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NOLA in September?

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Comments

  • besa
    besa Member Posts: 289
    edited February 2012

    Caitlin- I am sorry to hear about the nodes but I am so glad to know the reconstruction went well and you are happy with the results.

  • besa
    besa Member Posts: 289
    edited February 2012

    Caitlin- I am sorry to hear about the nodes but I am  glad to know the reconstruction went well and you are happy with the results.

  • EvaM
    EvaM Member Posts: 272
    edited February 2012

    I just got my pathology report: Clean!

    My relief is a little tempered by Caitlin's results. Life is so unfair! 

  • bdavis
    bdavis Member Posts: 3,192
    edited February 2012

    Eva.. I remember on day 8 I was in the Quarter with my husband and we walked from the French Market back to the Homewood Suites (twice) so the next day I was exhausted.. I should never have made that walk. If you feel tired doing something, then stop.. be kind to your body. And I loved having my pjs too...

    So I finally broke down and added pictures to the gallery... showing my necrosis, wide open incision and then that breast as it looks today. Dr D's work is truly amazing, and its hard to believe the change in a few short months.

  • Momma2four
    Momma2four Member Posts: 133
    edited February 2012

    Betsy, are you talking about the gallery on Tim Tams site?  I have access but cannot seem to find specific types of pics. Like if i want to just view hip flaps...  I just get the whole list...not sure what i am doing wrong.  I also would like to post some pics.  I am not sure if i should post my pic of the open wound or maybe it might be too graphic.  But like you, i want to show how amazing things can end up being. 

    Happy Saturday.

  • VictoriaB
    VictoriaB Member Posts: 85
    edited February 2012

    Caitlin I am sorry to hear about your node. 

    Eva, I too remember walking the halls, then being really wiped out. That feeling did not last long. I never got silk pajamas and it was so hard to get out of bed! Everyone is right, stay an extra day if you need to.

    Betsy, whooaaaaa, I just got on TimTam's and wow what a difference. I have to figure out how to post to that site. I wish we could all just fast-forward to being done. 

  • bdavis
    bdavis Member Posts: 3,192
    edited February 2012

    Michelle... I have been going to the forum for months and still don't understand how it works...

    You can see in the picture where he replaced the skin (including part of the aereola) It needs a little tweak for shaping and a tattoo, but almost there.

  • Momma2four
    Momma2four Member Posts: 133
    edited February 2012

    Holy crap Betsy!  You look awesome now!!!  I am sure you were scared shitless at first when dealing with your open wound and necrosis..i know i was.  Well if you are brave enough to post i suppose i could...if i can remember how.  My boob is kind of strange looking right now though because of the complication but it is a journey and when i get to the end i hope it looks as good as yours! 

  • bdavis
    bdavis Member Posts: 3,192
    edited February 2012

    If you post, send me the link.

  • Momma2four
    Momma2four Member Posts: 133
    edited February 2012

    Betsy....i did it!!!!  whoo hoo, took me forever!!!

    http://tkt.hostned.ws/cgi-bin/forum/Blah.cgi?m-1311531887/s-15/

  • Cherrie
    Cherrie Member Posts: 921
    edited February 2012

    One of many questions coming your way.  Which doctor should be taking care of me when I come home from New Orleans?  (Primary, Plastic Surgeon, Breast Surgeon, etc.)  My BS said she could take care of drains, but not skin issues.  Just wondering what you all did.  Trying to put my ducks in a row. 

    Also, if my doctor is out of network and accepting what my insurance pays.......what about hospital, anethesia, etc.  Are these extensive costs????

    I am close to booking my flight now.  With surgery on a Friday, I am looking at the following Sat.  How was the flight home?  If I fly into Detroint and drive 1 1/2 hrs. in a car, is that easier than loading onto a smaller plane and getting closer to home?  What will my mobility and pain be like on this day?

  • bdavis
    bdavis Member Posts: 3,192
    edited February 2012

    Cherrie...

    The PS you use in NOLA will be treating you from afar, using email, telephone, sending photos etc... They can assist you if you end up needing something at home, or fly you back down if required. My primary care doctor was my biggest help as I developed a bacterial infection from my port and had a dripping breast... he couldn't do anything about the breast, but NOLA flew me back down to take care of it. Here I am 3 months poststage II and have a seroma... My local BS was willing to see me and drain it, but NOLA wanted it done with US, so I am having it done this Wednesday with the radiologist.

    The fees are all separate. There is the doctor fees, plus hospital, anesthesia etc. My hospital bill was covered separately 100%. The anasthesthia bills separately... it was like $5000 I think. Mine was covered 100% as I had reached my out of pocket maximum with Dr D.

    I think you are better off flying and then driving. I live 35 minutes from the airport, and it was fine.. just have a small pillow in the car to protect you from the seatbelt.

  • besa
    besa Member Posts: 289
    edited February 2012

    bdavis and mamm2four- both of you, what an incredible journey!  I thought I had a difficult path (a messed up initial DIEP reconstruction done locally which needed many revisions) but compared to me, what you have gone through is much more compelling.   I have seen so many photos of beautiful reconstructions -   but I was not dealing with that.  To see photos of  problematic reconstructions  and then to see the beautiful results that the NOLA docs have created --- thank you for posting. 

  • Cherrie
    Cherrie Member Posts: 921
    edited February 2012

    Betsy,

    Thanks so much for your quick reply.  I too will reach my out of pocket maximum very quickly.  I was just worried that there were charges that could surprise me.  

    I will contact my primary and get this going.  They don't even know yet.

    A small pillow it is.  What about those 3 seater planes.  Where did you sit?  Were you in a lot of pain and able to get up and down if another passenger needs to get out.  Did you ask for extra leg room?  My mind is work fast pace.

    What is a seroma?  I am sorry that you have to go through this after everything so far.  I will be thinking of you this week.  Take care of yourself.

  • bdavis
    bdavis Member Posts: 3,192
    edited February 2012

    Cherrie...

    A seroma is a fluid filled pocket... its nothing, but feels like a small water balloon under my skin, so I will have it aspirated and then put a lot of compression on it and hope it doesn't refill.

    After my first surgery, I asked for the bulkhead seat (front row) and I sat in the aisle seat because scootching in to the window would not have worked.  I had my husband lift my luggage to the overhead and had priority boarding (you need to ask for this)... so I was first on the plane.. i was just a little concerned someone would bump into me as I was on the aisle and in the front, so I sat sort of protecting my breasts as people boarded.

    The next month, after my DIEP, i was a last minute booking so I had a normal seat... it was fine. It would have been better to have a little extra legroom because you have to contort yourself to get out of those seats.. but mostly, get an aisle seat.

  • bdavis
    bdavis Member Posts: 3,192
    edited February 2012

    BTW.. am I allowed to post that link to the gallery?? Or have I now given anyone permission to go there?

  • Momma2four
    Momma2four Member Posts: 133
    edited February 2012

    Betsy, when I clicked it I had to put in the password and user name so I think we are ok.



    cherrie, agree with Betsy, get bulkhead if you can!



  • jacee
    jacee Member Posts: 219
    edited February 2012

    Betsy- I think it's ok to post that link, as I think it will ask anyone who isn't registered for a login & password. I know the mods of that site want to make sure anyone who accesses the site has gone through the proper channels. I think as long as you don't give anyone access through your id & password it is ok.

  • Djweinstein
    Djweinstein Member Posts: 60
    edited February 2012

    Caitlin--I had breast cancer at 29 and had 6 months of chemo and 2 of radiation.  I got my periods back...how old are you?  I also (2 years ago) froze some eggs and some embryos (with a donor...as I'm not married yet).  So if you want to talk about any of the above, PM me!

  • Djweinstein
    Djweinstein Member Posts: 60
    edited February 2012

    Hipsters--a question for you-- I definitely feel fluid one one side of my butt (sorry for the shorthand.) It's been 2 days without drains...I only feel it when I lie down...and I don't see any bump forming.  I know many of you have talked about seromas...I'm wondering if this will likely get worse or since I don't see a bump if it will stay at a level where it's not a problem...

    Also--for DIEP and Hipsters--I'm getting my Stage 2 done at exactly 3 months. A woman who I met who got the SGAP in South Carolina told me that her docs recommended waiting more than 3 months for Stage 2 so the blood vessels could be more secure.  This kinda freaked me out as I'm all set on my date and have plane flights booked etc.  Any advice on this would be great!

    Thanks! 

  • tigsun
    tigsun Member Posts: 162
    edited February 2012

    I had chemo at 29 also.  My periods never stopped. 

  • Nordy
    Nordy Member Posts: 1,106
    edited February 2012

    DJ - Lots of women get their stage 2's right at three months... and I know of someone who went at 10 weeks. The docs in NOLA would not let you schedule if it was going to be detrimental to your reconstruction. The docs in South Carolina may have a different protocol. You can always call or email the Center if you are worried - but I really think you are okay. For me, I did wait longer, but had another surgery in between (ooph/hyst) so needed the recovery time from that. How are you, by the way? It was great meeting you in NOLA!!!!

  • Nordy
    Nordy Member Posts: 1,106
    edited February 2012

    Oh, as for the seroma - keep an eye on it and try to keep it compressed. I always used to say, if you tap your but and it moves like a waterbed, you might need some drainage!!! It may just stay achey or it may get worse. Mine always got worse... LOL... but that is me and I am juicy.

  • bdavis
    bdavis Member Posts: 3,192
    edited February 2012

    Dj... I wouldn't worry about the stage II at 3 months.. The longer you can wait the better in my opinion because you will still be swollen at 3 months BUT I have never heard anything about secure blood vessels. I had my stage two 4 months post HIP flaps and 3 months post DIEP flap. I think most women have stage II at about 3 months. I will now wait 14 months for my next stage II so all swelling is gone.

    As for seromas, I think the concern is that it will put pressure on the incision from the inside and potentially bust it open. I think it is normal to continue to have swelling which might make you think you have fluid, but without a bump I wouldn't worry... I think you'd clearly feel a problem seroma. My seroma feels like a small water balloon under the skin.

  • Del11
    Del11 Member Posts: 398
    edited February 2012

    In medical billing, 3 months is the "global period" for surgeries, meaning if you have anything considered "post-operative care" within 90 days of the first the doctors can't bill separately for it. It's possible insurance companies would claim that stage 2 was dealing with post-op issues.

    I'm not sure that's what they were thinking, but it's possible, so take it with a grain of salt...

  • EvaM
    EvaM Member Posts: 272
    edited February 2012

    Hi all. Leaving the hospital today and heading back to Homewood Suites. I have my post-op appt on Wednesday and fly home on Thursday. I NEVER would have imagined two or three days ago how much better I'd feel at this point (day four). I'm showering, getting in and out of bed with no problem, walking normally and doing all kinds of regular things. This morning I enjoyed sitting in the lounge with a cup of coffee and the sunday paper. I felt Iike a normal person! The care here has been just exceptional. I'm a little nervous about handling all this without all the great nurses. But my sister is with me and she's a real trouper. I think I COULD do my own drains, but I'm really glad I don't have to. So far everything is going smoothly. I hope I don't have complications, but I know it's always a possibility. Thanks for all the advice. It's been VERY helpful

  • CaitlinB
    CaitlinB Member Posts: 88
    edited February 2012

    Thanks for all of the information and support.  I am 40 years old and will be turning 41 in September.  Dr. Sullivan suggested freezing the eggs but we are pretty tapped out financially.  I am coming around to the idea that we may only have 1 child. 

    Got my pathology report from Dr. Sullivan by phone on Friday.  Two nodes (out of 19) are cancerous, plus a tumor in my breast that may or may not have been found in an MRI.  I am so relieved I did the BMX and that all of this has been found. Not looking forward to the chemo.  Did you get wigs, scarves or hats for hair loss?  I will also need to do a PET scan to see if it has spread elsewhere.  

  • bdavis
    bdavis Member Posts: 3,192
    edited February 2012

    Hi caitlin... Just so I understand, you do not just have DCIS now, correct. They found IDC? And then two positive nodes? I had chemo.. and I bought my wig while I still had hair, before I even started chemo. It was the best way for me to get hair as close to my own as I could. Insurance covered $500 of it, so it was only $50 for me. I also wore scarves when I worked out and went to the beach. A wig would just be too hot.

  • CaitlinB
    CaitlinB Member Posts: 88
    edited February 2012

    Hi Betsy,

    I have't seen the report yet but I believe it is IDC (the tumor was 1.1cm )with two positive lymph nodes.  It was also found behind my nipple so I am having those removed on Tuesday. 

    I have met a couple of really nice women in NOLA (the nurses are great) and of course Eva M. 

  • Ysa
    Ysa Member Posts: 32
    edited February 2012

    Betsy, I think it's a Marena.  = )

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