NOLA in September?
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Oh that is great news! The care I got at the main Roper hospital was not nearly as nice as in New Orleans, and she really wanted to change that. I did find one nurse that really got it, and she helped me shower (which was not a standard of care at Roper). I'll know right where to send people now. Dr. Marga Massey is THE BEST.
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I am trying to find the FB private group. I just completed Phase One and have questions on NOLA and the second surgery. Can you help me join or help me find which to ask?
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PM me your name on Facebook. I will try to add you. If your name is common, you might have to friend me first.
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Hi All,
I posted this in another thread, but given the relevance of my questions, I'll post it here, too. Thank you for any thoughts you may have!!
Mary
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Joined: Apr 2019Posts: 5Latest activity: Apr 28, 2019
MaryScout wrote:
Hello All,
I am new here, but not new to cancer -- cervical at age 33 and 3 melanomas since then (now 54). I have been diagnosed with ADH about a month ago, have heterogeneously dense breasts, and have had fibroadenomas removed. All the women on my mother's side (including my mother) have died young for reasons other than BC, so I don't know my history there.
Given my history with cancer, I just don't know if I can handle the heightened surveillance and chemopreventative drugs. So much stress. Plus, I travel a LOT for my job, out of the country.
I see a BS on Tuesday, but am seriously considering PBMX with deip flap in the desperate hope of being super proactive and having a chance to move on. I'm a college prof, and right now am at the start of summer with some time to recover.
My husband is from NOLA, so all of my inlaws are there. I'm writing with lots of questions about having a diep flap done down there at the Center for Restorative Breast. I'm sorry to have lots of questions, but here they are:
1. Has anyone on here had a PBMX diep flap with my profile? Regrets? Reliefs?
2. Most people sing the praises of the NOLA center, but I have seen some negative reviews. Thoughts?
3. When consulting with them, I asked if they biopsy all of the tissue removed, and they said yes. So let's say they find DCIS or anything more, what would be the follow-up? Would radiation/drugs be necessary anyway?
4. I've seen some comments here and there about poor record keeping at NOLA. Has anyone gone through this and needed their records and had trouble?
5. I've seen a post on here about a private Facebook group for the NOLA place, but I can't seem to find it. I do see the Center's page, but if there's another one that is private, can anyone point me toward that one?
So many questions. I am deeply appreciative of any thoughts.
Yours,
Mary
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Mary - all great questions. My profile doesn't match yours exactly but I will still weigh in...
I was first diagnosed in 2013, age 42, with bilateral breast cancer. IDC on one side and ILC on the other. I had lumpectomies on both sides followed by radiation. Fast forward to 2016, right side ILC is back with a vengeance.... entire breast invaded including the skin. I started chemo immediately, followed by rt mastectomy (wanted bilateral mastectomy but doctors refused and only wanted to focus on the cancer side at that point) and wasn't a candidate for immediate reconstruction, then radiation to the right side again. In 2018 I started researching reconstruction once I got the okay from my oncologist.
I went to NOLA and had a stacked DIEP on the right and a preventative stacked SGAP on the left on 2/12/19 with Dr. Trahan (Dr. Wise assisted) and Dr Ordoyne did the mastectomy. When my pathology results on the left were in, Dr. Ordoyne informed me that they found 6 small area of ILC again! So good thing I did the mastectomy. We discussed his opinions of how to proceed from a treatment perspective, but ultimately I needed to share the pathology results with my regular oncologist back home to determine next steps for treatment options.
While I've only had phase 1 for reconstruction so far, I couldn't be happier, both with the reconstruction and the fact that my decision to have the left mastectomy done. I absolutely HATED being lop sided. I was a size DDD and it was very awkward even with a prosthetic. I go back at the end of June for phase 2.
Yes, I believe all the hype about NOLA is worth it, however, I am a realist and recognize that no one and no where is perfect. You need to go in with your questions ready, ask what realistic exceptions you should have given your history, and know that everyone's body reacts differently to the trauma of the surgeries. Everyone I've encountered at NOLA is pleasant, nice, and helpful. However, like a lot of businesses their internal processes could use some work. I knew that going in but ultimately I knew I wanted the care and experience of their surgeons and that any headaches (if any) I encountered from a scheduling or billing perspective would be worth it for me, especially since it was out of network for my insurance and I was paying big $$$ out of pocket.
There is a private Facebook group that you can get invited to. Send me a PM with your FB profile info and I will see if I can add/invite you myself.
Michelle-
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Dear Michelle,
Thank you so much and thank you for sharing your story. I just sent you a PM with my facebook information. Thank you for adding me!!
Warmly,
Mary
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Hi Michelle, thanks for sharing your story. I am newly diagnosed with DCIS in my right breast and am booked in to NOLA for double mastectomy & DIEP flap early June. Could you also help me get access to the facebook group? I'm not very proficient with social media, so trying to get up to speed with it asap in order to become part of this wonderful community...I am booked in with DRs Ordoyne & Cabiling, so any insight welcome....thx
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Did everyone get in the FB group who wanted in? I am sorry I didn't reply. I haven't been on here in a while.
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hi Trvler, I didn’t get any info on joining the FB group. Am having Diep flap 4th June @ NOLA..thx for any help..
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I was reading post to see what other people are saying about breast reconstruction. I hope that yoursecond surgery went well. I also went to NOLA for my surgeries. My second surgery was August 2018. I always worry about my breast cancer coming back and only see my oncologists at home every 3 months. What are you doing now that it is over? I worry that maybe I should be having scans or something. It was all such a blur at the time.
Thanks Margie
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I have not had good luck with NOLA
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Hi Stix,
Re: your post above. I'm looking for another PS for further reconstruction surgeries.
Can you say, or PM me, why NOLA didn't work for you? I have a good rec. for Dr. Cabiling. Thanks!
Jaybird ~
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I’m scheduled for Phase 2 the first week of Sept with Dr. Cabiling in NOLA. Has anyone had surgery with him? Would love to hear about other’s experience in NOLA and/or with Dr. Cabiling
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Hi Manuella,
I had a prophylactic mastectomy w/ diep flap (phases 1 and 2) in New Orleans. Dr. Wise was my surgeon. I cannot say enough great things about NOLA. They are truly top-notch. There's a FB group dedicated to this hospital. If you want to join, PM me and I'll start working on it.
Best wishes for your surgery!
Yours,
Mary
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hello! I would love info on this group. I am I. nOlA and need to explanation my silicone and then do a fat transfer.
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