NOLA in September?
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Surfagirl: the NOLA docs will work with you regarding finances. My ins approved but it was out of network. They (NOLA) tell you what your out of pocket would be (a brand new car!) and then want to know what you can pay. Ask to fill out a financial means form if it's not offered. I filled it out, they reviewed, I gave an amount I said I could pay, they approved amounts for both Stage 1 and Stage 2. Money negotiation is not my forte, but they made it easy. The docs do not want to turn anyone away so they make the path as easy as possible.
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I second what cider said. I really struggled with the finances, not knowing what i needed to pay, not being able to pay etc... But NOLA was great and worked with me on all of it and I came out paying hardly anything. I was laid off a month before stage 1 so money was super tight.
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Surfagirl - NOLA is in network for very, very few people. But everyone's insurance pays differently. Thus, we have all paid differently. The good thing about NOLA is they WILL work with you on what you can afford. They DO NOT balance bill. What they do is have you pay a portion that helps cover the costs, but not anywhere what a balance billing would cost you. If NOLA balanced billed, I don't think most people would ever be able to go there. As for insurance - NOLA WILL take care of the insurance for you - they just require some additional monies from you, in general. BUT, I do know of one lady who's insurance pays so well, that she has only paid a total of $80 for ALL 3 of her stages in NOLA! I wish it was my insurance!!!
And as just a general statement here... I love people coming on here from other threads to share their experiences and ask for opinions, help, and finding friends. I just as often go to the Charleston thread to talk to ladies there. But, I for one, do not appreciate it when people come on here and try to dissuade people from using the NOLA docs - even though I am sure most of the time it is with good intentions. Why would you do that when this is a NOLA thread? If someone ASKS if we know anyone else that does flap surgeries that we have heard good things about (or quite often have had friends use that are very happy with... or I have probably consulted with!), I am only too happy to answer that, because the fact is that there ARE other very good flap surgeons. But the bottom line for me anyway, is that the NOLA docs excel at flap surgery. This is what they do. All the time. Every day that they are working. They are not doing lip implants and face lifts on the side. They specialize in microsurgical free flap breast reconstruction. That is it. Why take your Ferrari to the Toyota guy to fix? (And I own 2 Toyotas, so it is not a rip on Toyotas - they are very good cars, but if I could actually afford a Ferrari - I would be taking it to the Ferrari dealer to repair.).
But alas - this is Spring's thread and she may just reprimand me for being such a trouble maker!!!
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Nordy - I applaud your post and totally agree!! The title of this thread should say enough right?
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SurfaGrl- I hope Dr. S does not for get where he put my harvest when he goes to talk to you for your consult. I have Stacked at 9 am back end and abs I can't go any longer concave
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Ref, hang in there. You're doing better than I did... I needed 2 units of blood! (I had the stacked from front and back). It's all good. It will help you recover and feel better almost immediately. I was up and zooming around there like crazy! they had to hold me back! Keep the On-Q pain balls AS LONG AS YOU CAN stand the bolwling ball feeling. I always pulled mine too early just to get rid of the bowling balls (I had 2, one for front, one for back!) Those babies are worth their weight in gold...
Ro, cripes! 30 something cc is getting close, and good the color is chaning! I had the same issue, the pads did not help me either. Just know this, It Will Not Be Forever!! That drain WILL COME OUT!! It's days are numbered!
SurfaGirl, Welcome to our little thread, you are in the right place! I will add your consult to our list and maybe you can hook up with ppl while down there. I think there are several down mid June, it's a hot time! You can call right now and get hooked up with the insurance ppl at NOLA. They can start all that investigation before you go down I bet. Good luck with your consult! This board is a great place to ask questions.
BettyeE!!!!!!! My girl!!! So glad you came here to check in. You are doing very well it seems!! Good for you, I am so deeply glad for you. Your attitude has always struck me as amazing. Good for you for going to MDA - do you love them or what? I always thing that is THE place to go.... And we all wish you the best of luck getting into the trial. Please do check back with us!
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Nordy, did someone really come here and encourage ppl to do something else? (how strange). Why do I always miss these things. Maybe I immediately roll my eyes and ignore it?? Thank you for being vigilent!
Oh About Dirdre, SHE IS THE BEST!!!! Best at giving IV! Last time I was there for 2B, I had a long wait in front of me - I think Sandy was in surgery! She let me wait in one of those suite rooms with my DH so I was not waiting all alone. She even set up my IV there. I love SCSH. It is the way all patient care and surgery should be. I swear, I do not want to ever have surgery anywhere else. Big hospitals around here, treat you like a number, or cattle, or oh, you know what I mean...
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Me, too, Spring, wondering what I missed regarding what Nordy said! But since I tend to skim, I do miss quite a few postings!
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Spring - I am referring to the post above by Snobird which is as follows: "What state are you from surf a girl? And what insurance do you have? There are many on this forum and DIEP 2011 that can help you find PS that maybe in network for you. Let the providers deal with the insurance issues. Make sure you understand what your out of pocket expenses will be because some DOCS don't balance bill and some do. Good Luck and hang in there." The question Surfagirl asked was clearly NOT "help me find another doctor", it was about insurance issues specifically with NOLA. Sorry - totally irritated with Snobird's response.0
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I just wanted to thank everyone for their advice on final cup size and on CaringBridge and all of my other questions. I really appreciate ALL of your help! I feel like I'm swimming upstream and haven't found a calm place to relax yet. I have been going full speed ahead since last Friday when I finally got my NOLA date and I don't think I'll stop until I get to NOLA next weekend.
Thanks again!
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Nordy - glad you jumped in. I had similar feelings reading the post.
Surfagrl - welcome. I'll be down there on the 15th having my pre-op. Maybe we can meet for drinks. I'll be at Hotel Monteleone. Hope to see you soon!
Ref - I needed blood too. Not a biggy. Hope you get your shower today.
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Hey y'all, just wanted to let you know about the hotel decision I made for my stage 2 just in case it helps any of you. I was having a tough time deciding on a place to book as I'm going down with my husband this time and he really wanted to be in the quarter to have fun as much as possible--this will be our only "vacation" for a while so I am trying to make it count. However I needed to balance this with my need to have some privacy and a separate space in the hotel room for me if I just wanted to be alone--plus we didn't want to be trapped in a tiny little room just in case I need tons of rest. I stayed at the Homewood for stage 1 which was great but I really wanted to be in the FQ this time. I spoke with the manager over at the Monteleone and she said that their Riverview suite and/or Vieux Carre suite has a separate bedroom with a full bath, a separate seating room (Riverview just has a sofa whereas the VC suite has a sleeper sofa)--however the RV suite has a half bath as well so that is the one we opted for. It also has a small fridge and microwave. Normally these rooms are either $389 or $404 per night but the SCSH rate is $189 per night for either. I thought this was a good deal and would be just about the same as the cab rides back and forth from the Homewood to the FQ two times every day (the Homewood 1 BR site is $139 I believe). Both suites are a little over 550 sq. ft. so I think that solves the issue of the rooms feeling to cramped and small. I was also told the master bath is very spacious with a big marble counter, soaking tub and separate glass shower. Hope this helps!
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I just got back my latest lab results and it looks like the one unit of blood was enough to do the trick. They took out the IV. I hope they are taking out the breast drains and the Doppler wires tomorrow. If not, I guess they will come out at the post-op visit. Except for fatigue, I can't believe how good I feel. The discomfort from the implants is gone. I'm sore but it has been easy to manage with meds. I'm still amazed at what Dr. S has been able to do! By the way, the food here at SCSH is incredible. Everything you all said about the service here is absolutely true!
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hmmm, Nordy, I thought you meant someone was here trying to convince others not to do DIEP and GAP recons (!!) -- I imagined "Go for implants" or "Have a TRAM" or something! I don't mind Sno's response. I personally feel NOLA docs are the best, but if it was me personally, I would weigh the out of pocket costs with the doc I could get. Dr. Massey and Dr. Allen take different insurances (at least in the past) than NOLA docs. I am not sure I would consider any other Docs for this type of recon surgery, personally. HOWEVER, I would recommend everyone first start with NOLA and find out what "deal" they can get. There is no place like NOLA. There is no place like NOLA. There is no place like NOLA....
deno - that is a great deal at the Moneleone! Check out the roof top POOL!! It is to die for. Thanks for sharing.
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Thanks Katherine and Dragon
Spring - you are always the voice of reason, you know this right? It is not that I wouldn't ever mention another doc's name... I think anyone that knows me, knows that if someone came on here and asked the question of, "Hey, I really can't/don't want to do NOLA, where else can I go?", I would be one of the first to recommend a couple of other places that I had consulted with (at least for DIEP - not for hip/sgap - that would be NOLA for sure) or that I had friends go to that had good experiences and outcomes. My issue isn't with that, my issue is that that was not the question asked - the question simply asked about NOLA finances/insurance - not a referral elsewhere! Obviously it got my knickers in a twist! That's all!
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It's a fierce bunch and I'm glad I'm part of it!
I met with my radiation oncologist today. Apparently I am in a VERY grey area on whether radiation would benefit me or not. She needs to have a few questions answered on pathology, so that will take a few days. She seems to be pleased that I shouldn't need it, and I told her I don't want it! Of course, she said nobody wants it. I do feel good now that I understand the reasons it's been presented as an option. She also told me my med onc has decided to take the less intense chemo off the table, so I'm doing the dose dense A/Cx4 Tx4 regardless. I'm still slated for infusion Wed, but I guess I'll find out Monday when I'll be getting my port.
Laura and Dr Sullivan were kind enough to take a look at my stuff to help me understand what might happen if I get my flap radiated. It took her a week to meet with him about it. There is about 10-15% increased necrosis, a small chance of losing the flap, a chance of losing some skin, the flap becoming more firm/perky. My rad onc told me all those things! She was trained in Detroit where flaps are much more common that where I am. So I'm glad she has that experience. She was happy I did my homework and was impressed I went to NOLA. I should be able to get my Stage 2 in before the end of the year. Once I know my chemo plan I'll be calling to set it up.
I'm so grateful for everyone here! I'm up to Jan 2010 in this thread. I can't believe I'm reading it all but I'm still getting lots of good info. I'd sure rather read this than chemo. :P I'm getting to know everyone and I'm glad you all have put it out there.
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I think the post was benign... OMG... I am using medical terms to describe a post now... UGH.
Anyway, I don't think she was referring anyone to other docs, just suggesting she look at in-network docs and insurance coverage... I wouldn't get into a funk over it.... sometimes a typed conversation can be misconstrued without the inflection.
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Paula... what do I know, but I think since you'll have chemo before radiation, enough time will pass where you probably wouldn't lose the flap... I think you are at a similar risk as anyone having radiation (with more sensative skin) Your chemo will take about 4 months, right? And then you would need to wait another month to start radiation, so that's about 6 months post reconstruction.
I trust you'll be fine and then I'd have stage II after radiation, like 6 months after.
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Nordy, I love you and love that you love NOLA so much. xoxoxoxox
Betsy, benign post. LOLOLOLOLOLOLOL....giggles. You are the only person in NOLA in July!! How can this be!? We need some other women signed up to be your surgury buddies!
Paula - I am glad you are doing your homework re: radiation. I had rads prior to recon, but still my skin on that side is tigher and different (the flap inside was put in after the RADs). The other breast is more relaxed. Just make sure if you do it, there is a real advantage that you understand and feel is worth it. I personally hope you don't need it. I wish I didn't have to do it, though it seems benign (ha ha ha Betsy) enough while your're doing it, the effects last for 18 months in terms of the tightening. It has taken me another year after the 18 monts to get decent range of motion back in that area - I do yoga and have really worked at it. I read once that RADS can increase survival 5% for those who get it. OK , so I do the math, and (correct me all if I am wrong!) but does that mean that 95% of us who get it, don't have any benefit in terms of survival? So 95/100 women get radiation for nothing? I dunno. I go back and forth in my own mind about the rads. When I thought I might have bone mets b/c I pulled a rhomboid muscle in my back (yes, I push this old body to the edge!) I remember thinking, "I did everything, I did the rads, no regrets". Good luck deciding.
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Cider, I have read every single post prior to and since you had your surgery and your story has helped me tremendously. I am posting now to tell you that we are on the same journey, just in the opposite order. I had 4 treatments of AC every other week followed by 12 weeks of Taxotere. I was also on the borderline for rads as I had two fully involved lymph nodes and two lymph nodes with micromets. I was scared to death of rads because I knew I wanted to have reconstruction at some point. My team of doctors agreed that I did not need rads. I work full time for two lawyers. In the five months of chemo I went through I only called in sick two days. Both days were really because of fatigue rather than illness. Your doctors will prescribe anti nausea meds that will get you through your chemo. For me, the worst part of chemo was losing my hair and the extreme fatigue. Worrying about chemo seems to be very similar to worrying about this surgery before you go through it. My mind conjured up things that were far worse than the reality. I also encourage you to join a thread for chemo gals starting at the same time you do. The ladies on my thread laughed with me, cried with me and celebrated every milestone of our journey. Their love and support was priceless for me. I wiish you good health every day of your journey!
Hugs!!!
Susan
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Cider, I have read very page of this thread too! In fact I started reading it in Jan 2010 after I had my exchange surgery--expanders to implants. I stayed up into the wee hours for several nights reading. Kind of crazy maybe, but like you I felt like I was getting to know all the people and I wanted to find out what happened with everyone. I've said this before, but reading this thread literally gave me the courage to go to NOLA and have a flap reconstruction. It seemed WAY too scary, daunting, big, risky, whatever before that. But after reading page after page with women in the decision making process, then on their way, then home recovering, then so pleased with the outcome I realized I could do it too. I think it is so cool that a group of strangers on the internet empower each other in this way. Sorry for being sappy, but as to quote spring--just sayin'!
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Spring.. I think the rads benefit % varies per person... for some it might be a huge benefit, while for others, it is insignificant... For those with lots of nodes or skin invasion, rads are really important... for DCIS combined with a MX, it is almost no benefit... For Paula, 3 cancers and node involvement, it might be a good thing, not because of 3 cancers per se or the one node, but because she has both... and there was some other feature... can't remember now...
Paula...I think getting a few professional opinions and then decide for yourself... listen to their opinions and weigh the risks, but I would go to MOs not ROs necessarily... I might guess that all ROs will say you need it.All doctors are going to try to sell their wares.
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Oh... and when I was making my reservation with the Center, and I wanted both Dr D and Dr S, it was hard cuz Dr S is going to be out of town starting the 22nd I think... I couldn't do the following week because of that. and with 4th of July, maybe they are on vacation then too... And my surgery will likely take them all week to complete, how could they even fit anyone else in?? LOL
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June 23-25, 2011 is the FORCE conference and Dr. S will be there. That probably explains that.
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Oh... I meant July
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Hello all you NOLA gals!
I have great news! The bone lesions look like I have some healing
going on! I can't believe it. I will continue on the XELODA and try to get into the trial. I am so excited. I think I will just go out and celebrate. Just wish I was in NOLA!
Thanks to everybody for your good wishes. Love you all.
Bettye0 -
oh in that case.....no idea. lol
denouement - i bought the assets tank. i will let you know what i think of it. they must be really good because the target i went to barely had any left. just lots in sizes 2X.
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Bettye- Wooop, woop!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
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Outstanding news Ms Bettye!! Woohoooiee!
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Bettye, I don't "know" you, but I've followed all of your posts, and that is FABULOUS news! A celebration is definitely in order!!!
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