NOLA in September?
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I think it was Amy that was asking about the hotel rooms at Hotel Monteleone. I finally have gotten around to putting some pictures on my computer. I'm going to see if it works. (Also, excuse the bathroom my dh is usually well-trained about the toilet seat but not that day!)
Okay, now I see it doesn't work. Does anyone know how to post pictures that are on my computer?
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Cider, Dr. D. told me it is advantageous to make the nipple out of the areola skin, and that's why even if they remove the nipple in NOLA (say on your cancer side, I had this done, Dr. Stolier said it was too close) they leave the areola. for me, Dr. D. then built a nipple out of the areola on this side and I kept my original parts on the non-cancer side. Now, after the nipple was built the areola was no longer "round" but more elliptical. So then you need a tattoo (and they tattoo both sides for symetry) to make things round again.
Hope this helps!
We have a break in surgeries, from mid June to Mid July! I wonder if the docs are on vacation? Here are the upcoming surgeries below...
July 21 - Bdavis - Stage 1 with Dr. D. & Dr. Sullivan., NOLA
July 21 - DJFroo - Stage 1 (?), NOLA.
July 27 - Louis13 (Rosemary), Consult in NOLA.
July 29 - Toomuch - Stage 1 - mastectomy and bilat hip flap reconstruction with Drs. Stollier, Drs S & D, NOLA.0 -
Actually... DJFroo (Debby) was moved to July 19 (a couple pages back she mentioned it) and Rosemary (Louis13) had her consult JUNE 27 and is in Italy right now... Just wanting to help... I am very aware of this only because I am coming up...
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Do you guys travel to have your massectomies and Dieps done in new orleans? If so, why? Are they special there? Do you have to wait long to get an appoinment, like if you get a BC diagnosis this month do they schedule you immediately? Im confused. Im sorry if this is a dumb question.
Do you use your radiologist and ocologist in your home town and then go to NOLA for surgeries?
Thank you with kindness
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I'm sure everyone else will chime in with their opinion, but here's mind. I do not have BC and never did, but I am BRCA+ and have a WICKED family history of both BC and OVCA all starting around the age that I am now. I went to several cancer centers near me (SF bay area) including UCSF which is ranked in the top 10 cancer centers in the country. I was very set on doing analogous tissue flaps and all the local doctors told me I did not have enough fat to do DIEP. They didn't recommend any other tissue transfers. When I pressed them on this they said they could do a combo DIEP and implant surgery but it would be 3 stages and involve expansion. They said this was "theoretically possible" - never something you want to hear your surgeon say!
At that point I decided to go out of the area; I travelled to NOLA as well as the NY Metro area and saw 5 different surgical teams that special in stacked DIEP flaps. They all said I had enough tissue to do regular DIEP and be a little smaller. (I went from almost a DD to a full C/small D which is what I wanted) Several of the surgeons I saw in NYC trained in NOLA and they all seem to know one another. When I was in NOLA I was floored by their facility and when I asked all the doctors how many DIEP surgeries they performed, NOLA's were staggering in comparison: over 3,000 vs. 1,200 at the most experienced place in NYC. Even the NYC doctors called NOLA "the gold standard" for analogous tissue flap reconstruction, so I decided to make the decision like time and money were not factors (when you think about it, travel is time and money) NOLA won hands down and I had my DIEP surgery in early May - I'm going back in mid-August for revisions and my hysterectomy and I think I made the best possible decision. My doctors here in SF are very supportive; my primary was awed by the work and has been very helpful with writing me scripts and ordering any tests I might need. I have a GYN and a breast surgeon here for follow up and so far they are all easy to work with and don't seem to harbor any bad feelings about doing follow up with me when they didn't do the actual surgery. Someone a little farther our might have more insight. Certainly there are additional factors to consider if you have cancer, but for me the travel was worth it for the best possible reconstruction and NOLA's amazing standard of care.
With regard to the time frame, I called in mid March for a consult and had one in person the second week in April, so about 3 weeks lead time. When I decided to schedule my surgery there were able to give me a date less than 4 weeks away. Again this was for preventative surgery so there might be less lead time if you have cancer, but I was happy with how fast they were able to get me in.
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I second all that Denouement said about why I chose NOLA. I did have a cancer diagnosis and while it took a little longer than I'd hope to hear back from them after I sent my records (I was told 2 days and it took 6 - but it was also between Christmas and New Years), but once I was in the loop they scheduled me for a face-to-face appt with the doctor 5 days later and if I had wanted to stay and do my surgery two days after that they could make an opening for me. As it was I had my surgery 9 days after my appointment. They absolutely accommodate patients with cancer over those who are doing delayed reconstruction or prophylactic surgeries.
Good luck and know that this thread will offer you lots of support no matter what you choose to do
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After over a year since my unilateral mastectomy I've finally booked my reconsrutction. (I had radiation) I'm doing my stage 1 surgery in New Orleans on July 27th. I don't know what else to say but that I'm excited and terrified at the same time...
I've done a ton of research and I know in my heart that I've chosen the best place/procedure for me, but I'm still scared. It just so happens that I have a checkup at MD Anderson the week before surgery... What will I do if they find cancer??? My brave self says "Still have the surgery, don't give up. You deserve a real body." But my scared self thinks that I might bail out.
I was scanned back in April and they saw a small - 5mm - hot spot in my neck. My MDA doctor and Dr. Kuter in Boston both told me that there is a real chance that the hot spot is due to me having been really sick with a head cold right before the scan... My local (and way less experienced dr) is convinced that it's cancer... They told me to wait two months and scan again... If it's cancer, it will grow... Well, two months is here... And I'm scared to death! I have no palpable mass, they saw no mass on the ct, just a hot, unenlarged lymph node. Sound like a node reacting to infection, right? RIGHT?
Wow, I put myself into the most stressful situation that I could possibly contrive... I don't know what to say but that it just kindof happened that way. Cancer has a sneaky way of coming from behind and derailing all of your well made plans...
Any and and all advice is more than welcome...
Brandy
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Betsy, thanks for th updates, I didn't catch those! Here is the list upcoming, below.
July 19 - DJFroo - Stage 1 (?), NOLA. July 21 - Bdavis - Stage 1 with Dr. D. & Dr. Sullivan., NOLAJuly 29 - Toomuch - Stage 1 - mastectomy and bilat hip flap reconstruction with Drs. Stollier, Drs S & D, NOLA.
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OOOH! Add me to the list too! BrandyB Stage 1 July 27th.
And although I don't live there now, I'm from New Orleans and my family still lives there, so if you need any advice or reccomendations about the city feel free to PM me!
Thanks!
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Lisa645, Yes, we travel to NOLA. And if you have active cancer and need a mastectomy, they will fit you in, (amazingly quickly) -- I was able to get a surgery date in NOLA closer to finishing chemo than I could locally at home. So I second what Kathryn above says.
DIEP/GAP procedures are very complicated, requiring microsurgeons. The NOLA group only do breast restoration, and they are the best in the world. They do the most, and they offer the most options to women. They are excellent with any complications. Also, if you look at results photo's on their web site (breastcenter.com) and on TimTam's picture forum, you can decide if it's right for you. But to me, the results are natural looking breasts, restored as you were before. It's actually pretty amazing. They are also generous with lipo for the contouring in stage 2, so some of us feel we end up with a body better than when we started, believe it or not.
I personally knew I was very picky, and wanted the best cosmetic outcome, with doctors who had a proven history. My husband and I travel for fun, so going to NOLA for surgery was a positive adventure for us. However, others also travel who find that a bit out of their comfort zone, and I believe have no regrets!
The facilities (mentioned above) are also incredible, and for me it will be hard to every have surgery anywhere else -- it is that good. Hope this helps!
Brandy, Congratulations on having your date! I am going to add you to the listing above. It is normal to be nervous, but honestly, you are in the best of hands. You are!! You have a lot going on there. I am hoping the best for you. YES infection!!! Yes yes yes!!! And headcold, yes yes yes!!
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Brandy, I added you to the list. Do you want to add anything else? are you doing unilateral? or bilateral? GAP or DIEP or stacked? what docs, hospital, if you want me to add any of this, just let me know...
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BrandyB - Welcome! My Stage I SGAP is in NOLA on July 29th so our hospitalizations will overlap. A lot of the women on this forum put their screen names on their doors when they feel up for visitors. Since our surgeries are 2 days apart, I'm not sure if visits will work out but we can try.
I'm traveling to NOLA from the DC area but I lived there for 8 years and still have friends there. I love the city and do feel in a way like I'm going home. How nice for you that your family is there! I'm thinking reactive lymph node and praying that's the news you get!
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Lisa - I was scheduled for a double mastectomy and DIEP with the only doctors in CO that perform DIEP. The CO ps said that I would have to be smaller than I was (I was a C cup) as I didn't have enough tissue to donate. They also said that my incision would have to be very high because of the way my tissue was situated. I wanted nipple sparing and the CO ps said that they would 'try' it and they were successful about 30% of the time (it was not the norm). Surgery in CO would be 10 - 12 hours. And they also could not do immediate DIEP. I would have to have my mastectomy in June and then delayed reconstruction in Sept. I would have expanders in the interim and probably at least 3 revisioning surgeries afterwards.
June 14th was the date that my CO oncologist has given me for getting the cancer removed. Six weeks from my diagnosis.
I was within days of my CO surgery when my husband found NOLA. He emailed Dr Dellacroce acting as me and asked him several questions about DIEP and he got great answers. He found this forum and read about all of the happy women who loved their new breasts. He was positve that we needed to go to NOLA. Our out of pocket in CO was 1/10 what it was in NOLA (because of my insurance). I thought that was a deal breaker but my husband did not. He would not rest until I contacted NOLA to see if I was a candidate (we were still very concerned with the lack of tissue to donate that we had heard in CO) and to see if they could do the surgery within my very small window (at this time) given to me by my oncologist.
I was a candidate at NOLA. They scheduled me within 2 weeks of my phone consultation (for June 14th)! I had enough tissue to be the same size that I was and if I didn't (they were looking at pictures, I did not go to NOLA until the day prior to my surgery) they could do stacked DIEP (which several women on this forum have had). Nipple sparing is the norm. If margins are clear and you want nipple sparing it is not even a concern. They are 100% successful. My incision could be anywhere they wanted to put it (Dr D's comment was 'that is hooey I can put the incision anywhere'). Surgery would be 5 - 7 hours. Since I was an active cancer patient they would get me in within my window and did. They addressed all of our concerns wonderfully.
I think all of these differences are attributable to their experience (they do more DIEP's than anywhere else in the nation), their skill and their innovation. I actually had DIEP 1 in one breast and DIEP 2 in the other. DIEP 2 is something that Dr D is working on perfecting now. If you talk with him you can ask him to describe it to you - I couldn't do it justice. Something about being able to get the blood vessel out of the muscle without cutting the muscle (this makes me think that once the CO surgeons started surgery they would have abandoned it or given me a TRAM).
I was not crazy about traveling for surgery but that really became a non-issue once we decided that the care and treatment I would get in NOLA far exceeded what I could get here. The money also became a non-issue as this is my body and I'm youngish (47) and will have it for a long time - it is worth the 'investment'. Not to mention how easy NOLA is to work with financially - I doubt you can find anything similar around.
I had Stage 1 four weeks ago and am in the process of scheduling Stage 2 now. My experience in NOLA exceeded anything that I thought it would be. The care was exceptional - one of the cleanest hospitals anywhere. And it is a surgical hospital only. No sick (ok other than cancer) patients. Their infection rate is nil. The nursing staff was awesome. And you feel like a rock star getting in and out of those huge black cars they send to shuttle you from place to place.
Sorry for the book - but I don't know what your journey has been so I thought I would write it all out in case something here really spoke to you. Good luck on making your decision!
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Laura... well said... you should be their poster child!!!
And I find it funny reading thru here that so many do have previous connections to NOLA... I do too. I went to Tulane and was in NOLA for 5 years (stayed an extra year plus), but that really did not play a role in my decision EXCEPT that my friend who lives there will be caring for me, taking time off of work... and another Tulane friend is flyng in for a couple of day to check in with me... and then my husband (also a Tulane grad) is flying in at the end to escort me home...
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Oh and Beverly, if you want to add up top, Dr Stolier will be my BS and Dr D is the lead dr with Dr S as the asst.
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Oh, Laura, that comment about DIEP1 and DIEP2 is interesting, because Dr S told me he did something less invasive with my muscle, too. He did not explain and I didn't ask (those narcotics kept me dazed). My understanding is they don't cut our muscle to get the vein, they separate it like a curtain and tease that vein out. So I wonder what they are doing now that does even less trauma to the muscle! It's on my Stage 2 list o' questions!
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Thank you jeskachi and spring for your areola/nipple experience. I'm looking forward to seeing how mine turn out.
Areolas and nipples were not forefront when I had my surgery, and I'm glad the docs took care of me this way.0 -
BrandyB,
I am also a patient at MDA. I was stage 3 from the start. It took me three years to decide on reconstruction. I am also 63 years old. I thought it was silly for me to go through this long surgery just for boobs. But I was so unhappy with my one sided ugly self, I finally decided to go for it. I had delayed diep in the left and a prophylactic mast on the right. Three days after my surgery, just as I got to my hotel, my Dr. Called to tell me that cancer was found in the right breast. SURPRISE!
Then I had been home about a week when Stacey called to tell me that I had multiple spots on my entire skeleton. It was seen on the CT done right before surgery. Long story short , I am now stage IV bone mets. I am glad I did not know this before surgery. I am afraid I would not have gone ahead with the surgery. I am so happy with my surgery even with stage IV. It makes me feel whole and in a very strange way it gives me hope. It let's me forget how serious my condition really is.
What I want to tell you is....have the surgery! No matter what.
Best of luck to you. I will be watching for a good report from your scans!
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BettyeE - Great to hear from you! And I'd say you look at least 20 years younger than you are!
JustLaura - Thanks for your story. It was great! I feel like I remember your husband posting, maybe? What a wonderful husband!
I am so glad our thread is back on page 1. It was sad not to see it there for a while. I guess I couldn't think of anything uplifting to say. I tried one night. Wrote a long response, then deleted it the next day, as I didn't think it would be helpful to anyone. I guess we all just needed a little time to process...
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I am scheduled for July 19, we leave this Sunday. I do have a question, How am I going to look after stage 1, how much usually needs done at stage 2. I had planned on spending this week at the pool with my grandaughter (that is her in the picture) before we went but she had an accident on Monday which required surgery so she cannot swim for a week, and since I won't be able to swim after the surgery I guess the summer is over for me, that kinda sucks.
I did go to Robyn's visitation on Sunday, I was not able to make the funeral. It was very sad, she touched a lot of lives.
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Cider - that is exactly what DIEP 2 is. Dr D told us about it at our pre-op and then said 'I don't know why I told you that I haven't really explained that to anyone - patients can just see if they had it by looking at their operative report'. Then when he came to see me in the hospital he told me I ended up having DIEP 2 one one side (and my operative report confirmed it)! Is that NOLA voodoo or what?0
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djfrro - They told me I would be 'barrel shaped' after Stage 1 and I am. I don't have much of a waist at all. i'm looking forward to getting that back at Stage 2.
I'm still quite swollen (4 weeks out) and some of the incisions are ugly. I can't wear anything with a waist band yet - I wear mostly dresses.
My breasts look good. Really good. I was able to do nipple sparing and looking at them from my viewpoint (down) they look almost exactly the same as my original ones. They are the same size and seem to be smooth and look completely normal inside a bra. I think I would wear any sort of top that I wanted and they would look just fine.
Having said that I think that this week I could definitely sit by a pool and enjoy it (in the shade). Getting hot and sticky with my incisions doesn't sound fun but if I could avoid getting overly hot sitting by a pool would be a welcome change. So if your grand daughter doesn't require you to be in the pool with her I do think you could accompany her when you are a few weeks out from surgery.
My condolences on the passing of Robyn she sounds like she was a wonderful person. So sad.
Good luck with your surgery - I hope you love it there!
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Thanks Stephanie, I'll be at the St. Charles surgical center. I'm having delayed recon on the left and a mastectomy/recon on the right. I'll be having the DIEP procedure (thank you chemo and stress induced belly fat...) And my surgeon is Dr. DellaCroce.
BetteE - Thank you for sharing your story. I'm sold on the reconstruction now. I'm going to live and make decisions just as I would cancer free (try my very best anyway) I'm still hoping and praying that the scans will be negative tho (obviously)
toomuch - I'll be sure to put my BCO name on my door... Although it wouldn't be too hard to figure out which one was me! Your surgery is on the 29th and that means I will be in the hospital at the time of your preop appt. You should stop by and say hello. I would love that
Brandy
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Brandy... My post op is July 28... so I will also try to stop by.
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So I had my stage 2b surgery June 21st. The nipples are looking pretty good. I wore the clear plastic protectors for about a week and a half, and am still wearing the brown nipple guards. I noticed my left one is getting red and kind of irritated and seems to be a very slight bit infected??? I don't know if that's really the right word for it. So I've been using the swabs before and after my shower. But not sure if i should stop wearing the shields now? I'm so worried about smashing them in a regular shirt/bra.
Also do the stitches come out on their own? I don't remember what I was told at my appt.
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Hey ladies, I just got my surgical report from my stage 1 in May as I was curious as to which version of DIEP I had based on the chatter here. Very interesting stuff--it appears that I had "bilateral partial rib resection of the chest" which I guess means I did not get the new DIEP2 - oh well. Just curious as to what exactly this rib resection entails - at which point was a section removed and on what rib? Did they re-implant the section removed or take rib from another area to close the section off? Or did they just leave it? I knew nothing about this so it's pretty interesting to me...I can just ask Dr. D when I am back for stage 2 next month but thought you ladies might know the answers...
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Denouement - My Operative report has a section that says 'Surgery performed' and that is where it states DIEP I and DIEP II. Mine says:
1. DIEP I reconstruction, right breast
2. DIEP II reconstruction, left breast
3. Partial rib resection, bilateral chest
4. Percutaneous placement of catheter x2, abdominal donor site for continuance administration of local anesthetic for postoperative pain.
So I don't think the fact that you had rib resection doesn't mean you didn't have DIEP II. I think that part is more down in the abdomen than in the chest. I would love to hear the answers to your questions that you listed though.
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Thanks JustLaura!
My report says
Operations Performed:
1. Bilateral deep inferior epigastric perforator flap reconstruction of breasts
2. Bilateral partial rib resection of chest
3. Percutaneous placement of catheter x2, abdominal donor site for continuance administration of local anesthetic for postoperative pain.
There doesn't seem to be any mention of DIEP I vs. DIEP II. I'm going to shoot off an email to Alicia who sent me the records to see if she can get more info. Worst case scenario I'll ask Dr. D next month, but now my interest is piqued!
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I think rib resection is where they take part of the sternum for everyone to access the vessels, no?
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I would love to meet you bdavis. Come by if you get a chance. (BTW when I see your bco name I start to sing "She has Betty Davis eyes...." in my mind...) Oh no, I hope that didn't scare you away!
Brandy
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