It's so weird seeing this and feeling foreign to my breast. I guess I'll get used to it.
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angellunch - I was fully aware prior to surgery that this would be the case, but it's still very difficult to accept. I've only had a few real meltdowns since diagnosis. I came out of BMX with 350cc in my TEs so was actually pleasantly surprised when I saw myself the morning after surgery....looked like a slightly smaller and bruised version of myself, not nearly as bad as I was anticipating. However, the first time I was able to take a shower the reality of it all came crashing down. Not feeling the water on my chest was the oddest thing, I just came completely unglued. It's something you get used to with time, but it still makes me quite sad
. I am over a year post MX and I've just recently started getting a little sensation on one side. However, it's actually uncomfortable and odd so I'm not getting too excited about it quite yet. Still, it's something! 0 -
TinaT and Angellunch, one of the hardest things for me to accept with all the physical changes is the lack of sensation in my breasts. One side I had a reduction and lift which meant moving the nipple and areola and the nipple was removed on the cancer side. I have just had a new nipple made (never thought I would be putting that in a sentence!) but now have no feeling in either nipple or in the reconstructed breast. It makes me very sad and find it hard to connect to my reconstituted body. All in good time I guess, sigh.
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So glad this issue is being addressed. This too has been the most difficult part for me and source of most of my saddness I was aware that it would happen and it is one very strong reason I opted to have a UMX. It certainly isn't worth risking ones life over so understand opting for BMX but have a hard time letting go of both breasts without at least a try to keep one. It is not in my nature to be a worrier so this works for me, for now. I second that sigh, SuzyBlue- sighhh.
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angellunch- I'm sorry your doctors didn't prepare you for the loss of sensation. Unfortunately, that seems to be the case for most of us. There is a possibility, though, that you'll get some sensation back though I don't think any of us will ever think of our breasts as an errogenous zone anymore.
When I was doing my fills I couldn't feel anything with the first ones but towards the end it started to hurt. Never thought I'd be happy about feeling pain! I've gotten back quite a lot of sensation in the breast but nothing in the nipples at all. It did take a long time for it to come back though. Does anyone watch "The Conversation" on Lifetime? The host, Amanda de Cadenet, was interviewing Christina Applegate who has had BC/MX. Amanda asked in recon could make you just as you were before mx. Christina said it's just never the same and that she feels a real disconnect with that part of her body. This is the first time I've seen anyone address this when it comes to BC. There is a definite sense of loss that comes with BC more than any other kind of cancer.
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TinaT, SuzyBlue and Kate33 - my doctors did tell me about the loss of sensation. I just wasn't prepared to experience it. It was quite shocking and mentally I'm constantly worried about bumping or sleeping on my breast and nipple because I'm so afraid of cutting the blood circulation. Lol. I know i may be obsessive compulsive but I was so afraid of necrosis - my nipple was black and crusty. Now, it's back to normal and I'm thankful that all cancer is removed and my TE exchange will be in 3 months!!! Yayyyyyy. Can we sleep on our stomach after exchange?
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I know what you mean, I am nervous about doing anything that might misshape or squash the life out of my new nipple. It still looks pretty weird to me. I'm getting married next weekend and really wanted to have two nipples for the big day but now I'm wondering if I should have waited until afterward so I had one less thing to worry about!
Kate, you are right, my breasts are no longer the erogenous zone they were and that is a real physical and emotional loss to me. It's like having to re-programme my body to find other areas that offer enough sensation to compensate. Probably too much information but I would like to think we can talk about anything here, and I'm sure this is an issue other women can relate to.0 -
Hi ladies,
I don't get on here much - it's been 2 years since PBMX, but yes I am sleeping on my stomach after exchange - soooo nice as I was a stomach sleeper. And I do have sensation in my nipples, but it is weird, feels like pressure when they are touched and I think I would rather not feel anything as it is an uncomfortable feeling
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SuzyBlue-CONGRATS!!!! Your big day is only a week away. Wow! You must be super excited. I'm so happy for you.
Vmudrow- what a relief to know that I can sleep on my stomach again.0 -
SuzyBlue- Not TMI at all. I love that we can share anything because I think it always helps to know that someone else out there is dealing with the same issues.
Congratulations and best wishes on your upcoming wedding!!!0 -
Kate33: yes - I'm going to have Dr Aronowitz do my reconstruction on 7/9. he works with a breast surgeon I was very impressed with Dr Ellenhorn (formerly at CIty of Hope - now Cedars). I met with a number of people and felt most comfortable with the 2 of them. I also really like that Dr A feels that I'm a good candidate for a nipple sparing one step. He offered to do the stem cell on top of the implants, but I think I will wait until further out. The BMX and implants seem like enough surgery at one time.
It seems like all the good plastic surgeons in LA are less than insurance friendly (or just refuse to deal with it at all). I'm definitely struggling with the cost, but I feel like it is worth it to have it done well the first time. However, to clarify, I was just diagnosed in May and that is one reason I do not want the stem cells at this point. On the off chance any bad cells are left behind, I don't want to be inadvertantly feeding them. perhaps the dr is out of clinical trials on this procedure? I know has offerred that to other newly diagnosed patients...
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SuzyBlue - Congrats on the upcoming marriage - All the best to you!
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Kate, you are right, my breasts are no longer the erogenous zone they were and that is a real physical and emotional loss to me. It's like having to re-programme my body to find other areas that offer enough sensation to compensate. Probably too much information but I would like to think we can talk about anything here, and I'm sure this is an issue other women can relate to.
I don't know if anyone wants to hear a male perspective on this. When the various recon options for my wife were being discussed with the PS, he kept hammering that lat flap would make a breast that "feels more real". From my point of view, I just kept thinking "so what? If my wife can't feel me touching there, my hands aren't going there - at least not as much as before". So while you are trying to find other areas to compensate, maybe your partner is too.
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LAjen- That's great you are going with Dr A. I've heard wonderful things about him. I did hear that if you're 5 years out from dx, and are selected to participate in his clinical trial, everything is covered. Otherwise, it's billed as normal. I haven't confirmed that, though.
Merovingian- We appreciate hearing from the male perspective! It's definitely a big adjustment for both partners. I think sometimes we forget that our significant others suffer a loss as well. For those of us in long term relationships we've developed a "dance" in our intimacy and now it's been altered. We have to find a new beat, and some new steps, but we can still dance.0 -
suzyblue congrats on your upcoming Wedding.
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Kate33 and merovingian - Breast cancer can surely be a test for relationships. I've read so many stories on these boards of marriages and engagements breaking under the strain. Likely something's been going on under the surface long before BC came along. Those of us who are fortunate enough to have a partner who is in it for the long haul hopefully manage to deal with this like other obstacles - with respect and sensitivity on both sides. You both made great points about BC affecting the whole family. It gets better as time passes, but I sometimes find myself wrapped up in my own thoughts and have to snap myself out of it as I'm hearing my husband talk about a problem at work, a health problem of his own, etc. What the what - it's not all about ME?!?!?!?!?
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Thank you for your good wishes guys, the countdown has begun!
My partner/soon to be Hubby, is afraid of hurting me physically even though I have told him I would soon let him know! Also as you say Kate, you do get comfortable in knowing what and where pleases the other and now we have to refigure it out together. I think it is ok to be sad about it, and might I be so bold to say I think the biggest loss is most definitely mine.0 -
Well, I had to visit my plastic surgeon (PS) on an urgent basis on Monday because I thought my right nipple might be infected. This was my cancer breast and although the nipple was clear of cancer, my earlier lumpectomy included an incision around part of the areola which compromised the blood supply. Therefore the PS didn't think it was worth trying to save that nipple. So he reconstructed the nipple areola complex NAC from excess breast skin. The areola seemed fine but the nipple always at risk because the nipple turned black. PS said it could just be the outer epidermus layer and underneath it might be okay; we would just have to wait. However, on Monday (5 weeks post-BMX), he confirmed that it was necrosis (skin dead but it was not infected) and so he actually had to remove it (cut it off with scissors -- couldn't feel a thing, didn't look) and he put a bandage back on over the whole NAC. Bummer, now I'll not have a right nipple until sometime in the fall, when he will have to take skin from somewhere on me (ugh, ouch!) to try to build/attach a new one. But it will just be local anesthetics in his office I think. And then they will put a tatoo color on the NAC to try to match my left real one.
Does anyone have any comments/opinions about where to get the skin for a new nipple? My PS has mentioned inner thigh -- but mine are quite hairy! Do they remove hair follicles or how to avoid hairy nipple? Someone else mentioned using part of the (gasp! omigosh!) inner vulva labia!! Does anyone have experience, reliable info, articles, etc. about this?!!! Or perhaps it was dealt with earlier in this thread and you could provide a page number or date. Thanks for any help.
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Fearlessfoot - So sorry
you couldn't save that nipple. It's very disappointing when you're watching and hoping and babying it and it doesn't work. I lost a good portion of the nipple on my cancer side, but the other nipple survived intact. It hasn't happened yet, but the plan is to take a wedge graft from the good side to graft into the other. I've been dragging my feet waiting to see about any sensation returning, which my BS said could take 2-3 years.....but I don't think I'm going to wait that long.Sorry again - I hope that area heals up uneventfully!
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Fearlessfoot- So sorry to hear about your infection. I know how disappointing it must be. I did a search and found this thread. It has a link to someone called Vinnie Meyers who seems to be the one a lot of women go to for tats. If the link doesn't work for you the title of the thread is "Surgical nipples or 3d tattoo nips?" Hope it helps.
http://community.breastcancer.org/forum/44/topic/788504?page=1#post_3090408
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Kate33: thank you for your post! it's not an infection, it's necrosis, which I think might medically be different. however, when my PS changed the bandage today, I could see that the nipple was not completely gone. it's still there, but smaller. i had thought i lost the whole nipple. what he cut off was just the outerlayer. now he says that the epithemial layer needs to grow back in about 2 weeks. if it doesn't work out, i don't know if i will try for another one or not. i just want to get back to a normal life where i don't have bandages on my breasts. i want to be able to try on bras without worrying about freaking out the fitting lady and i want to be able to go swimming with my son. not too much to ask, is it? i know in the bigger scheme of things it is NBD (no big deal)!
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Fearlessfoot I thought you were lost I hadn't seen you on the may forum since the day you posted you had surgery and would get back with more detail. Anyway I also had necrosis too and the ps had to cut some skin and a little chunk of nipple area. I've had to put cream on everyday and bandages too.The purple /black color was a little scary for a while but it is looking much better, pinker; just looks like a little bite out of it lol not too bad though. I'm tired of bandaging too. Hope otherwise you are doing ok.
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Since we seem to have some members on here dealing with necrosis issues I decided to try and do some research to see what if anything I could find about it-
http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Retrieve&list_uids=2748739&dopt=abstractplus
http://www.ncbi.nlm.nih.gov/pubmed/22056645
I found a clinical trial about to start at the University of British Columbia where they want to test nitroglycerin ointment to see if it prevents mx flap necrosis. If successful, maybe they will look at this to prevent nipple necrosis as well.
http://www.ncbi.nlm.nih.gov/pubmed/22056645
The Canadian Journal of Plastic Surgery reported that the placement of the incision had a big effect on nipple necrosis. In periareolar incisions the rate was 38.1% vs 6.3% in lateral or inframammary. Other factors were rads or large breast size.
http://www.pulsus.com/journals/abstract.jsp?jnlKy=6&atlKy=10391&isuKy=1005&isArt=t&HCtype=Consumer
If anyone has not yet had their NSM I would question your surgeon as to the location of the incisions.
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Kate33 - Thanks for your continued championship for nipple sparing surgery! You always come through with a word of encouragement or valuable information. It is greatly appreciated...
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TinaT- Aw, thanks so much!
Fearlessfoot- If you go to the top of the page and click on Breastcancer.org it will take you to the home page. From there click on Blog and scroll down. There is a blog by Vinnie Meyers (the tattoo expert) with some before and afters on the 3D tattoos.
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I am having an appointment with a plastic surgeon next week to discuss reconstruction. The week after is a mastectomy. I know absolute zero about this. I was just told two hours ago that I have DCIS in my left breast, so off it comes. I am so thankful it isn't worse. Any suggestions on what to say to or ask the plastic surgeon? Thanks, lcm
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lcm123- The most important thing I would ask both the breast surgeon and the plastic surgeon is how many NSM have they done? The biggest factor in the success of the surgery is a surgeon's level of experience. I also would ask, based on the article I posted above, where he will be placing the incision. Unless you are large breasted the least invasive and disfiguring place for the incision is in the inframammary fold (the fold beneath the breast) and according to the article there is less chance of nipple necrosis but not all surgeons will do it this way so don't assume.
One thing I would encourage you to do is research as much as possible all of your options. A PS (plastic surgeon) will usually promote the type of reconstruction they are most comfortable with. Most will not tell you what all of your options are. I wouldn't rush into anything and with DCIS you have the luxury of time since it is not invasive. I did not have my mastectomy until 3 months after diagnosis. It took me that long to get an appointment with a breast surgeon with the most experience in NS. She was well worth the wait. I think 2 weeks from diagnosis to mastectomy is way too short. I know your instinct is to just get it out as quickly as possible but they should not be rushing you into this so quickly. I'm sure most of us wouldn't buy a house in 2 weeks and you're going to live with this longer than a 30 year mortgage. This is a huge decision and you will have to live with the results forever. Please make sure you are physically and emotionally ready to make your choices. If you're not ready tell your surgeon that and reschedule the mastectomy.
The American Cancer Society has some great information on the different types of breast reconstruction (though it doesn't include microfat grafting which is a great choice) and at the end it has a list of questions to ask your plastic surgeon. I would print it out and take it with you as I think it's a great reference.
http://www.cancer.org/acs/groups/cid/documents/webcontent/002992-pdf.pdf
I'm sorry- I know you must be so overwhelmed right now. This is a place you never imagined you would be in. The beginning is the hardest as you put your plan in place and have to learn this new language of breast cancer. Just know, though, you've found an amazing place for information and support. BCO was such a lifeline for me as I was going through everything and it can be for you, too. I told someone else that BC can seem like a long dark tunnel but all the women on here are like flashlights along the way. (((hugs))) to you.
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Kate- that was a great answer and a very comprehensive link. I wish I had seen that before my surgery. Very informative with a lot of info I have learned on these threads.
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Those were good links, thank you Kate. For those just looking into the NSmx... Fortunately my incisions were great and just the kind the articles recommended to lessen your chances of necrosis. Unfortunately I developed an allergy/dermatitis type thing that developed into deep blisters with in a couple days after surgery. We believe they were from the steri-strip adhesive and/or the bandage adhesive. I started to get alittle itchy the day after surgery but like a dummy I assumed it was from "healing".It got progressively worse the next day. Since I was all bandaged and hadn't yet seen anything, I had no idea what was going on. I went to the ps for my post op and she of course removed anything with adhesive and prescribed cremes etc. It improved very quickly from there however there was a small area that had formed a couple of deep blisters right on the incision line that developed necrosis. So I guess the moral to my story is, your doctors can do everything just the way they are supposed to, but if you have had any skin allergies or skin sensitivities in the past warn them so they can take precautions with the sutures or the adhesives. If you haven't had any in the past and you notice an extreme itch/burn under your bandage, even if it is a day or two prior to your post-op checkup, call and have it looked at-don't make any dumb assumptions like me that itch means healing.
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