Nipple Sparing Mastectomy with immediate reconstruction
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I just had NS PBM on June 7. So far so good...I just got up the nerve today to remove the gauze under the sports bra...was not nearly as bad as I thought it would look. The only incision was around the areola and that was it. And of course these drains that I will hopefully get out on June 14. I can't wait to get these out and get my first fill. I have been an a cup all my life, and am excited to end up being a full b or small c.
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Dobie, this is the way it was explained to me. There are no lobules in the nipples, so there can be no LCIS in there. What happens during mastectomy is when the nipple is cored out, the contents can "collapse" onto the removed breast tissue. It's in that tissue where LCIS is found. Because the inside of the nipple collapsed there, the pathologist may not be able to know what exactly is breast and what exactly is nipple tissue.
I had extensive LCIS and kept the nipples. The above explanation better be correct.
edit to add: congrats on a successful surgery robin!
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Ditnhm- I was told initially that they would be doing the frozen section during the surgery, so I am assumming that the final report came out differently. But I didn't ask specifically when seeing PS post surgery. I certainly don't want to take any unnecessary chances but need to understand this better.
Crescent - you bring up aninteresting point. I appreciate that. Looks like I need to review nipple anatomy and ask a few more questions.
PS wants to Wait About 6 months for healing before she would attempt nipple removal so I have time for fact gathering and soul searching.
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dobie - Sorry for your confusing news.....what a disappointment to have to even think about removing the nipple, especially if it survived the surgery well. I lost about half of one nipple to necrosis after my NSM. It was pretty ugly for a few months, dealing with an open wound, etc. I was on pins and needles thinking each time I went to my PS that he was just going to say, "Let's just cut our losses here and remove the whole thing."
I had ILC, DCIS, additional area of lobular neoplasia, and multiple areas ADH all in one breast (other totally clear), but none of it was right near the nipple. I'd definitely get clarification, as Crescent suggested. But, if my BS (who has done many NSMX) suggested removing the nipple after the fact I would likely make the decision to do that. Sorry......
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Tina T- yes I am inclined to go with recommendation for removal but generally they leave LCIS alone and just monitor when they find it. LCIS is a marker for risk contralaterally as well but they are not recommending removal of the other breast! I am on Arimidix to reduce risk in my other breast. It may be that they recommend nipple removal because the LCIS in the rest of my rt breast was associated with ILC but I just need to understand the overall rationale here. My hunch is that because they still do not have a lot of data about safety with this particular finding, they are playing it safe. Not that that's a bad thing but...just seeing if I can find a loophole, I guess.
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dobie- Is it possible for your BS to do an MRI to check things before removing the nipple? I know my BS said if I had a recurrence in the nipple I would immediately feel a tiny hard bump like a teeny pebble on the surface. She told me I would be able to catch it immediately. I didn't have your situation but guess I'm trying to find you a loophole, too.
So sorry you're having to deal with this extra complication. Hope everything can be worked out. 0 -
I know this might not apply to the nipple discussion above, but before my NSBMX and SNB, I asked my surgeon about if he'll get back the result of my SNB while I'n on the operating table so as to know if he needs to remove more nodes if cancer was found in the same operation. His answer to me was no, he doesn't feel comfortable with testing a frozen section of it while on the operating table. He said it cannot be 100% accurate cause sometimes the preliminary frozen test can come back negative but then the actual lab result from the SNB later can show something else.
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Soyaandpepper- What your BS told you is accurate and is usually the standard of care. Most will receive their pathology reports, including results of the SNB, about 2 weeks after MX. (Though it varies depending on how busy the lab is at that facility.)
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And yet, my surgeon, a breast cancer survivor herself, also did the snb and waited for the pathology which revealed positive nodes which meant an axilla excision (not total) also during my surgery.
It is always good to wait for final pathology but a positive pathology node result on the table allows for surgery to take place then and not later.0 -
Kate33- I will have an MRi in September as part of the overall plan for monitoring my left breast and right breast will be done as well. So I will have that information ahead of time. I will discuss it with my team to see if they think it is at all reasonable to keep nipple if every thing looks ok.
Dtlnhm- that is my understanding as well about how frozen sections in the OR vs final pathology works. The final report is what sticks and determines treatment course.0 -
Dobie, I have a dear friend, BRCA1 + who had a bilateral preventative NSM and early DCIS was found within her nipple biopsy path report. She had to remove the nipple and chose to remove both of them. Since she had expanders, the breast surgeon removed both nipples 12 weeks after the mastectomy during her exchange surgery. She did very well and had a great outcome. Just wanted to share this info., and although this very rare, it happens and you're not alone.
FYI, frozen sections are NOT reliable and the final path report is just that, final, thorough and complete. Many oncological surgeons do not even perform them during surgery for the nipple for that simple valid reason.
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Hello, I just wanted to report in that I had BMX 16May with immediate one-step Mentor silicon implants totally sub-muscular, and had left side NS on noncancer breast and reconstructed NAC on the right side. We had been planning to do NS on both sides since there was very little risk of the ILC cancer on the nipples. However, my earlier lumpectomy had two incision sites and one was near the nipple and had caused it to buckle in and look weird. The day before surgery, my PS told me that he and my BS had discussed my case and thought it wouldn't be worth trying to save the NAC on my right side. My BS had cut around the areola during the lumpectomy and the blood supply had been compromised. So they recommended doing a reconstruction of the right NAC and grafting from excess skin from my left breast. On the left side, he used a pedicle technique to move the NAC up to its higher location.
Now this is 3 weeks post-operation and my saved nipple is doing fine (but the areola is a bit misshapen, not completely circular from stretching -- can be easily corrected says my PS). My reconstructed nipple is still under a bandage and the top layer turned black. The PS says it may just be the top layer of skin in necrosis-y but we won't know until it comes off.
I have not rubbed anything on wounds yet per PS instructions. Also per PS orders, I am still wearing 24/7 a tight sports bra Triumph Triaction highimpact, plus a tight velcro band over top chest, under armpits and around back to keep the puppies down. Next meeting 18June when he says he will show me how to massage the scars/wounds.
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Fearlessfoo-I see that you're from Switzerland and your PS ordered you to wear a bra 24/7 and a tight velcro band, and you had a 1-step to implant. I had NSBMX with 1-step to implants 5 weeks ago, going 6 weeks and I was also told to wear a bra 24/7, but my doc didn't really specify brand except he told me a surgerical bra that opened to the front for easy movement. Now he told me to wear any kinda of bra but just NO underwires. He told me to keep it on for 24/7 for at least 2 more weeks. I was wondering if your doc used alloderm with your implants and if he didn't then did he used something else(like Tiloop), the reason I asked that is because I'm from the Caribbean and my doc is an oncoplastic breast surgeon who practiced in the UK for 15 years and he does not use alloderm, he uses something called Tiloop mesh bra which does the same thing as alloderm except its not from human tissue or pig tissue. I was really hoping to find someone else who's doc used Tiloop as well. Since you're from Europe and Tiloop is more used in that part of the world (manufactured in Germany), maybe we could compare notes. How long you still have to wear the bra for 24/7?
To all the other lovely ladies who used alloderm or other form to do 1-step to implants reconstruction, how was your experience when it comes to wearing a bra? For how long after surgery? 24/7/ Please share!
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I had immediate implant placed with use of acellular dermis matrix, didn't say what brand. I woke up with my breast foam taped for support. No bra or cami. PS said bra or no bra, whatever I like. Removed tape a week post surgery. I have not worn a bra hardly at all because it is more comfortable without. I am small breasted so that probably makes a difference. I just don't need the support.
BTW- talked with PS again this week. She consulted with a few others who felt keeping my nipple inspite of the LCIS is reasonable. The tumor board officially advised the nipple come off because this was a recurrent ILC. But apparently there was not a consensus of opinion by a long shot. I will wait for MRI and Oncotype to finally decide what feels right for me. But there certainly is no rush and I'm not inclined to rush back into the OR.0 -
dobie-acellular dermis matrix is the same human tissue, most likely is the alloderm brand. I've read from other ladies who did alloderm and I got the feeling that those who did it with that do not have to wear a bra. Must feel good not to have to wear a bra during healing! I'm a 34C now, was a 34B (not too much of a difference). What 's your size? Did you stay around the same size too?
Its good that you could have time to research and do MRI and Oncotype to decide what you want to do with your nipple on the other side. Hope whatever you decide will give you a peace of mind.
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My PS used FlexHD which is another brand of acellular dermis matrix, like Alloderm. I am large...my new foob is a large C/small D, from it's original DDD/F size. I went smaller on purpose. Never liked have honkin' huge boobs~call my Crazy...hee!
My PS told me No Underwires. And to wear a bra all the time, but I don't know for how long. My surgery was in December. I still wear my surgery bra (I have two) at night, just because it is more comfortable and my pec muscle is still sore...esp. since I went back to work. Since I don't mind wearing it, I never bothered to ask whether or not I still need to wear it.
I am getting my matchy-matchy surgery in Sept. so my original boob still flops all around. Once I have two perkies, I might change my mind about the bra wearing...we'll see.
Smiles!
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dobie - Fingers crossed for you that the nipple can stay!
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soyaandpepper I had NSBMX to implants with Alloderm last November. My PS said to take off the tight surgical bra whenever I wanted to, which I did the second day post-surgery - and then went with just loose camis with pockets for drains. Before surgery I was a 34C, am pretty much the same size now. After the drains came out, I wore looser sports bras. I now wear sports bras most of the time, they're more comfortable to me - every once in awhile I put on an underwire but it's not as comfy.
I'm not sure if wearing a bra hinders or helps healing - and drop and fluff I feel would have happened anyway, regardless of support.
Hope that you are feeling well, and best wishes with your healing.
~ edited for grammatical error
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Soyandpepper - I was wearing a 36A before surgery and my poor departed right breast had shrunk after radiation 5 years ago. I have gained about 10 lbs since I have shopped for any bras so I suspect I was close to a B cup in my natural breast. Since I was doing a UMX I told PS I just wanted symmetry, and definitely not any smaller. She told me that when sizing me in OR, one size was a little small and the other a bit big so she went with the bit big. When I wear a bra it has been a Genie which do not have cup sizes so I am not sure what I am now but I am guessing B. My foob is fuller on top than my natural breast but other than that pretty symmetrical. Drop and fluff should help. Anyone know how long that takes?
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dobie - so glad you are doing well and hope you do get to keep your nipple areola :-)
My PS was a "no bra" kinda guy - lol. Absolutely no bra of any kind post-op. I am a 36 b/c but I think that this is his protocol. I recall when others were writing about their binders and bras and everything being an absolute necessity and I just replied that I had a top notch surgeon who knows his stuff and I was trusting him. He would allow me to run at my 5 weeks check-up but still said 'no bra' until 6 weeks ... and so I waited until 6 weeks to go for my first RUN because there was no way I was running without a bra. It was glorious. He does not like underwire bras either.
One of the PAs who took pics that last time I was there commented on my bra and wanted to know where I bought it, brand name, etc. so that she could recommend it to other patients.
So for what it's worth - I bought it at Kohls - It's a Bali - 3375 B 36 / 80. It also has these numbers on the band RN15763 85570810
The majority of the bra is 88% cotton. There are spandex, nylon, and polyster portions to different parts.
:-) Blessings on your continued recovery!
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dobie For me, drop and fluff was about 5 to 6 months - I've heard the same from others. I was surprised with the changes as the months went by. At first implants sat high, now they're about where the real girls were before.
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I also had a nipple sparing BMX. I'm just over a year out from my surgery and am pre-menaposal (age 26 at DX). I was wondering if anyone has experienced tender nipples/boobs? They feel so sensitive. I have been on Herceptin and Tamoxifen after my chemo finished. I'm supposed to go back to my surgeon after discussing this with my oncologist. Just curious if anyone else had the same problem.
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tkate26- Some women found that the nipples became very tender as some sensation was restored from nerves regenerating. That could be what is happening with you. As far as the breast tenderness did you do recon with implants? Some women find their breasts become tender from the weight of them and that a good supportive bra will help. Some even wear a sports bra at night to help. I also found what helps is doing some gentle stretching of the pecs as I felt like they were almost squeezing the breasts and causing them to be sore.
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I know it's a newer procedure, but has anyone had a nipple sparing procedure w/ immediate reconstruction followed by stem cell injections (not fat-grafting, the "suzanne sommers" procedure). Just curious as my ps does this at the same time as the as the MX. I'm not going to get it during the initial operation, but may consider further down the road.
Thanks in advance...
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Sorry,LAjen, I'm not familiar with the stem cell injection in conjunction with the MX. That's interesting, though. I'm new to all of this, but what do the stem cells address? Is it an immune-boost type procedure?
GAAAAHHHH! Drop and fluff may be 5-6 months? I'm on post-op day 5, and these gals are looking like some slightly off-base '80's shoulder pads they're so high. I'm not concerned, as I have faith that they won't look like this forever, and I'm just so happy that surgery is done. And, they could be supporting my earrings now for all I care, BUT I was thinking they might be a little closer to the right locale by 2 months. I know my BS does his "after" pics at about 6 weeks, so I was hopeful.
On a complete tangent, does anyone know what gets the surgeon's purple marker lines off your skin? I've tried soap and water, witch hazel, and hydrogen peroxide but nothing seems to be working. Also, has anyone noticed their chests are a sheen of oil? I probably use cotton pads with witch hazel to wipe it up three times a day, but it's keeps returning. I know my GP had said our body naturally raises its cholesterol after a surgery, so maybe it's the body's healing mechanism at work. Our bodies truly ARE amazing at taking care of themselves. xo
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Lastmango- I think I tried nail polish remover as well, but ultimately the marker lines had to just wear off with time. Did not have the issue of skin oil. Never heard of the stem cell thing either. Good luck with the Foobs! Hope they drop to where you like them.
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This time around the rubbing alcohol wipes got my purple marker off. I think they use different markers with each surgery to keep us guessing as to how to get it off.
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I have seen a video on the stem stell that Suzanne Summers did. It is very interesting and my understanding is that it is in trial right now.
alcohol has always gotten my markers off.
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LAJen- Is your doctor Dr. Joel Aronowitz? He is Suzanne Somer's PS. There is one member on here that had a revision with him. She had her implants swapped out for smaller ones and then had the space filled with fat grafting. He does do fat grafting but the difference is he's adding additional stem cells to the mix before grafting it into the breast. There are some theories that this causes more of the fat to be retained. There are also some other PS's in the LA area that follow Dr. Roger Khouri's protocol. Dr. Suzanne Trott comes to mind.
For those of you who already have implants what I liked about Dr. Aronowitz is he will remove the implants from under the pectoral muscle and then do fat grafting over the top of them. This enables you to do only one surgery. If you want to take out the implants all together (or are starting from no implants) it will take several surgeries. He is currently in clinical trials but will only take patients for that who are 5 years from dx. He will do the surgery on other patients but from what I heard from the member on here he isn't very insurance friendly so it's a huge cost out of pocket.
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Hello, I had unilateral nipple/skin sparing mx. I have no feelings on my nipple and skin after mx. Will I have any feelings in the future?
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