NOLA in September?
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Carolynn,
the bluish skin, where is it again? Along your belly incision line? I have noted that at the end of the day, mine sometimes looks bluish. I assumed this was b/c my low rise jeans, etc., are pressing on that spot all day (remember, my HIGH INCISION - do I sound like a friggin' broken record already?? LOL)
Yes, Minnesota rocks! I totally got it when she was told her diagnosis over the phone, alone, and didn't hear much else, besides "mastectomy" and went and threw up in the bathroom. I loved the end when she said, I wasn't expecting this, but my body is better than before.
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MINNESOTA - YOU TOTALLY ROCK! Your story brought to tears to my eyes. We all share so much in common. Yes, there are PERKS to BC, and I am going to look better after all is said and done too! WOW, who would have ever thought that! I too was alone when I got the call, the only words I remember are "malignancy" and "significant" and node "involvment". I truly thought my life was over, right then and there.
All the ladies here, I have to say Thank you, even though that is not nearly enough. You all ROCK!
Spring - Thanks so much for sharing this with us. Hope you are doing great.
Carolyn - my adb incision is bluish too. Sometimes more blue than others, and it is the incision and the area about 1 inch above and below it.
PlainJane - Where are you? Hope you are well. DO NOT OVER DO IT! I am back to work full time, have been back for a week and half. The first 3 days were brutal, but then I settled in and am doing ok. I get pretty fatigued, so I go to bed early in the evenings. Things are well. Hope ok for you too.
Ginnie - Hang in there. Things will be better soon enough!
Hope everyone else is doing great! Have a great day ladies.
xxoo, Mel
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Spring- thanks for sharing Minnosota's story. It is great that she is sharing it with other women so that they know all their options. If I had known about stacked dieps when I was diagnosed in 2007, I wouldn't have gone through two implant recons. My ps at that time also talked me out of the gap, most likey because he didn't do them. It makes me so mad that they put us through so much crap just to make a buck. Question for you, how high is your incision? Mine is about 2 inches below belly button. How do they lower it and is it under general of local anestesia.
Patty
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Spring,
Thank you for posting the link. Minnesota thank you! I am on the fence about reconstruction. I have been to NOLA and had a consult with Dr. D. I am waiting on insurance approval. This is soooo encouraging. You look amazing!
Bettye
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All, Yes! Thank you Minnesota! If you haven't yet looked at this link posted below, please do!
See Minnesota's story and her in a bikini after NOLA:
http://www.clickondetroit.com/video/20292479/index.html=================
BettyeE, good luck with your recon journey. Let us know if you have any questions....
Patty, I am sorry, so sorry for all you went through. I know there is little solace in knowing you are not alone.
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Wow, you guys are great! Thanks so much for the positive feedback! And thanks to you Springtime, for posting the link. For some reason, I felt funny about posting it here - dumb, since it is being shown all over the country. Also dumb since so many women here are trying to make up their minds and could use a little encouragement, as well as a little warning about how often we aren't told all our options. I was headed for a totally different recon procedure because of what the plastic surgeon here knew how to do, because of my inability to be making the best decisions at the time, and because of how the doctor talked in such a derogatory way about free flaps (altho at least she mentioned them). Luckily (I can say now, in retrospect, tho at the time I was devastated) at the very last minute, just before surgery, someone decided I would need radiation and the immediate recon was cancelled. But it turned out I didn't need radiation afterall, and the delay gave me time to clear my head and do some research. Maybe it was fate! Anyway, now I'm thinking maybe I should post the video as it's own thread.... If I can get up the nerve! Thanks Springtime, for pushing me out onto the stage!
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You are welcome Minnesota!
I had a similar experience locally as well. Just not being satisfied with what was offered locally. I stumbled across a recon thread of someone just home from NOLA, sharing her GAP procedure. I went to the CRBS website, and though i was not a candidate b/c I was likely going to need radiation. Mom's Daughter, (Sandy) kept encouraging me, and even posted info from the "Ask the Doctor" web site, with Dr. D saying rads is not an issue. The rest is history.
I had to put up with a lot of junk locally by every doctor!! They could not believe I was going to New Orleans for surgery, and I am sure expected some fly-by-night operation, and I think they supposed I was getting scammed by goof-balls or something. This rattled my DH. So there was some work to get everybody onboard. Now, my cancer center refers women to NOLA!! Seeing is believing...
But if it wasn't for the info here, and generous women encouraging me, I think I would have ended up with a recon that always bothered me, (I am so picky) and which would have been an extremely long process, according to what I was told!!! And would have likely failed in the end anyway!!! (Rads and implants, not a good combo, as many of us know!)
Thanks Again Minnesota!!!
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Okay I am a lurker on your Thread but I wanted to say Minnesota I loved your interview
Spring~ Your reaction from your local doctor's is what I am dealing with now all except ironically my PS who said she will help me in any way possible.
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Jaimieh, don't give up. It is worth it in the end. They just honestly think they can do best by you, and don't know about the expertise at NOLA.
Many of us go through this phase of local doctors and even loved ones doubting our decision to go to NOLA when they first hear about it. They have not done the research like you have. It takes time. What got a lot of traction for me, was I gave them the Web site address and told them to go look at the pics and the doc credentials. That gets the eyebrows going up!!! The most common reaction I got was, "Most of those "Afters" look better than the "Befores". LOL!!! how true, how true. Just like Minnesota attested!
Spring.
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Ladies we all need to get the word out that there are alternatives to implant reconstruction. I happen to live in the PS capital of the world Los Angeles. When I started my journey I didn't know that there was an alternative to implant reconstruction. While I was researching my options on web sites like this one I came across flap reconstruction and it just felt right for me. I began my search for a PS in LA and was told that I was not a candidate for diep reconstruction(not enough tummy fat) and that if I wanted to have gap surgery it would have to be performed one breast at a time. I was told by one PS to go elsewhere, I really appreciated his honesty, so elsewhere I went.
I discovered Nola and I made an appointment for a consult ( because it just sounded too good to be true) and they assured me that I could have a bilateral stacked diep/lumbar. Fast forward, I am 3 weeks out from my surgery today and I feel really good. My breasts are soft, warm, firmer and higher than the old girls but it is pretty much the same.
It is so very important to do your homework to make sure that the Drs can do what they say they can. How many flap sugeries do they perform. Success should be measured by not only a viable flap but a pleasing and natural looking breast. For those of you that need immediate surgery or require radiation you can still consider flap surgery by placing expanders in your breast to preserve your breast skin until you are able to have the flap surgery. You have time to decide and research all of your options!
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I didn't even need expanders to save my skin (I had to go through radiation).
I had the mastectomy in NOLA, and Dr. D put in immediate one-step implants with alloderm. NO EXPANSIONS - to trauma to my pec muscle (well, less).
Did rads, and 6 months later went back, implants removed, and 4 flaps, just like Stephanie said above.
All issues that local PS's had were NOT issues for NOLA. I had previous breast reduction, I wanted to spare nipples/areolas, etc. all this was either impossible or "lower your expectations" locally, but at NOLA, no problem.
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And we are educating constantly. You'll find, after you get your recon, that anytime you have a physical exam of some kind or are seen by some doctor or nurse, that they will exclaim over your reconstruction. Some will even act like they don't believe that you had a reconstruction. They look at you and say, "I thought you said you had a mastectomy..." Or they will be totally puzzled about how you had reconstruction, but still manage to have a nipple - this could be because you had nipple-sparing or, like me, a reconstructed nipple that just looks so real! They ask you where you had it done and you tell them New Orleans, and they look at you like you must be kidding. Then you educate them about what's going on down there! You will also have doctors who have never even heard of DIEP. They insist on saying it's a TRAM, and you have to explain to them that, no, this was taken from your abdomen, detached and reattached. And then, to really flip them out, you might get to say that it was "stacked" and then they are totally confused, and you explain that they piled one side of your abdomen on top of the other! Really, you get to totally enjoy knocking the socks off people! And they always say, "This is the best reconstruction I've ever seen!"
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AMEN!!!!
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I agree with all of the above! As I have said before, my PS is now sending anyone that wants a perforator flap to NOLA. She is so impressed... and busy! She aspirated another 12 cc out of my R hip - and very happy that that has slowed down - but 55 cc out of the left! I must be a fluid making machine. Good grief! I spoke w/Jennifer a couple of days ago and I think she had somewhere around 40cc aspirated from one of her breasts. I am curious if people that are prone to lymphedema are prone to seromas...? Just a thought...
Tricia - Thank you. Your thoughts on the waiting and the worrying hit home to me - right now things are out of my hands and there is nothing I can do except try to take super good care of myself until my follow up studies. So... instead of researching more doom and gloom I am going to catch up on my girls' scrapbooks... that I am only 3 years behind on! I have decided to do photo books online, because I am just not all that creative with the cut and paste stuff!
I am glad to see everyone is healing up and doing better!!! Hurray for our great docs!!!
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I just have to jump in. My local Breast surgeon was AMAZED by my results. I had skin sparing but my nipple had to be removed.. Dr Stolier removed my breast tissue-saved my areola-which had two major duct excisions around the rim and was still healing (very difficult!). He made a hole in the middle-removed my nipple. Dr Allen connected the blood vessels from my thigh flaps. Both Doctors carefully pulled the breast outer skin back over the new breast tissue, stiched it up and then Dr A pulled out a piece of thigh tissue in the hole-twisted it and stiched it and "VOILA- a new beautiful nipple!" Both Doctors saved me future surgeries right there!
Minnesota- Love your story and You are Beautiful!! (your daughter looks just like her pretty MaMa
) I so know what you mean about looking even better after. I am not there yet due to lack of exercise but my thighs are thinner and boy can I tell in my jeans! My breasts are firmer and higher up too! I do plan to go for the lipo and fat injections for stage two to help ever slight lack of symmetry and maybe -just maybe get them a tad bigger. That would mean -Bye Bye outer thighs and Hello Full "C" Cup ( I am a mid "c" cup now)but realistically there is NO guarantee fat injections will take
Spring- Would you please take me down for my dates-stage two. I appreciate it.
Dr Allen thinks Ideally it would be best for me to wait 6 months until evrything settles more and heals before stage two(lipo and fat injections). This takes me into next calendar year and therefore a new deductible
but I think I should try and Go For The Best Results. I have come this far.I am SO glad to meet all of you, Ladies!!
Nordy- How are you?
Plain Jane??
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Nordy- you posted right as I was writing. I am glad you are focusing on the scrap books. "Let Go , Let God" You are in good hands with God.
My seroma on leg is fiiling up. It was drained and it came back just not as bad. I am wearing spanx daily to keep it down but it is very uncomfortable.
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Happy, fascinating about the peek a boo nipple!!! I love it!!!
I took down your stage 2 dates, as requested.
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Hi everyone. I agree we need to help get the word out about all the reconstruction options out there that we are not advised us when they are not available in our home area! If I had not searched reconstruction options and found you ladies here, I may not have even HAD reconstruction! On a less positive note (tho I am aware it is just a speed bump) I will be going back to NOLA next week According to Stacey, Dr D needs to "debride dead skin" and put a tummy drain back in. Katie should call me tomorrow with exact details, but will probably fly in Sun, go to Hospital on Monday, and fly back home straight out of hospital on Wed. I will let you guys know when I have specifics, but I will just be happy to have resolution to some of my issues! Thanks to you all for being here! I do have a good support system at home, but they can't understand everything the way you ladies do.
Ginnie
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I got to see Stephanie yesterday at our EnCourage meeting and she looks fantastic! Sometimes I beat myself up over not being smart enough to have gone to NOLA in the first place, but then have to remind myself that I least I figured out that I needed to go there before allowing my first surgeon to touch me again.
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Ginnie - I am glad that you are being taken care of (as if there was ever a doubt that you would be!) In case I can't get back on over the weekend, good luck on Monday and I will be thinking of you!
Sandy - Amen. There are many times that I wish I had known "back then" what I know now. It would have saved me 3 surgeries! But... like you, I am soooooo glad that I finally found my way there!
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Gin, Glad you are seeing them face to face. Good Luck and we are all thinking of you here!
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Sandy,
It's all part of the journey. You make such a good advocate now because of what you went through the first go-round.
I go through that stuff in my head, too. "I wish I'd had the courage/knowledge to do SGAP first, and never have those horrid implants..." But, I had to have this experience, I guess.
Anne
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For those of you who like me went through aweful implant reconstructions before finding out about other options open to us. We went through a lot not only physically but especially emotionally. Although I wish that we could all do a "do over", I do think our experience makes us even more appreciative of our new diep/gap breasts because we know how bad some breast reconstructions can be. Thank goodness we eventually found our way. Thank goodness for BC.org so that we can share of knowledge. Thank goodness for the wonderful women who take time to help each other get through this.
Patty
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OK I have to weigh in on this, so interesting! We all have regrets over what we did or did not do, not just about our cancer, but about our lives, these experiences make us who we are today. Its like the wrinkles in our skin, with each one comes learning and understanding they we would not otherwise have. Yes you would have been better off to have went to NOLA first, but you would not be the wonderful women that you are today. It is just one of the many things that make each of you special and unique! I applaud each of you for having the courage to persue what you wanted and needed rather than to settle for less. You GO GIRLS!
And lastly, I would not have made my choice to go to NOLA had it not been for this site and the encouragement that it gave me to seek out what I needed to be whole again and start getting on with my life. The first plastic surgeon that I saw was a JERK, he told me "that I would not be WORTH THE EFFORT to do a DIEP procedure, I would only end up a B cup at best"....being only a week from my mastectomies and still suffering from the affect of 16 weeks of dose dense chemo, I just heard NO. I saw another PS months after this when my radiation was complete, he told me that my only option was LD flap with implants. Again, you do not have enough tissue. I SO DID NOT WANT IMPLANTS. I resolved myself to living breast free, tried new clothing, threw all my bras away, ect.
Then I started reading on these boards again. Found the NOLA website and started looking at the pics....HEY THESE GALS LOOK LIKE ME, HOW COME THEY HAVE ENOUGH TISSUE.....besides a B cup is fine with me,its all I ever was anyway! And that is when it began. Everyone here was so encouraging and supportive, there was no way that God did not lead me straight here. You all will never know how you have changed my life.....and just think there are so many more that you help that never even chat back, but just read the posts. It is a MODERN DAY MIRACLE. xxoo MEL
PS:4 weeks out from DIEP and I am LOVING LIFE, all the girls at the office are just so envious that I can come in all PERKY with NO BRA! It is THE BOMB! have a great weekend girls.
JENNIFERJANE: Its your birthday weekend GIRLFRIEND! AND there will be no CANCER diagnosis for you on this birthday! just celebrating for you and the twins! HEE HEE!
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Melanie, Patty, Anne, Gin, et al.,
You are all soooo right! And eloquently said. I am now going to try to get up the nerve to post the video, in case someone on the site finds it and it helps them. And Sandy, we all love you for your advocacy and willingness to talk about your journey. So many have benefitted from that openness. And all the rest of you,too. ALL OF YOU! What a resource we have here in each other! Oh no, maybe now I'm going to start to cry!
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Minnesota, let me know if you don't have the nerve, and I'll post it for you.
Miss Ginnie!!!! Well girlie, there you go, back to NOLA. Let this be a testament to those who wonder what happens when the doctor is not in your home town, and you go to NOLA. If something goes wrong, they fly you back there.
I am feeling SO MUCH BETTER!!! I have been doing Gentle Yoga for over a week now I think (the days all run together! ha) and walked 2 miles yesterday, and am feeling more and more like my old self. The pain between breasts is really manageable now, without bra. I think in a week or 2 I will try the bra thing again!!
My stage 2 date was changed from Dec 4 to 2nd. Dr. D had to be out of the office or something. I had already made the flights (they were non refundable tickets with change fees) but the center is paying for the increase in flight costs since they moved the date. Just saying!!!
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JUST DO IT MINNESOTA! DO IT! Its beautiful, just like you! You have nothing to LOSE!
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Got a few more details - They are flying me in on Sun, staying at Hope Lodge (my choice), then at hospital 19 and 20, then back to Hope Lodge on 20th and fly home on 21st. They are going to see if Dr LeGarde can come put in my chemo port at the same time which would be GREAT cause I really don't want to go back to the surgeon here who more or less walked away when I told him I was going to NOLA. Ok, will take baby laptop and will try to send a few msgs while I am there.....
Ginnie
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Good Luck Ginnie! So glad that we have the no-nonsense Docs at NOLA! I know this will be a BIG turning point for your recovery. xxoo Mel
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Ginnie,
I've been following your story. Sorry you've had these complications, but you will get A#1 treatment back in New Orleans. I agree with Melanie that your recovery will take an upward trajectory once you get there, where magic is in the air!
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