NOLA in September?
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Marcie- I don't post very often on this thread now but you have written resonates with me. This is your decision to make and you need to do what you feel is right for you.
I had a unilateral mastectomy following a multifocal bc diagnosis with a DIEP reconstruction done locally- it was pretty much of a disaster requiring 5 revisions (My original ps was, it turned out, very will trained but inexperienced and was doing DIEPs in low volume.) I am BRCA negative and 4 years after I was diagnosed decided to do the other side (dense breast tissue which made screenings difficult, family history of bc which made me higher risk for another primary). My MO at the time discouraged me from doing the contralateral side. My breast surgeon, ob/gyn and primary physician all told me if they were in my shoes they would choose surgery. I had absolutely no problem having insurance pay for the contralateral mastectomy and reconstruction. I think that once you have a bc diagnosis insurance is obligated to pay for mastectomy and reconstruction on the contralateral side. A physician friend on the west coast helped me research the options and told me NOLA was the way to go. My local docs discouraged me.... "Why travel when you can have it done at home." I had already dealt with a problematic reconstruction and decided to stack the cards in my favor by going to the best doctors I could find. My current MO (who was the most adamant when it came to discouraging traveling for surgery) is now referring other patients to NOLA and comments on my beautiful reconstruction every time I come in for a check up.
I did what I felt was right for me and in retrospect I have no regrets (though I do wish I had know about NOLA when I was first diagnosed). When it comes to these decisions there is no single correct path.
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Marcie, I was in a similar situation. My diagnosis was 10 years ago, and then last year has a precancerous situation. My BS sent me to 2 PS and I wasn't keen about giving up core muscles in my stomach or back. I started researching and found this thread. When I discussed with BS she was very cold to me. My own sister, who has had BS too, question why I would go out of state to do this. It all boiled down to it feeling right for ME. My sister can't believe how great my breasts look and I haven't even had stage 2 done yet. My surgery was prophylactic and insurance did cover it.
This has to be a decision you make. It is your body and your peace of mind.
Maggie- I know how anxious you were to be free. I guess it is a friend that wants to be with you to make sure you heal well. You will get past this. It won't be long.
After stage 1 I wore my DOM ( Veronique) for 6 weeks 24/7. I am 10 days out of them.0 -
Marcie, I saw the results first-hand from a local woman and contacted the Center right away. I felt like I was putting aside a whole level of anxiety when I knew I was getting treatment from some of the best surgeons in the US. My insurance company was great. I had PMX also. I know the odds are low, but who wants two mastectomies? I will never have another mammogram in my life, and I will never wish I'd done more. When you hear back about your insurance, it will all get very real. They will give you a date and you will make it happen. I was so overwhelmed by the thought of flying to NOLA for surgery, but they make it very doable (and I even had some fun). If you set the date and feel relieved, you'll know you've done the right thing.
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Mags..good luck with Pet Scan..sending positive thoughts!!!
Marcie..making this decision has been very hard for me too. I just want that gut feeling or for someone to tell me what to do, but everyone is right, it has to be our decision and we have to be confident with it. Just do all your research & be glad we found these friends here:)0 -
Post DIEP fat necrosis - thanks Springtime, it doesn't bother me either, just a little tender if poked at. We'll see what it looks like on MRI, having one next week to check on my chest wall where they couldn't get a clear margin. Just regular maintenance lol.
Happy New Year!0 -
Omg, thank you all so much for your words of encouragement and support!! I am so happy I found this sight, wish I had found it sooner, but better late than never.
I have my consult in Nola this month but those 2 dr's appt's today just set me back a couple steps! I know I will know if it feels right and that it is my decision to make however it is that much harder when you feel like you have to explain yourself 😩it just makes you tired 😴 and question if it is right even if you feel it is 😖
Love you girls, you rock !! 😘0 -
Marcie,
Honey, its YOUR body, YOUR life, and YOUR decision..listen closely to your instincts and they will guide you.
I opted for bilateral mastectomy (8 years ago on Jan 6th) and was encouraged by my Surgical Onc at MDAnderson to do so even with a negative BRCA test (Stage 2B multifocal, Her2+++). Insurer denied payment initially for the prophy side (which did have atypia at final path) and I laughed saying.."oh well Ill guess we'll just have to put it back on?". In the end they were rebilled and payed.
Had my recon (delayed almost 3 years) and am so happy I did! You cannot go wrong with NOLA they are simply THE BEST!
Gentle hugs,
Marcia
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Marcie47,
I decided to have a mast. on my " good" breast at the time I had reconstruction on the left. I am so gld I did! Yes, I had cancer in the right breast also. Clear mammograms forever.0 -
Another thing...insurance will pay for mast and reconstruction on both.
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Marcie, when is your consult? And with which doc? where are you coming from?
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Downey--sorry that I missed your friend. My DH said someone stopped in to meet me...I do not work right now so almost never there. They did give her my cell # and make sure she knows to call me anytime if she wants to talk.
Maggie-2
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Just had Katie book flights for Nola!! Excited and scared at the same time!!!
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everything will be amazing Russell1---the docs there are so fantastic..when is your surgery date?
Maggie-2
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Thanks Mags. Date is Feb.22at Fairway.
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An interesting thing happened in the Charleston airport today. The dom set off the body scanner. When I went through, it lit up in 3 places. We ended up doing a pat down followed by a chemical check of her gloves. I was laughing the whole time. They were very polite. Never thought that would happen. On a positive note, the dom is like wearing long underwear and keeping me warm as we wander DC.
Neosporin - a few weeks ago we were all discussing neosporin and allergies. One woman posted that the problem was because it was an cream. Several of us noted that it was only an ointment. Well, I was in Target and found Neosporin as both a cream and an ointment. Learn something new every day!
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Marcie,
What you describe has happened to nearly every woman on this thread! I think it is like a stage you have to go through.
For me, there were so many reasons, but mostly, I wanted to be restored and not reminded of BC every time I looked in the mirror. The fact that I would get a tummy tuck and or butt lift (I got both) also helped. Like most women here, I feel my whole body is improved, and my breasts are nearly perfect, and much better than they were when I started.
The local docs (PS and MO) had my husband so upset about me going out of state, they convinced us to go to a doctor locally who performed DIEP. He looked at my body and told me he could not even get 2 A cups out of my belly. I told him I was going to NOLA (I already had the surgery scheduled!) and he told me they were the experts. My husband calmed down, and once the local docs saw my results, they started sending women to NOLA!! My ONC told me today (I had my 6 month check up) that she has send 5 women there so far.
Look at the pictures of before and after on the website. Talk to the women who have been there. Then do what is right for YOU. This is about YOU and nobody else. YOU will have to live with this decision for a long time. And if this is not right for you, we all will understand. There are women (not many, but some) who look into this and decide it is not right for them. That is okay. GO WITH YOUR GUT!!!
The whole thing is a journey. Hang on for the ride!
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Marcie-Glad you found the thread here. It is wonderful and so supportive. As so many have said...trust your gut. When I found out about NOLA I finally felt like I had found a place I was really, really comfortable with and that only grew after finding this thread and talking with these great ladies.
For the post Stage 2 ladies, did you wear your garments 24/7? I am now 2 weeks out and NOLA said I could discontinue wearing the garment. Bdavis- Did you say you only wore yours during the day?
Back to the regular schedule next week. Will be glad to enjoy getting back into a routine and exercise. However, since my BRCA diagnosis last February that has been my focus. Finding it hard to let go if that makes sense. I was able to speak with my genetic counselor today at my local hospital. She congratulated me on the motivation and persistance to get to NOLA which I must admit felt good to hear
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Kerry... Yes, after the two week mark (I believe), I didn't sleep in compression. That was an awesome feeling. But I did wear it for an additional 4 weeks during the day. Also, you say you will get back to normal activities next week? I didn't go back to the gym for 6 weeks. Partially, I wouldn't want to exercise in compression, but also I had read or was told that lifting weight or leaning on newly fat grafted areas could compromise my fat grafting. So for the full six weeks, I didn't sleep on my stomach (or side), didn't exercise and wore the compression. Plus I had a nipple re-built, so I had the guards on for 3 weeks, and then wouldn't have worn a sports bra for an additional 3 weeks (only wore a molded bra that didn't push on the new nipple). I would say you DO want to walk though. Lipo'd areas heal better and faster with some activity - its a balance between getting enough exercise, without messing up the fat grafting.
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Hi everybody,
I am feeling really excited about Nola as it gets closer. I think the only thing that will deter me at this point is if I can't afford it. Liz is going to explain all the insurance stuff to me when I have my consult. I guess I will know soon enough.
Thanks again for all your support, you are all so right with the fact that I am the one who has to live with the results. That is going to be my mantra...."are these your boobies/foobies?")0 -
Bdavis- Thank you for the information! Feels great to have the garment off for a bit. Should have clarified regular routine..meant back to work
Still just walking for exercise now.0 -
Marcie...I can't afford it but am doing it anyway. I am having my consult/pre-op & surgery all on the same trip. I am going on my research and all the great things I've heard here. I was just wandering why you are going just for consult? Did you send you photos for them to review? Do you live close to center? Sorry that I'm asking so many questions:)
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Russell... I can give my perspective.... Many and probably most women send pictures only for consult, but I flew in for my consult because a local PS said I didn't have enough fat. I was making a decision to have this surgery and forgo radiation, but if I had gotten to NOLA and found out then that I didn't have enough fat, I would have bipassed my radiation deadline. So for me, it was a confirmation that they could build me breasts. Also, I wanted to meet with the BS (Dr Stolier) and assure myself that he would take all breast tissue. This was on the heels of a visit to Dr Allen in NYC (who also used to use Dr Stolier) who had told me he asks his BS to reserve breast fat so he doesn't need to harvest as much donor fat. By the way, both Dr Dellacroce and Stolier assured me they do a thorough job of cleaning out the breast tissue and fat.
In the end, I did not have enough abdominal fat for breasts, but I did have enough buttocks fat. But it was very reassuring to have Dr D grab my fat and say he could do it. Some people clearly have enough, and in that case, photos would be fine. Or some women have to have a MX, and so if they ended up not having enough fat, then the doctors would do something else. For me, it was Mastectomy OR radiation. So I wanted what I wanted or I may have just gone with the radiation.
Flying in for a consult cost me $220 (plane) plus the doctor fee... I stayed with a friend, and just popped in for the weekend. Small price to pay for reassurance.
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bdavis...flying for your consult was a small price to pay and were lucky to have stayed with a friend:) I'm trusting I have enough fat in my hips for a c cup..if not I'll see what other options I have. Keeping my fingers crossed:) I think we are staying at Homewood suites...Did anyone stay at the Clarion? It has the cheapest rate but didn't like some of the reviews on internet:(
Thanks!!0 -
I also went just for a consult. I was apprehensive going out of state for surgery and wanted to see everything in person. I met with Dr. D and Dr. Stolier and before we left, my husband and I were both set that was where I was going and we would do whatever we had to to make it work. We drove there on Sunday (7 hours) had a Monday morning appointment and then drove back Monday afternoon. It was well worth it for me!! But I know many others who just send pictures and that worked out too.
I need some help ladies. I've had a heck of a time the past 3 months, but finally made it back to the gym yesterday. I don't have the heavy feeling in my breasts anymore and they feel like me now, but when I got on the stair elipitcal last night and started bouncing up and down, it made my chest very uncomfortable. I was wearing a tight sports bra, but the only thing that helped was if I put my hand on my chest and kept "the girls" from bouncing too much. Any ideas on what else I can do?
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Your profile doesn't exactly say what you had done... but, I used a medical sports bra. Did they give you one when you left the hospital?
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chelle- I think the flaps are just moving in a way they haven't yet and they're complaining. It'll go away with time. Wearing a supportive bra is the right thing to do now.
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I had a bilateral mastectomy with hip flap reconstruction. Maybe I need to go buy another type of sports bra. Jeskachi, they were screaming at me...lol
I am easing back into it, which is hard to do because I want to get "me" back ASAP. I want to get back into step classes, but that's even more bouncing. I thought I was playing it safe, but my chest is pretty sore today which hasn't happened in a while.Also, way back I had emailed to get the password info to the picture forum, but I wasn't able to get in. Can someone let me know how to do this again? Are there any pics of post stage 2 hip flaps?
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Marcie and Russell.....I did not do a separate consult before surgery. I'd had numerous local consults and I just knew in my heart that things HAD to be better in NOLA than what I was experiencing locally.
I didn't know what procedure I was having done because based on my pics, Dr. D. wasn't sure if I had enough abdominal tissue or if I'd need to do hip flaps. I sent in pics, and was told he needed to see me in person to be able to determine which procedure I was a candidate for...but that it would be one or the other. I was fine with that. I did some pre-op tests locally which Dr. D. ordered (chest x-ray and blood tests), but all the rest was done two days before surgery in NOLA.
It's a leap of faith to be sure, but there are so many glowing reviews, I just knew it was the right place.
Russell....we'll be in NOLA at the same time
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Hello all - I'm an occasional lurker since late 2011 when I first made the decision to have a prophylactic bilateral mastectomy with immediate reconstruction due to a strong family history. My younger sister lost a 5 year battle with breast cancer in 2008 at the age of 43. I'm now 51 with 4 small children (two 10 year olds and two 7 year olds). To my husband and me, this was a no brainer decision. Flash forward to now and I'm scheduled for a bi-lateral DIEP with Dr. D. on January 17th. That's less than 2 weeks away! I am a little overwhelmed to be sure, but honestly, more excited to have this done and overwith. My intentions were to do it early 2012 but life got in the way and, as I'm sure you can imagine, it is an easy thing to put off. Then another mammogram (negative thank God) rolled around and it finally kicked started me again. I couldn't keep putting it off or I would have no one to blame but myself if I ended up with breast cancer. And after everything my sister went through, and everything most of you have been through, that just wasn't a gamble I was willing to take.
Then the most amazing thing happened, after going down for a consult in October, and having everything sent in to BCBS for out-of-network approval, I was granted full pre-certification 29 days later! No appeals...a slam dunk. And I was totally ready to put up a fight. We had loaded up my pre-cert request with everything I could think of: letter from my GYN stating why he was behind be doing this, a copy of my sister's death certificate stating she had died from metastic breast cancer, a copy of my birth certificate showing I was her biological sister and therefore high risk, and a two page letter from me that explained why I had made the decision I had made, why I didn't want a lat or TRAM, and why I wanted a DIEP in New Orleans. Lo and behold, they approved me. I think was still in the floor from the shock when she called to tell me it went thru on the first pass.
So, flash foward to now, and I'm headed down in a week and a half. I know it's a big decision, and not everyone agrees with, but I suspect each of you understand why I made it. Not only do I have four small children, but I am relatively young (or at least I feel that I should be!), and I can. Like I said earlier, it's a no-brainer in my mind and in my heart. I've made no secret about what I'm doing (and why) and I have had great support from friends and most of my family. Ironically, my brother, who is an OB/Gyn, is the only one of my family who is not supportive. Or at least not happy about it because he thinks I'm jumping the gun. I say, yes, that's exactly what I'm doing. I honestly think what bugs him the most is that I didn't consult with him before or during the decision making process. But I had my reasons for that. He's like so many other physicians across the country who are not familiar with the DIEP. It amazes me really. I would put my gynecological life in his hands (and that of my personal Gyn), but what each of them knew about the DIEP would fit in a thimble. Doctors, as a whole, seem to "know what they know" and practice what they know, but they truly do have blinders on when it comes to things outside of that until they come face to face with it. I have no doubt that, once I am through with all of this, both my local Gyn and my brother will be recommending their patients check out what NOLA has to offer instead of the "standard" lat and TRAM.
That's enough from me. I just wanted to say hello and say that, although I am not in the same boat as most of you, I am taking a big part of the same trip. You all inspire me. You already know God doesn't give us more than we can handle even when we think we're going to break. And I believe you all are a testament to that fact. Steel magnolias...every one of you. God bless you all.
Nancy
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4mybabies...Wishing you all the best!! I am so sorry about your sister. You are spot on with your decision. Please keep us posted here with your journey. I also have to say you are a great writer. You have brought me to tears. God Bless you and big hugs!!!
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