NOLA in September?
Comments
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Glad you're feeling better Jinger. Whoa - that is amazing about your nipple! I had no idea they would still respond to cold and touch when you've had nipple-sparing recon. The body is just so cool sometimes.
Drains. Ugh. Sigh.
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Question for stage II folks...In August I will be likely having a breast lift, a fat graft, removal of an extra skin flap, reduction on one side and lipo on thighs and knees--does any of this require drains???
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Nipples/tats - I was going to go for no nipples and just tats later, originally. Dr S gave us the stats regarding the safety of nipple sparing, and this was very exciting to my dh. I was relieved to know that nipple sparing had some safety features to it, as my BS had simply said, "no way". Dh was not excited about tats, but had determined he'd adjust to whatever I decided. In the end, I'm glad I did the nipple sparing and went the nipple route. Obviously, dh is more excited about it all, but in the end I am too. I think when we're in the crunch of all the adjusting we'll need to do, it's hard to sort out. And I'd have adjusted to whatever I needed to adjust to. Having nipples and areolas done at Stage 1 added to the "normalcy" factor for me, which I had not anticipated. I was surprised at how glad I was afterward, since I'd originally planned on tats.
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Gosh......I promise to not make this update too long Minn...Or do I? huh huh! HEY who am I kidding! Thanks...ya know sometimes this is therapy!
I REALLY, REALLY, REALLY want to go end of Oct to Nola...thurs thru Monday-ish? It will probably happen just still sorting things out. I missed those comments (better body?) too but I was MIA for a few mos and not sure I've caught up completely. Nordy, yes, I need to commit to the half.....I am so friggin superstitious as everytime I've ever started training something happens......I sold my previous home and had to move and the next year when I tried again was diagnosed w/ BC. MUST start training tho.....long runs on the treadmill is ok right? Seriously, the next couple mos I'm inside for workouts.
OK, forgot who mentioned this.....BUT....my non radiated recon'd breast does indeed hang a teeny bit lower than the radiated-my local BS asked if "he was going to lift it". Honestly it's not bad BUT......
1. I want to drop some weight.
2. DR D told me "Give it a year"
3. At approx 1 year I WILL be close to 2 yrs out of rads ....Sooooo for me I'm waiting. My local BS said I could get lots of dollars if I wanted to table dance....and I totally agree!
On the f/u: YES-Dr Lagarde DID say she recommends a mamo at I think 1 yr(?)......for baseline and to follow for fat necrosis or whatever......BUT...For me......I'll probably NEVER see Dr. Lagarde again. Dr. Lagarde was part of the recon team and genuinely feel they wouldn't use someone who isn't qualifiedand safe. BUT, I discussed all this w/ my local BS, w/ whom I WILL see again and who knows ME and has followed me, and in my opinion saved me- due to her spot on identification/early detection for 4 years. She has been on the money w/ EVERYTHING, she is top notch and unpretentious. I think part of the reason she even ordered the sono was because she didn't do my mastectomies. As a professor who completed fellowship in Breast surgery at MD Anderson she is VERY cautious and I think her BIGGEST hesitation about me going to Nola was the fact that Dr. Lagarde hadn't done a breast fellowship. I discussed this 'recommended f/u w/ both her and the med onc I have to follow w/ and both said 'no mamo or MRI necessary.' THEREFORE.....I think you need to discuss your f/u w/ the MD you plan on following w/ and come to your own decision/comfort level w/ the team you'll be following w/.
OK,too long AGAIN! sorry! xoxo, goodnight.... gals!.... the stars at night...are big and bright....deep in the heart...of Texas!-but it's Waaay too freakin HOT here!
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PlainJane - I LOVE your long posts! And I'm glad to hear that your doc and my doc are saying the same thing re: mammo's!
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Holtbolt, from what I understand, it is expected that about 1/2 the transferred fat survives. Each time was an improvement. I had a lot of deficiency, and I think the fat injections really made a huge difference for me. Now that I've lost some weight, the breasts themselves don't seem smaller, but I do feel that there is less fullness around the top of the flaps. Luckily I still have this one more tweak planned and can see if anything can be done. If not, it's no biggie since I don't think anyone can see a difference. Plus, my trainer is helping me build muscle in that area to fill it in.
Sara, I think the reduction and excision will require a drain, but the breast drains aren't in for long.
Jinger, so glad you had a better day today!
Funny, Marcia, but I don't intend to require a wheelchair! I could push 2tzus around though if she wants one.
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Hi Marcia!
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That's funny PJ - I was training for a half when I was diagnosed last year too. I'm not quite ready to train yet, but I DO feel need to retake that half when I'm finally healed!
And my non-rads breast is also lower than the rads side. Dr. S told me the rads side will drop eventually, but we'll see.
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I am now 3 weeks out from my DIEP. My skin/nipple saving mastectomy was in Dec. followed by 25 rounds of radiation. I came to this site to gain insight into the journey I was going to undertake. Yes we each have a different story. I did not use NOLA, but did use a facility in the NO area. The doctors discussed in this thread were part of the group I used before Katrina. Life changed and many of the doctors involved in DIEP reopened offices in other places. I feel very lucky to live in an area with such great expertise in helping women move beyond breast cancer, but also realize there are other such places throughout the US. We each need to be our own advocate and find the doctor and facility that will restore our health. Unfortunately, insurance often gets in the way. My doctors and Omega hospital worked with me and my insurance. Both times by the time I had surgery I was at 100% coverage....made things a lot easier. My out of pocket has been very doable.
My DIEP was done on June 10 by Dr. Khoobehi. Things looked great coming out of surgery. There was concern over the radiation damage to the skin of my breast. The surgery was 5 hours. I was taken back into surgery at 1:00 am on Friday....there was a hematoma and blood clots in the veins/arteries ....3 more hours of surgery. There was tissue damage due to the lack of blood and the lack of skin flexibility. But my stomach looks great. The breast is in a wait and heal pattern, then we will decide what to do next. My breast drain was removed the morning I left the hospital, the other two drains 3 days later. I stopped all pain meds at 1 week. I get tired easily and have only this week begun to drive. The results are not textbook, but I am not disappointed. My body had healed quickly due to the skill of my surgeon and the blessings from above.
The black garment has been the worst part of this entire thing. Trying to figure out how to potty the first day was a process....peed on myself and by the time I got a shower felt like a little kid who wet the bed. My tailbone took a beating....so I am in the underwear over group.
Thanks to all who have shared their experiences. I was the only one at Omega from Friday to Monday morning and had 2 nurses taking care of just me.....not certain I would trade that for companionship, but I do appreciate the women posting here.
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Sara~I had breast drains in, but they were removed at post-op before I flew home. No hip drains!!!
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Spring.... please put me down for Stage 2B (revisions) on December 3rd (my son's birthday), Dr. D., St. Charles... thank you!
Have a great 4th of July weekend everyone!
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Thanks Sandy and Trish--short term drains I can handle!!!
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Nordy and PJ, if you do decide for sure to do a Marathon in NOLA at end of Oct, I will add it to the list above!
I have not heard back from Jeanine on my Tats and "tweeks" request since she emailed me and said she would get back to me Monday past. Next week I'll call.Holtbolt, will add now!
Phase 2 was much easier for me, though I had a LOT of lipo on upper hips/thighs and for 3-5 days that hurt like a MOTHER!!!!! The plication really got old after a while, but in the end, i am glad I did it.
Thanks Minn! 0 -
I go to a few other cancer boards, and have for years. I feel like I have been defending NOLA and the decision to go there lately.
I don't really understand why. I personally feel like everyone should do their research if possible and make the best decision for themselves. It just happened to lead me and most of us on this thread to NOLA.
I just wondered if anyone else felt this way? i don't feel like NOLA is the ONLY choice just the best choice for me.
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- 2tzus, I think I will be there from Tuesday Oct 26th to maybe Monday, Nov.1st. By then, I will be desperate for a vacation, so I'm going to stay as long as I can be away from work. Eve and I are going to start working on a fundraiser which we can all be a part of, benefitting Breastoration. I think we will aim for Oct 27 or 28th, in the evening. We are also considering getting a group together to do some volunteer work at Hope Lodge, possibly planting flowers or carrying out some other task to help them. They've housed a lot of patients for the Center (including me!) and it will be great to give back to them.
I obtained a letter from the Center last year stating that I'd just had surgery, and Southwest allowed me to pre-board for both of my flights home, which meant that I got to sit in the first row. I had to ask at the gate, but they didn't even read the letter. If there is something you are unhappy with and you decide that you want revision after stage II, you can just request it. I think I am probably the queen of revisions, but there was a lot of work to do to get me to where you ladies are after one surgery with Drs. D and S---you smart ones who go to them to begin with!
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Yes Melinda! FORCE used to be a great place to get info as a pre-NOLA patient. Now you can't even say NOLA without someone jumping down your throat. And it's sad, because it wasn't that way before my stage 1. I met 2 amazing ladies in person that I met on the FORCE board the night before my stage 1.
I am also pretty quiet on the YSC board about my recon unless it is just general info. I do get a bunch of PM"s on there. It seems to be better now that you and Jamieh have gone there, but there is still a lot of negativity thrown out there about NOLA.
It totally bums me out. I find it odd that people are suspicious because there are so many of us out there who are absolutley ecstatic with out results and our care. I guess that is because seeing positive versus negative is completely out of the norm for our society. What's the statistic...that if you get bad service somewhere you tell 10 people, but if you get good service you only tell 2 or 3?
I've seen gorgeous work from other surgeons too. And if someone chooses another doc or team and is 100% happy, then more power to them. What I hate, although I usually bite my tongue, is when I see docs telling patients no to autologous flaps because they are 'too thin' or 'too heavy' and these women DO have a choice.
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fwiw, I didn't go to NOLA but I feel like I'm often in the same position in talking about implants vs. flaps. Once you've had flap reconstruction, you realize it's everything you expected it to be, and sometimes more. The opposite is usually true of implant recon, esp years down the road. I guess we all have to walk that fine line between seeming like we're pushing an agenda on someone and making sure they have the information they need to make the best decision for them.
Having said that... this thread is about the NOLA docs, so if someone doesn't like people talking about them here then they obviously have a reading comprehension problem
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Hi ladies HAPPY 4th! Honestly, This year, I think I am celebrating my independence from ducts/lobules, future issues, etc this year, esp after a couple of appts w/ local MDs here. At any rate! sorry to be so 'all about me' BUT! Over the past few weeks, as I watch the stock market continue to decline, my home value decline....(I purchased my home almost 1 year prior to being diagnosed w/ BC)......I continue to believe(KNOW) I made the best investment that I continue to have no qualms about. I am healthy, I don't worry about every impending screening exam/f/u. and yes- I look BETTER! And the roof over my head-WHO cares, it can change! Onward. Hope you all have a fabulous wkend!
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Let it be known that I am now the Queen of the Retractable Post and that I am happy to be in the NOLA sorority with you fine people. Thank you for helping me with my decision to go to the best surgeons in the world and all else will remain unsaid on this wonderful forum. LOL LOL
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Awe shoot hotbutt. I am so embarrassed...I cant believe you saw me sitting outside of Nordstoms Flipping the Bird.
Hope everyone has a great 4th! Drive careful if you are traveling.
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See, now I've made Deja look ridiculous because I retracted my post... no one knows what she's referring to and now they might think she's crazy... LOL Sorry Deja, my bad!! LOL
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LOL
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btw, I don't shop at Nordstroms... too pricey...I'm a Kohls kinda girl.... when I score the 30% coupon, you would think I got a Golden Ticket to the Wonka factory.
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Im not a Nordstrom girl either.
I too love Kohls- I love that 30% off...Had several in a row...but now they are just sending out 15% ones...They arent very fun.
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tedwilliams-welcome abroad on this journey, although you it may not have been a trip you wanted to take. Hope you continue to heal and pottying gets easier! I don't know Dr. Khoobehi but Dr. Stolier is wonderful!!
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Dear TedWilliams,
I too had my DIEP at Omega in 07 & 08 .Didnt need a BS as I had mastectomies at MD Anderson 2 1/2 years prior. I do know Dr Stolier and think very highly of him.
Please rest and take care, recovery is not a marathon! (PS used to live in Biloxi and then Flowood MS after Katrina)
Gentle hugs,Marcia
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I started to post my thoughts on everything going on then my computer blinked or I hit the wrong button and erased it all-it was really long....now I don't know if I want to retype. ) :
I think it was very insightful too, maybe for the first time in my life! figures!!!!
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Hey Minnesota!
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Welcome Tedwilliams...Somehow I missed your Post.
I hope your flap will be ok.
You are only 3 weeks out...So do take it easy & listen to your body...Rest is always good : )
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Hmmm.... I agree about the Force website - I used to go there. In fact that is where I met Trishia, Soccermom and 2 other ladies that I subsequently met in NOLA while was there for surgery. I quit frequenting there when the level of hostility got too high. LOL... and if you hadn't noticed, I have no problem sticking up for what I believe is fair, or right, or letting someone know when they have it completely wrong..
So... it must have been realllllyyyyyyy bad for me to quit going there! I do agree though, this thread is specified as NOLA thread... so for me, people coming here to bash ANY docs in NOLA is invasive. But you all know this about me already! Tedwilliams, rest and heal well. It is a matter of time to get back to feeling "normal" again, but it will come!
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