Nipple Sparing Mastectomy with immediate reconstruction
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Hi Everyone! Wanted everyone to know i am finally healing. my dr removed the scab on one of my breasts and i got an expansion. Also my daughters 1st birthday party went great! Hope alls well with everyone!
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alypatphi - did the PS wait to give you your first fill until you had a scab removed? trying to figure out when i will get my first... makes sense to do that... thanks!~
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ugh ! hoping i get my first fill this wednesday - three weeks post op!
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TinaT and anyone else on this thread who has had complications, could you help out a newbie who posted in the One Step w/Alloderm thread and has had no responses?. She is inquiring on behalf of her 25 y/o daughter who just underwent a BMX....NAC sparing......Here is what she wrote....
momof3brca wrote:
After having one step reconstruction, did any of you ladies have dark purple areas that looks like bruising on your breast? My daughter had her surgery last Tuesday. She had a bilateral mastectomy and one step reconstruction with silicone implants. She was dx with breast cancer 2/11, finished 4 rounds A/C and 4 Taxotere. She is 25 yrs old. That brusing was there right after surgery.... today we saw the PS and she is concerned about those purple areas.....afraid that the skin/partial nipple tissue may not survive. She had us put an antibiotic salve on it...... Would appreciate any words of advice. Thanks so much!
Mom of 3 BRCA
Thanks dear sisters!!!
Deborah
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whippetmom- Thanks! I'll head on over there!
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whippetmom: I answered there as well. Dark, bruised-looking area right out of surgery - I hope she's not having a problem with the blue dye like I did
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Tina- I didn't even think about the blue dye reaction when I posted. I forgot you went through that. I wonder how rare that is? Did your surgeon say?
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I just had to share... I happened to stumble upon a show on our cable channel last weekend. It was a healthcare show and the subject was "The latest developments in Breast Cancer Treatment".
First off they didn't even talk about "treatment"..they were really discussing "reconstruction options" only. Whatever....anyway...I watched the entire show and all they talked about was lumpectomy/radiation, or mastectomy w/DIEP, Tram Flap, or silicone/saline implants. No talk of gummies, no talk of fat grafting, and NO TALK OF NIPPLE SPARING!!! I was shocked! This was supposed to be the "latest developments". So very sad that they don't even MENTION it. Because women are usually rushed through the whole process upon diagnosis...there isn't alot of time for research... I think it should be required to be presented as a choice (if you are eligible) just like they present lumpectomy/raditation, mastectomy.....they should be required to present the different TYPES of mastectomy available. I don't know how many times I've heard .. "if I had known that was a possibility..."
Frustrating.
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Kate33: My BS has been doing breast surgery for a long time and has done lots of NS MX. She told me that her patients occasionally have some temporary inflammation from the dye, but I'm the first and only of hers to actually develop necrosis
from the dye. She still doesn't think it was simple dye reaction, but rather that the compromised skin from nipple sparing just couldn't handle the extra assault.There are reports in the literature of tissue necrosis from methylene blue so it does happen. Still, most surgeons now prefer it over the previously-used blue dye (can't remember the name) which carried higher risk for more life-threatening anaphylactic reactions.
SusansGarden: There have been so many comments on my thread and others on the picture forum - "I wish I'd known...", "I found out after my surgery....", "You're so lucky you got to keep your nipples, I didn't know...." So sad! I can only imagine how I'd be feeling right now if I found out I could have saved my nipples after they'd already been removed.
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Susans Garden - very interesting. I think I was just lucky, because I didn't know about nipple/sparing - m y surgeon suggested it. I WAS VERY LUCKY!!
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I didn't know about nipple sparing until my PS suggested it. I told my onc surgeon about the suggestion, but he was skeptical of the cancer side because he had to clear the margins. Luckily, the prophy side looks normal, but the cancer side nipple could not be saved and the areola had to be moved higher to clear the margins. At least one side looks normal!
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i had arranged for NSS with my BS (who has now moved her practice to be closer to family and i am totally ok with that - sad, huh?) and on the day of surgery she began talking about a regular skin saving - i had to remind her that we had agreed to NSS - scary, huh?
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vhshea ~ whoa! That is scary!
Gosh now that you mention it, Slinky & vmudrow, I can't remember if I heard about NSM here or from my BS? I'm pretty sure I saw this thread and brought it up to her now that I think of it...because she initially was talking about lumpectomy. But not everybody jumps on BCO the day after they get diagnosed!
TinaT ~ how did your skin hold up in the long run? Is everything healed now?
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SusansGarden: You may have already been there, but I do have pix on the picture forum. I lost about 1/3-1/2 of the nipple and some of the adjacent skin. It's still kind of an unhappy deep red color and hard as a rock, but it's fading and softening somewhat. My PS says the pothole scar will be a distant memory once does his magic. Haven't decided what to do about the nipples yet; I plan to give it some time to soften up and "normalize" so we can figure out how to balance them out. If that doesn't happen by my exchange then I guess I'm looking at another surgery down the road.0
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tina - when you lost part of the nipple, how did your PS address that? i think i will lose part of the nipple, and a few places in the skin outside the areola (one spot is a round, potmarked area about 1/3 inch in diameter that just continues to ooze - sorry - only good word, and the other is along my incision under the fold that just won't heal). the nipple area is looking better on part - crusting over but another part is just hard black scab (still not oozing so that sounds good)
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vhshea: Your situation does sound similar to mine, except my surgery, lymph node, and drain incisions healed up in a snap. I went to the picture forum because I couldn't remember if you were there....under another name perhaps?
The PS and his PA kept optimistically telling me that it sometimes takes a while for the tissue underneath to recover, but at some point it was obvious that there wasn't pink skin under there. The PS debrided the nipple and adjacent skin several times and one time the side of the nipple was just gone (not a happy day). There was no point in continuing to wait as nothing was happening under the yucky scab. It's actually finally stopped sloughing skin after 4 months and it's now quite a bit smaller than it was. I've decided to wait for the scarred area to soften up to decide how to deal with it...plump up this one or take some off the other so I have a somewhat matched set. It actually healed much better than I thought it would, just looks shorter and smaller in diameter than the other.
The deep round scar which was a pretty deep hole for a while apparently is an "easy fix". Had that area stitched together once after he cut some clean edges, but only parts of it healed. During my exchange surgery the PS plans to do a semi-circular excision of the pothole following the outline of what's left of the areola and he says it will just be a fine little line that will fade. The rest of the whole area is still pretty dark, but has started to fade so hopefully with time won't look too bad.
You're only 3 weeks out, right? I would still be optimistic that there's good skin under there. It hasn't been very long! Keeping my fingers and toes crossed for you!!!
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tina - you are so my guardian angel on all of this with your sharing of your experience. i have a PS appt in about 40 minutes.. i will ask him for some type of timeline for the first fill and when i can begin wearing bras, and just cool my jets on wanting my nipple to be 'ready' -- four months! wow. but that helps, knowing that i am rushing it... i did see your pics on the forum and remember the 'hole' - that looks exactly like what i've got - so weird that so much of the skin makes it then a small area is just not there... surreal, you know? when i was changing the gauze last night, a little bit of blood showed up on the gauze from the middle of the nipple. now while i am usually not a big fan of blood (especially my own!) i took that as a sign that the nipple itself has blood flow and that seems like a good thing...
i will post when i return from my PS -- i so love my PS that i was totally blown away when i visited the oncologist for the first time on monday and found him to be even better then the PS! my BS i can totally live without (she moved out of state anyway) but my oncologist and PS are the best! since i need to see them for the foreseeable future, i guess it all worked out!
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back from the PS already! first fill will be in 3-4 weeks but i am cleared for bras so i can even out my boobage... will begin back to work tomorrow or tuesday - should know later today.
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vhshea: It took 4 months to heal up the area under the necrosis. And, mine was a weird case because all my problems were related to the area stained by the blue dye, it wasn't the "normal" tissue recovery from nipple sparing surgery. The whole nipple was initially scabbed over, but the healthy part that recovered nicely showed up much sooner than 4 months.
Sounds like you got a good report today - yay!
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Every time I hear another woman say no one told her about NS before her MX it kills me!!!! Especially when I know she probably would have been a good candidate. For any of you who have their photos posted on the picture forum you know what I'm talking about. Post after post of women who see your photos and say, "No one ever told me about this!" How devastating to know you were unnecessarily disfigured because your BS was untrained, uninformed or lazy. It's not like NS is something new! So how do we get the word out? I have submitted show requests to Dr. Oz and other talk shows saying "PLEASE INFORM WOMEN ABOUT THIS!" Any other ideas?
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I had this procedure this past March 27, 2011. Immediate reconstruction with tissue expanders.
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Kate33: That's a great idea to alert shows like Dr. Oz. I wonder about mass market magazines like "People"? Also, suggesting they feature NSM somehow during "Pink October".
One other thing. When I had my yearly physical with my regular doctor, I asked her to inform future patients newly diagnosed with BC that NSM may possibly be an option for them.
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This got me thinking. Does BCO's home page of info (NOT the forum) even mention NSM? ...I just looked and all I could find was skin sparing. I couldn't find any mention of or info on Nipple Sparing?
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Jen1furry: Hi and welcome! My bilateral nipple sparing surgery was February 16, 2011 and I also have 600cc tissue expanders currently filled to 400cc.
Keep us posted on your progress. There are also threads here for tissue expanders, implant sizing, and exchange surgery.
Again, welcome!
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Kate33, you are so right!! It is crazy that the word is not out about NSS being an option. I felt like I won the lottery when I found out I was a candidate. I realize it's not for every case, but it should at least be a viable discussion. I am going to end up losing one nip due to close margins but at least I know that I tried. And I'll have other side still intact. We really do need to advocate on this one!!
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I checked BCO's home page and there is very limited information about NS. And what there is seems to be advising against it. I think their information is outdated and needs to be revised. Also, under questions to ask your surgeon regarding mastectomy they should list- Am I a good candidate for a nipple sparing mastectomy and are you trained in this procedure? Here is what they had listed under types of mastectomy regarding NS-
Subcutaneous ("nipple-sparing") mastectomyDuring subcutaneous ("nipple-sparing") mastectomy, all of the breast tissue is removed, but the nipple is left alone. Subcutaneous mastectomy is performed less often than simple or total mastectomy because more breast tissue is left behind afterwards that could later develop cancer. Some physicians have also reported that breast reconstruction after subcutaneous mastectomy can result in distortion and possibly numbness of the nipple. Because subcutaneous mastectomy is still an area of controversy among some physicians, your doctor may recommend simple or total mastectomy instead.0 -
I just contacted BCO and asked them to review current research and possibly update the site. I told them I felt the little information that was offered seemed to be slanted against NS. But current research shows it is just as safe as SS and has the same rate of recurrence. I also asked if they could post information about micro fat grafting. Even though this type of reconstruction is fairly new I think women should be made aware of all of their choices so they can make an informed decision. Maybe if everyone wrote in and suggested the same they would change this. Just go to the home page, scroll down to the bottom and click on the "Contact Us" button.
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