NOLA in September?
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I have a question for you NOLA ladies. I haven't had time to read the entire thread yet, but do you know of anyone who had BMX & inflammatory breast cancer that had the DIEP?
My right side was radiated so much that I have a rectangle that you can still see from the radiation, plus an area on the incision that won't heal over. The one ps that I saw recommend a tramflap. I know now that I do not want that and it was before I knew about the DIEP.
I think the DIEP would be my best option for reconctruction but not sure I am ready to go that route just yet. I have no spare skin because of it being inflammatory. I think I have more that enough belly fat but I am terrified of the pain. I still have nerve pain in my right arm from the mastectomy.
Thanks for any advice given. NJ
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mrsnjband, i hear ya on the rad burns! I had skin-sparing bi-lateral mastectomies, but had so many issues with the skin on the rads side, that Dr D, on the 3rd surgery, did a lattisimus flap and replaced most of the skin on that side. I think they can use the skin from the stomach with the diep for that too? Ladies? Good luck! Just make sure the drs know what is going on and they will help you make the right decision for you. As for pain? With the "pain-ball" they use, I can honestly say I had very little real "pain", since my stomach was numb with the meds for the first few days.....
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Heather, I believe others have answered your questions, but just want to say I (and I bet all of us) will be anxiously awaiting news of your decision, then what happens if you go to NOLA. There are no guarantees, but there is no doubt whatsoever you are getting care from the absolute BEST. These doctors are used to getting tough cases, and it sounds like from what I have read here over the last year that many times the outcomes are very good. I'm so sorry for all you've been through.
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Thanks for responses. I've haven't decided anything as of yet. My insurance doesn't pay well if you go out of network, been through that with hubby's cancer. Thankfully he made his 5 years and doesn't have to have anymore check-ups.
But if the DIEP would solve my skin issues it would be worth it. I don't care about the foobs, it really doesn't bother me. But I had cellulitus in Nov & I believe it is because of the open area. I'm really tired of dealing with that. I'm suppose to see another ps & we will see what she has to say.
Thanks again. NJ
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Heather,
I know you've been a lot of places for surgery and your poor body has been through a lot! But of all the surgeons in the world, you are at the place where you need to be. NOLA (Dr. S) will do whatever can be done (and I do believe they are super good at finding fat!) and I bet you will be much improved. As Nordy mentioned, Sandy had a terrible time with her initial surgery, and Doctor D was able to fix her all up.
do you have a surgery date yet? I can add you to the list if you like. NJ, good luck on your journey! They can remove any skin that has issues, and replace it with other skin from donor area if they need to.
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To all of my dear NOLA ladies: I am of the firm belief God put me in the right place-- I will keep you posted on the date, should know for sure this week.
I lived in Iceland for for four years and the Scandanvaian people say BLESS WHEN THEY SAY HELLO AND GOODBYE: I ADOPTED THAT WHEN I LEFT ICELAND SOME YEARS AGO AND NAMED MYSELF HEATHERBLESS: TO ME IT HAS LIKE A MEANING FROM GOD: BLESS US ALL CAUSE WE ARE GOING TO BE OK. I NICKNAME MY KIDS THE SAME--MICHAELA BLESS AND TOMMY BLESS.
I LOVE YOU ALL, HEATHER
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(((((HEATHER)))))) My goodness honey, you have been through it....both physically and emotionally. If anyone can help you heal on the outside and then, hopefully, help to heal you on the inside too, it's the docs and their staff at NOLA.
mrsnjband~I had to have my radiated skin removed and the skin from belly used. Worked fantastic for me! As far as pain..they keep it so controlled. The OnQBalls are wonders after a DIEP!!!
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Hi Heather,
I think I showed you my photos long ago, and Spring and Nordy are correct. Dr. D has done all that I asked, and so much more. Nordy hasn't even seen my final result yet. It was quite a journey because I started elsewhere with a less-experienced and not-so-nice surgeon, but the surgeries I had in NOLA were not bad at all, and in fact, I joke that all of my vacations for the past three years were to go have surgery in NOLA. I guess it's not even a joke--it's true! I had a lot of fun on every trip, made new friends, was treated like a princess, and got to know a part of the country I doubt I ever would have visited otherwise. Looking back, I am so happy that I heard about NOLA in time to avoid a stage II with my original surgeon, because it would have been really ugly! You will be in the very best of hands, and Trishia nailed it. In addition to being restored on the outside, having doctors who care about your happiness is instrumental in healing emotionally as well.
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Laughlines - you are my hero...drains gone in 3 weeks. I can't even imagine... I'm down to under 50cc a day -- so I'm thinking AT LEAST 2 more weeks...but most likely longer.
Journey - thanks for the support. I guess I'll just bide my time. The drain sights still ache a bit but I guess I can live with them a bit longer.
Springtime - thanks for the encouragement about the breast size -- I actually think the swelling is starting to go down -- or I'm getting used to my voluptuous girls
And yes, I heard it's easier to take away than put back. Four flaps? How long did you have your drains for. Xfitgirl - not sure if I can wait to get down to 20ccs but I will heed your warning. Once I'm down to 30cc I'll call the nurses and talk it over with them. ALSO, I see you are doing Stage 2 tomorrow. Sending you lots of +++ thoughts and can't wait to hear all of the gory (and not so gory) details. Good luck.
Journey - Thanks! It feels good to be this side of Stage 1. Let the healing begin! As for the drains - I left the hospital with 4 drains (two in my breasts, two in my hips) even though the breasts were outputting less than 3cc. Dr S removed the breast drains at my post op and I have two left.
Nordy - thanks again for the encouragement. It was great talking to you before I left -- gave me a great deal of comfort. How did things turn out with your insurance?
Heather and MrsNJBand - wishing you the best of luck with your decisions and please let us know how we can help
For those whose surgery is behind you -- how much did your body swell after surgery and when did you stat to feel more like yourself? I have to say that it all still feels a bit surreal. I never had a day wtihout breasts but I woke up one day and they were completely different. I feel a bit like I have pillows sewn on the front of my chest -- does that feeling go away? How much sensation can I hope to end up with? I feel glad to have the surgery behind me and the cancer gone, but I guess I feel a bit mutilated. I know that it doesn't compare with women that had delayed reconstruction, but I'd love to hear how others felt after their surgery(s).
Regarding removing the drains (I know, I'm getting ahead of myself, but a girl can dream can't she?) did you or your partner/husband/friend remove them yourself? Dr S pulled the breast drains out so easily and without any pain that I'm thinking I/we will do it ourselves. Any thoughts or feedback on that?
Thanks again to everyone for all of your good wishes, support and wisdom.
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Kathryn- I'm still here, although things are improving a little. I'm out of isolation, so that I've been able to walk. Sorry for not emailing more frequently or being redundant. Still taking 2-3 Percocett per day, so it's hard to stay entirely clear. My left flap is still looking awesome and more than ready to go home. My right flap had a little more color today and doppler sounds are louder. I'm waiting to hear from Drs. Sullivan and Massey tonight regarding the plan for surgery tomorrow. This is post op day 13 sgap 11 left flap revision and 9 right flap revision . I really don't want to set any records for staying in the hospital even though everyone has taken such amazing care of me.
Xfitgirl- I noticed that you are also scheduled for surgery tomorrow. I would love to meet you if you are up to it.
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Tracee, I must have missed your story--sounds like you have had some complications! Did you get an infection?
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Got a call from my breast specialist today. I guess the new ps (that I haven't seen yet) is looking into using the hyperbaric chamber. I was checking it out and may not be a canidate for that because of one the chemo's I had. Anyone have any experience with that?
Thanks again. NJ
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Hi Amy. Tracee didn't post her surgery story -- but I did meet her when I went in for my post-op (she was day 2 post surgery) and she did have some complications. I'm sure she'll share with everyone when she comes back...but needless to say, she needs some +++ thoughts from all of us for one of her flaps that is seeming a bit questionable right now.
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Tracee - so good to hear from you. I haven't posted about your experience on this board since I wasn't sure how you'd feel about that. But needless to say, I am so happy your one flap is doing so well, and am sending some optimistic vibes to you for your other flap. I hope you can forgo surgery tomorrow...and as close as you are with the nurses it is definitely time to leave SCCH! PM me and let me know how it goes tomorrow.
xoxox,
Kathryn
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Tracee~ I hope your flap continues to getter better each and everyday. Sorry your stay has been so long but you are in the best of hands.
Heatherbless~ I went into NOLA beat to hell (sorry for the language). I had had implant in then busted a hole in the incision 7 weeks later, exchanged them out then 4 weeks later more holes, repaired the holes 3 times then I finally removed them. Then after thinking that I was DONE I developed seromas in my flat chest. After about a month of random drains I developed an infection in the seromas and I had to have another surgery to remove scar tissue. At this point it was just adding insult to my injuries (this was in Nov). Finally by Jan. I was healed and had no sign of infection and I was able to have hip flap with Dr. S. I was as low as I could go with my mental status, I was happy to be alive but my chest hurt because there was no padding on top of my ribs. I was scared out of my mind but I needed to get as close to normal as possible so I had to try. My surgery was on 1-26-10 and it was a success. At first I kept looking going what the hell did I do...and then as I healed I felt closer to the new me, then stage 2 I got a little closer, I had a stage 2b because I am allergic to everything and I am thrilled to say I love the new me. Okay so I could lose 15lbs but I am loving myself again. I do not think I would have came to the same conclusion if I had not gone to NOLA. My chest was concave, hurt because if anything touched where my breast were they touched the bones. I felt when I went into NOLA beat up...and I left with 2 drains out of my hips doing the old lady shuffle but feeling alive again. Sorry for the ramble but SO many of us go into there beat up and come out feeling alive again.
OKAY now for my questions ladies. My new girls (they are 36D's) are HEAVY and I can't find a sports bra that will hold them in place. I went this weekend to underarmour and tried on their high impact bra (sucker cost $60) and jogged in place in the dressing room and I almost had black eyes. So besides duct tape what else could I use ?? I want to get back into running but I can't without a good bra, I really don't like black eyes....lol...
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Jamie- Try Anita 5527. I wore that when I was 36G, and I think it's the best sports bra I've ever had. Not so much fabric that you feel like you're suffocating, really good support, otherwise looks like a normal bra.
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A couple questions about the Marena Compression garments. Exactly which one do you ladies recommend for post Stage 2? Should I purchase it now (one week prior to surgery) so it's here when I arrive home? Do I order the size according to my pre-surgery measurements -- not worrying about swelling? How long did you wear it after the surgery? Has anyone had any luck getting insurance to pay for it? pre-surgery?
Thanks ~ Debbie
Personal Blog My Quest: Discovering the Dreams that lie within
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You might look at www.titlenine.com for the reviews of their running bras there too. They break out their bras by barbell ratings ( how supportive they are). Good luck! I will be starting over in my bra journey after stage 2 . Right now I have a b and a d cup which makes dressing and bras a real challenge! I have never spent as much money on bras as I have since my cancer dx and various surgeries. UGH!
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Journey - I hope that this doesn't offend you but your post has given me a bit of a scare. I'm scheduled to have Stage I in NOLA this summer. I'm already worried that Dr. S will give me bigger breasts then I want. Are there any women who got B boobs? I was a B a long time ago but 5 excisional biopsies and a lumpectomy later, I'm just an A now. I hated the DD's I had when I was pregnant and am hoping to just be a B again. Dr. S warned me that with the flaps they have to go bigger for the vascular supply but how big?
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Tell your surgeon what you want. He'll listen. If it's too big after Stage 1, then they can be adjusted during Stage 2.
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toomuch - Dr. S will ask you what size you want to be and he will give you what you want. I asked for large B to small C cups and that is exactly what I got. Due to the narrowness of my chest I actually wear a 34D, however, I would not (and Dr. S does not) consider my breasts to be a D. They really are a good C, but I have played around with bra sizes to see what works the best - and that is what works for me.
Tracee - good heavens. Hang in there and lots of positive thoughts and prayers for healthy flaps!
Kathryn - so awesome to hear from you. I can't help much with the sensation portion of your reconstruction since mine was delayed. But I think Eve and Spring... and PlainJane can help you out.
Jaimie - Athleta.com also has sports bras and I think they use the barbell thing too! But I haven't bought from them, so can't give you an opinion. I am going to go look at my sports bras right now... I have an Adidas Clima cool - which they gave me free with the purchase of some running gear. I actually like this one - I didn't think I would because it felt too soft in the store, but it is really comfortable and I don't notice motion when I am running. I also have a UA one that crisscrosses in the back. This is my least favorite. It is not that it doesn't give support... it is just not all that comfortable and it sits higher on my back than the others. Not a fan. The last one I got from REI. I love it. The brand is Moving Comfort. It is supportive and comfortable. I never had to pay $$ for bras before... It is a weird thing actually having to look somewhere besides Walmart for a sports bra! But, ya know, gotta protect the girls! I don't want them finding their way home!
xFit - thinking of you today!
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Oh sorry, sorry! Let me explain. I was a hard case for NOLA because I had had lipo done years ago on my hips and thighs. Since it was years ago I could not remember how extensive the hip work was. So, since lip will destroy those needed blood supply babies Dr.Massey had me mapped out by the scan (can't remember the name). Anyway, she was able to see enough good supply that she was willing to put me on the table if I understood that things may not be perfect and may take some fixing later. Dr. S assisted. My bigger side was done by Dr.S. Dr. M. was perhaps more conservative in what she was willing to take. They decided to use the entire flap he took and not throw part of it away. I do have hard spots in the larger breast and it will have to be reduced to match the smaller side. I do wish I was a tad bigger than what I will end up being but GOSH - I am so thrilled to be soft, squishy, and warm again I could care less about the extra cup!
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Meant to say that I did want to be as large as they could get me so that is why dr.s did what he did. They both did the best they could do what what they each had to work with.
When you get marked up for surgery make sure he writes on you what size you want as a reminder.
Remember it is easier to take away at stage 2 than add to. Hugs!0 -
AnneW, Nordy, Journey-Thanks for the quick replies! I'm finishing my radiation treatments tomorrow and I'm already worrying about the next step this summer. I went to NOLA in Oct for a consult and was so impressed with Dr. S and the facility. I have a bleeding issue and Dr. S was the my 4th opinion and the 1st who had already operated on a patient with my diagnosis. I know that I'm doing the right thing going to NOLA and I know that the size of my breasts is the last thing that I should be worrying about! Thanks for the reassurances. I hope that there will be other BCO women there when I have surgery. It's amazing how long this thread has been active!
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toomuch~ I am also in MD so if you would like to meet up before you go I would be happy to meet for lunch or something and I will show you. I am a 36D BUT I went in and told Dr. S that I wanted to be as big as my body would let them be. Then after I was this size which looks awesome and not even close to being that big, I asked him at stage 2 to please do not take any away. I like my girls, I just wish that I had a little less scaring but I had lost all of my skin sparing part before I got to NOLA. Dr S aka the wizard REALLY does rock and will give you what you want. After stage 1 you maybe bigger than you want but it is easier to take away then to add to, so please do not worry too much.
Thank you ladies for the bra recommendations, I really appreciate it.
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Send me some positive vibes ladies - I found a lump in my underarm area on my cancer side. I'm heading in to my onc this afternoon to get it checked out. Trying to keep the panic at bay.
Good luck to you Xfit, and prayers for Tracee to heal fast and get out of there!
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Laughlines - I hope it's nothing...but so glad you are able to get in right away on not have to wait. Let us know as soon as you find out something. Sending +++ thoughts to you and hoping for good news.
Kathryn
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Laughlines... Positive vibes your way. Lots of prayers too. Fingers crossed. Benign dance. Whatever else it takes. (((hugs)))
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Laughlines,
I'm sorry you have to have this panic. I'm praying it will be something very simple!0 -
Laughline~ Prayers and ton of b-9 thoughts. I hope it is also something simple like an in-grown hair.
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