NOLA in September?
Comments
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Thank you again for everyone's feedback. I completely agree about the comments on the HMO. When I was in college and studying HR my husband had an HMO plan through his parents. I preached to him at that time my thoughts on those plans- for all of these very reasons- they are great for local things but when you want to choose your doctors you don't have any options.
My husband lost his job last year and we had a PPO but we had to move onto my HMO plan to have health insurance. We have a PPO plan at my employer but because I reside in the HMO network area I cannot move onto the PPO plan. I know that sounds nuts but trust me I have asked multiple times to move onto that plan- and asked again at my grievance hearing. I think they are getting to know me by my first name at the insurance company!
I talked to NOLA today and of course they could not believe this news either. I'm told the next step is an Independent Review where someone outside of my insurance company reviews my case. I would hope they would see what the best decision is. My local PS said he would call the medical director, but as of today my insurance told me they would not do that anymore??? I feel I am clearly getting a run around which gets me more frustrated.
I have to look at the end goal and that is to get the best care. I am going to find a way to get to NOLA in someway. I can't give it up after talking with all of you here!! You have really kept me going during all of this.
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I had DIEP + hip flaps 9 wks ago. No flat buttocks here... I look the same in clothes somehow. I expected to have a net weight loss but even that is unchanged. The only differences are a super flat stomach with no love handles at all and uneveness with the dog ears - my bunny tail is almost non-existent. Of course there is a difference in sensation in the incisional areas and unfortunately in my right thigh. I wear the same size clothes, top and bottom, and they fit the same and I look the same. I did not think this was possible. I walk a lot and have a rather muscular body type so maybe that helped?
I know this may sound strange but I also really directed my thoughts toward trying to return to my original physical appearance while I walked (I even have one breast larger that the other, just like before...I did not visualize that specifically!) I am now focusing on trying to regain sensation. I think the body has tremendous healing power and I am trying to learn how to get in touch with this. I am sorry if this sounds odd, it does to me as I re-read it! I am a western medicine person who is learning to think differently in regards to visualizing stuff for my body. I used visualization in sports and figured why not for this?
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The size chart on the Marena site is pretty accurate but the interactive "calculator" isn't. Go by your waist and hip measurements. If you're literally in-between sizes, go down. Go by your measurements now, not after you're swollen.
Once you know what size you want, check ebay first. Marena sells returns at a deep discount there.
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Good morning to all and thanks for the Marena tips Jes and BD!
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I had a hip flap for a unilateral reconstruction, and though in Stage 1 the left cheek (right boob, left butt, go figure!) it was a little caved in, Stage 2 totally took care of it. I have a lovely "back porch" now! I found that between all of the work, I lost weight (was working on that once I was sure there was plenty to harvest for Stage 1), but my shape has changed since Stage 2. I am a pear-shape, was size 12-14 on the top and 16-18 on the bottom -- now am a straight 14 on the bottom and 10-12 on top. Still got my hour glass feminine shape. For Stage 2a, I am hoping that Dr. D. can work some magic on the contralateral breast (he says maybe a baby flap) as with weight loss it has shrunk considerably and my scar tissue in the buttock seems very hard and ropey. Anyone esle notice that? Does it go away on its own? Oh, and as he suggested (I am assuming with tongue in cheek) to one woman on his "Ask the Doctor" site, regaining the weight is NOT an option for me!! I like the new me and feel so much better with nearly 30 lbs gone!
I also had the terrible Veronique garment after Stage 2 and it rubbed my body raw ... Laura said at the post-op visit to use cortizone creams and get a Spanx or Marena soonest! Could not WAIT to get out of that thing -- told my husband he could use it to smooth dry wall mud! LOVE my Marenas, and completely ignored the calculator. I needed GOOD compression and if I had gone with the "recommended" would have been wearing bath towels underneath to achieve it! Went down a size from what the Center had given me for after the surgery based on what happened in Stage 1. Just me, FWIW ...
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Ha! Smooth dry wall mud!
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Anyone do a hyst/ooph in nola? Bueller........ Bueller......... (c:
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Adey -- well that Veronique mesh was about as coarse as that we are using for dry wall mud smoothing for the B&B!! lol!
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Kerry, I'm glad you are determined to get what you need. I have been through the same process. Had an HMO and at the last minute switched to a PPO/Open Access Plan-was told I could go anywhere and see who ever I wanted for medical care. Well, what I wasn't told is that the insurance company had devised a "special" plan just for my company-still under Cigna but only for my company. It has so many restrictions--it's still an HMO but they tout is as a PPO!! Very misleading.
I thought about getting a lawyer and I knew that would probably be a big chunck of $$$ so instead of spending that w/ a lawyer I decided to call The Center to see what kind of cash deal could be worked out. Now mind you, the Doc's and procedure are in network so it was just for The Center and anesthesia. It basically came down to what I could have spent on a lawyer- I will be spending on The Center on The Center instead.
Insurance companies are so deceptive!!!! This is such bull*#!!. We don't need healthcare reform, WE NEED INSURANCE REFORM!!! Kerry, if you want, PM me and I'll give you my # and we can talk in more detail. I'm pulling for you!!! Listen to Nordy, she knows what she's talkin' about!!!
HUGS TO YOU!!! katiejane It's lookin' like my Stage 1 will be in NOLA-Dr's Sullivan and Massey on July 5TH-comfirmation pending!!!!!!
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Girls, Quick question- Have any of you had lymphiscintigraphy??? If so, will you clue me in on what to expect? Thanks, katiejane
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Hi B. Can you tell me more about fat necrosis? Does it only happen after the fat transfer in Stage 2 or can it happen immediately as in after Stage 1? What is the worst case scenario other than cosmetic apprarance?
Can someone lose the flap when this happens? It is separate from flap necrosis right? Thanks hearing some of this stuff is a little scary.
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I have some fat necrosis in my left breast. It's a hard lump about the size of a walnut at the top, so it shows when I wear something a bit low cut. I expect it to be resolved at my stage 2 next week. It was apparent right after stage 1. It was a larger hard area at first and it shrunk some, but it wasn't too long before it stopped shrinking and it's been the same for some time now. It's not painful and it doesn't feel alarming or anything.
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Hi Ladies,
Thank you for all of the support, especially for my SIL. I have told her about this website and the discussion groups, but I am not sure if she's checked it out yet. That is such good news.
Anita, you look way too young to be a 13 year survivor, but I am so happy to hear that. Music to my ears. :-) They recommended a bi-lateral because you were triple negative? I believe my SIL is looking at a lumpectomy. I am not sure. I am a little concerned now. She is doing the (almost) exact treatment as me. 4 AC followed by 12 weeks of Taxol. I am also doing Herceptin. What do you think? I was really aggressive with my treatment. At first they thought I only had DCIS, but because it was a grade 3 and I had done my research, I decided to go with the bi-lateral. Good thing I did b/c they found IBC in my breast and two lymph nodes. They later found it in another lymph node (pectoral), but hopefully the AC/T will get it. I don't want to be pushy, but I really think she should chose a more aggressive approach. What do you guys think? How do I broach this gently?
KSue, Congrats to you! Three years cancer-free! Yay!
Nordy, My SIL did get a second opinion in Madison and they must have recommended the same treatment as I am doing. 16 rounds of chemo. It's tough, but she is doing great so far. She had her 1st AC. Next week will be her 2nd. And my 4th. Yippee. So ready to be done with the nausea. Many thanks to the triple neg. ladies that have shown support.
Spring, Happy Belated Birthday! :-)
Thanks to all the green panty and clothes wearers! :-) I love you guys!
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P.S. Anita, you will love Dr. Sullivan. He is wonderful. I am sure Dr. M is equally wonderful. All the docs at NOLA are.
(((BIG HUGS)))
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P.S.S. The nurses ROCK too!
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ch968... I too had the necrosis right from the beginning... Dr D tried breaking it up at stage II but I still have a significant amount.. I will need a stage IIb to resolve it, with either a baby flap or fat grafting.. Mine is much larger than Eva's, imagine a plum or small orange were inside your breast...
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Hi Adey - I know Denoument had an oophy and hyst with her Stage Two. She isn't often on the boards but if you can't reach her, PM me and I will send her email address.
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Thank you everyone for sharing your experience with me.
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Caitlin, after the 4 AC treatments, it all gets easier. You WILL be done with the green/sick stomach. Your hair will start to come back some during the Taxol. Hang in there!
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Thank you, Spring!
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Jeskachi et al. ......... I thought I might go down a size with the butt lift and lipo but I may be wrong. Wore an Xl in the black one. Could not find the size thing on Marena other than the automatic calculator one. Help????
Other experiences with sizes from the rest of you?
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I had an XL with the DOM at stage I and ordered a L and M from Marena for after stage II. Both fit..
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Hello, I sincerely apologize if these questions have been covered, but this is one long thread and I'm reading DIEP threads and running out of time. Was scheduled for BMX with TE's etc. on May 23, but have figured out that I prefer a DIEP... trying to find out what kind of support you needed after you returned home from NOLA. Did you need to have a PS or BS follow you, take out your drains, etc. If you had complications and couldn't hop on a plane (or were too sick to) to return to NOLA immediately, what did you do? How many times did you need to go there, in total? The whole thing sounds like such a hassle and I have many reservations about it, yet so many ladies seem to happy with their experiences.
I REALLY don't want to make the trip, but the two most experienced DIEP PS in my area seem to think that the big spare tire around my waist isn't big enough for two breasts, I ate a lot of carbs during chemo (because I was depressed and because everything else was too acidic) and am 5'6" and 150, most of it seems to be in my midsection. I just don't get it, as I know I've read somewhere on these boards about women who are 125 pounds getting DIEP. Yet I can't imagine why two separate surgeons would "reject" me. So anyway, I have read about the stacked DIEP at NOLA, which sounds like it would take care of this issue if needed.
Also, did anyone else do neoadjuvant chemo prior to BMX and immediate DIEP? One of the surgeons was worrited about putting me through such a long surgery and recovery, that there'd be higher risk of complications all around. Another PS, who doesn't do DIEP, said he'd be "there for me" if needed when I returned, but only if I stayed down there for at least 3 weeks. Everything seems so darned complicated!
thank you so much in advance!
Jenifer
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First, let me say if there are spelling errors all over in here, I am wrapped and on my ipad! So please don't think I am illiterate!
Caitlin- it sounds like your sil's chemo plan is good and aggressive. Obviously since she is her 2 positive she would not benefit from herceptin. Are you worried that her choice of doing lumpectomy is not being aggressive enough? Is her chemo upfront? I know when they did my chemo upfront their thought was to do a lumpectomy. But after having the 16 rounds of chemo, I knew I wanted to cut my risk of recurrance as far down as possible. I think it is a very personal decision. All of the research that I had done on mastectomy vs lumpectomy said that the survival rates were essentially the same. However, the risk of a local recurrance was greater with lumpectomy. I thought that if I could make a choice that would cut my chances of having to have chemo again, I was going to do it. In my mind, local recurrancew sometimes lead to regional and distant recurrances too! Your sil may yet change her mind... But if she doesn't just try to be as supportive as possible!
Jenlee, good for you on looking into all your options. I will see if I can answer some of your questions for you! First, the docs at NOLA do not require a local doc to follow you (although I believe Dr. Massey does). I did use a local PS to help me with some seroma draining, but did not need her early on. I pulled my own drains (the nurses at the center will talk you through it). I dis not have complications, but I believe that the women that are on here who did were all able to fly back to Nola. In the caee of complications, the Center will fly you back so that they can take care of you. The number of times that ou need to go to Nola will be a minimum of two. They do not require that they see you before your trip for your stage 1 - although many women will make that trip as well. They will do your consult and cta the day before your surgery and will give you a good idea of what kind of reconstruction will work the best for you by emailing pictures to them. And they are really good at seeing the best surgery for you! Okay - so you need to go for stage one (initial surgery to get the flaps) and stage 2 where they make revisions and contour as necessary. If you need to have tattoos you can go back for that as well. You are usually in New Orleans for 10 or 11 days total. They generally do not make you stay in town for three weeks! You may not even need to see your local PS, but maybe he would understand if he knew you had talked to a multitude of patients that had been there...? As far as women that had neoadjuvant chemo - BDavis is one of them. She should be along soon to answer that question. The things about our docs in Nola are this: they find fat where other docs have said they can't; they use two surgeons for bilateral and do so many that their operating times are significantly LESS than many other doctors; they provide transportation from the airport to lodging and to appts - making life just that much easier when you are there; they take care of your caretaker while you are in the hospital, providing a murphy bed for them to sleep as well as feed them; and last, but MOST importantly - they do beautiful work! And, where you are someone who is being actively treated for cancer - they will work to get you in much sooner. If you have not called them yet, I would do it first thing Monday. The travel is totally do-able. And really, we love our docs!0 -
Jenlee... I echo what Nordy has said... I don't think any of us jumped head first into this without thinking about the travel and is it worth it... BUT at the end of the day, after lots of research, I chose to go down there even after a local PS told me I did not have enough fat also (I am about your size)... I am one who chose to have an in person consult, only because I know me and didn't want to wonder if I had enough fat until surgery day. In the end, Dr Dellacroce determined I did not have enough ab fat for two replacement breasts (at my original size) but I did have enough buttocks fat.
I did have chemo before going down, but I had also already had my tumor removed by lumpectomy prior to chemo. So I finished chemo May 10 and had surgery July 21. I would have had it sooner, but I had a vacation planned and since the tumor was out, I had the luxury of delaying a couple of weeks... but ideally it should have been about June 25, and that would have been fine. (I was actually in Charleston that week on business).
And I am also one who had a complication. At my BMX, I developed skin necrosis (the layer of skin was too thin) and so once I got home, the right breast incision opened up a little and was leaking... The Center talked with me DAILY and I sent them photos every other day. After two weeks of leaking and trying various things at home through their guidance to stop it, they flew me back down (They paid for my trip). I then had a wound surgery and a week later had a DIEP flap to replace my right side (I did have enough for one breast). They were amazing!! And the end result is incredible... You can go to timtam (nowheregirl)'s photo gallery and see the necrosis and how they fixed it.
I went back in November for a stage II revisional surgery.
As for getting help at home... I had some lung issues (due to anesthesia) and my GP helped me there... I also pulled my own drains, super easy and painless... so I had no need for a local PS... The Center took care of me from afar and when that became too difficult brought me in. I must say I am the exception. I don't really know of anyone else who had a complication that warranted a return trip. There have been women who have a problem while still down there, and its resolved right away.
For timing... you should plan to go down two days before surgery and stay until one week and one day after surgery (you have a post op appt one week after surgery and can fly home the next day). For stage II it is much shorter.. I was there 5 days. Both times you do need someone to fly home with you, so for me, I planned to have my husband there for the tail end so I had an escort on the plane. When I had to return for the wound surgery and then DIEP, I flew in on my own and was there for 2 weeks alone... but then they flew my friend in to fly back with me.
The Center is like none other... The hospital is top of the line with extremely experienced nurses.. This is ALL they do and they do it well.. A year ago I was in your shoes, calling other women who had done this and combing these boards for information... When Nordy first suggested NOLA for surgery, I totally scoffed at it.. I live in NJ and have NYC and Philly within an hour from me... But I can 100% say that the doctors in NOLA are the BEST at what they do. My consult in May sealed the deal. After seeing the Center and hospital, and most importantly meeting Dr D, I knew this was for me.
BTW, I just met up with a local woman a little over a month ago who has since gone to NOLA for hip flaps... she must weigh 100 pounds soaking wet... and now has C cup breasts. so I am sure you have enough fat.
I'd be happy to talk on the phone with you as well..PM me..
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here's the Marena size chart (not the thing at the top, the table below it) http://marenagroup.com/InfoHelp/tabid/281/Default.aspx
I think they put me in XL or XXL (which was too big) in the Veronique and I wore XL in Marena, although I probably could have gone down to L in the end. My pants size before SGAP was 14-16, after was 14, after DIEP was 12 but I'm back to 12-14 now.
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Jenlee, I can echo what's been said. When I started down this path, I couldn't imagine traveling for this surgery! But the more research I did, the more I was convinced it was worth it. And I'm not sorry. I was rejected by every local surgeon as not having enough fat for DIEP. And I don't - but Dr. D found plenty on my hips. I flew down a couple days ahead of time so my husband and I could sight see and have a little fun and I flew home a week after surgery. I never needed any follow up from a doctor at home and I pulled my own drains with no problem. I did need some help around the house for the first week at home, but family and friends pitched in. I'm going back Wednesday for my stage 2, having surgery Friday and flying home Monday. DO call the airline and arrange for a wheel chair for your flights home. It's not that you can't walk, but it makes everything so much easier. You sail through security, board early, don't have to stand in lines when you're tired and no worries about being bumped or jostled.
I've seen a lot of discussion about the "marena" - I never got one last time and just wore the surgical garment they sent me home with the whole time. I certainly didn't love it, but I didn't find it actively uncomfortable. I liked how it zipped up the sides so I didn't have to pull a tight garment over fresh incisions. Is the marena that much better? Should I consider it for my stage 2?
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Marena is like Spanx but made for post surgery, especially post lipo. If the Veronique works for you, that's great. But the Marena is more comfortable, yes. Smoother fabric. And the garments with zippers aren't really meant to be worn for weeks. Marena makes both, actually. Zippered for immediately post surgery and pull on for about week 3-whenever. I won't say anyone needs a different garment than what they get at the hospital, but the Marena is much more comfortable for long term use.
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Hi Girls. Speaking of Marena..i have been wanting to post a tip but have been so forgetful.
I asked Dr. Marga's office to write a prescription for 2 surgical garments. Ashley said she never heard of such a thing but did anyway. I then ordered 2 marenas and sent in the script and reciept to my insurance and they accepted it and applied it to my deductable. I realize that not all insurance companies will do this but it is worth a shot! I imagine it must be the ones made specifcally for surgery such as Marena. I didn't try the spanx ones that i bought. Anyhow...just a tip.
have a great weekend and happy cinco de mayo and derby day. OH...HAPPY BIRTHDAY TO MY BBF (BEST BOOB FRIEND) ADEY!!!!
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Running- THANK YOU!
Momma2- BBF! Love ya. (c:
jenlee- What everyone said. Do you need radiation? That can complicate things... The best of luck in your decision. Nola is great, city and doctors. (c:
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