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NOLA in September?

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Comments

  • Barbmal5
    Barbmal5 Member Posts: 76
    edited April 2014

    Jaimieh I'm so sorry & shocked for you. You really sound like you're on top of it & have a good plan.  Was it you who found the lump? My breasts are so different (& numb) now I don't think I'd recognize a new lump if I found one. Why am I so ignorant? Am I the only one who thought once I had the mastectomy I'd never have to worry again? I don't even have a Dr following me. No medical person has even seen me since my surgery a year ago. I'm in the medical field....shouldn't I know this? Holy Moly your post was a huge eye opener for me. I'm saying a special prayer for you, hang in there.

  • Minnesota
    Minnesota Member Posts: 604
    edited April 2014

    Jaimieh,

    I haven't been on this board for months and months and months (and months). I have been missing it, for several reasons that I just don't feel like getting into, now that I've seen your post. I am so, so sorry you are having to deal with this again. I've been feeling so out of things as I've been skimming over the last couple of months of posts, trying to catch up a little on what's going on in "NOLA in September." So many new names, tho all of us just at different phases of a journey that will impact us all our lives. I recognized only a couple names - like BDavis and Springtime (Hi guys!), and now you . . . And just a couple pages back, I read the discussion some were having about wanting to be able to get past worrying about recurrence. But it is so, so important that this appears to be only a local recurrence for u. Thank goodness for that! But crap about the chemo and rads again! I remember you were going thru your recon right about when I was going thru my second, I think. There's another gal that was posting when we were who has also had a local recurrence and will be starting her rads in 2 weeks. Hers is also back near the chest wall. I think it's impossible for the surgeons to differentiate breast tissue from chest tissue, so they just can't know for sure if a few of those crappy cancer cells might be lurking back there. I'll be thinking of you on Wednesday. Good luck, Jaimieh. (Okay, now I just had a memory (could be faulty) that we even had one of our surgeries on the same day and I was kind of calling out your name in pre-op, thinking you might be there, but i don't think you were, and I think the lady behind the next curtain probably thought I was nuts).

  • bdavis
    bdavis Member Posts: 3,192
    edited April 2014

    Eve... That is really discouraging to hear that someone had a recurrence on the chest wall... I have asked and asked and asked about monitoring, and have been told over and over again that recurrence on the chest wall after MX just is so unlikely. They all say its more likely to recur in the nodal area or on the skin. I even was assured that the fascia was removed during MX, so no breast tissue remains on the chest wall. But that little voice in my head has a big question mark. I WANT to believe that is true, but have a hard time trusting that....I have always been so diligent about my health, I don't know if I should pursue a doctor who agrees with me, or follow the advice of all the other docs. Part of the problem is is that doctors all have their own philosophies and couple that with my local doctors (BS and MO) who don't really understand a DIEP/GAP flap. If we had implants, the chest wall is pushed to the outside and so feeling a lump is easier. If we were to get a recurrence on the chest wall, it is happening many inches below the skin. Ugh.

  • mags20487
    mags20487 Member Posts: 1,092
    edited April 2014

    I am so excited for you Betsy!!!  I have always looked up to you for your courage, strength and endurance through the process.  I cannot wait to have my LAST appt on the calendar!  Hope those tats turn out perfect!

    Maggie

  • bdavis
    bdavis Member Posts: 3,192
    edited April 2014

    Aw... Thank Maggie. I am very excited. Truth be told though, I may need a little more fat grafting on the left. Vinnie assures me that Dr D can still do it after tattoos... And Dr D isn't sure if he can get anymore lipo'd fat. I guess there is good fat and not-so-good fat. I think he has used all of the good accessible fat. If he could only lipo the fat that is hiding in and amongst my organs I'd be all set.

  • Minnesota
    Minnesota Member Posts: 604
    edited April 2014

    Wish we could get a little fat grafting without going Under!

  • koalabear
    koalabear Member Posts: 5
    edited April 2014

    Hi all, after weeks of lurking and learning, I've finally the decision to go to NOLA! My stage I NSM extended DIEP (possible GAP - depends on in person consultation) is penciled in for May 20th. 

    About me - I'm BRCA 2+, have known for about 4 years now. After two MRI biopsies, and now a request to surgically remove a suspicious area (even though the biopsy came back clean), I've decided to go the PBM route. Thankfully, no DX, married, no kids yet...possible IVF PGD later this year. 

    Thanks so much to everyone who has posted about how to contact the center, insurance issues, what to bring/prep, what to expect, etc.  This thread has been so incredibly helpful in keeping me sane, knowing that I'm not the only one with a zillion questions and anxiety to boot. 

    I'm sure in the coming weeks I'll have a few questions - looking forward to getting to know you all and sharing my experience as well!

  • Zenful
    Zenful Member Posts: 394
    edited April 2014

    Welcome, koalabear. You won't be disappointed in NOLA. I am 2 months out from Stage 2 and  am still amazed every day at my beautiful breasts. I was in awe immediately upon waking from my Stage 1, but the magic really happens after Stage 2.   You will be in great hands. 

  • bdavis
    bdavis Member Posts: 3,192
    edited April 2014

    Welcome koalabear... PM your date to Springtime and she can add you to the list above. Also, we have a FB group if you are interested. Let me know. You will love NOLA... who is your PS?

  • Dragonfly1976
    Dragonfly1976 Member Posts: 1,552
    edited April 2014

    there is a Facebook group?? 

  • bdavis
    bdavis Member Posts: 3,192
    edited April 2014

    Yes... You are in it.

  • bdavis
    bdavis Member Posts: 3,192
    edited April 2014

    Or, you were. PM me and we can reconnect.

  • bdavis
    bdavis Member Posts: 3,192
    edited April 2014

    Just friend requested you

  • Dragonfly1976
    Dragonfly1976 Member Posts: 1,552
    edited April 2014

    thank you, I got it :-)

  • Springtime
    Springtime Member Posts: 3,372
    edited April 2014

    Betsy, I had a request from KooKoo621 about getting added to the FB group. I'd like to put a process at the top of the page on what people should do to get hooked up there. I would recommend they PM you here, and then you can handle. Otherwise, I'd have to tell them to Friend you on FB, which would require publishing your whole name here. 

    Jamie, :((  I am so sorry you have to go through any of this again. I think having gone through it all once is more than enough!  

    Betsy, if they take the fascia, is there any change breast tissue is under that? It seems unlikely to me, given that's a muscle covering...

    Koalabear, I added your May 20 surgery to the listing above. 

  • Minnesota
    Minnesota Member Posts: 604
    edited April 2014
    1. Hey, Dragonfly!!!!! Hi, Koalabear! Hi Zenful! Love all your names! (I don't know why there is a 1) over there, but I can't get rid of it)
  • Minnesota
    Minnesota Member Posts: 604
    edited April 2014

    People were discussing restaurants a while back. I want to add Muriel's on Jackson Square. Corner of St. Ann and Chartres. Great food. Awesome view over the Square from outside balcony - go up there after lunch or dinner or have a drink out there. Visit the "seance room." And best of all, it's haunted!

  • bdavis
    bdavis Member Posts: 3,192
    edited April 2014

    Beverly... I messaged you, but I will also say here that if someone wants to be part of the FB group, please PM me and we can exchange information privately.

    And about the fascia, its my understanding that all breast tissue is on top of the fascia, so if the fascia is removed, then the chest wall should not have any remnants. But its an excellent question for ones BS.

  • koalabear
    koalabear Member Posts: 5
    edited April 2014

    Zenful - woohoo! I hope I have as good results as you. How are you feeling?

    Springtime - thanks for adding me to the surgery list

    Everyone else - thanks for the warm welcome! I'm excited to be here

  • Cherrie
    Cherrie Member Posts: 921
    edited April 2014

    koalabear- you will be in the hands of very skilled surgeons

    Betsy- tattoos already!! You go girl. You have always given me great info. Thinking of you. Hope all is well. 

    I am going to Dr. Massey's office on the 28th, in Chicago, for final pictures that I promised I would do for her. I haven't seen her in 6 months. I will miss her so. This talk of recurrence is scary to me. I had to go back for an ultrasound after my MRI this year. The feel it is fat necrosis, but are rechecking this Spring. 

    I loved Commanders Palace.

  • bailey2
    bailey2 Member Posts: 21
    edited April 2014

    I was happy (and grateful) after my first surgery. Dr Stolier and Dr. D. are very skilled surgeons and fantastic. I agree with Zenful--the magic happens after the revision surgery. However, is it possible to still be swollen in certain spots 6 months out from the DIEP revision? 

  • Minnesota
    Minnesota Member Posts: 604
    edited April 2014

    Bailey, I bet that is possible. That would be a good question to ask on "Ask the Doctor" that Springtime lists up above. It would also give you an opportunity to say hi to Dr. D and gush about what a great job he does!

  • cider8
    cider8 Member Posts: 472
    edited April 2014

    Jaime, I'm so sorry to hear about the recurrence!  It sucks!!!

  • bdavis
    bdavis Member Posts: 3,192
    edited April 2014

    Bailey... you bet. Dr D asked me to wait 9 months after stage II for another revision. In actuality, I waited 14 months due to insurance issues... I say the longer the better.

  • Jaimieh
    Jaimieh Member Posts: 925
    edited April 2014

    Cherrie~ It is VERY scary BUT it's best to check everything out.  

    So lumpectomy went well yesterday I am up doing things today :).  My port was placed yesterday so I am sore on that side but now comes the wait for the pathology and margin stuff....

  • Zenful
    Zenful Member Posts: 394
    edited April 2014

    koala, I am feeling great!  Things are starting to soften up nicely, so they are beginning to feel very natural and like my own.  At first they feel a little clunky. 

  • Pamela44
    Pamela44 Member Posts: 114
    edited April 2014

    Hello everyone! Jaimie I'm sorry to hear about your recurrence.  I wish you the best with your treatment.

    Ladies please help. Two weeks ago I felt a small lump under the skin not in the breast but higher on my chest. I never had breast ca (it was a pBM I have ovca). Have any of you had this and it turned out to be fat necrosis? It is still there two weeks later and feels sort of hard.  It might be in the region of the axillary tail or more medial. What do you think? Thanks.

  • MartyJ
    MartyJ Member Posts: 819
    edited April 2014

    Pamela - I had a fat necrosis above the soft tissue of the breast (upper pole) - hard to describe.  It was also painful.  Ultrasound confirmed that it was necrosis.  Because of the way Dr M was trying to even out my incisions, she didn't want to touch it during my last revision.  I could still feel it for at least a week after and then it just disappeared.  Do not panic, get it checked.

  • lastar
    lastar Member Posts: 553
    edited April 2014

    Pamela, last summer there were a few of us that were about a year out from surgery that all had lumps that turned out to be oil cysts from necrosis.  This can happen to anyone that has experienced some trauma to the breast.  I happened to be travelling to the south after I found my lump, so I had an MRI and went to NOLA. Dr. Stolier read the MRI when I visited.  BTW, I have what is basically a failed flap which happened after Stage 1 and was not dealt with at Stage 2, so I have a lot of necrosis that will have to be dealt with eventually.  Because my local docs don't deal with flap reconstruction, they saw the necrosis in my breast and the thicker skin from the shrinking breast and thought I had IBC and wanted to biopsy right away.  Dr. Stolier said that this is one of the reasons that they don't suggest follow-up imaging -- it will lead to a lot of unnecessary biopsies.  However, oil cysts seem to be common so your doctors will probably be able to identify them easily. I have one that is on my chest above my breast and it is getting noticeable, so I may have to have it aspirated eventually.  It will be good to get it checked out and get this behind you!  

  • Pamela44
    Pamela44 Member Posts: 114
    edited April 2014

    thanks ladies. So the appearance of this one year after reconstruction is consistent with fat necrosis or oil cyst? And it just disappears? Thanks.

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