Nipple Sparing Mastectomy with immediate reconstruction
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ACinAZ thank you for sharing your experience, very good advice. I never would have thought of the imbalance.
Kate33 welcome back from vacation. I introduce mine as BlueCross and Blue Shield.
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PB22- LOL!!!
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PB22, Those are two very appropriate names...why didn't I think of that?
Speech, The gummies aren't FDA approved but they are indeed available to some plastic surgeons (probably private docs). The one guy that I met who is approved to used them seriously tried to "sell" me on them. It was pretty insane. If you do go with a ps who is part of the gummy trial, you have to agree to be a part of the trial studies (10 years maybe?). I just thought they were a bit too firm personally but you can find them out there...just have to want to be in a trial study and be comfortable with that particular ps. The ps that I know has them here in my area is this swanky, slick salesman type doctor who gave me the creeps. Thank god I did not go with his services!
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Wow. Thank you so much for sharing your experiences! I am trying to prepare myself for it not being "easy"...but it sure is nice to hear positive stories as well.. that make me hope that there is a possibility I will be able to add myself to that list!
I too, am preparing myself as much as I can by stretching, exercising, nutrition, etc before surgery in the hopes that it will ease my recovery. I hadn't thought of the "what if only ONE nipple can't be saved" scenario. Thank you for bringing that up... it might solidify my choice of TE. Plus the comment that TE might produce a more aesthetically pleasing result.
Also curious about the "gummy". Heard the PS I'm meeting Friday does them ~ must be participating in the trial. Not sure about wanting something that isn't fully tested yet? Hmmm.
I will be curious to hear the PS opinions on everything. See my first one this afternoon.... can't wait!
Thank you again for sharing. It's amazing how much it helps.
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Speech - Can you say what the cohesive gel implants are like? curious
Welcome AC and Susan. Susan, you are amidst a group of wise women here and I agree with what they are saying about NSM. Good luck in your decision.
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Kate, I also live in Mesa with my DH and 2 younger children (13 yr daughter, 16 yr son). We moved here in 2002 from MA where our older son (27) still lives with his family (3 yr old grandson). I need to update my profile. Life is good since the exchange. Felt like dancing driving home from work listening to the radio today. Thanks for welcoming me.
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Saw this and thought it might be pertinent to the recent questions in the thread. Here's the link:
http://www.empowher.com/breast-cancer/content/breast-reconstruction-it-may-be-better-wait
Breast Reconstruction - It May Be Better to Wait October 5, 2010 - 2:34pm
The right time to start breast reconstruction-at the same time as mastectomy surgery or later-is a question that's been debated for a long time. Years ago, when breast cancer death rates were higher and survival was the first and almost only focus, women who chose reconstruction most often waited. Recently, the pendulum has swung the other way, with women encouraged to consider starting the reconstruction process at the time of mastectomy. Two recent studies shed new light on decision making for women with breast cancer and their doctors.
An article in the September 2010 issue of the Archives of Surgery, a publication of the New England Surgical Society and the Pacific Coast Surgical Association, suggests that immediate breast reconstruction (IBR) patients who undergo post-surgery radiation treatment run a fairly high risk of complications resulting in breast implant removal. A team of ten doctors and scientists studied 302 breast cancer patients who had mastectomies. They found that of the 100 who had IBR, 44 percent developed complications which led to additional surgery and implant loss, while only 7 percent who did not have immediate reconstruction required further surgery.
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whitedove My PS had samples in her office so I could feel them. The implants themselves feel like plastic sacs with gel in them...very soft and supple.
Now that they are in me, my husband tells me that my breasts feel normal, but much larger :-)
My left breast, which was augmented, feels completely normal--very soft and jiggly. It jiggles when I jump and it hangs down low when I bend over. It acts like a normal breast. My right breast, with the Alloderm, is jiggly but not as jiggly as the left and it feels slightly more firm, but it is still squishy. When I bend over, the right breast does not hand down as low as the left. Massaging helps it to soften up.
I am very happy with my outcome. I had very small breasts prior to all of this. I could not even fill out an A cup bra halfway. I do like my new breasts.
I just bought some bras at Nordstrom (I highly recommend going there after you are healed and ready for bras) and I measured as a 34D in three different brands (Chantelle, Wacaol and Natori). That was a surprise because I have been wearing just a sports bra all this time and I thought I was going to be a large B or small C. So although I had a one step with Alloderm, my breasts are a little bigger than expected. I have my pictures posted on TimTam's sight under "speech529"
I also highly recommend that women check out the thread under Breast Reconstruction called "Bras 101: The Great Post-Exchange Debate". Very, very informative and has great questions to ask the PS about bras prior to surgery. I did not get much direction on bras from my PS.
Good wishes to all.
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SusansGarden- The anatomical gummies have actually been used for over 10 years in Europe and Canada. Unfortunately, the FDA is just getting around to approving them here.
ACinAZ- I have a 14 year old son so we're experiencing the "lovely" teen years together.
Tomorrow I'm off to the BS and PS for 6 month follow up. It's 4 hours round trip in the car but my DH (who's come to every single appointment with me) and I get some quality time together and a romantic lunch so, hey, who's complaining? :-)
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NSM is in the news! Must be because of BC Month. Hoping to spread the good word about NSM and to dispell the negativity out there about NSM, which I have found exists on other threads on BCO.
"We are doing nipple-sparing mastectomy on BRCA carriers," said Dr. Alice Chung.. The goal of nipple-sparing mastectomy, ..."it's becoming more common, but it's not something everyone does."
http://lubbockonline.com/local-news/2010-10-08/advances-offer-options-breast-cancer-surgery
"skin and nipple-sparing mastectomy," the surgeon makes an incision ..and removes the breast tissue.The result is "pretty remarkable," Ronaghan said.
More women at high risk for breast cancer are opting to have one or both healthy breasts removed. Mary Kraft loved her breasts, but she loved her life more.
At the Samaritan Breast Center at Samaritan North in Englewood, surgeons have begun performing nipple-sparing mastectomies on women..Perhaps a third of women with the disease are candidates.
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Hi Ladies-I'm getting behind on this thread.
SusansGarden-glad these wonderful women here are helping you. I told you this was the place to be! They walked me through everything with the NSM from start to finish and I just adore them all.
Speech-I think you look great. Perfect size for your frame and having the one step must have been so nice! I didn't get measures yet but went to Kohls and it was a nightmare trying to figure out what fit me. I think 34D's work or 36C's. I know they recommend a tighter band size but I always feel like it's digging in me. I don't know it's bad to wear a band that is bigger if it feels comfortable to you.
Kate33-Let us know how your appts go.
Hurleygirl-do you have any issues at all with rippling?
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whitedove - Thanks for the news articles - very informative and interesting.
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whitedove: I had my NSM done at Samaritan North in Englewood by Dr. Thomas Heck!!!!! Oct 7, 2010! And I'm BRCA2+! My BS took a frozen biopsy section from right under the nipple of the cancer side during surgery, and the lab said no cancer found, so I kept the nipple. I feel they did an excellent job! He was a bit leary at first, saying it was just now catching on in this area, but he said his own personal opinion on it was that over time, the long term studies would find it was just as safe as lumpectomy. Granted, I have no feeling in that nipple, but I do on the non-cancer side and am thrilled.0
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cc4npg-so happy for you! I think one of the reasons lumpectomy became common was because women wanted to have an option. They didn't want to just be told they had to remove their breast (s) and that was the only option. I hope NSM will become just as viable as an option for women. What has bothered me from the beginning of my journey was this-if I had to go through BC I wanted to know I would have EVERY option there was AVAILABLE to me so I could make the choice that was best for me. The saddest thing I think is having an option that you could choose but it not available to you by your particular Dr so you can't do it. Things need to change. BC is hard enough for women to have to deal with and we need choices that make the experience less traumatic and healthy as possible.
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Just met with the PS yesterday. All I can say is.... thank God for technology and advances in insurance laws. 10 years ago NSM wasn't available, and insurance wouldn't pay for most of this. REALLY liked the PS and his staff. So helpful, kind, informative. I had a HUGE list of questions...and after they were done with their initial informative "shpeel" they had answered every single one of them! Before I even had to ask! They showed me pics of NSM's that he had done. They said I am definitely a candidate (for once, having SMALL boobs pays off!!!) (I know there is a possibility they won't be able to save the nipple once they get in there) After hearing all the info I am going for the TE's ~ which he highly recommended over immediate implant. He uses alloderm to make the little "pocket" at the bottom to shape the breast. I also found out that after the exchange... he will "liposuction" a little fat from another area (abdomen) and put it in the upper slopes of my breasts above the implants to "shape" them into a more natural breast shape. He said sometimes this is done over 2 or 3 fairly simple procedures to obtain the desired shaping. So I get a "boob job" AND a little tummy lipo...and insurance pays for all of this!!!! Unbelievable!
I'm supposed to see another PS tomorrow (mainly because the one I saw yesterday is going on vacation until Nov 15th) and I didn't want to wait that long. But after talking to him, the fact that he has done several NSM's with my BS already, really like the staff..I'm wondering if I waiting for surgery a couple weeks later than what I had intened (beginning of Nov instead of end of Nov) will really make that much difference. Don't want to be "panicky" and make choices because of fear. Did many of you wait longer than one month after diagnosis?????
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Sweetie, I had what I would call a "corner" of the implant push out to make it look visable...it is on on one side at the bottom towards the middle on the inside area. Sounds confusing huh? LOL It was right above the incision basically (felt "crunchy")...BUT the good news, is that I have been doing almost an hour of massaging every night now of both the implants and the incision and this crease is getting much better. Other than that, I only feel ripples when I bend over and they are at the total bottom part right above the fold...where there isn't any muscle coverage so it makes sense. Luckily I don't have ripples that are noticeable...only in the fold area when bending over...
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Susansgarden- so happy for you. You are very fortunate to have found a good team of Dr's. That is totally half the battle right there. It sounds like they are very up on things. You are going to be so happy with the NSM and a little lipo too? you go girl! I think waiting a month or so after DX is normal. For me it was at least a month if not more. The two Dr's have to work together to do the surgery so sometimes it's a little harder to book the date. If you had a very aggressive tumor or cancer they would tell you and things would proceed differently so no need to worry. You seem to be in very good hands.
Hurleygirly- most of my ripples are on the corner of the right side. If I pull my arms back I don't see them at all. My physical therapist told me today to wear a support brace (like a bra without cups) to help pull my shoulders back and help with my posture. If I stand straight everything looks great. Still would like a little fat grafting but seriously have to research it more. It's weird how your ripples are on the bottom. Maybe it just has to do with where the skin is thinnest. My PS told me no massaging yet. Hmmm wonder why they always say different things. I am using something on the scar though. So it's good to massage the scar too?
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Sweetie, I did read that as long as your incisions are pretty healed that massaging is good for them. I bought this 100% cocoa butter stick (super cheap at any drugstore) and I baste myself when I get home from work every night! I am one greasy mess but it helps with the massaging and I feel that my incision area has softened up a bit allowing the implant to settle a bit more which is helping that funky edge or ripple/crease. I can send you a pict and show you what I mean when I get home from work. And..you know, although I am waiting for that one scar cream in the mail, I do think this cocoa butter works because I have a HORRIBLE disgusting habit of biting my cuticles (nasty I know) and usually my hands look gross and since I have been using the cocoa butter (it gets all over my hands), my hands look all healed now! It's kind of dangerous though because you put this stuff on and you smell like chocolate so then you wanna take a trip to the grocery store and load up on some cookies and chocolate bars! LOL My dog even wants a piece of me!
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Just has NSM BMX on Monday. My nipples are turning black along w/portions of my aerola complex. In fact on my right side, there is a little bit of this black skin peeling, Thank God I can't feel it. Does this mean they are dying? Is there anything I can do to help at this point? Your insight would be greatly appreciated!0
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mom38yi-I had some skin on the nipple that turned black and peeled. I also had a black scab over the nipple. Several of the other girls on here had the same thing and their nipple was fine. In my case I lost the tip of it. It still looks ok. The best thing to do is to not touch it all and give it time. It can take several weeks for things to heal up properly. Try to worry, it will likely be alright.
Hurleygirl- I think your right. My physical therapist said massaging if very good for the scar tissue. My PS said cocoa butter with vitiamin E. What other type of cream did you order? I hear bio oil is good too. Your too funny, chocolate and cookies, why'd you have to say that, now I want some!
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Dear Mom38y.o.
My goodness, the things that surgeons forget to tell us! No, you are likely just scabbing over. Soon after the scab heals, it will fall away to reveal fresh baby new skin. I was not told about the scabbing either! Just let it fall away on its own. I think it was Kate33 who said it was kind of like a baby's belly button. Perfect comparison .I came HERE and found out about this common occurrence. If you scroll back on the threads, you will see many people who went through the same dilemma.
Best of luck and congratulations on being able to be a candidate for NSM!
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You guys are awesome.Thanks!
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mom38yo
I had the same thing on my unimx. Once it heals, the skin below is soft and lovely. Toward the end of the healing process, my scab was getting caught on my bra, peeling back a little and bleeding. I covered it with a sterile bandage. That helped alot for the next 3 days and then voila! All healed!
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Sweetie2040, I am eating the dark chocolate peanut MMs as I write this! LOL I am using Tropolactive-S Scar cream now..whitedove started a thread here about scar remedies and a lot of women liked this cream. I figure why not. I will let you know how it goes..I am going to rotate between this new cream and the cocoa butter...
mom38yo, eat some cayenne! I know I sound like a nut job but I ate cayenne the day of surgery and for the next few weeks. Nipples stayed pink! I ate at least a few teaspoons a day and downed it with water! It is supposed to be good for your blood circ. It didn't hurt me...it's all natural so I took it!
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hurleygirly I love your suggestions...dark chocolate MMs, cayenne and very special scar cream....my kinda woman. Where do you get the cream??0
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mom38yo - I too had my nipples turn black and turn into a scab. My surgeon looked at them a few days after surgery - she said by then she could tell if they would die or not - said they were fine - and they were!! Good luck to you.
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One of my nipples turned black as well, but it's fine now. I kept a sterile pad, with antibiotic ointment on it until it healed.
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Hi Ladies
I have a question about my surgery. I just received my surgical and pathology report. I was told by the BS that I would not have a sentinal node biopsy but apparently there was a lymph node that was biopsied. And the term "sentinal node biopsy" was used. I assume this was a node in my breast (are there lymph nodes in our breasts?). The lymph node biopsy was negative.
Can someone explain to me the SNB? Does it leave a scar in the arm pit (which I don't have)? I am just confused as to how they got a node. I will see my PS on Friday and will bring the report with me to ask about this. Just thought I'd consult with the "experts" on bc.org first! :-)
Thanks!
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The sentinel node biopsy is where they place a special dye into your breast, usually very close to the areola, in order to find the lymph node that your tumor would go to first. Yes, we do have lymph nodes sometimes in the breast itself... they're actually everywhere in our bodies. I don't have a scar either, and 3 were taken, all negative. Some people do have a scar in the armpit and I think it really depends on the location of the node. Anyway, the normal process is this... they locate the sentinel node... take it out... send it to the lab for preliminary results while they're still working on you... the lab calls the BS and gives the prelim result... and if they find cancer in that one, he will most likely take more to see if there's more spread but if it's negative, they'll finish you up. After surgery, that lymph node is looked at more closely under a microscope and staining to make sure there's no microscopic cancer cells. They'll tell you on your final pathology what the final result is. Depending on how many they take, you may have a little more limited movement for a while, and although most don't have problems, a few develop lymphodema.. where the arm swells.
I hope this helps!
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Speech, I had a node out too but it was not the SNB. The way my bs explained it to me was that he was going to remove the first node. I asked him if it was the sentinal node and he said yes and I asked him how he can identify it without doing the SNB and he said that he takes the node in "its usual position"..whatever that means! Another member here had wrote me and said that there would be no way for him to know which node is indeed the sentinal node but since he seemed so sure of himself and my final path was found to still remain as DCIS (not IBC), I didn't give it any more thought. If a micro invasion was found, I may have brought up some concerns due to my own paranoid mind!
For DCIS, a lot of docs won't do the SNB because by definition DCIS cannot spread. I had to bring up the topic of having a node tested for my own piece of mind!
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