Nipple Sparing Mastectomy with immediate reconstruction
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PB22- What great advice! Thank you so much. I don't have any medical background so didn't even know which way to turn. I don't want to sue but I just want to know the truth of what happened and why. I am a very forgiving person when someone makes a mistake but if they lie to me all bets are off.
On a brighter note, my healing seems to be going very well. Drains have already started slowing down so I should get those out rather quickly. I have very little pain and have cut back on the pain meds considerably. I do have these weird blue stitches everywhere my PS put the Alloderm so I look like some crazy Raggedy Ann doll. Hopefully those come out soon as well. I've just been really really tired. I've been taking long naps in the afternoon and I am so not a nap person. All in all though, excluding experience in recovery of course, everything has been much better than expected which is a relief.
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Kate, I'm so glad you are okay, but what an awful experience. I see you have not lost your sense of humor though! Yay for squishes!
MAGOB, thank you for the update on your sister. Tell her they we are all pulling for her.
PB, great advice!
Janny, I like your pic!
Alltech, Welcome, you will find lots of support here.
I hope everyone has a wonderful, safe 4th of July weekend!
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Alltech, try ketocote on the scars. My PS sells it but I bought it on line as it was less expensive. Its a silicone that you put a thin film on the scar, once the scar is closed. I have also used cocoa butter for the stretch marks.
My PS prescribed Ambien to take before bed. I used it after my bmx. It took the edge and discomfort off and helps you sleep and feel refreshed in the morning. Roll towels and tuck them where you need your arms raised to take the pressure off.
Have a Happy 4th Everyone.
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Kate...glad to see you are having a much better time of it than a few days ago! You will have to post some picts when you are ready (and of course to seriously help me out in terms of ccs) because...
today I had my 4th fill and got 45ccs. That places me at a grand total of 315. I don't know what is going on, but now with 315ccs, I swear that I am huge! My ps wants to see me in a month to see how I feel with the 315 amount and then at that time, even if I want to go with larger implants, I get scheduled for surgery which will put me probably into mid August. She said that I don't need to be over expanded at all and that today was pretty much my last fill day.
I am just so confused because I am seriously a definite C cup (bordering on D) with only 315ccs! Everyone goes bigger than that..why the heck am I looking pretty full with 315ccs? I just came back from dinner with one of my girlfriends and she said, "Girl, how much do you have right now? You are looking huge!" I will have to post some picts and get some advice!
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Kate: what a nightmare you had! SCARY!!! Glad that you are ok now & hope you have a nice 4th. with lots of R&R. X
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Hello Ladies
I have been reading the posts from about three weeks back to now. I read about Kate's horrible experience on another thread and am even more shocked to read the details here. Kate, I am glad you are doing well now. I hope you get some answers from your doctors and the hospital.
I read some of the posts way back on June 12 and I wanted to share my experience--I had a right mx on 6/28. The procedure I had is called a one-stage breast reconstruction with an allo-bra. You can read about it here http://www.breastsurgeons.org/upload/ASBS_Official_Proceedings_2010.pdf See page 27 of the proceedings. I have silicone implants.
My breast size was very small (barely an A). I had a lumpectomy on 6/2 and pathology indicated that I needed more excision; I opted for the mx. I did a great deal of research on other reconstruction options and discussed these with my PS. This was the best option for me. It's only been a few days and so far I am recovering well and I like the way my breasts look so far.
See the thread "One step implant procedure with Alloderm - Anyone?" in this forum for more information about this procedure.
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hurleygirly - that is weird! I have 375 ccs in now (I weigh about 130, 5'4") and they're big enough- I'm stopping here- but from the sound of it, smaller than yours. I'm having a really hard time estimating in terms of cup sizes but I was a small B before and I'd say they're, at the MOST, 1 cup size bigger. ?????? What does it mean? I'll post on the picture forum if you do- I've been meaning to anyway- I'd be interested to compare!
KAte - I have been following your story and just wanted to say how glad I am you are okay, and how horrified by the hospital's behavior. The mistake is bad enough, but the addition of lying really pushes it over the edge into....well, horrifying. Thank goodness you're all right now!!
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Jessamine- Thank you so much for your kind words. During this whole experience it has been hard enough for me to be a patient. To give control to others who will determine, through their actions, what my quality of life is going to be. But to then to have that happen, causing me to lose all trust in their system, just makes me feel like a victim not a patient. Isn't it bad enough all the things we must go through to be cured and made whole again without someone's careless mistake adding to the ever expanding pile of fear, pain and indignities we have already had to deal with?
I really think they thought I was too doped up to even realize what had happened so they want to sweep it under the rug. Well, guess what? Come next week I'm getting my big old Hoover out and I'm going to kick up some dust! Someone owes me an explanation!
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Jessamine, I am totally going to post picts, but i was going to wait until after exchange so I can put the entire process down in one posting. So, you have more than I, since I am only at 315. I think I am going to do with what Kate did and shoot for the 375cc mark! I know if I do that, my ps will probably bring in a range from say 325 to 400 and then I will leave it up to her to pick what looks best. She isn't over expanding me...she didn't feel like it really mattered. Anywho, pm me and we can exchange some photos. I feel like suck a freak, taking nude pictures of my boobs in the mirror with every fill! LOL P.S. I really do think I will be one cup size larger. With 315 in right now, I went to Nordstroms to try on some bras. The 32C was snug, the 34B doesn't even fit andthe 32D was a bit too big! Weird. Needless to say, I am holding out for any real bra purchases!0
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Hello Everyone,
I just had a left breast nipple sparing mastectomy on July 1. I am home now and recovering nicely. I found this site looking for information on what a post op nipple looks like. Mine is swelling a bit from yesterday. The color looks more like my right breast than it did yesterday but is definitely puffier. Is this normal?
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StillVico, Welcome! I was lucky and didn't have any nipple changes but I also went nuts and researched a bunch of things that could possibly increase blood circulation. My doctor didn't believe in any of my concoctions but since they didn't interfere with anesthesia beforehand and with the meds following surgery, I decided to try them! I was eating cayenne pepper from my hospital bed! I also took arnica pellets. Anywho, a lot of women had nipple changes and they will most likely chime in. I know a lot had temporary necrosis which became a scab and fell off only to reveal a healthy nipple. I think some had some differences in color between the two too! Not sure about puffy nipples because in general you have some swelling so I dunno if I would call it puffy. Hope this helps! glad to hear you are doing well with your recovery! (=0
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hurleygirly - I finally emailed you some pictures - glad your fill went well!!
jessamie - I am filled to 360cc and am also wondering how big to go. I am 5'4" and weigh 120 so all three of us are about the same. I was not even an A cup before, now I feel really big, but in some clothes not big enough. I too will share pictures if you would like. Be warned though hurleygirly looks amazing!! I look much better than I did before surgery though.
StillVico - I think my nipple were puffy too, swollen. They blistered, turned into a black scab, took about 3 or 4 weeks for the scabs to fall off and then they were fine underneath. Welcome to this site.
Alltech - welcome, you will find lots of help here and answers to your questions.
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hurleygirly, judging from your new pic, I think you look amazing! Wow, girl you have some nice cleavage!
StillVico, Welcome, glad you joined us. The puffiness could be some swelling. The scraping our docs do behind the nipple ,to get the breast tissue, is very intense. So, the nipples get punished quite a bit. One of mine turned black, but it's fine now. It is still a little puffier than the other, but looks pretty good for what it has been through. Just keep an eye on it and make sure it is not hot to the touch. If you are too worried about it, call your PS and let him know your concerns. Please keep us posted on your progress.
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TNLady, Kate and Vmudrow, You guys are too sweet! I think I may be the only one who doesn't want to give up the expanders! LOL I hope my final results are as good!
Happy 4th everyone!
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OK my pics are up on the forum if anyone wants to check them out- they'll be more interesting post-exchange though when we can (I hope!) see a big difference...
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Ladies, Under the active listing in breast construction here, A member Collette Posts a thread warning us that that another site is using our postings. The site is called breast cancer awareness. Collette gives a link that I was unable to copy and paste for you all to use. Find Colettes thread and link in. On this site they stole the thread about immediate reconstruction with alloderm , the thread where someone asks how to access pics and timtams site is mentioned, I'm sure you all who are on other sites will recognize more of our threads. Very concerned this could happen and for our confidentiality.
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PB, Thank you for letting us know, I will check it out! Wow, that is sad that someone would use us that way, but you never know who is lurking on the Internet.
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Well, I checked it out, all of the posts seem to be back from "09", so maybe they have stopped. But of course there is probably someone out there to take there place. I will say though, when I have googled nipple sparing, some posts from breastcancer.org have popped up. So, what we post is not as private as we might think. The whole googling thing is how I found this site to begin with. We just need to be aware of what information we post, and not post anything too private, even in our introductions. It is sad that there might be people out there using us for their gain.
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Was finally able to figure out how to post my pictures on the forum too - so let me know what you think. 360ccs wondering if to have any more fills? I have asked whippetmom's opinion to see what she would recommend.
Jessamine - your look GREAT!! Thanks for sharing, so happy you have great results!!!!
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Hi Everyone! I am back from the hospital 1 day. My chest looks as if I have been hacked with a meat cleaver. The drains just about make me pass out to look, so my sweet sister has to help. Hurleygirly, you look great! That seems so far down the road right now. I am swaying like a snake trying to sit up at the computer, so I need to go. I just wanted to say thank you so much to all of you for your advice. I will try to check in after I rest. God Bless you all!
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DoubleD, Thank you for checking in with us. I'm glad you are doing okay. I would have to sit down and not look when my husband emptied my drains, otherwise I would do the same thing. Don't worry about the scars, they will fade. I'm 7 months out now and you can hardly see them. Keep us posted!0
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Hey, Kate, I completely understand how you feel.....I am so glad you came through it healthy and with yippee squishees
.You know that old saying? When you have a hard decision to make consider it drunk then consider it sober? (ancient grecian). sort of a spin on "in vino veritas"...now I'm in now way advocating getting drunk, but I think you need some perspective and time to consider what to do about it. First, get better. While getting better, do some research on the statute of limitations for suing.
When you feel well, write down what happened, the medication they gave you and go have a consult with a nice lawyerly person who can advise you what, if anything, you want to do about it.
The problems would be that you have no witness. It's your sayso against theirs, unless you can find a nurse or Dr. that could testify to something. The fact that they lied to your husband and wouldn't let him in to witness it, also stinks to high heaven of malpractice. But I think taking time to recover completely, then addressing it, would be in your best interests. Clearly, you have a lawsuit. Can you win it? Unclear, but a lawyer would be the best place to start, after you feel better.
Glad you are feeling better!!
xoxo
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re: the privacy issues....this is a public forum...anything you write is accessible. On the web forever in cyber space.
Girls, if you want you privacy, please PM. It's the only way. Be sure to keep personal info (ha ha, ruefully) as in name, address, etc. OFF as you don't want that out there. Don't post photos of your kids unless you do it privately. Don't say where you are going on vacation.
It's a nasty world out there. I have found many of my own posts online while just googling subjects related to recon. Yikes.
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DoubleD, Believe it or not...time is going to fly and you will be going for your exchange before you know it! I can't believe my exchange is coming up...I felt like I was just on here scared to death asking everyone for advice. The hard part is over, so just stay positive and all will be good!
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Thank you hurleygirly, vmudrow, TNlady! The swelling seems to have gone down a bit. On the other hand, I had a scare last night and this morning. Blood and fluid were leaking from the drain incision. I spoke to a resident from MSK who said it was normal both times. Subsequently, I have been "milking" the drain tube so that no clots form within. This seems to be working, the leaking stopped. I'm not sure if it is psychosomatic or a physical symptom but when I do the milking, I get so dizzy!
Today is day 3 at home and I have returned to taking pain meds which I took myself off of at the hospital due to nausea. Where I felt calm, strong, and confident before the surgery, I find I am tired and a little down, and a little worried. So, the vicodin helps calm me. But, I am taking this one day at a time, looking forward to healing, and getting rid of this drain!
Kate, I am sorry about your experience. It looks like you have a ton of support here! And congrats on your squishees.
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Hey ladies~It sounds like I've had a lot of catching up to do on everyone since I've taken a week or so offline. Kate~I'me SO sorry to hear about your aweful experience. You've gotten good advice on this site. As a surgical nurse, I would ask many ?'s and demand answers. Put everything in writing, copy your PS in on every email you send. I would also contact the hospital patient affairs office and open an official investigation. You are allowed to SEE your personal file for that day. Detail records are computer kept for every med administered! Also contact the hospital AOC for that day (Administrator on Call) for that day via email- copy in you PS. Their should also be a AOC for Anesthia who is responsible for the actions of the CRNA (Certified Registered Nurse Anesthestist) that day. The Patient Affairs Office will be your advocate in getting you ALL of this information. Do not do any of this via phone, ALL via email and in person. Just a word of inside advice ;0) As for me and how I'm NOT hanging (that's perky talk)! I'm day 14 & I had my 3rd round of TH chemo today! Still no side effects. Mild to no shedding of my hair; my MO & Onc. Nurses are amazed! I'm using the penguin cold caps! We've become like Ringling Bro's 3ring Circus...it's great! Of course, I'm still holding my breath waiting for my hair to come out in the all to familiar clumps. As I keep reading all of your wonderful posts it gives my courage & strength! Today was hilarious, there were some new faces who hadn't seen my entourage...I told them we didn't get to celebrate the 4th, so we brought BBQ with us in the cooler and the grill was outside! LOL Hey...we are in TN, anything possible! Boy were they disappointed! I have my last and final fill on the 15th then I have to wait til chemo is over on the first week of Sept. until we can schedule my exchange. It's all good...no worries! I'm back up to running 7 /12 miles a day ( well, I was till this last wk, my MO made me cut it back down to 3 1/2 and walk 3) I'm not happy about it, but I guess I have to obey. Oh-well. I'll comply! Hope this finds everyone doing well and healing speedily! Working towards those happy squishes!!!
Here's to soft hugs!
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GAgirl01- Thank you so much for all this invaluable information. I really am out of my element with all this medical stuff. I wasn't sure where to start so have really done nothing. I printed out everything you wrote and will use it as a guide on how to proceed. Thanks for the taking the time to let me know about all of that, especially with everything that is going on with you! I am so happy that you are having minimal SE's with your chemo. And I love the BBQ story! You have such a great positive attitude and I'm sorry, did you say 7 1/2 MILES????? Dang girl! I feel down right pathetic! Way to go!!!
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TNLady and Hurleygirly- thanks for the pep talk!
I cannot even imagine how thrilled I would be to be so close to the exchange. Right now every stitch pulls, every time I move.UGH! I have "sinkers" every day it seems where the tears start flowing. Did that happen to any of you? I also have this really bad cough that seems to get worse in the afternoons to bedtime. I am using the breathing device from the hospital..but to have a hard coughing spell with these stitches and drains is no fun. Did that happen to you? I am doing my best to get walking for a while, shower and dress. My doctors both said to shower whenever I want. How lucky!! Then I rest. What else can I be doing? Forgive me for whining. I was hesitant to post until the "funk" passes. Best regards to all of you. DD0 -
Kate33- what an awful experience! I would love to know if you were able to get any explanations.
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