NOLA in September?
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Abou Marena... For hip flap girls, you NEED the zippers for the duration of drains, so I wore what they gave me for stage I... but for stage II, the minute I lost my drains I switched from Veronique to Marena and it is indeed much more comfortable... I wear a size 10 pant and bought the medium and large...
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Adey, no rads... really liking what I'm learning about the NOLA center!
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Hey ladies - well it looks like I'm going back to NOLA for another surgery. Abdomen just keeps getting worse and worse and I sent photos to Dr. D and had a long conversation with Laura about it. He thinks it's a significant amount of scar tissue/adhesions plus some fat necrosis but they are confident they can fix up it with a ~1 hour surgery. I'm really on the fence about this, thought I was done and wouldn't have to go back, dreading another surgery but I would imagine it would be MUCH easier than the previous 2 and a much faster recovery. Still waiting on some dates. Thinking I will see Vinnie at the same time while I down there for some pinkdafying (i just made that word up!) of my spared nipples...the color did fade a bit, especially with the hyst so I would like a little more pigment in there. One good piece of news - my next surgery (is it called 2b if it's just scar revision?) will cost me $300 - that's worth the car service, night at SCSH and food and then some! Trying to be positive and imagine having a abdomen that doesn't feel like it has a plate of lead in it...just bummed about another surgery/recovery...oh and thanks for the suggestions - Dr. D/Laura confirmed that it sounded like I did EVERYTHING i could have done (good to know) but it was probably just my genetics combined with all the other trauma...if i just have this to heal from this time around my body should do a better job...let's hope anyway!
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Dana, You can do it. It will be successful!
Jenlee feel free to pm me and we can set up a phone chat if you want. Other wonderful women recently helped me through the experience and I would be happy to talk with you. Like most, I was also told that I lacked tissue for flap recon but not true at NOLA!
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Dana... I have stomach issues.. what will they do to it??
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well they asked a bunch of questions and the answers seem to change what can be done. Not sure if your stomach issues are the same as mine. Mine have gotten progressively worse over the last couple of months which is indicative to them. Last time I talked to them they said that I might need to lose some weight as that might be pulling on my abdomen, so I buckled down and between Dec and May I lost ~30 lbs. Granted most of it I gained when we moved and then when I found our I was BRCA+, was depressed, etc, and then from the non-activity around 2 surgeries. Plus hyst/ooph leads to weight gain with hormones out of wack. Regardless, got back to my 2009 weight which is great but I still look like I might be pregnant. It really pulls in around my DIEP scar and bulges out both below and above. Looks great with clothing on but without it looks odd. Cosmetics aside is feels like a strip of lead across my DIEP scar, mostly in the center and going about 3/4 of the way out to my hip bones and nothing I do makes it better. It's not better in the morning and then progressively gets worse throughout the day. It just hurts every day all day long. And MUCH worse since I lost the weight. I think maybe the extra fat was cushioning/masking it a bit. On the pics I sent I pointed out some red spots on my scar and some small lumps with they think might be small areas of necrosis. They said at least the area above my incision where it puffs out looks like scar tissue and resulting inflammation. My local docs feel it since it's hard as a rock (I joke that it's my 1-pack!) and say it's inflammation too. So I guess they see it in person, open the incision and remove any necrosis or scar tissue they can, then carefully reclose. They also said they did not touch my ab incision during stage 2 (except for the hyst) so i never got the revisions that others do on stage 2. They said stage 1 was more about getting the tissue to transfer and to close you up and this can be more about the cosmetics/feel of it. I was going to wait a little longer but Laura said it MIGHT get even worse the longer I wait - maybe. I'm not sure, I've done some much therapy, stretching, massage, laser, myofasical, lymphatic, etc, etc, etc and nothing else is helping. If Dr. D says he can fix that I'm thinking I just need to bite the bullet and go back down. He also said he would do a little more lipo under the incision as that part puff out WAY too much, but that is more cosmetic. Doesn't bother me like the above the incision tightness does...what does yours feel like?
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My abdomen above the incision is distended and firm. It is much better in the morning, but as the day goes on gets worse so by day's end I look pregnant. Also, around my belly button, especially to the left, it is puffier and if I press there it hurts. So I can't wear pants that sit at the waist. This was most noticeable when I went skiing as my ski pants sit at my waist. They were very tight (due to the puffieness) and hurt. Most of my pants are low rise so I don't usually have pain, but I don't like the way it looks.And my pants don't fit right as my lower body (legs, butt and lower abs would be better suited to a pant size smaller than I wear... but I need to wear the size I do because of the belly above the incision.
Either way, I need to have another surgery as I have a significant amount of necrosis in my left breast. Its been 6 months now post stage II and it hasn't changed much... Maybe there is a little less firmness, but there is also less volume. That breast is sort of flat over the necrotic tissue.
So my plan for next time, is to fix the left breast with either fat grafting or baby flap or whatever they can do, revise the left nipple a little and give more projection on that side, address some puffiness I have at my tailbone, smooth out the buttocks a little, lipo some fat at the back hip area and under the arms/back/lat area (or maybe it is still swollen?), and address my abdominal issues with maybe a plication? They want to wait until at least September, so I am waiting until January for a new insurance year.
In the meantime, they have told me to continue to try and strengthen my abs naturally and try to get in better shape. I used to weigh about 35 less than now (when I was in great shape) but of course it seems harder now to lose weight, especially with the Tamoxifen. I am getting to the gym 3-4 times a week.. but unfortunately am struggling with achey knees etc... the woes of being 49. I also gained weight last year between the diagnosis, chemo, multiple surgeries and feeling sorry for myself. 2012 is a new year and I have really buckled down... but not seeing the results I had hoped for.
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Hi Dana - Glad to see your name but so sorry you are having these problems! It sounds really uncomfortable. I hope they will be able to take care of everything. When are you thinking of going back? I might be there in September.
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Adey: happy birthday and canaversary! Way to go! What a journey! So proud of you! Thanks for all your encouragement! Kathy
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Thanks Kathy. 50 and 2 years from diagnosis. Not too shabby. (c:
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hello all!.....please add me to the list!...i will be having sgap at fairway in new orleans on june 27 with dr massey and dr sullivan.....getting a lil nervous and wanting to be as prepared as possible...i am 4 yrs from having a bilateral mx and didnt think i would have recon, but here i am, and a bit nervous that i could be trading painfree problem free but flat for the unknown........what do the gals who have had sgap or diep wish they would have known before?....would you do it again, or what would you do differently?......hope all are well today......thanks...brenda...:))
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hello all!.....please add me to the list!...i will be having sgap at fairway in new orleans on june 27 with dr massey and dr sullivan.....getting a lil nervous and wanting to be as prepared as possible...i am 4 yrs from having a bilateral mx and didnt think i would have recon, but here i am, and a bit nervous that i could be trading painfree problem free but flat for the unknown........what do the gals who have had sgap or diep wish they would have known before?....would you do it again, or what would you do differently?......hope all are well today......thanks...brenda...:))
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Harmonysun.. I have done both SGAP and DIEP and would absolutley do it again... It is normal to be nervous and apprehensive about the surgery, but I don't think you'll be disappointed. And what should be reassuring is that whatever issues do arise, these doctors can fix it... I have no pain, my breasts look like my old ones (which is what I wanted), and I feel good about myself.
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Harmonysun, I'm almost nine weeks out from SGAP surgery. My only wish is that I would have started with this instead of ending with it. It would have saved me a number of surgeries, pain, and frustration. You have two great surgeons lined up so you can rest assured you are seeing the best. I can say that I'm very happy that I chose the same Docs as you and had the surgery. I'm just about back to normal. Hope this helps. It's natural to be nervous.
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What has anyone worn in May over their girdles and bras? I am trying to pack and want to bring dresses since it is so muggy & hot there right now. Thoughts???
Leaving tomorrow afternoon. Yikes - I hate packing.
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Karen, I'll be watching replies to that with interest. I'm leaving Wednesday. I have two ankle length loose sun dresses I'm hoping will work. Though I need to bring something warmer for travel. It'll be chilly when I get home next Monday.
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I basically packed the same stuff for stage II as I did for stage I.
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yes I packed the same stuff too for stage 2 just less of it - took way too much the first time. I had my stage 2 in August so talk about muggy. the whole city smelled like warm donkey urine! I basically just wore yoga crops, like right to the knee or a bit below to fully cover the DOM and tank tops. I bought some at target in a size too big and in dark colors so they covered the post surgical bras well. I also packed a couple of at the knee (or a bit under) cotton skirts that worked well too. I loose fitting sundress will work well too. Comfy, easy to slip on a off flip flops or sandals with traction are also a must - good luck!
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HarmonySun, I added your date to the list above, Welcome! Willy is the day before you, but at a different hospital. But maybe you two can meet up in the days prior!
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Hi everyone. I've been snooping on this thread for a few days, as I am considering going to NOLA soon. I have invasive ductal carcinoma in one breast, but am considering a bilateral MX with immediate DIEP. I live in MIchigan and have been going to the University of Michigan Cancer Center for everything until now (they are ranked #11 in the nation). I am giving myself until TOMORROW (!) to decide whether I have my BMX and DIEP at NOLA or at UofM - because it's been 5 weeks since diagnosis and I really want to get this cancer out of me!! By the way, the PS at UofM has done about 180 DIEPs, which I know doesn't compare to NOLA...
I have one question that I hope does not come across as ignorant, and perhaps you NOLA ladies can help me. It seems NOLA's big emphasis is on incredible reconstruction - which is great, but more importantly I want the BEST breast surgeon to do the BEST possible BMX's so that I can get rid of this damn cancer! Does that make sense? UofM says they get about 98% of breast tissue through a MX. I can't find a lot on NOLA's website about how good they are at cutting out the cancer - but of course you can read a ton about how incredible the reconstruction outcomes are. I think besides the inconvenience of going so far, that this is my only hang-up in choosing NOLA. My assumption is that of course they are the best MX surgeons also, but my husband is concerned. You go to a place like the University of Michigan and it's an academic institution, with arguably some of the best cancer treatment in the country (I'll be seeing an oncologist there).... you look at NOLA and it seems to only really emphasize the most incredible reconstruction results (?).
Thank you so much for helping me with my concerns and fears. I have all of you to thank, if I end up going to NOLA, because I only discovered it by reading your incredible reviews! Much gratitude, Jen (esmerelda)
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Jen.. I had my cancer removed by lumpectomy locally and then after chemo decided to have a BMX to put this all behind me.. I also knew I was going through all this to get rid of the tissue, and this was very important to me.. I went to NYC and had a consult with a PS who told me he asks his BS to reserve some breast FAT so as to harvest less from the abs... I was not liking that approach.. so when I went down to NOLA for a consult I also consulted with Dr Stolier, the Center's BS, and specifically asked about getting ALL the tissue... that I wasn't having a MX to leave some behind. I also asked Dr Dellacroce about this. He and Stolier assured me that they clean it out well.. Dr Dellacroce told me that he has had patients who have had MX and come to him for a do-over and they have to re-do the MX as too much tissue was left behind.
My MX was a choice and not mandatory and so this part was VERY important to me, and I flew all the way down there to hear what they had to say face to face.. and their answers satisfied my concerns.
Hope that helps.
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Hi Betsy, thank you so much for your response. It was very helpful. You seem to be very happy with your experience at NOLA. I am on the verge of confirming my procedures there... I plan to call them tomorrow and ask some final questions, as I won't be able to go down for a face-to-face consultation beforehand. I'd love to hear from other BC survivors who went to NOLA about their knowledge of the skills of the breast cancer surgery component there. Thank you, Betsy, for all the info you have given on this thread. It's been extremely helpful!
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You are most welcome Jen.
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Hmmm - donkey urine??? Trying to conjure that up!
I know I packed to much but took a bunch of dresses, few tees/tanks. pair summer crop pants, flip flops, & warm stuff for the hotel. Guess I will try to travel in jeans going and long light flowy pants coming back. Have no closed toe summer shoes if it rains though. Need to figure that out.
Were you guys really out and about after surgery? I have surgery Wednesday and fly home Monday.
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Jen, I do not have cancer but have a genetic mutation/ ugly family history that indicates it is coming... so I had PBM. I did not want breast tissue left over either because that would defeat the purpose of me going through with this major procedure.
I asked NOLA about the BS I was scheduled with as I had not seen his name mentioned - only Dr. Stollier's - & I was concerned. They assured me that Dr. Gray does a lot of these surgeries and does them super well or they would not continue to use him. They explained that the BS you get usually depends on the day of the week your surgery is scheduled.
I met Dr. Gray just before my surgery & I felt totally comfortable with him. I reminded him I was having nipple sparing and requested he be extra careful as this was very important to me (and one of the main reasons I traveled to NOLA). We both chuckled at how I expressed this and he assured me everything was going to be great. The anesthesiologist was there, too, and he promised it would be fine. Everyone at NOLA had such a gentle confidence and good sense of humor.
Praying for you Karen, Dana, Eva, and Caitlin. Peace to you all!
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http://www.scsh.com/our_physicians/alan_stolier_bio.html
I had Dr. Stolier and he is top notch. He's even on the professional advisory board of BC.org. If you read up on him you will feel very reassured about having the best breast surgeon. The NOLA website is all about reconstruction. But if you dig a little more, you will find that Sullivan and dellacroce know that the priority is get all the breat tissue out with clean margins.
One aspect I didn't realize before going to NOLA is hard they work to preserve the lymphatic flow. Dr Massey has referred to many BS as 'rooters' as they dig around the axilla for the sentinal node, potentially causing as much damage as an axillary node dissection. The NOLA docs and BSs (not just Stolier) work as a team to do what is best for US. When I saw Dr stolier at pre-op, he chuckled at the markings DrS made on me. My tumor was near the surface and dr0 -
I truly was out and about, and ready to leave the hospital on Day 3. Certainly not setting any records, but I was glad to slowly get some walking in. They start you walking by the next day after surgery in the hospital, and increase it from there. Personally, I think the more walking you do, the quicker you recover. I was up and moving asap, by my own decision. They did not force me, just encouraged me. I've had other surgeries and this has been a key piece to feeling better soon. My dh and I shuffled all over the place in short spurts with lots of rests. You do have to be careful to get in lots of rests. It's easy to overextend yourself by going too far with no rests, then you'll feel rotten later. It's about balance. A little here, a little here. Up and moving.
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Oops!
Dr Stolier knew he'd need to take more skin than Dr Sullivan marked. More cancer was found during surgery than anticipated with screenings. Even more skin was taken than marked to get clean margins. The priority is the mastectomy if you go there for mastectomy and reconstruction.
I've been in NOLA in Aug a couple times. The horror of the heat! What's crazy is I'm considering having my next surgery in aug.
I was out and about after surgery. With pain meds and plenty of naps I was out for a few hours at a time. Restaurants, park, cemetery, and shopping. A decent amount of walking. My slogan for my Dec Stage 2 was Eat, Sleep and Be Merry! I stuck around a few extra days to have that Monday post op appt that is optional for stage 2. And to take advantage of the peace and quiet and beautiful city to rest and heal while not having to be mom and wife.0 -
So to those of you who were up & about after surgery, were you really able to lift your arms to pull anything on over your head, or did you focus on things that button/zip up the front? Someone mentioned sundresses, which sound cool and comfy, but wondering how to get them on! Maybe I can find a few that button up.
.Trying to schedule now. Can't imagine chemopause, wig, and early summer in New Orleans. Maybe a good time to switch from wig to scarf!
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You won't be allowed to lift your arms after stage 1, it's sort of irrelevant whether you're able to. You should stick with things that button in the front or things you can step into.
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