Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.
Fill Out Your Profile to share more about you. Learn more...

NOLA in September?

Options
1902904906907908

Comments

  • besa
    besa Member Posts: 289
    edited September 2015
    Options

    LAStar that is my understanding also but depending on where fat grafting is added they can be in the same area. I was told, at least in my case, that in terms of radiology, the oil cyst can either be absorbed or be partially absorbed (so it becomes smaller) and what is remaining eventually becomes calcified. When it becomes calcified I was told the appearance changes on a mammogram. I was also told by Dr. Rupley that oil cysts can appear years after reconstruction.

  • PinkHeart
    PinkHeart Member Posts: 271
    edited September 2015
    Options
    Interesting. Thanks Ladies! 😊
  • klanders
    klanders Member Posts: 152
    edited September 2015
    Options

    I was the unfortunate one to have the cancer come back. It was a total shock because I was confident the lump was going to just be fat necrosis. I had cancer in both breasts initially so I felt that by doing the DIEP and giving up both breasts I wouldn't have to deal with this again. Wrong.

    When I had my BMX at NOLA Dr. Gray somehow did not get clean margins in the left breast. He had to go back one week later and remove more skin/tissue. Lesson #1 - I should have waited for Dr. Stollier to be available. (Hard to wait when you have active cancer.) Dr. Gray is just a general surgeon and not the breast expert that Dr. Stollier is. Lesson #2 - I should have had radiation. My medical oncologist or NOLA should have told me that because they didn't get clean margins in my left breast that I needed to have radiation to take care of anything microscopically that was missed. I wasn't told this until I saw a new doctor when dealing with this recurrence. Lesson #3 - if they tell you to take the hormonal meds, take them! I didn't react well to the tamoxifen so instead of giving me alternative options my MO let me quit and do supplements instead.

    So two years after I discovered the first cancer, almost to the day, I felt a lump by the incision site where Dr. Gray went back in to get the clear margins. That was this past February and I'm still in the middle of the cancer mess. I've had surgery, chemo, and I'm half way through radiation. I just started hormonal meds yesterday. I might have to have more chemo. The cancer is now in my lymph nodes and has spread to my internal mammary glands and under the subpectoral muscle. Unfortunately it grew during chemo so they are radiating the snot out of those areas as the new cancer can't be removed surgically.

    I don't share all this to scare you but to make you aware that recurrence DO sometimes happen and you need to stay vigilant. My oncotype scores were low (both under 15) and yet here I am. Cosmetically NOLA did a great job, although my right breast has "dents" that need to be fixed and now my left breast is swollen from surgery and radiation so I don't know how it will turn out in the end. And I've put on ten pounds in the past year so all the fat they removed from my hips and belly is back. :-( That's a bummer. I had to pay a LOT out of pocket for the NOLA experience. It's unfortunate that it's turned out this way. If I'd known I would get cancer again I would have stuck with lumpectomies the first time around. Now I'm one of the crazy few who've had a lumpectomy AFTER a mastectomy.

    While I don't understand why I'm the "lucky" one, I am trusting God to see my through this mess, one way or another. And I'm still searching for some good that can come out of all of this. Keep doing follow up Melinda, but most likely the docs are right and it's just fat necrosis. Mine came back right under the skin at the second incision site and one theory is that it is not new cancer but cancer that was left behind.

  • besa
    besa Member Posts: 289
    edited September 2015
    Options

    klanders- I don't know what the right words are to say - you are dealing with so much. Know that your post is very important and helps everyone here understand that we need to stay vigilant. You (and I think all of us) did the best we could with the information we had at the time we were diagnosed. The lessons you learned and post here are helping others.

  • PinkHeart
    PinkHeart Member Posts: 271
    edited September 2015
    Options
    Klanders,

    You are in my prayers! I talked with you before you went to Nola a few years ago.

    Did you have complete ALND at this last surgery?
  • lastar
    lastar Member Posts: 553
    edited September 2015
    Options

    Klanders, thanks for sharing your experience and reminding us to stay vigilant with self-exam. I hope you will complete your successful treatment soon and get back to enjoying a poke-free life.

  • Stix
    Stix Member Posts: 610
    edited September 2015
    Options

    Hi Klanders- thanks for the update. Not sure why neither healthcare provider would not have told you about radiation. Do you think the one thought the other was going to address? I don't understand that. Its very disturbing. Much more for you i am sure. Its framented care ...Shocked

    I am glad you are getting great care now. Best wishes to you.

  • tigsun
    tigsun Member Posts: 162
    edited September 2015
    Options

    hello, it has been a while since I posted but I wanted to chime in.

    Yes, It is very important to keep up with surveillance. I had breast cancer in 2000 (had chemo, lumpectomy and radiation) and then developed a second breast cancer in 2011 while on tamoxifen. Found during regular check up. Same breast, same location. I have the breast gene - Brca 2 so follow up is part of my life routine.


  • PinkHeart
    PinkHeart Member Posts: 271
    edited September 2015
    Options
    Tigsun, Was the 2011 cancer a new cancer or recurrence of the first?
  • tigsun
    tigsun Member Posts: 162
    edited September 2015
    Options

    They think it was new. 2001 was triple negative. 2011 was ER/PR+

  • klanders
    klanders Member Posts: 152
    edited September 2015
    Options

    Thanks for your prayers and encouragement. I always hesitate - not wanting to say too much because I don't want to be a "Debbie Downer." But the reality is none of us can let down our guard. I was negative on BRCA and BROCA. I'm young(ish) with first cancer at 45 - second at 47 - and I'm thin, etc.... PinkHeart, I had a second SLNB with the lumpectomy back in April. When they found more cancer during a PET scan after chemo (this time in internal mammary lymph node and subpectoral) in July, they suggested doing a full SLND before starting radiation and hormonal therapy. My problem with that was that all along I've been told that radiation and hormonal therapy would be most effective for me since I'm 100% estrogen driven. If I had done the SLND surgery it would have been at the end of August and would have pushed the "important" stuff back that much further (not starting until October). And that would have left the inoperable mammary cancer just sitting with no treatment and more time to spread. Plus there was not a 100% guarantee that they could reach the subpec node even taking out levels 1-3. What that means for me is that they are radiating the snot out of that subpec area and there is a nerve that could get damaged with a slight chance of left arm paralysis. (And I'm left handed.) Stix, when I asked my medical oncologist why she didn't recommend radiation as an option to me she just told me that she didn't think I'd want to do it so didn't mention it. I think I have grounds for a lawsuit but I don't anticipate that we'll go that route. So far my DIEP breast is holding up well to radiation. I have 16 down and 14 to go. It's swollen and getting a rash but fairing well over all. This too shall pass. Just taking things one day at a time.

  • Stix
    Stix Member Posts: 610
    edited September 2015
    Options

    It is the duty of your MO to give you all options available. This is called informed consent.The right to make a decision after all options are laid on the table. I don't think MOs have a degree or the ability to mind read; therefore, for the MO to assume you didn't want something imo is hogwash for her/him to say that.

    First and foremost- worry about getting well and strong both physically and emotionally. Secondly, worry about the above when you are better. Lastly, spout off anytime you need to- even pm me if that helps.

    Stix

  • lastar
    lastar Member Posts: 553
    edited September 2015
    Options

    I saw a new oncologist today, and that means showing a new person how amazing my reconstruction is! She was not aware of the Center and was so surprised at how natural my breasts and nipple reconstruction look. She wanted to know if I'd be willing to meet with a few of her patients in their 30's that are struggling with the decision to reconstruct. I told her that I'd be happy to meet with them and show them my results, but I wouldn't be able to recommends any local surgeons. She tends to agree and is really happy to know there are better options if one is willing to travel.

  • Stix
    Stix Member Posts: 610
    edited September 2015
    Options

    so nice of you lastarSmile

  • cider8
    cider8 Member Posts: 472
    edited September 2015
    Options

    klanders, you may recall I had both a recurrence and new primary after I was finished with recon. I'm closing in on 2 years post treatment (and NED) for the second primary. While mine did not progress beyond the lymph nodes, my treatment was quite aggressive. I had 44 rads, getting them twice per day, 11 fields and 66grays. I understand being radiated the heck out of! But it worked. I have limited range of motion despite PT. I felt so much better before the second round of treatments! So, what I'm trying to say is that it is all very crappy. QOL gets diminished but I'm still grateful to be here. Keep taking it one day at a time.

    BTW, I did have Dr Stolier do my BMX and I still got a recurrence and a new primary. Cancer is very sneaky. Your MO was very wrong not to send you to visit the radiation oncologist. Have you since moved on to a new one? I'm keeping you in my prayers

  • cider8
    cider8 Member Posts: 472
    edited September 2015
    Options

    I wanted to add one more thing. I had my right DIEP breast radiated for the recurrence. 1/2 - 2/3 of the breast was radiated. While, sadly, I no longer have the left DIEP breast to compare it to, the right radiated breast held up nicely. I really don't think I lost any volume (though I gained 20lbs, so that might be why). I had some swelling on that breast for about 1 year or so after rads, giving part of it an orange peel look and thickened skin on imaging. But that all subsided! I was so worried

  • klanders
    klanders Member Posts: 152
    edited September 2015
    Options

    Cider8, thanks for reminding me of your story. It's very reassuring hearing that you are NED. Wow, you got a LOT of radiation! They just upped me to 33 days so I have 11 more to go. I definitely have swelling and skin changes. I'm hopeful that the breast will someday look normal again. My right DIEP breast actually could use some fill. I've developed some indentations along the lower half of it. But that's the least of my worries at the moment.

    I do have a new MO so that is good. And I really like my RO. After two SNB's on the left side and with the radiation I've begun to develop some lymphedema and left arm pain so I'm seeing a therapist for that. On the bright side, I've started my zoledex/arimidex routine and that seems to be going well.

  • shiane2
    shiane2 Member Posts: 6
    edited September 2015
    Options

    So many women with so much helpful advice on here; I am currently in the planning stages of bilat mx with recon. S/p IDC 2008 with chemo, radiation and lumpectomy to left breast, found to have atypical ductal hyperplasia palpable mass in right breast in 2013, newly dx with ATM genetic mutation, so very anxious to move forward with this surgery. Some questions for all willing to share; I have seen a PS that specializes in microvascular surgery in Orlando and he has recommended bilateral DIEP, but has been honest in saying results will be small B, esp small B on radiated side as I don't have much ex abdominal tissue and I may need implants due to lack of volume. I was really hoping to avoid implants altogether due to reading about so many possible complications later on down the road. I was very interested in LSGAP instead of DIEP as most of my extra tissue is in my backside area, but PS says this is much longer surgery, more difficult due to having to turn patient during surgery, etc and he doesn't feel results look as good as DIEP in the end, difference in tissue and so on. I read so much about NOLA and wish a million times over I could go there but with an HMO insurance this seems completely impossible. Anyone with any experience with LSGAP please share your stories of how you feel about results, especially if you have been through radiation in the past. How does the donor site look and feel? Any mobility issues? Also, anyone with not so great insurance go to NOLA and have success getting some or most of it covered? I'm having the mx with tissue expanders placed in a month or 2 here locally as my insurance won't even pay for me to have the first surgery in Orlando with the general surgeon my PS works with regularly, but luckily there is a great breast surgeon and PS here in town; then plan is to follow up with orlando PS to have free flap recon. All advice and information greatly appreciated. I am really scared and very sad to have to undergo all this, but grateful to have the chance to hopefully avoid a second dx of cancer. Reading your story klanders makes my heart heavy for you, but you sound tough and you have to fight for your health, my prayers are with you.

  • klanders
    klanders Member Posts: 152
    edited September 2015
    Options

    Thanks, Shiane. So sorry you are dealing with this stuff. It's all that much tougher when we have to fight with insurance companies, too. I had the DIEP so I can't answer most of your questions. I do know that NOLA docs can perform "miracles" and are able to do things that other docs can't. They are particularly good with the tough patients as I was because I was so thin. They managed to take a 120 pound 5'6" body and make me two B breasts. I had a consultation with another doc in Michigan and he was only willing to use fat from my thighs, said I would be an "A cup" and also was going to have to do the surgery as two separate surgeries - one breast at a time. No thanks!! When I went to NOLA they were somewhat negotiable in that they looked at your finances and negotiated what you had to pay up front. BUT I was just having to pay an out of network deductible whereas it sounds like you wouldn't have coverage at all. You definitely don't want that. The surgery/hospitalization ran in the several hundred thousands of dollars. Have you looked into seeing if Dr. Massey or Dr. Allen in Charleston, SC or The Center for Natural Breast Reconstruction which is also in Charleston are in your HMO? I've heard good things about them, too.

  • PinkHeart
    PinkHeart Member Posts: 271
    edited September 2015
    Options
    Shalane,

    I was 5'6" and 118 lbs at my stage 1 surgery. I had SGAP and Dr Richard Kline said I may just be a small B but I ended up with a C cup.

    He is in Charleston, SC at The Center for Natural Breast Reconstruction. They accept all insurance. He has done hundreds of SGAPs and started his doing these surgeries many years ago with Dr Robert Allen, who is the pioneer of natural flaps of all kinds. Dr Kline is so kind and always emails with me answering my many questions. I'm on the wrong thread but klanders brought up the subject sooo. Private message me if you would like. I also travelled for surgery in the beginning but now I live in Charleston. Long story. 😊💗
  • shiane2
    shiane2 Member Posts: 6
    edited September 2015
    Options

    Thanks to you wonderful ladies Pinkheart and Klanders for sharing your information and stories. I am so grateful. Seems I have to stay in FL for my surgery, spoke to my insurance co today and unless it's emergent, no surgery is covered out of state. Klanders, thank you for your info on cost, my husband and I were actually thinking (in a more desperate moment) about trying to just go to NOLA out of pocket, but after reading what the cost is, that is totally unrealistic. Hopefully all works out for the best. Ahhh, if I ever win the lotto, need to start an insurance company that actually makes difficult times easier for people, not harder! I do want to share this website I stumbled on accidentally during my many hours of researching breast reconstruction and please everyone repost anywhere you can. Dr. Dellacroce from NOLA offers free advice and information on breast reconstruction, and he gives patient, in depth, wonderful answers for free!! Here is the website: If I knew how to put this everywhere I would. http://members.boardhost.com/plastic/

  • trvler
    trvler Member Posts: 931
    edited September 2015
    Options

    Shiane: I am sorry you can't work it out to go to NOLA. That website was how I decided to go to NOLA and Dr. D was my second surgeon, although I never got to meet him. So I am glad you posted that and I hope it is helpful to people. I hope you can get a good local doctor to help you.

  • klanders
    klanders Member Posts: 152
    edited September 2015
    Options

    Regarding costs - I can't even begin to imagine how much it would cost without insurance! Mine did probably run more than normal because I had complications and was in their hospital for a week. And then they didn't get clear margins so I had to go back in for a second surgery before I headed home. I had a particularly odd situation (won't bore you with the details) in that I didn't have a good place to stay the night before the second surgery; so Dr. Sullivan actually said that he would allow me to spend the night even if insurance wouldn't cover it. When you own the hospital (like the surgeons do), you can let people stay for free if necessary. These docs are not only excellent plastic surgeons they are also very kind and compassionate men.

    This week I had another doctor tell me how surprised she was that I had a mastectomy because she couldn't tell by looking at me. The cosmetic results are that good. I'm about done with radiation of my left breast now so it is swollen and burned. I'm hopeful that it will look good again someday.

  • trvler
    trvler Member Posts: 931
    edited September 2015
    Options

    I was amazed by how kind the NOLA doctors were compared to other doctors I have encountered through all of this.

    Both Drs. Sullivan and Stolier are, without a doubt, the best doctors I have encountered throughout all of this. I could go on and on.

  • Springtime
    Springtime Member Posts: 3,372
    edited October 2015
    Options

    Added to list:

    Oct 6 - Tmgilbert1071: DIEPwith Dr. M Whitten Wise, NOLA.

  • quiltrunner
    quiltrunner Member Posts: 13
    edited October 2015
    Options

    I'm talking with Vickie and Liz now about going to NOLA for a redo either next month or early next year. I'm wonder if insurance covers the 2nd surgery as well since a lot of it seems to be cosmetic. I'm scared to death I'm going to be hit with so much out of pocket expenses? So much of it is unknown until after the procedure is finished and then it's too late. I've spent so much money on this crazy C!! I hate it!

  • trvler
    trvler Member Posts: 931
    edited October 2015
    Options

    What are they saying? I don't know the answer. Did you have your original surgery at NOLA?

    What I am wondering is, if stage 2 is done in a separate calendar year, do you have to pay a second out of network deductible? I don't really want to do stage 2 before year end.

  • quiltrunner
    quiltrunner Member Posts: 13
    edited October 2015
    Options

    I will have to start over in 2016 - either way I go. I know NOLA will require an $8,000 deposit before they will do the surgery - even knowing I'm covered at 100% since I've met all my out-of-pocket this year. That''s what scares me. If I were to put up $8,000 now and then I'm not sure what they will require for the second surgery, I still don't have a clue what insurance is going to consider "necessary and customary expenses." It's all a crap shoot and I just can't afford to be hit with any more unexpected expenses. Knowing what I know now I should have just gone to NOLA when I was diagnosed but of course, I had no idea it even existed. So now I've messed around with this mess for 3 years and still have terribly disfigured, distorted and painful "breasts."


  • trvler
    trvler Member Posts: 931
    edited October 2015
    Options

    I am sorry, Quilt, that you have to deal with all of that. That's why I tell anyone who will listen about NOLA.