Nipple Sparing Mastectomy with immediate reconstruction
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lcm123 - Sorry you have to join the BC club
. I have to echo what Kate wrote by suggesting that you take a breath and do some research before making your decisions. There is no rush, you have time to do some research and ask questions. You posted that you know "absolute zero" about this - did you mean the whole thing or just the reconstruction part? For whatever reasons you've already chosen mastectomy over lumpectomy so it sounds like you've got some history leading up to this (family history, personal history of biopsies, etc). I'm definitely not challenging that - I chose a bilateral mastectomy over a unilateral and I've never regretted my decision. I assume your surgeon went over all your options regarding the advantages and disadvantages of mastectomy vs lumpectomy for DCIS. However, it might feel right now like the mastectomy is the biggest hurdle here; in reality, the mastectomy will be over in a relative flash but you'll be dealing with your reconstruction much more intensely and living with your choice for the rest of your life.
So, my suggestions (since you asked
) would be:Make sure that your BS has lots of experience in nipple-sparing surgery. As Kate suggested, ask about incisions and whether the tissue behind the nipple(s) will be examined separately by the pathologist. Sometimes a preliminary look is done while you're in surgery to determine if it's safe to save the nipple. If the preliminary look is good, but something suspicious is found in the final pathology the nipple might still have to be removed after the fact.
If you are even considering any type of autologous (flap) reconstruction, please be sure your PS is a vascular microsurgeon. If he/she is not then you will NOT be offered all of the flap options that are available! If you know for sure that is not the route you will take this is not as critical. As Kate mentioned, there are also newer options that would likely require some travel as not offered many places yet. Specifically, micro-fat grafting (different than the fat grafting you might read about for filling in ripples, etc).
A typical scenario for nipple sparing surgery is that the BS performs the mastectomy, then steps out and the PS starts in immediately. So it's important that your BS and PS work well together as a team. As you already have a PS lined up I assume this is already the case for you. I was actually pretty surprised that I didn't even see my BS while in the hospital after mastectomy...once the PS took over, he literally took over! I didn't see the BS until several months later.
Best wishes and I hope all goes well. Please keep us posted on your progess!!!
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2FriedEggs- I have read a lot of women post about a reaction to steri strips and/or bandages myself included. It's too bad they can't do a test strip on us a few weeks before surgery to see if we have an allergic reaction before placing them on fresh incisions.
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Kate Isn't that the truth. I should have known, as even bandaids cause me problems but only sometimes!
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Kate33: thanks so much for your posts and the research references!
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Fearless- You're welcome!
One thing I've learned through all this is to question everything! I used to believe that you could just trust that your doctor would always do what is best for you, would always be up on the latest research and techniques and that I could just put myself in their hands. Unfortunately, that isn't always true. For those of you just starting out I would encourage you to get 2nd and 3rd opinions from different BS's and PS's. Ask them how many NS they have done and how many were successful. Ask to see photos. Check them out online and check patient reviews. Question the procedure from start to finish. Ask them why they are doing things a certain way and if there is a better way. Ask what you can do as a patient to ensure a successful surgery. Research yourself- find out all the different ways to reconstruct and which one is best for you. Also educate yourself on LE and how to prevent it. Insist on these precautions. This is your body, your life. I have seen people put more thought and research into their next car than their mx or recon. Just like you can't always trust the car dealer to steer you towards the best car for you you also can't trust the PS who only does implants to tell you about DIEP or other flap surgeries. Or the one that does DIEP to tell you about fat grafting. My first surgeon never even told me NS existed. I found out through research. We, as women, need to share as much information as possible!
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Kate33-Well said, I agree with you totally! Thanks for the info.
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kate33: very empowering to read your words. this is just the opposite of what my doctors here say to me. they would dread this mentality spreading across the ocean to Europe. not that they don't want to do a good job; they just want to set the agenda and do it on their own terms.
here is another study on NS I found:
Recent advances in the surgical care of breast cancer patients, Alessandra Mascaro, Massimo Farina, Raffaella Gigli, Carlo E Vitelli and Lucio Fortunato, Department of Surgery, Senology Unit, San
Giovanni-Addolorata Hospital, Via Amba Aradam, 9, 00187 Rome, Italy World Journal of Surgical Oncology
2010, 8:5, doi:10.1186/1477-7819-8-5"...Surgical technique is extremely important. It is now well understood that the use of periareolar incisions
should be abandoned, as it negatively affects the vascular supply of the nipple-areola complex, and that either a radial or a lateral incision seem to be more effective in this regard."Please note that I was not able to have a nipple-sparing technique on my cancer side, NOT because of any cancer, but because my breast surgeon removed a known-to-be BENIGN lump in addition to my cancer tumor during the lumpectomy. He wanted to remove the benign lump at the same time as the cancerous tumor, just in case. He made a special incision around one side of my areola to access this biopsied-but-benign lump. After the lumpectomy, my nipple-areola complex NAC looked quite crumpled and deformed. And then they found multifocal ILC and so I was headed for BMX. But by then the plastic surgeon thought that my blood supply to the NAC had been compromised so it wouldn't be worth the effort to try to save it, as they were able to do on the other side. So now I have mismatched NACs, one my own, which had been lifted and is doing fine, and one reconstructed from excess breast tissue and still healing. I guess hindsight is 20:20, but if my BS hadn't extracted the benign lump, I could have had both my NACs today. It is something I hope he and patients will be aware of and think about carefully in the future if they face a similar situation.
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Fearless- Thank you for sharing that study. I hadn't seen that one. It just confirms something I've questioned all along. If you're trying to maintain blood supply to an already fragile nipple why would any near by incision be a good idea? Even with these studies doctors are still doing the periareolar incisions. I guarantee they're being done right now as I type this. I will never understand why doctors are not required to be up on the latest research. And it can be impossible as a patient to know which ones are and which ones aren't. I'm sorry for what happened to you. What bothers me the most is that your doctor said, "It wasn't worth the effort to save it". I wish they would realize it is worth the effort if it makes us feel more whole afterwards- physically and emotionally.
Someone posted a link to a blog and one of the entries was titled "The Things I Wish I Were Told When I Was Diagnosed With Cancer" .
http://www.huffingtonpost.com/jeff-tomczek/cancer-advice_b_1628266.html
There's some good info but what stood out was this paragraph-
Your doctors and nurses will become your source of comfort. You will feel safe with them. If you do not feel safe with them you need to change your care provider immediately. There is no time to waste. This shouldn't be a game played on anyone's terms but yours. When you find the right caretakers you will know immediately. Do not let insurance, money or red tape prevent you from getting the treatment you deserve. This is your only shot. There is always a way. Find those hands that you trust your life in and willingly give it to them. They will quickly bring you a sense of calm. They will spend time answering your questions. There will be no stupid questions to them. They won't do anything besides make you feel like you are the most important life that exists. They will never make you feel like they don't have things in control. They will be honest and accessible at all times. They might even become your friends. You might celebrate with them over drinks months or years after they have cured you. They deserve your gratitude, respect and appreciation daily. If you get upset at them during treatment know that they'll forgive you. They get that you're going through something they can't imagine- but they understand better than anyone. They see it every day and they choose to be there because they want to make the worst experience of your life more tolerable.This is what we should expect, demand and deserve.
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Kate33: Wow! I was blown away by that paragraph about what to expect from doctors and nurses. That is in the ideal world, right? Yes, I guess I have experienced small bits of that from time to time, but it has been more the exception than the rule for me. Thanks for your perspective on NS and periareolar incisions -- that really helps me feel better about it to know that at least someone understands.
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Fearlessfoot - That paragraph blew me away as well and it made me feel so thankful for my good fortune in landing the great team of doctors that I have. I totally lucked out that my angel of a local breast surgeon (who ultimately did not do my surgery) referred me to my BS, PS, MO, and even my new internist and there's not a bad apple in the bunch. The nurses and the rest of the hospital staff where my surgeries were done were even amazing. I've just been pinching myself. I had a very bad "fall through the cracks" experience a few years back and I went into automatic fight mode when I got my BC diagnosis. I promised myself I would not let it happen to me again on this journey. My current healthcare team has not let me down even once. There are great docs out there and I'm sorry you haven't been able to experience that.0
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Hi all! I just want to run a quick question by everyone...
I'm 3 weeks out of NS BMX, direct to implant, and although I realize it's normal for the implants to be pretty/VERY high still, did anyone experience a sort of deflated look of the nipple/areola area so that the nipple is slightly folded over onto the skin below it? My PS has maintained that as the implant drops the nipple will fill in, but yesterday he did say if it didn't unfold itself it would be an easy fix. My chest is still very tight, and my arms still have a pretty limited range of motion. I'm wondering if I can loosen up my arms and connected muscles, if the implants will drop and nipples re-inflate. Does anyone have experience with this?
Kate - great paragraph. As a former social worker,through this journey I keep thinking that the newly diagnosed should automatically be assigned a "case manager" to navigate this confusing process. Some of us are natural researchers, but others are not.
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LastMango - Regarding your last comment - Most health systems and hospitals now have breast cancer navigation services. If you weren't assigned a navigator I would ask if one is available to you. My BS had a nurse navigator present for part of my first appointment with her right after diagnosis. I received a huge well-organized binder of resource materials, places to file reports, blank pages for quesions and notes, etc. Navigation teams are an invaluable resource to answer questions about support groups, social services, nutrition, exercise, doctor referrals.....on and on. My nurse navigator was able to help me with questions about my Oncotype DX test, deciphering my path reports, prescription for post mastectomy bras, hotel accomodations for my husband because I traveled for my surgery. Made everything so easy. When I didn't know which way to turn or who to ask, she was always there with the answer...pretty amazing!
Typically the BS cores out the nipple from behind for special pathology testing. So there is not much tissue behind to support. It seems like it might depend on the size and configuration and natural projection of the nipple to know if the implant will provide enough pressure from behind to give it some oomph. The one on my non-cancer side fared pretty well, but definitely more lifeless than before MX. The cancer side was cored out pretty aggressively and was sort of flopped over during the whole healing process. I dealt with necrosis on that side and lost a good part of the nipple so I don't know how it would have fared otherwise.
Good luck, I hope your healing phase goes well!
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Hi Ladies,
It's been months since I've been on this board. Things have gone very well for me since my exchange in January. My new boobs look good except for the radiated side (left) has developed an indent/crease that is 3 inches long on the upper portion that is quite visible when I move my arm back and forth in front of my or reach for things. I'm feeling pretty self conscious about it as it shows in the low cut tops I like to wear now :-) My PS has suggested that he can eliminate this crease by replacing my implants with a slightly larger pair and doing some fat grafting to fill in the indent. I was ready to do this and even scheduled the surgery but now I am having second thoughts and I need advice. My bmx, te's and exchange all went well (aside from pain from the bmx and the expansions). I am always at risk for infection since I had radiation on my left breast 8 years with my 1st BC. Do I have this surgery for cosmetic reasons and risk infection or just leave it and deal with it? It's a very hard decision. A lot of my friends and family are telling me to leave well enough alone and don't take a risk losing the implants to infection. It doesn't help that a friend of mine got an infection a week after her exchange and had to have them both taken out. Thanks for any advice or consideration.
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Jaysmommy- Does the dent show all the time or just when you're moving your arm? If it's just when you're moving then it's just your pec muscles flexing. They kind of move them to a new spot so when you use your pecs you do get that strange contortion to the breast. Some PT can help loosen up the pecs some but it's just something we have to deal with. If it's all the time it's probably rippling. If you ever hold up an implant there are ripples down the side and that's what you're seeing under your skin. I had this really bad and will tell you that the fat grafting eliminated it all together but I also went with a smaller implant at the same time. I'm never sure why doctors want to put a bigger implant in as it seems like this would just make the skin tighter around the implant and show even more ripples and make the pec muscle tighter, too. I do want to tell you, though, there's some research out there that says fat grafting can actually improve radiated skin. Some doctors are creating breasts using pure fat grafting and this is a great option for someone who has had skin damage due to rads. I know it's a hard choice to decide on a revision and there's no guarantees at the end. I do believe we deserve to be happy with our results but I would definitely make sure you know what all the risks are beforehand.
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I also had a dent in the upper area that you could see even if I was sitting still. I would not wear anything other than a Tshirt or high collar shirt because it bothered me very much. Everyone else said that they couldnt tell but I think they were being kind. My doctor did fat grafting in the area to fill it in 4 weeks ago and it looks great I am sitting at work in a tank top and feel and look great. I did not have radiation which is a factor for you which you must consider the risks but I will say the fat grafting was well worth it.
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Thank you Kate and Amom438. I appreciate your responses. Amom, I had kind of decided to ask my PS to just do the fat grafting until today when I went to Victoria Secret to buy another bra and as I was looking in the mirror I see that my left radiated breast is also hanging lower than my right breast. Now I know that my PS is going to want to do a revision. It doesn't show, because I wear nice underwire bras, but I know that it's like that and I guess my question to my PS will be, is the left side going to continue to slip? He used alloderm during my initial bmx. I am not scared of having another surgery as I recovered pretty easily from the exchange. I am just so scared of getting an infection. I know my risk is smaller this time as my PS said I won't need drains this time but it's still a difficult decision. I don't know what I am going to do. My pre-op appointment is July 24th. I have to decide by then.
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Jaysmommy- Ask your PS if you have a higher risk of infection because of the alloderm. I was told this by a PS I consulted with in Beverly Hills. He said until the alloderm fully integrates with your own tissue it has a lot of nooks and crannies (like an English muffin). He said every time we have surgery we open ourselves up for bacteria to get in there and it's difficult to treat with antibiotics. I haven't confirmed this with any other PS so would be curious what another would say.
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Kate,
My PS has never told me that alloderm is associated with a higher risk of infection however, my friend who contracted an infection after her exchange did mention that she had more alloderm added at the exchange surgery. Interesting. I had alloderm used during my BMX. I don't think it was used again during my exchange. How long does it take for the alloderm to fully integrate with your own tissue?
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Jaysmommy- The PS who did my exchange did use a ton of alloderm during exchange all around the implant so maybe that is why the PS I consulted with was concerned. I'm not sure about the length of time for integration. This PS was talking about removing the alloderm if I did revision and that was a year after exchange. I was thinking it would have been integrated by then or how would he remove it? Not really sure, though. Not trying to talk you out of revision just thought it might be something you would want to ask about.
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Jaysmommy and Kate33: My PS specifically said Alloderm and other acellular dermal matrices are associated with higher infection rates. That is why he only does total sub-muscular placements of implants (using the serrata anterior muscle and the fascia of the rectus adominus for the underpart where Alloderm is typically used). This is an "old-fashioned" but tried-and-true method that allows the muscular blood supply to be right against the breast skin, thus allowing effective delivery of antiobiotics, and quicker integration of vascularization.
This is not appropriate for every MX case, however, and it is limited to only smaller implants (B cup maximum) and depends on how pliable your muscles are to the cutting and stretching involved. Mine has worked great so far with very little pain and very quick healing (-- except for reconstructed nipple on cancer side which had some necrosis and has been taking a long time to resolve... but almost there I hope!).
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Hello ladies,
I was diagnosed with multifocal IDC in my left breast about a week ago and have since seen a surgeon who has recommended a skin sparing mastectomy. I did a lot of reading while waiting for my biopsy results and I knew that even if it were DCIS, because it was multifocal (4x4x4cm area) and my breasts were small, a mastectomy was in my future. When I read about nipple-sparing mastectomies I was feeling positive... until I read that the cancerous tissue should be >3-4cm away from the nipple. One of my palpable masses is immediately superior to my nipple, maybe about 1cm away from the middle of my nipple. My heart sank when I read that. I still hoped that the surgeon would surprise me by saying that recent advances have shown that they would be able to spare my nipple. After she said this wasn't the case I practically begged, asking her to at least try. "Why can't you check to see if there are any cancerous cells on the nipple at the time of the surgery?" I asked. I could have sworn I read that was the procedure at some point, but she says that they can't do that (so not sure if it's possible in other hospitals or if I just wished I had read that). I left the appointment very upset because I really like my nipples and from what I can tell, achieving some sort of symmetry with that on my right breast will be close to impossible (my nipples stick out a lot and are almost always "on"). I have since spoken with my family doctor who assures me this surgeon is well respected and have learned that she does perform nipple-sparing procedures so I can only assume that she would try to save mine if she thought she could safely do so. But I still had that lingering doubt and in order to have peace of mind before having my mastectomy I thought of consulting with others for a second opinion. Going to another surgeon will apparently cost me money so I thought I'd just ask you all first....
Has anyone heard of successful nipple sparing mastectomy on someone with a cancerous mass immediately superior to the nipple (i.e., about 1cm away)?
I suspect that I have to face the music and realize I need to say bye to my nipple, but it will be easier heading into that surgery if I hear from more than 1 person that the nipple must go.
And sorry if this has already been covered earlier or in a different thread. I am so tired from reading about this and my reconstructions options... I thought it might be easier to ask for help on this one.
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Sneaky-Sorry you have to be here, and making decisions and trying to save at least some part of your breast is only natural. I had a Nipple sparing bilateral Mastectomy with 1-step to implants done, you will see my stat. at the bottom of my post. My cancer tumor was in the right breast only and it was about 2.5 to 3 inches from the nipple so my oncoplastic surgeon said I could save my nipples and I was really gald for that. In your case, I see that your tumor is around 1cm away from your nipple and your BS (Breast surgeon) thinks that its NOT a good idea to leave it. I've heard of surgeons who could check the nipples at the time of the surgery while you're on the table to see if there's any cancerous cells there and if they are found then they remove the nipples and if not then they leave it. I believe different surgeons have different practices, see even if your surgeon could check for cancerous cells in your nipples while you're on the operating table, its actually done like this: Your surgeon will take tissues in your nipple and pass it on to a pathologist waiting in the operating room, the pathologist will take that and go to the lab and check under the microscope for cancer cells, then he will come back into the operaating room and tell your surgeon the results. Your surgeon will then decide if to take your nipples or not based on the preliminary result of the pathologist. Now here's the catch and that's probabily why your surgeon won't do it, sometimes when the preliminary result show no cancer, the final result could show cancer. The only way they will know 100% is after the tissues are taken out and they do a detailed analysis of your entire breast including nipples. So since your cancer is so close to the nipple, I'm thinking that your surgeon don't want to take the chance of that happening.
I'm sorry, I know cancer is a crap shot and that's my take on your situation, if you still want to get a secondopinion then go for it. Weight your options and don't just look for an opinion that you want to hear rather make your decision base on your survival! Nipple or no nipple, you're still you and don't let cancer define who you are! Hope that helps!
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Sneaky- I second Soyandpepper's comments and will add my own experience. I had right NS mx and have now been advised to have the nipple removed because final pathology found LCIS in nipple tissue. I also had ILC in that breast and it is believed that my type of LCIS is actually a precursor lesion. So I am considering having to go back for ANOTHER surgery. Like you, I really like my nipples and shared and understand your dismay and disappointment at the prospect of losing a nipple. However, now that i am a couple months out from the mastectomy I feel a little different about my nipple. Since I am totally numb in that breast it no longer feels like me anyway. In other words, regardless of what it looks like, with the feeling gone the nipple feels gone anyway. Plastic surgery can do amazing things to create a realistic look, but the sensation will not be replaced. Get that second opinion if you need to, but in the long run it may be easier just to let it go. Sorry. Not trying to be negative, just realistic. Best wishes.
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Sneakychiquita, I am so sorry NSM is not an option for you, but i do feel your breast surgeon has your very best interest in mind. With a multifocal diagnosis and its proximity being too close to the nipple areola complex, the oncological safety would be compromised. All the literature I read prior to my risk reduction surgery clearly demonstrates this criteria of exclusion. Discuss this further with the PS in terms of what can be done for optimal results, keeping the opposite nipple and reconstructing the cancerous side vs. bilateral removals with bilateral reconstructions. I have a friend who kept her one nipple and had reconstruction on the opposite with amazing results. Best wishes to you.
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Sneakychiquita- I would normally recommend you always get a second opinion but in this case I do believe your BS has your best interests in mind. While it's true that they will core out some of the cells within the nipple during MX and test them during surgery they cannot remove all the cells because it would cause necrosis of the nipple. I do believe there will come a day when surgeons will be more adept at this procedure and the criteria will be widened. Already I've seen them reduce the parameters from 4 cm. to 2. My own BS said this will continue to get even smaller but we're just not there yet. They usually will not consider it if your cancer is multicentric but that is changing as well. (It was shown on my path report after MX that my DCIS was in fact multicentric but other cancers hadn't been detected. Had they known they probably wouldn't have considered me a good candidate. I'm proof that some of these criteria should be expanded.) I know it's frustrating to be on the cusp of something and not be able to take advantage but I do think with your cancer so close it would be taking a big risk. That being said I would definitely ask your BS and PS about everything that can be done to get you the best possible aesthetic result. Is it possible to remove the nipple but leave the areolas? I don't know enough about this but it seems it would be the same as leaving skin behind. From photos I've seen it seems easy to recreate the nipple itself (and we all lose sensation anyway as dobie mentioned) but sometimes it can be challenging to match the areola itself. Might be a "consolation prize" if your BS will agree. I hope everything works out for you.
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Hi, I had a skin sparing mastectomy but they had to remove my nipple due to having cancer very close under it. I too was gutted to lose it but as dobie says it is actually more about losing the sensations that I am upset about. I had a lift and reduction on the non-cancerous side where I kept the nipple/areola but still lost all feeling. I have since had a nipple reconstruction which looks pretty good and I'm sure will look even more realistic once the colour is tattooed on.
Everything about having cancer sucks, but at the end of the day it's about saving your life first and aesthetics second.0 -
Hi, I just wanted to chime in and say that I was in the same boat as you, I was offered a NSM at the onset but then was later told by my BS that she felt I should remove the nipple because of the proximity of my tumor to the nipple. We discussed 2 options, 1) she would leave the nipple on during surgery and send some of the tissue back to pathology, if it was then found cancerous, she would have to go back (in a 2nd surgery) and take the nipple or 2) she would take the nipple but leave the areolas.
I ended up having a BMX, removed both nipples and kept both areolas. It's been difficult seeing the actual result since it is still healing. I am having some cosmetic issues on my left side...in the breast, not areola.
I have a question about immediate implant reconstruction, which I also had (no tissue expanders)---will radiation jeapardize this at all and cause the implant to fail? My PS eluded to this in our last conversation (after surgery!) and I'm just hoping its a small risk. Do tissue expanders pose the same risk?0 -
I just wanted to add---I am happy with my decision to leave the areolas---so far so good! I am having concerns with a ridge line at the bottom of my left breast (not sure what it is) that the PS has basically said he will need to fix at some point. That's when we got into a conversation about the potential effects of radiation on the reconstructed breast with implant....so now I am more worried about that!
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sduch1-What area are you doing radiation on? The breast itself or on your lymph nodes? I had immediate implant reconstruction as well with a NSBMX and also a SNB at the same time, I asked my doc about if I had to do radiation after the surgery and he said only on the lymph nodes if they came back positive for cancer and the radiation on the nodes will not harm the implants if done correctly. Also he mentioned that he would hold off on immediate to implants as an option for me, if I had to do radiation on the breast since it WILL change the outcome of my implants.
I'm sorry if I scared you but that's what I know about radiation, the common practice for surgeons is not to put implants in if they know before hand that you have to do radiation on your breast instead they will put in tissue expanders and then do the exchange to implants like 6-9 months after radiation so your skin could heal from it first. Some of them wait upto a year, my surgeon does that. Find out from your doctor about the radiation and your implants so your know what your outcome will be. If they avioding the question, then you know something is up!
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Hi all,
Thank you so much for your advice and words of support. While still not happy about it I'm starting to get used to the idea of losing the nipple, but from what I've seen of reconstructions I'm pretty sure it wouldn't match my surviving nipple (14 mm projection!) so i've ordered a kit for a custom nipple prosthetic. Never thought the day would come along when I shop for fake nipples. I somewhat wish my family physician had referred me to a different GS who is known to be a little more personable, but many people have vouched that my current GS is quite competent so I'll stick with her to keep things moving forward.
I'll ask about sparing the areola, but I know that my GS was planning on cutting around the areola to remove my breast tissue. I haven't met the PS yet. Apparently I offended the most readily available PS by mentioning that I was going to see another PS as well to compare the type of reconstruction offered (they both do lots of reconstructions but they don't offer the same procedures). The PS office I offended now says that they'll CONSIDER seeing me at a later date because they have other patients who are eager to get in with her. Sigh....
Thanks again for everything. This discussion board helps tremendously and I'll soon be asking questions about other topics.
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