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NOLA in September?

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Comments

  • Soccermom4force
    Soccermom4force Member Posts: 311
    edited June 2014

    betsey, I missed the conference too this year (2nd time in 9 years) :(

    Maybe next year we can all get together ?!

    Marcia

  • eloqui
    eloqui Member Posts: 37
    edited June 2014

    Hi all- 5 weeks out from a Stage I hip flap and have noticed a lump in my prophylactic breast for a couple weeks now. It's about 1/2 an inch above my inframammary incision site and medial, right next to the sternum. 

    Went for an US on Friday and the radiologist couldn't see the lump on ultrasound.

    Anyone have anything similar?

  • dixie60
    dixie60 Member Posts: 19
    edited June 2014

    I am about 2 months out from stage 1 hip flaps and I get lumps and dense spots for a while and sometimes they soften and sometimes they linger. I have lumps that sound like you are describing on both sides, sort of at the top of my cleavage. I think that’s an area where the flaps are secured, and some scarring developed inside around it. NOLA said they will address all those firm areas in stage 2. I’ve decided it is all part of healing and I am determined not to worry about any of it.

    Anyone else?

  • lastar
    lastar Member Posts: 553
    edited June 2014

    It could be necrosis. I don't know if necrosis shows up on ultrasound, but mine showed up on MRI.  Swelling will respond to massage and resolve, but necrosis just gets harder.   

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

    Marcie... I am headed down there next week, and when I spoke with Vicki about what I will pay, we discussed just this.She told me that when they contact the insurance company prior to surgery, they then quote the patients a price. And if they agree to the price, then it is a firm amount. If someone prefers to wait and see what the insurance company pays, then they are susceptible to items not being covered. And for this reason, I think most, or all, decide to pay or negotiate, and then pay. I told Vicki that there is a lot of concern about the bills in this forum, and that they should try to be clearer about how it all works. So assuming you made an agreement about price and have met that quote, then I wouldn't worry. Just call her tomorrow.

  • MartyJ
    MartyJ Member Posts: 819
    edited June 2014

    Necrosis does show up on an ultrasound.  Mine did.

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

    Happy Birthday Marty!

  • Zenful
    Zenful Member Posts: 394
    edited June 2014

    Marty, it's your birthday?  Hope you had a wonderful day!

  • Marcie47
    Marcie47 Member Posts: 163
    edited June 2014

    thanks Betsy, I did make that agreement on the amount agreed so I will call tomorrow, not sure why the center would send that bill if that is their policy:(

    Will keep you all posted.

    Thanks 

  • MartyJ
    MartyJ Member Posts: 819
    edited June 2014

    Thanks for the birthday wishes.  We had a delightful day with great weather and low (for us) humidity.

  • Marcie47
    Marcie47 Member Posts: 163
    edited June 2014

    happy belated birthday Marty :))

    I wanted to let all the girls know that I just got off the phone with Vicky and Gina at the breast center and they both said it was a mistake for me to have received the bill. It has not been paid by blue cross but should have gone to the attorney, "patients will not receive bills (other than the agreed upon amount) if their insurance information is current and up to date when they come to the center"

    Hope that helps anybody on the fence about taking this leap of faith :)

    Good luck to everyone having or who have had their surgeries this year.

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

    Marcie...fabulous news

    I just postponed my next surgery which was schedules for July 29th...now I am on for aug 27th with Dr M in Charleston.  So much going on with our 2 businesses and the back to school season is bonkers so this gives me an extra month to prepare!

    necrosis shows up on the Ultrasound for sure.  I have tons of it on the top edge of my leftie!

    Maggie

  • thinkpink4ever
    thinkpink4ever Member Posts: 83
    edited June 2014

    Great news, Marcie!  I know you're relieved...

    One love,

    tp4ever

  • Zenful
    Zenful Member Posts: 394
    edited June 2014

    Marcie, you must be SO relieved. I imagine there were many women worried and waiting to find out how it turned out. The Center is so amazing. I hope they are always able to continue serving women at the level they do now. 

  • tlbradyful
    tlbradyful Member Posts: 44
    edited June 2014

    Marcie, thank you for sharing your whole experience. The financial burden is so great. I am happy you were able to clear this up for all of us. :)

  • Marcie47
    Marcie47 Member Posts: 163
    edited June 2014

    I am so relieved and I agree about sharing our experiences and how important it is to do so, glad I was able to share good news :) 

    The center is amazing and I am thrilled I was able to go there :)) 

    Have a great week to all!!

  • eloqui
    eloqui Member Posts: 37
    edited June 2014

    Dixie60- that makes me feel a little better. Especially if you have them on both sides, that would seem more likely to be a surgical change. Did NOLA tell you that they thought it was related to surgery?

    BMX done, starting chemo in a week. Thought I had everything squared away until I felt this new lump! 

    Marcie- I'm so glad that your insurance issue is resolved!

  • Cherrie
    Cherrie Member Posts: 921
    edited June 2014

    Marcie- I am so happy this was resolved. I am sure it was a hard time waiting to call the Center. I would have been a basket case. 

    Marty- Happy belated birthday to you. Hope it was great.

    My ultrasound did show necrosis. It has happen to many of us.

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

    Hello all! 

    I just wanted to report that I used to get a personal email when someone sent me a private message from BC.org to be added to the list, above. It seems lately this is more sporadic than reliable. ugh. I don't think I missed anybody. 

    Also, although I am not here often, I wanted you all to know that I will actually be out of the country for 2 weeks. I hope there is not a burst of new surgeries scheduled while I am away! Please mention this to women if they appear here and wonder what happened. I will be back after the 4th of July. I don't know how much internet access I will have.

    And one more thing! I have owned this thread since 2009, so it's been 5 years. I really don't mind adding names to the list and am happy to keep doing that, as I believe this is a very important way to find out and reach out. A list like this one helped me personally discover my options at the center, see pictures, and find out my limited options locally were not all I had to pick from. ALSO, I was able to find other women to meet up with while in NOLA, the 4 times I went, and I also have a bunch of friends from the experience. So this is an important place I truly believe in.

     It has been since 2008 when I had my first surgery, and it is hard for me to remember details, and things have also changed in the mean time. If you have more recent experience, I feel it is more valuable.SO SO SO. IF there is someone here who would LIKE to take this over, and feels a call to do so, please contact me directly via PM and we can discuss. Love Love Love!!

  • lastar
    lastar Member Posts: 553
    edited June 2014

    I'm looking for info on travelling to Charleston to have my next surgeries with Dr. Marga.  If any of you angels have some tips for me, would you mind posting at this topic?  Thanks!  https://community.breastcancer.org/forum/44/topic...

  • dixie60
    dixie60 Member Posts: 19
    edited June 2014

    Hiya! I am now 10 weeks out of my GAP. I have had to have 3 aspirations, one every 2 weeks, at the local hospital since my drains came out. NOLA says I have to have another aspiration in 2 weeks. Has anyone else had to have repeated aspirations? How many? for how long? This last one removed 75 ccs on one hip and 90 ccs on the other.

    I’d really like to be over and done with this part…I really don’t like going for the aspirations. The local hospital makes me feel like a real patient, if you know what I mean. It is such a different experience from being at NOLA. I have spent so much time trying to get past the cancer part and focusing on getting strong and well and like a regular girl again (with my new boobs and my hair growing back) and every time I go in to the local hospital, even with a sunshine attitude, it feels crappy. So any info about how much more of this I am in for would help.

    The support on this board is a real source of comfort…many thanks 

  • lastar
    lastar Member Posts: 553
    edited June 2014

    I had aspirations until my Stage 2 surgery, which I scheduled 12 weeks out from Stage 1.  Is your next surgery scheduled?

  • dixie60
    dixie60 Member Posts: 19
    edited June 2014

    Not yet. They are talking about September or October. I am having an ooph next week and I have to heal from that first….

    Did they do something special in Stage 2 that helped the fluid buildup?

  • lastar
    lastar Member Posts: 553
    edited June 2014

    At Stage 2, you get a bottom lift that closes up the "shark bites" so there is nowhere for that fluid to accumulate.  

    Best wishes on your ooph -- maybe some down time on your back side will help to slow the fluid accumulation (we look for those silver linings where we can find them).

  • dixie60
    dixie60 Member Posts: 19
    edited June 2014

    thanks!

  • trainertam
    trainertam Member Posts: 114
    edited June 2014

    Just wanted to say hello to all of you wonderful NOLA and future NOLA gals. I had Double GAP surgery in 2010 with Dr. D (or as we liked to call him Dr. Dreamy). If any of you see the scrap book in the lobby I would invite you to feel free to make you own appreciation page to be added. I delivered that book to them in 2010 and I'm sure there are plenty more pages that could be added! I will be there at the end of July for a speaking engagement. After my life was turned upside down and there was no hope, Dr. D and the team at NOLA gave me life again. I wrote a book, coming out next month, "Pink Lemonade" and I"ll be there to talk and sign books. There is a whole chapter devoted to "The REAL Saints of New Orleans".I would love to meet you if your in town. Just know this, it is ALL worth it, and you can get no better care in the world than at the NOLA Breast Center!!!!

  • Zenful
    Zenful Member Posts: 394
    edited June 2014

    Tammy, good luck on your book. I love the title!  I can already imagine the positive vibe of your book based in the title.  I also had Dr. Dreamy and couldn't be happier. 

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

    Dixie...I had to have my gap site aspirated 2 times after surgery.  My gap was in March and in May Dr M had to do another surgery to remove a large pseudo bursa that had formed.  it is definitely unpleasant to say the least to have the aspiration done.  The first one they got out 200cc of fluid and the second time it was over 420 cc's...ouch.  Try keeping the area compressed with washcloths under the compression garment.  I  would roll them up and fill up the sharkbite.   Hope it gets resolved soon

    Maggie

  • dixie60
    dixie60 Member Posts: 19
    edited June 2014

    thanks! I got my Stage 2 date--September 17, so no matter what it'll be resolved by then!

  • thinkpink4ever
    thinkpink4ever Member Posts: 83
    edited June 2014

    Awesome, dixie60!  Who's your doc?  My stage 2 should be sometime in September as well.  Hope to get it scheduled next week when I go for my second post-op visit with Dr. Sullivan...

    One love,

    tp4ever

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