NOLA in September?
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I think my question about the whole nipple process got buried, anyone have input? My facebook name is Erika Landon
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Oh Dragonfly. Sorry, I was planning to answer you on that!
"Ok ladies I'm getting closer to my NOLA trip and getting super nervous about the nipple part. How do they do it, how realistic do they turn out, what's the recovery like, what can I wear after, odds of them not turning out good? Funny I had almost no anxiety about going to NOLA in the beginning but the smallest part of the procedure is freaking me out."
They cut a circle around where your areola will be and raise the outer skin. The central part remains attached. Then they do various origami-like folding of that skin. There are lots of techniques. So maybe think of it like when we used to make those pinwheels... So then they sew those parts down to make the nipple. They look very realistic and no one will be able to tell the difference from regular nipples, especially after they get colored - that really adds to it! The reconvery is just kind of a hassle - not painful. So they give you nipple guards to protect them, and you put ointment in the guards (they're open on the ends) for a while. The ointment can get on your clothes, tho you can tape guaze over the ends to help. Try not to let this part freak you out - this is the least of what you've gone thru! Wear something that you don't mind if it gets a stain on it. Black would show least. Then have a blouse or shirt that's loose that you can wear over it. If you can tie it at the waist, then it poofs out good and covers the Madonna-like protruding nipple guards. That's my story, and I'm stickin' to it!
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Wow...I feel like I just learned all of my favorite super hero's secret identities!!!! lol
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oh and I'm Dawn Larberg Coletta btw
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Thanks so much Eve, I guess I'm just nervous of the unkowns. How realistic they will look and such. Nordy thought it was about 3 months before the tattoo? Kind of a bummer I'm losing my insurance in July. Wonder what it would cost out of pocket??? I better find some loose fitting shirts. Not that I wear super tight ones but nothing that I think will hide the covers. How long do I have to wear the protectors and stay out of the water and stuff?
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I was told tattoos would cost $300.
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Well that's not too bad out of my pocket I suppose after all of this
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And how big are the protectors - how far do they stick out?
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ha that's one of my biggest concerns right there, how silly huh but I'm not sure what to expect here.
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My Dr. D nipples look very realistic and my oncologist is referring women from L.A. to NOLA whenever possible due to my result. I saw him last week (and God bless him, he let me quit tamoxifen!) and he is so pleased with the outcomes he has seen in person that he wants to meet the NOLA docs.
How the nipples feel has been a bit disappointing. Braless under clothing, they look very natural, but there's no palpability, something we tried to improve a couple of different ways, including dermal fat grafts. Radiesse injections are what I'm going to resort to, and will probably have them done again the next time I'm in NOLA, as they last just a few months. Done in a crosshatch pattern, Radiesse can stimulate the growth of collagen fibers.
I wore tops with bold patterns to camouflage the nipple protectors and that worked really well for me. They stick out about 1/2", so you don't want to wear a plain t-shirt over them!
JustLaura, choosing the NOLA docs IS taking control and procuring the very best surgeons in the world for your reconstruction!!!!! Those of you who have started in NOLA are blessed with the most fabulous outcomes available on the planet. I just feel lucky that I had the guts to leave L.A. before stage II and get myself out of the hands of my jerk ps before things got any worse.
My FB is Sandy Keller.
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Sandy, what do you mean how they feel is disappointing?
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Sandy, how long did you wear the nipple protectors? Were you able to wear a stretchy bra? And not sure I understand about the Radiesse, collagen fiber stimulation, etc . . .
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Jerusha - thanks for the Oncotyping tip. I just got off the phone with my oncologist and totally understand all of that now (or as totally as my pea brain can handle right now). Is the other test the Mammaprint? That is the one my Oncologist told me to watch for and make sure I get the results from if they chose to do it. They don't need to do an Oncotyping if a Mammaprint is done. And won't do the Oncotyping exactly as you said unless the nodes are clear.
Were you able to easily get your pathology report easily from NOLA after surgery? I'm assuming that they are great at this since we all have oncologists at home but since mine is not used to out of state surgery they are slightly concerned with getting it. My onc can not get a copy since she is not the requesting doctor (with HIPA laws). I know that I can request it and will. How is this handled in NOLA?
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I had my pathology report before I left NOLA. I can't remember when I got it exactly though. Must have been at the post op visit.
Today was a good day. I drove my car and I am at 4 weeks so I can sleep on my side! Yeah!
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I had my surgery on Tues and my path report was ready on Monday. Dr Stolier called me directly in the morning, faxed a copy to my med onc, and had a copy waiting for me at my post op that afternoon. Almost a week later he emailed me a copy of more results (the ER/PR Her2nu status) and I forwarded that on to my MO. My radiation onc had a few questions that were not spelled out on the path, so she had slides ordered so her pathologists can take a look. The path place in NOLA was on the ball and very helpful getting it out. My appt was late Friday afternoon and they said it would go out early Monday.
Tigsun! Did you actually sleep on your side yet? I've tried to the past 2 nights, with pillow support. I just end up on my back. It's still painful to lay on my side but I love to curl up on my side, so it's a tradeoff. How is your back? Are you able to stand up straight?
Ladies, I had my first chemo infusion! And I survived.
Of course it was not nearly as bad as the waiting and anticipation. There was another young woman there and we hit it off right away. Lots of talking and laughing. I think we shook things up today. Made it fly by. The nurse told me she never talks to anybody. And the young woman told me it was her best visit yet. I told her all about NOLA and she was very interested. Her surgery is after chemo. In fact, I told a few people about NOLA and they were also interested to hear about it. I get my port a week from Monday and my original breast surgeon will be putting it in. I'll be glad to see her and tell her about how I did in NOLA. She recently came into the practice from another state and had patients that went to NOLA. I didn't really follow up with her about my final plans so I'm curious what she thinks. I'm both wired and tired right now.I'm set up for starting PT next week. I had to cancel a Girl Scout camping weekend (for me and my daughters) coming up, as it's the weekend after an infusion. I was holding out but...you know. I registered back in January!
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Theresa so glad you reminded me about sleeping on my side..but still kind of afraid..as I'm still very swollen on bc side and the morning is the worst. I have still been propping myself up with all sorts of pillows haha I'm afraid to lay flat!!! c
Cider...glad you had a good experience today..I went to my onc office today to meet with nurse and go over my plan and what to expect and to be given a bunch of prescriptions for anti nausea etc...so i'm scheduled to begin my chemo on 6/22 a/c & t dose dense every 2wks what are you taking? really want to know what to expect but I know everyone is different ..also picked up my wig today..what are you going to PT for? your arm? I have been trying to stretch (slowly) so afraid of lymphedema...the lady at the wig shop wants me to be a mentor as I'm so positive and full of info....(bc.org haha)
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Oh, I forgot to mention one thing. As the fluids were being pushed, I could feel them in my flaps/breasts! I asked the young woman next to me if she feels it in her breasts, but I don't know if I forgot her answer or we got cut off. So I kept thinking about the microsurgery etc and how good it was to feel that flow. Similar to hearing the dopplers.
Dawn, I'm doing the dose dense ACT. I'm getting my port before the next infusion. I got wired from the other meds, I think. My MO said something about the benedryl having an effect on me and my nurse said Oh, no; that's all her! I'm going to PT for range of motion in my arm on the cancer side and some scar tissue work. And whatever else they can offer me! I've found a great practice; the Dr is a BC survivor herself and has a great program for post-mastectomy pain. I've already been to the lymphedema therapist, as my cancer side arm just feels different. She taught me the manual lymphatic massage and I find it very helpful. She gave me some gentle exercises for range of motion, but I need to get down to the nitty gritty with the other practice. I'm also going to get a sleeve tomorrow to just have it when I need it (car rides, outside activity in the heat, exercise).
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What is the popular lymphedema thread on this website?? After 6 months post surgery, I am having issues in my armpit and lower shoulder and think I may have a slight case of lymphedema... I am seeing my MO next week for a port flush and will bring it up. I was a bad girl and gardened and grouted a table without gloves on... I am afraid I brought this on myself.
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Betsy, I don't have a thread to recommend. I went to the lymphedema therapist at my cancer center at home. I benefited from all the education in NOLA, but I know that's a ways away for you. I'd met with Robin from National Institute of Lymphology http://nilymph.com/ (Dr Marga and Dr Sullivan's organization). She provided me with several articles from National Lymphedema Network http://www.lymphnet.org/ . A good place to start.
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Dsnydawn, you have probably already done this but, if not, I really encourage you to join the chemo thread for this month. The girls I went through chemo with were absolutely wonderful. Just as I feel I wouldn't get through DIEP surgery without this thread, I don't think I would have survived chemo without the chemo thread. I wish you and Cider all the best. I did DD AC + T also. I finished on March 23. If I can ever help you, I am just a PM away!
Big Hugs!
Susan
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Betsy, go to the Lymphedema Forum. There are many threads ... A good one is "Grrrr. I Hate Lymphedema". There is a wonderful woman named Binney4 who knows more about LE than ANYONE you will find ANYWHERE. She is incredibly generous, kind and supportive and she will help you out. She has been an angel to me. Another woman named Kira is on the LE threads and she is also very knowledgeable and will help you, too. Its easy to blame ourselves, but gardening and grouting are unlikely to have harmed you-- unless you got an injury or bug bite of some sort that caused an influx of lymphatic fluid....
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Thanks Jerusha.. I will check it out.
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Ok, question as I head off to bed soon - somehow I had it in my head that I couldn't sleep on my side until 6 weeks out. Now I'm looking at my post-op instructions and it says "may sleep on back ONLY for 4 weeks. Stomach sleeping may be resumed at 6 week post-op". And y'all are writing about sleeping on your sides. So am I understanding correctly that at 4 weeks out I am ok to go back to my side sleeping after all? Providing it is not too uncomfortable . . .Sorry if this is a dumb question- I am a little 'dense' today, just too many days of inactivity I think. Feel like I am in slow motion for this whole past month. Need to get going here!
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If you do the usual propped up on pillows on your back thing, but pad along your sides with even MORE soft pillows, then lean ever so slightly to the side....it will feel like heaven after these last 4 weeks flat on your back. Today is exactly 4 weeks out for you, isn't it? Tomorrow was my preop a month ago, when I came to see you! I was so psyched seeing you up already in your chair!!
Have a good sweet sleep Kaitsmom0 -
aw thanks . . . I have this memory of you sort of floating into my room looking so lovely, and I thought "ahh" . . . thats about all I remember from that day! wishing you a sweet sleep, too . . .
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Hi Dragon-
Back to your nipple question... I am coming up on 9 weeks out and have stopped wearing the protectors during the day. Sandy is right, bright colored patterned tops hide them the best, or you can get the medela shells or the other ones that jesckachi suggested (I bought both - the second ones are much smaller profile, but didn't fit my nipples until I was further post op). Anyway, at night I have been still wearing my medela breast shields (with the tips cut off) fixed in place with micropore brown tape (I ordered extra off amazon.com). I find that wearing the protectors at night keeps me from smooshing them so every AM I have nice projection again. You can see a hint of nip in a t-shirt but it isn't blaring headlights.
I saw my onc this week and her jaw about dropped on the floor. Even with my busted up initial scary reconstruction that Dr D completely re-worked, she said it was the best recon job and best nipples she had ever seen. The nipple recon was definitely a pain in the butt for the first week or so when you have to wear the bacitracin in the shields - I ruined a few more shirts with this but once I was able to just go with the shields it was much better. I was encouraged to wear them 24/7 for as close to 8 weeks as I could, and I do think it helped.
A word of caution, I did roll one night onto my left one and the shield got displaced so I did smush it and it is smaller from the angle I have looking down on it but from head on/naked/and in clothes looks about the same as the right one.
I am super happy I got them though! I bet you will be too!
Just waiting to hear back from Vinnie about tattoo appointments now!
good luck!
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Dawn & Cider8 - tonight will be my first night sleeping on my side. I am going to sleep on the side with my non cancer breast. I will see how it goes. I can't wait for two weeks to pass so I can sleep my normal way - on my stomach.
I will check in tomorrow and let you know how that goes!
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Have a FANTASTIC sleep Tigsun . Ahhhhh
One more night of torment for me.0 -
Ok you talked me into it!!! I'm going to bed and I'm gonna try my side!!! nite all
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CandDsMom - Don't throw out those shirts!!! They aren't ruined. You can get most grease stains (including Bacitracin) out with Dawn dish detergent. Just put some on and gently scrub it in with an old toothbrush, then wash normally. I have saved many a shirt doing this - including all of the shirts I wore after having my nips done. Actually, I think even Palmolive dish soap works. Funny, but Dawn really does take "grease out of your way"!
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