NOLA in September?
Comments
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About nipple sparing. I was a candidate (my tumor was far enough away from the nipple) but I chose to not spare that side, and did spare the other side. To be COMPLETELY honest, they look alike (the natural one and the reconstructed one). Dr Dellacroce used the areola skin to make the nipple so its the same color as the original. And neither have sensation. So I know you had your heart set on it, but if Dr Stolier says no, it isn't the worst thing... And Liz is not a doctor, so I wouldn't go there quite yet.
Here here Spring!!
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Mother, don't give up!! Did Liz say why? My breasts were definitely hanging south before the surgery. I was told that I couldn't keep them if I went with the one step to implants and if I wasn't trying to go bigger, but going a little smaller made it doable. He said it wasn't easy, but they did it. I didn't get the lift until stage 2 and they cut them to make them smaller to match my new smaller and much higher breasts
I can't feel them, but that's ok.0 -
I too am curious as to why Liz would say you aren't a candidate for nipple sparing. You aren't an active cancer patient, correct? It is my understanding that the only women who are not candidates for nipple sparing are those who have cancer very near the nipple/areola.
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Dear motherandchild5,
I am so sorry to hear of your anguish but please don't despair. Dr Stollier might get back to you and tell you it's ok so at least wait to hear back.
In the meantime, rest assured that if you are not a candidate for nipple sparing there isn't a better Dr than Stollier, he is compassionate, caring, and will make you look beautiful.
Sending you a big hug and strenght my dear.
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I was not able to have nipple sparing on my cancer side. My tumor was very close to my nipple. And it turned out that I needed much more skin removed due to DCIS close to the skin. Fortunately, starting with large saggy breasts allowed me to keep my own skin (versus a skin paddle) with the Stage 2 lift and sculpt. AND my areola was large enough that some of it was spared to make the nipple. I decided to not keep my nipple on my prophylactic side. Again, my nipple was made from areola. What is great about that is the tiny muscles of the areola still relax to flatten out and perk up with touch and cold. No feeling but an impressive alternative.
I agree to wait to hear what Dr Stolier has to say about the nipple sparing. But if indeed you can't have nipple sparing, know that it is OK to grieve about losing them. (Ask about being able to use areola for nipple recon.) We have to face so many losses on the BC journey. I know I the beginning I thought they figured it out and that was it. I continued to have surprise after surprise and found myself grieving over a lot that I did not anticipate. The more I talked to people and read here, the more I understood the nature of the disease is not straightforward. You may temporarily feel like giving up, so then you take the time to rest and rebuild and get back in there. It's OK not to be Strong and On all the time.
Dr Stolier is my breast surgeon. I have full confidence in him. So do the doctors. On one of the videos of the docs I heard Dr S say a PS's work is only as good as the BS. If the BS does not do a good job of getting the cancer out then the PS's work is pointless (at least that is how I remember what I heard). At my Stage 1 preop I saw Dr S before Stolier. Stolier laughed a little at Dr S's neat markings and had to draw a big half circle around the tumor. Then even more was taken during surgery. Our PS know how to roll with what the BS needs to do. I love how closely they work together!
And...what Springtime said!0 -
I have no cancer dx. just BRCA 1+. I'm guessing Liz said that because I look like I belong to aboriginal african tribe (she did not say those actually words, lol)... she called them very ptotic. She checked with Dr. Stolier and his response was "I don't think she would be a candidate for nipple areorlar sparing". I don't know what the significance that he said "think" vs. "no she is not a candidate".... I don't know if there were just trying to be gentle in letting me down... or really he doesn't think so (but there might be a chance)...
I asked if I could do anything to change this... lose weight, etc... I was told nothing could make it change.
Is there anyone who could explain why Stolier makes this decision over Dr. D? I had actually done quite a bit of reading with studies from NIH that seemed to indicate that many women with severly ptotic breasts were actually having the procedure with decent outcome. I'm somewhat concerned.... Wondering now if I should go consult in person ahead of time to make sure I feel comfortable.
Can someone tell me what happens now? Do I just have nothing left when I wake up? Do I get fake nipples? What are those made of? Do I keep my areola? Are the nipples made in the first surgery?
I'm feeling queasy. This saddens me terribly.
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motherandchild5 I went to NOLA without a consult before hand. I went with Dr M due to her knowledge of Lymphedema. I cannot address the nipple sparing ?? as was not an option for me due to having the mastectomy over a yr ago. The details will come into focus as you approach your date of surgery. You just have to take the leap of faith in the docs and the center. they will take care of you. Do not try to rush the going home thing. Southwest airlines does not charge a change fee if you change to return flight so check into them is they fly out of where you are. I personally drove just because of my LE and flying is a painful option for me. It is so hard I know and your head is spinning with all the things that are left up in the air but as I said they will all fall into place.
3.5 weeks til surgery and yesterday I had to see my MO as my neck has been giving me fits the last 2 weeks. She did not feel any palpable masses but sent me for an US and CT on the neck. results next week...errrrr. It feels as if there is something pressing on my throat and if I push on the side on my neck it makes a weird POP. Here's to hoping it is nothing. I just got released from hyperbarics on Monday and was looking forward to a relatively calm month before surgery....so annoying to say the least!
Maggie-2
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motherandchild5 - will send you another PM.
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Perfectly stated, Spring!
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motherandchild- it is my understanding that if a woman is very large breasted (and I don't know if this applies to you) nipple sparing cannot be done because of issues with the blood supply in that situation. My breasts were ptotic but they were small, so I had it done. I don't know if the areolar could be spared in your case, but sometimes that is done. I have seen amazing nipple reconstructions with areola tattoos or areola grafting. I totally understand your disappointment and sadness if you cannot spare them, (I too, faced that possibility. The first PS said I probably couldnt spare them. Others said I could. However, after that appt I thought about it and was still going to go ahead with the surgery, no matter what.) I will try to PM you.
My biggest annoyance to date is an aching around my shoulder blade and under the lateral mammary fold on one side. The other side is fine. It doesn't seem like it is getting better. The shoulder blade issue was felt from the get go and no lipo was done there so I don't know what that's about. I guess the other area is from tightening from the surgery. It does hurt at times though I dont need to take anything for it.
I posted my pictures to those who are interested. Nola Diep Stage 1/Stage 2. Im actually very proud of myself for figuring how the heck to do it!
Good luck to the ladies having the surgery this week!
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I was not able to have nipple sparing recon because my tumor was right behind my left nipple and on my right side because I had lost so much weight my breasts looked like gym socks with tennis balls in the toes. Dr Trahan gave me the choice in stage two of recreating nipples or I could go with the tattoo with Vinnie, I went with the tattoo and I am glad I did. I am only 41 and I now have breasts that look better than than they did before I was diagnosed. The Center is amazing and I am so lucky I live in NOLA and was able to have Dr. Trahan as my doctor.
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Mother... nipples are addressed at stage II so when you wake up from stage I you will just have incisions where your nipple used to be. To be honest, initially it is a little scary, but I can 100% say that once things heal and you get rebuilt nipples, my breasts looked like I had never had surgery. It is amazing. So don't expect to be complete after one surgery. You are fortunate that you have not had cancer and can avoid node biopsies that cause other issues. Now when I awake from surgery and see fresh scars, it doesn't freak me out because I KNOW I will heal and be better than ever. I agree that you need to take a leap of faith, and they have done this so much that they know what they're doing... and Dr Stolier makes the decision about nipple sparing because he is the breast surgeon. Its his job to know if the nipple will have sufficient blood supply to survive.
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Betsy and Pamela- So glad to hear your surgeries went well.
Wow feels like its been a while since posting here. I started my new job this week. Starting a new chapter in my life. All is going well and after last year it is welcomed. I kind of think it all is a good distraction from everything that did go on.
To all thinking of going to NOLA- I had a great experience! I too like to know what I am going into and ask tons of questions and at some point you have to go with your gut feeling and listen to what others here are sharing about their experience. It is your decision in the end. I am very pleased with my results.
LaStar and Chelle- Good to see you on the thread here. Hope you are both doing well.
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Mother of 5 - I'm chiming in here because you are in a position quite similar to mine. I have 4 small children (two 7 yr olds and two 10 yr olds), am 51 years old and am also overweight (technically obese by the numbers, but by no means huge). I had PBMX with DIEP by Dr. Stolier and Dr. D. 3 weeks ago today because of strong family history. (Sister died if breast cancer at the age of 43.)
While I am not BRCA positive, my husband and I felt strongly that a 40% chance of developing breast cancer was far too great for our comfort. And because my insurance agreed, this was a "no brainer" to us....as it obviously is to you.
My apologies on the front end for this being such a long post. But I want to tell you about a couple of things. First, what I personally know about the nipples (my experience to date) and second, a few thoughts about the whole process. I think my telling you about what I learned and have experienced since my surgery may help you understand more of what goes on and why. Plus, hopefully it will give you some added perspective from someone in a position remarkably similar to yours.
I, too, had long, somewhat large breasts (but even being overweight...I was never really more than a large c, small d cup.) And having lost 30-40 pounds a few years ago, I had significant droop. I live only 3 hours from NOLA and, therefore, made the quick drive down for a pre-op visit. I met first with Dr. Stolier (who my husband and I both loved). When I mentioned something about nipple sparing, he commented that there was a good chance I was too large for that (my breasts, not me overall). I knew this was a possibility and I was prepared for it but was still hopeful when I met with Dr. D. shortly thereafter. (Side note: I had previously consulted with a local PS who was a real egotistical jackass. When I told him I was there for a consult and was interested in DIEP in NOLA, he immediately said "You're too big for them." I knew different but calmly said "Well, maybe so." Shortly after, I said "And while I understand you don't do DIEP, I do understand you do nipple-sparing." His immediate response was, "You're too big for that." What a prick. But I digress.)
Anyway, when we met with Dr. D. (who we also loved immediately), he went over some basics about the DIEP. I was already pretty familiar with the process so I didn't have too many questions but when he asked me if I had any, I said "Is my size an issue?" He didn't bat an eye and said "Not for me." I loved it! It was like he had said, "you may have a problem with your size, but I certainly don't." (Honestly, it almost made me wonder why I had ever HAD a problem with my size!) Anyway, my next question was "Dr. Stolier seems to think my breasts may be too big/long for nipple sparing. Why is that?" His response was something along the lines of "Well, his concern is the distance between the new blood supply and the nipple. But I'm not worried about that. There is always a risk of losing the nipple...for small breasted women and for large breasted women. Even for a woman having nothing but a traditional breast reduction or boob job. But I don't believe it will be a problem. We'll let Dr. Stolier take care of what he does best and I'll take care of what I do best." He said all this totally respectfully with a little grin on his face. He knows what he can do and is confident in his ability. It didn't come off as egotistical at all...just very self-assured. We left it that we would go for it and hope for the best.
Flash forward to my surgery 2 months later. When the pre-op nurse reviewed my scheduled procedure, she read off " prophylactic bi-lateralasrwctimy with skin sparing DIEP". I questioned about it not saying "nipple-sparing" and she said g like "I believe that means that but we can double check before we take you back." When Dr. Stolier came by I asked about it and he said, "if that's what he wants to go for, we'll go for it." 8 -10 hours later I woke up with 4"x4" bandages over my breasts (placed there personally by Dr. D.) and, as far as I knew, my nipples were there.
The next day, when Dr. Stolier came by during rounds, he took one look at my covered breasts, chuckled and said "That Dr. DellaCroce. He's like a poker player that keeps his cards in a pile and slowly spreads them apart because he figures the slower he opens them up, the better the hand will be." It was pretty funny and one of my husband's favorite stories of our stay. When Dr. D came by during rounds, he said he put the bandages there for extra precaution because of my large aureolas and because I had thin skin. I was to leave them there until I went back for my post op a few days after my three nights in the hospital.
Everything went very smoothly in the hospital and right up to my post-op appointment. When he removed the bandage on my left breast at the post op, he said everything looked looked great. When he removed the one on my right breast, he said it looked good but there was one dark spot about the size of a nickel at the top of the incision that looked like it hadn't gotten quite enough blood flow. And at that spot, my incision hadn't healed quite as well as we would have liked. I asked if that meant I was going to lose that nipple and he said "I don't see why it would. One of two things will happen. Ideally, the blood flow will work its way there 100%. That dark spot/skin will dry up and sort of slough off like a scab, and the incision will heal. Or, the spot may get a little bigger, then slough off, and we may have to ask you to come back so we can put a couple of extra small stitches there to sew that spot together. Either way, everything should be fine. You'll end up with fresh pink skin under the dark area (ie the "dying" top layers of tissue just below my aureola) and it will end up being scar-like. But I'll take care of that when you come back for stage 2." I asked again "So that means I won't lose the nipple?" and my husband looked at me and said "Isn't that just what he said?" Dr. D smiled and said something like "Yes, that's pretty much what I said."
Flash forward another couple of weeks and I'm still babying/doctoring that "spot" according to their instructions. I didn't have to go back for stitches but the spot did get bigger. I email pictures down every few days and they tell me what to do based on the pics. (e.g. use A&D ointment or beta dyne). My husband and I think it looks rather icky but there is no pain and I'm continually told "it's healing nicely." It's a shame it didn't heal like my left breast but, that's the breaks...no big deal really. Just a "chore" to deal with.
All in all, everything I have been through (even my icky incision, dying skin area) has been FAR easier than we thought it would be. And I suspect yours will be too. It's certainly been no walk in the park, but I've never once laid around moaning in pain or misery. My abdomen hurt and "grabbed" me for close to two weeks every time I got up or sat down but the pain was tolerable (with pain meds!) when sitting/laying in my recliner. It has healed I'd say 95% now and only feels tight from the tummy tuck. I'm ready to "feel like me" again but it has not been horredous and everyone who has seen me (since my first day home) has been amazed at how good I've looked. (And that's my husband and me included.)
Like me, because you have not had a diagnosis, you should not need nodes removed (which means you won't lose any range of motion in your arms even temporarily). That is a HUGE blessing...you can wash and style your own hair, wear pull over shirts, etc...and something that came as a pleasant surprise to me. You and I haven't had our bodies worn down from previous breast surgeries, dozens of rounds of chemo and countless radiation treatments and I'm sure that's got to be one of the main reasons my recovery (and most likely yours) has gone so much easier than I expected.. I know you are scared and overwhelmed, and it would be insane if you weren't at least somewhat that way. But you've got to put it in God's hands, and the hands of the best breast reconstruction doctors in the world,
buck up and get on with it.
Women like you and me HAVE IT MADE. We have a choice in this...a choice to save ourselves for our children, husbands, family and friends. 95%+ of the women on these boards and who go thru this had no choice. Sure I'd like to keep my nipples. My husband would like for me to keep my nipples. Dr. S. and Dr. D would like me to be able to keep my nipples. But mostly, we would all like me to be around for my kids and my husband. Screw my nipples if something happens to them. My life will go on. And I'll still have perky, smaller, "youthful" breasts with tattoo'd or reconstructed nipples that will certainly look better than the ones I had three weeks ago.. But mostly, I'll still have ME and my children will still have ME.
I don't mean to lecture. Honestly I don't. But you have got to open your eyes to what a golden opportunity you have been granted. Yes, it bites that you're BRCA positive. Yes, it bites that you're even having to think about all of this. But hallelujah you have the means, knowledge and blessing to come out from under all of that with your life (AND "new" boobs and a flatter tummy!). I feel so bad for all of the women who don't have that. From what I understand, 60% of the women who will one day get breast cancer would not be classified high risk. 60%! Those poor women (women like my sister), never had a warning, never had a chance to be proactive, never had a say. And they got cancer. Many of them died. And those that didn't, went thru hell to stay alive. A living hell. And there will, unfortunately, be thousands upon thousands of more women come along just like them.
You and I are the lucky ones. For whatever reason, God allowed us a warning. Gave us a choice. And gave us access to the best and most state of the art medical care available to take care of our little "problem." Go ahead and grieve the fact that you may lose your nipples. Grieve that, should you have another baby, you won't be able to breast feed. Those things are part of the process. But you can't (or shouldn't) continually wallow in it or second guess your decision (or the opinion of the doctors) because it serves absolutely no purpose other than to wear you and those that love you down. Remember.....you and I are the lucky ones. Inordinately lucky! Not only do we have great kids (LOTS of great kids), husbands who love us, family willing and able to take care of us and our kids, but we've been handed our health on a silver platter. Nipples or no nipples, you just can't kick on that.
Best of luck to you Motherof5. You can do it...you've got 5 children and, from what I can tell, haven't been driven totally insane by them. That means you're tough as nails and can handle this and whatever other blessings are thrown your way. All you've got to do is believe it and put your faith in God and your doctors.
Grace and peace, Nancy0 -
Nancy,
Thank you. Exactly what I needed to hear.
It's funny because last night I was crying and talking to my husband and telling him what a spoiled brat I'm being. I was telling him of all the wonderful woman I've seen on this board and how much you all have gone through... It's an absolute gift beyond measure that I am able to deal with this issue prophylactically. I was telling him that I was actually surprised anyone had an ounce of patience to deal with me given the medical history of so many and how much many of you have gone through.
So I was getting a little tough with myself... inside my head... telling me to knock the crap off... and hunker down and commit. I made a date for April 17th with Liz but told her it's tentative... In my head, I'm thinking maybe May, well then June.. well then after summer... then maybe Fall...etc...
Maybe I just need to say April 17th IS the day? I was thinking of flying down ahead of time.... like somehow seeing them in person I can plead with them to reconsider my nipples... Like, if they see me in person somehow they'll change their mind. My hubby said, "well if they say no, what then?"... I guess the outcome won't be any different regardless... It's not like I'm going to say I'm not going to NOLA now. So, I guess a consult trip down doesn't make a huge difference.
Leap of faith is exactly what I need to do.... as tough as that is...
Thank you to everyone who has offered support and having patience with me (for what may seem to you all as a miniscule concern on the grand scale)... I really am thankful and feel blessed to have your help.
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Mother --
No concern is miniscule for any of us on this journey, and each of us has their own to make. Keep that in your mind always. It isn't patience we offer, it is caring. You are on the right track. And Nancy's message is a great one to print out and read when you need a shot in the arm! I had to lose my nipple (unilateral mastectomy), but Dr. D. has built me a new one and as soon as I have my tats, I am sure I will not know the difference in look, though it does feel different. My life wasn't worth squabbling with the doctors about a nipple! :-)
Glad you are here.
Maggie
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Question for the fitness pal ladies - Are you eating the extra calories on exercise days and still achieving weight loss? I have been on the up down ride for 4 weeks. Week 1 down 4 lbs, week 2 up 2 lbs, week 3 down 3 pounds, week 4 up 1 pound. I have lost 5 lbs in 4 weeks but the up down ride is ticking me off! Something isn't going quite right. I really wanted to drop ten before my 2b. It isn't looking realistic with less than two weeks left.
Welcome to all the new ladies! Betsy and Pamela - your results on the pic forum are inspiring and gorgeous! I am so excited to get some nipples! I see my 2b as getting some icing on the cake and a big slice of pie too with the lipo! Not nervous, anxious or worried. I am however looking forward to being done. I feel so good right now and have to take the recovery period in stride to avoid frustration. The entire journey is so worth a little bit of down time. On another note, I compared 10 weeks out pics to my stage 2a 4 days post op pics and it doesn't look like I lost any fat grafting. It stayed put. After my recent weight loss struggles at least the silver lining to having belly fat boobs is that they will probably stick around.
One more question for Massey's mermaids - Did you have tattoos with Vinnie and if so where did you have them done? Did you have to travel to him or did she bring him to one of her offices for a group of you to get them? Thanks ladies!
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Anita, I'm not losing any weight! So frustrated. I have only achieved consistent 1 lb/week weight loss when I cut out bread and dairy. Even when I am exercising a lot, my diet is still the critical factor. I think variation is normal, especially if you are still menstruating. I think that 5 lbs in 4 weeks is excellent!!!
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Anita.... I think the fluctuation is normal as Leigh Ann said. I lost about 3 pounds pre surgery, but then came home up... Huh? Didn't they suck and cut fat out of me? Talk about frustrating. But I LOOK thinner, so I'll go with that. And no exercise for me for a bit...
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I am not losing either ladies and I am getting very frustrated!!! I think my hormone levels are playing a huge part (HRT)
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I'm trying to focus more on getting strong and flexible, reducing recurrence risk, & having more energy than focusing on what the scale says. Because the scale is a b!tch.
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Mother I think that so many ladies take "a leap of faith" going down to NOLA that you are going to be just fine. I think that your situation is a little harder to just accept. I give you all the credit in the world for being pro-active.
My girls are now 3 years old and I have to say NOLA is still the best thing that I have done. My only regret was not starting there but I have come to terms that I can't get a "redo". I also had Vinnie do my tatoo's before he was going to NOLA. Actually while sitting in his chair kept encouraging him to call and talk to NOLA. He is amazing and I am sure I will be seeing him soon as I have needed touch ups but honestly they are just low on the priority list. I am just back to trying to get thru each day of life.
It may have taken me one additional surgery but it was all worth it. I went down to NOLA by myself for pre-op day because my sister missed her flight. I was scared until I got there and they all made me feel so much better. I am sure I was shaking like a leaf but I left there excited again. I went down there after loosing two sets of implants and have two surgies to clean up the fact that my body HATED the implants. I was concaved and you could feel my ribs, NOLA was my last hope because no one here in MD could help me. I just wanted to look normal with clothes on and I got better than looking good with just clothes on. Yes, I have scars but they are light, flat and part of me that tells my story.
So anyone on the fence, take the leap of faith.
BTW, I don't think you can go wrong with any of their doc's. 0 -
Ha, be gone scale! You are a b!tch. I am going to move to weighing in monthly. Certainly avoids regular aggrivation. I do feel stronger and flexibility is improving. Huge success just feeling better ladies. Building muscle is so good for us even if pounds don't go anywhere.
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Can I ask a question to those of you who had dealt with necrosis? I'm still sitting here obsessing over this massive firm area that I have. I've spoken to both Jeanine and Laura about it and both have basically said it will be addressed at Stage 2, which for me is coming right up! What I'm still left wondering is at what point or how can it be determined if this is residual swelling or if it is necrosis? Jeanine suggested it might be swelling, but I am now 15 weeks post op and it hasn't softened much, if any. Can you tell via ultrasound or something? This area is so large, I am wonderging if anything can be done to resolve it other than doing a new flap. It's at least 1/3rd of the breast if not more. I'm just trying to prep myself for some devastating news but grasping at straws in hopes that it might not be devastating after all?
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Just a quick question... I'm interested in seeing everyone's pictures. I Pm'd the person a couple days ago in order to gain access to where the pictures are stored. Is there anything else that I am supposed to do?
Thank you ladies.
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She will pm you back with instructions to access. It takes a couple of weeks sometimes but she will eventually respond.
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Audrella... As I have said before, you are in the same spot I was in. I had about a third of my left breast very firm prior to stage II... Dr D worked on it, and it did improve, but I still had a portion firm over a year later. And the size of the breast shrunk. I will say that most people probably would have left it at that (pictures on the forum), but I wanted another go at it. So last week's surgery addressed it. Dr D removed the firm area and did a rotational flap. I am still unsure if he removed all or just most of it. He had talked about leaving some of it down by the chest wall where I wouldn't feel the firmness. If the operative report doesn't say, I am going to email him. My suggestion, is let them do what they can at stage II and that may be the end of it. Don't get ahead of yourself. I truly did have a good third very firm going into stage II.
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Hi, I am having stage 2 in chicago Feb. 20. Long story but I really wish I would have planned to go back to NewOrleans.
Anyway, how do I look at the pictures of the forum?? Thank you,0 -
Dear Jaimieh,
Loved reading your post and your story!
Thank you for sharing.
Lulu
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Kate.... you need to PM nowheregirl. She is inconsistant about how quickly she replies, so just be patient.
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