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NOLA in September?

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Comments

  • Zenful
    Zenful Member Posts: 394
    edited December 2014

    Glad to hear you are doing well, Gram. Sounds like you are nearing the finish line. Merry Christmas

  • julieho
    julieho Member Posts: 164
    edited December 2014

    Hi,

    I have a few questions about the next steps. I had my Stage 1 on December 10th, so I am almost three weeks out. Doing much better pain wise but still get really easily wiped out and I sleep around 10 - 11 hours a night. Some nights it takes me awhile to get to sleep but then I sleep in. Because I am still on my back and propped up in bed I don't get the best nights sleep, which may contribute to why I sleep so long.

    I walked 2.5 miles on the treadmill today at a fairly good pace, which felt great but then I feel like I am just exhausted. Still not doing much. Just a few walks in the fields with my husband and dogs, a movie here and there and that is pretty much it. When did you all start getting back into a more regular routine? I did vacuum and dust yesterday, which felt good but again, that was pretty much it for the day.

    My next question is about Stage 2. I live far away so I don't get to see my doctor before surgeries. I met Dr. Wise the day before Stage 1. I want to schedule Stage 2 for early March, around the 3 month mark from when I had the Stage 1. How will I know what will needed to be done? I have heard some people have a lot done at Stage 2 and have to wear full body compression for a month, etc. I am hoping I just have to have some fat grafting to fill out my breast a bit, especially the one that is smaller than the other one and whatever they do to the abdominal scar to "clean it up". My scar and belly look fine but I hear they somehow make the scar smaller, etc.

    What does that involve? I am really hoping I don't have another recovery like this one. I am feeling so much better now but the first 10 days stunk and not having energy also stinks so I would love to hear from some of you about how you went about this.

    Hope everyone had a great holiday. Ours was quiet as could be but very nice actually. No expectations this year and I found I didn't mind that one bit.

    Take care,

    Julieho


  • Zenful
    Zenful Member Posts: 394
    edited December 2014

    Julieho, what you describe sounds very typical. Your body has been through a lot and it is a slow process which requires a lot of patience. I was off work six weeks and still would get tired after a full day of work. Each day gets a little better. For Stage 2, I waited 4 months and I was glad I did. I was much stronger at 4 months than I would have been at 3 months, and Stage 2 recovery was much easier. Was able to walk the French Quarter a couple days after surgery, and back to work in two weeks. Your doctor will know what is needed for Stage 2, but be sure to point out any areas of concern. More than likely, you will both be thinking the same things. Glad to hear you are doing well.

  • Sassy01
    Sassy01 Member Posts: 29
    edited December 2014

    Julieho, Stage 2 is much easier! I was out shopping in the French Quarter a couple days after surgery! I was not in any pain, but just sore like you would be after a good workout. As for what is done at Stage 2... Everyone is different. I actually had to submit some photos to Laura to pre address some issues I was having. Dr. S addressed those and and more that I did not even notice! I had lots of lipo and fat grafting. He got rid of the side boobs without me even asking- very happy with that result! He injected my breast scars with a steroid or something to thin them out as they were turning keloid. I'm completely amazed at how pencil thin and flat the scars are now! I've heard of people lowering the abdominal scar- I thought about it as my pants sit right on this. It's quite irritating, but wasn't worth it to me for the additional incisions. The abdominal scar was actually lengthened by 3-4" on both sides to get rid of the dog flaps(or hip nipples) but really looks fine and never hurt. I went back to work 1.5 weeks after surgery. I won't lie, I'm still pretty tired by the end of the day, but it is getting better and better. Stage 1 is definitely the hard part. Stage 2 was 1,000 times easier

  • Kb33
    Kb33 Member Posts: 33
    edited December 2014

    julieho

    My stage 2 was a bit different. I also had to mail photos prior since I lived out of state. Because my diep side was more than 1 cup size smaller than the other and for some reason the flap turned or lowered. They could not just do fat grafting and had to add a very small implant. Sigh. They smoothed my abdominal scar out nicely...what a difference ... And raised the other breast. I am almost 3 weeks out. Been back to work since day 4. Working out started this week... Very slow and no weights. Mostly cardiac. I found that my breast has a small dog ear on one side that I think may need to be corrected and a have major side boobage on my non diep side and it is still half size bigger than deip side. Not sure if that will be a stage 2b. Really didn't want to pay anything out in the new insurance year. But giving it all another 2-4 weeks to settle and then decide. Good luck

  • Springtime
    Springtime Member Posts: 3,372
    edited January 2015

    Recording 2014 Surgeries for the record. I'll put a link to this page in the listing above!

    ----- 2014 -----

    Jan 8 - kelleyb - stage I DIEP, Dr. S., NOLA

    Jan 8 - maggie85 - stage I DIEP, Dr. T., NOLA

    Jan 10 - DianneNC - Stage 2b, Dr. D., NOLA.

    Jan 22 - Marsha1970 - Stage 2, NOLA.

    Jan 22 - Pamaim45 - stage 1 hip flap, Dr. S., NOLA.

    Feb 5 - Momof5kids - Stage 1, bilateral hip flap with implant. Dr. S, NOLA.

    Feb 6 - Zenful -Stage 2, Dr. D, NOLA

    Feb 7 - StartingOver - Stage 1, DIEP, Dr. S., NOLA.

    Feb 10 - KaseyAnne, stage 2, Dr. T., NOLA

    Feb 12 - BetNY22 - Stage 1, Dr. M., NOLA.

    Feb 18 - Lisa214 - bilateral prophylactic mastectomy with Dr. S, NOLA. (BRCA+).

    Feb 26 - Pattysmiles - Stage 2, NOLA.

    Mar 14 - vwbordelon - Stage 2.

    Mar 14 - Gramof2boys - Left MX with temporary implant, Dr. T, (Dr. Stollier)

    Apr 3 - Dixie60 - Stage 1, NOLA.

    Apr 3 - maggie85 - Stage 2 with Dr. T., NOLA.

    Apr 7 - Daylekbraca2 - Stage 2, Dr. S., NOLA.

    Apr 8 - Judy_63 - Tattoos!!

    Apr 9 - tlbradyful - Stage 1, 3 flap extended DIEP, Dr. M., NOLA.

    Apr 9 - KooKoo621 - Stage I, Dr. W., NOLA

    Apr 10 - BDavis (Betsy) - Tattoos!!

    Apr 23 - sgcam - NSP BMX w/ DIEP, Dr. D., NOLA.

    May 8 - Dragonfly1976 - Revision surgery, Dr. S., NOLA.

    May 20 - Koalabear - stage I NSM extended DIEP (possible GAP - depends on in person consultation)

    May 22 - Pamiam45 -Stage 2, Dr. S., NOLA

    May 29 - Momof 5kids - Stage 2.

    July 2 -tlbradyful - stage 2, Dr. M, NOLA

    July 11 - KooKoo621 - Stage 2, Dr. Wise, NOLA.

    July 29 - Rivkyw - PBMX, BRCA pos.

    July 30 - NOLA504 (Nicole) - DIEP Stage 1, Dr. S., NOLA.

    Aug 19 - Marty J - Stage 2D, Dr. M., Charleston.

    Aug 20 - Gramof2boys - Stage 1 RMX SGAP, Dr T., NOLA.

    Aug 27 - Mags20487 - Stage 2C, Dr. M., Charleston SC.

    Sept 3 - TedWilliams - This will be my 3rd flap surgery. Complications with my DIEP and SGAP. This time will be a Latissimus Flap. Dr. D., NOLA.

    Sept 9 - Kb33 - Stage 1, Dr. T., NOLA.

    Sept 10 - Koalabear - Stage 2, Dr. S., NOLA.

    Sept 15 - m1970 - Tattoos! with Vinnie in Maryland

    Sept 18 - ThinkPink4ever - Stage 2, Dr. S., NOLA.

    Sept 24 - Mary625 - Stage 1 DIEP, Dr. M., NOLA.

    Sept 24 - Dixie60 - Stage 2, Dr. D., NOLA.

    Sept 25 - Kim_L - Stage 2 revisions, Dr. D., NOLA. (had BMX with SGAP)

    Sept 26 - Tlbradyful - Stage 2B, NOLA.

    Oct 2 - Sydgrace - Stage 2 redux, NOLA.

    Oct 23 - NOLA504 (Nicole) - Stage 2, Dr. S., NOLA.

    Nov 6 - MyDiane - Stage 2, Dr. D., NOLA.

    Nov 11 - MerrellGirl - Stage 1 Stage 1 DIEP/SGAP combo, Dr. D., NOLA.

    Nov 14 - Seashellie - Stage 2, Dr. W, NOLA.

    Dec 3 - Sassy01 - Stage 2, Dr. S, NOLA.

    Dec 3 - TedWilliams - Stage 2, Dr. D., NOLA.

    Dec 9 - DebraR - Stage 2, Dr. S., NOLA.

    Dec 11 - Kb33 - Stage 2, Dr. T., NOLA.

    Dec 16 - Maxine58 - Stage 2B, Dr. M, Charleston

    Dec 17 - Gramof2Boys - Stage 2, Dr. T., NOLA.

    Dec 30 - Stage 2C, Chicago.


  • Gramof2boys
    Gramof2boys Member Posts: 60
    edited January 2015

    So I'm 3 weeks out from Stage 1 redo /Stage 2 and still have little to no energy. I had a unilateral stacked DIEP on my left breast which had to be redone because that gap flap failed. I also had my hip flaps revised and a tummy tuck. So I guess that's alot of surgery. I get up feeling well then as the day goes on I just want to sit or lay on the sofa. How long does it take to feel better. I would like to go shopping and have gone out some but one store and I'm done. Any advise would be helpful.

  • lastar
    lastar Member Posts: 553
    edited January 2015

    Hi, Gram -- I'm having similar surgery in 2 weeks. I'm wondering how much you are able to do with your right arm. Are you able to do much with it or does the abdominal work trump the absence of surgery on the right side? I hope you are just in the 3-week slump and that you will turn the corner soon. I'm so happy for you that Lefty is doing well! I'll be following your recovery, especially since I'm hoping to get back to work at least part-time after 4 weeks. We'll see. Rest well!

  • Gramof2boys
    Gramof2boys Member Posts: 60
    edited January 2015

    LAstar- I could do whatever I wanted with right arm, I was told not to lift more than 10lbs for 4 weeks. I really didn't have much pain at all. Stomach was and is still very tight. The drains were probably the worst part again. I will probably go back to work at 5 weeks, that's what my plan is right now. I sure hope my energy is back by then.

  • lastar
    lastar Member Posts: 553
    edited January 2015

    That's really great news, Gramof2! You have eased my worried mind a bit. I hope your mojo is back soon!

  • Sassy01
    Sassy01 Member Posts: 29
    edited January 2015

    Hey all, Are any of you dealing with lymphedema? Mine kicked in pretty quickly after my mastectomy(11 nodes removed on left, and 2 on right)in January of 2014 and I have been trying to get it in check ever since. It goes in waves. It got so much better after Stage 1 in August- where I hardly had to wear a sleeve anymore. But then after stage 2 in December it's back to being terrible. I played a couple rounds of pool with my boys on New Years and my arm blew up and has stayed that way since. Crazy to think that something that low impact did that. I foolishly played again today and It is so bad today that I feel like it's putting pressure on the outside edge of the foob. I'm back to holding my arm tucked up against my body. I never thought I would consider lymph node transfer but it's actually been going through my mind all day. My arm is so weak I struggle getting ready for work in the morning. I will admit I don't do the lymphatic massage myself... I get in too much go a hurry. Do any of you have any thoughts/knowledge on the node transfer? And, does it have any effect on the reconstructed girls?

  • PinkHeart
    PinkHeart Member Posts: 271
    edited January 2015
    Sassy,

    My heart goes out to you having to deal with LE after all BC patients go through to begin with.

    I personally could not bear the thought of spending the rest of my life with the pain, hassle of treating it, and being encased in a sleeve. So even though there are no guarantees I chose to have a lymph node transfer. It's been two years and I have not had any puff ups! It did not interfere with my recon breasts/flaps but there is another scar to bear though mine is faint and under my armpit. My donor site scar is hard to find. Mine was from the groin which is only donor site Dr Kline uses. He does not take nodes along with DIEP flap as some docs do. Sometimes patients get relief from LE from having flap surgery. I was fortunate that my insurance paid with no hassle.

    Dr Sullivan can def help you as he is highly trained in LNT. He uses the neck for donor but please confirm that there.

    I hope you get relief either spontaneously or should you decide to try surgery. First for a cure for BC with LE right behind!
  • Springtime
    Springtime Member Posts: 3,372
    edited January 2015

    Mags, I added your stage 2 surgery with Dr. M in April to the listing above.

    Sassy, have you considered going to a physical therapist who specializes in LE? They can do special stuff. I get most of my LE symptoms in the side of my chest and breast. I have learned over the years what brings it on, and what stuff to wear. for me, a really tight Under Armour T helps, especially on plane flights, in addition to the sleeve. Another thing that makes mine "flare" up is inversions in Yoga (going upside down). I can't hold down dogs for long, I have to go into plank. Unless my heart is really pumping, then it seems to help. I've found Bike Riding helps clear things up, I think because my heart is going strong for an hour, and it just clears everything out. Rowing of any type helps (constant movement) and believe it or not, weight lifting, within reason, helps. I've learned with trial and error what helps and what does not. I know what I've stated her may be the opposite for some people, which puzzled me at first, but this is me. You just need to determine what it is for you.

    I agree the whole Playing Pool thing is crazy!!! It just goes to show you never can tell with this crazy thing! I find this the most annoying SE of this journey, and I have a mild case with only 3 nodes removed. (It was supposed to be just the sentinal, but she took 2 others, which still makes me crazy! I wonder if she just left those two if I would have been fine! All were clear, so all healthy! ugh).

  • Sassy01
    Sassy01 Member Posts: 29
    edited January 2015

    PinkHeart,

    Thanks for the input. Dr. Sullivan does lymph node transfer? Dr. Sullivan did my DIEP. I was so against it thinking why would I remove nodes from one part of my body to another and chance the same issue happening somewhere else. I never even talked about it with him. They just wrapped and protected my arm for both surgeries. Now I'm kicking myself. I am a little concerned about having them go after nodes in my neck. I went through thyroid cancer almost 13 years ago and I'm not sure how many they took at that time!

    Springtime, yes I have been going to a PT since April that specializes in Lymphatic Massage. It really does help with getting the swelling down. But what happens is if I don't put myself on their schedule on a regular basis I get in trouble and have to wait when I have a flare up. They are super busy, so now it's going to take me a couple weeks to get in. I'm probably just going to have to go every other week without fail. The surgeon that did my mastectomy went after clusters of nodes and didn't know how many he got until the path report came back. All 13 were clean, praise God! I'm sure part of my issue is that they found a tumor in with the lymph nodes that was sitting on a nerve. So, of course they dug it out and really irritated that nerve. My range of motion is not what it should be by now. I'm hoping time will fix that. I'm just honestly fed up with small things puffing it up. I usually do not complain about anything but this flare up is a good one with the tingling fingers and nerve sensitivity from the a shoulder to finger tips. I hate feeling restricted!

  • Lilly2015
    Lilly2015 Member Posts: 1
    edited January 2015

    Hi All! I haven't been on this page too much, however I wanted to know if anyone was going to be at NOLA around January 19 - 29th? I'll be doing my stage I in NOLA. It's getting really close!! :)


  • mary625
    mary625 Member Posts: 154
    edited January 2015

    Hi, all. Does anyone know if the Center is staying in the CIGNA network? If anyone has gone in 2015 or is set for surgery using CIGNA, please let me know. Tx.

  • Stix
    Stix Member Posts: 610
    edited January 2015

    i was told they were in NOBODYs in network b/c they WON"T take the negotiate fee. not sure how true that is. someone chime in.

  • Zenful
    Zenful Member Posts: 394
    edited January 2015

    Itwas in network for me. Medical Mutual of Ohio. I can't begin to tell you how it works, I just feel blessed that it did.

  • Stix
    Stix Member Posts: 610
    edited January 2015


    Hello ladies. How long did your scratchy throat last after general anesthesia?

  • mary625
    mary625 Member Posts: 154
    edited January 2015

    Scratchy throat only lasted 2-3 days. Miserable 2-3 days for sure. :(

  • julieho
    julieho Member Posts: 164
    edited January 2015

    I had throat and swallowing problems for at least a week. They did have to incubate me twice, I went back under after an hour in recovery for a bleed. Not sure if that is why.

    I am five weeks post op and starting to feel much better and energy is returning. Still slow some days but feeling better each day now.

    Hope you feel better soon. I drank a lot of tea with honey to coat my throat. Also just for general healing my doctor told me to take 2,000 msg Vit C and zinc tablets every day.

    Take care

    Julieh

  • Stix
    Stix Member Posts: 610
    edited January 2015

    thanks julie

  • Stix
    Stix Member Posts: 610
    edited January 2015

    thanks mary.

  • Stix
    Stix Member Posts: 610
    edited January 2015

    i am feeling better. It is my 3rd day post op. Having pain I think mainly due to the jp tube. Trying not to move too much because this is my 2nd revision. I emptied my dishwasher today slowly with my opposite arm, took a quick shower and don't plan on doing too much more for the next 3 days for fear the implant might get displaced .

  • Kb33
    Kb33 Member Posts: 33
    edited January 2015

    well. It's official. 5 weeks post stage 2 and my nipple is finally starting to heel. Talked to PA on Thursday and they agree another stage 2 will be necessary to fix the size difference.... Yet again. Sigh. So... Looking forward to march to finally be done with this. I was wondering if anyone else lost nipple size after surgeries? I have had full feeling since day 1... But my diep side nipple is half the size it was prior to surgery. No clue why this happened. And looks a bit funny compared to the other breast. Perhaps I was hoping for a bit too much. Lol

  • Springtime
    Springtime Member Posts: 3,372
    edited January 2015

    I added this to the list!


    Jan 29 - hhayes91 - Stage 1 "body lift", Dr. D. NOLA. Also: bmx with Dr. Stolier prior to the recon.

  • Zenful
    Zenful Member Posts: 394
    edited January 2015

    good luck hhayes91. I had the same procedure with the same docs. Excellent results. They are the best!!!

  • Neta69
    Neta69 Member Posts: 20
    edited January 2015

    Hi everyone and thanks for sharing your experiences. I'm booked for surgery on February 4th with Dr DellaCroce. Not much time to plan and pack so I'm scrambling somewhat! What should I pack? What should I do to prepare? What should I expect?

  • Sassy01
    Sassy01 Member Posts: 29
    edited January 2015

    Pack light! Leave room in your bags for supplies that they will send home with you. I think they like you to wear button down shirts, but I didn't have any issues with loose fitting shirts going over my head. Loose fitting pants are nice too. Prepare by relaxing and knowing you are going to be in amazing hands with Dr. D and the entire staff. It is such a Spa like atmosphere you won't even feel like you are in s hospital. Expect great things!

  • Neta69
    Neta69 Member Posts: 20
    edited January 2015

    Thanks Sassy! Good advice. I'm working on getting all my ducks in a row here at home sorting out travel plans, flights, hotels and care for kids and pets etc. I have to get a bunch of preop tests done before I go and I'm stressing about not getting the results in time and some stupid administrative detail messing things up. I have to remind myself that compared to my double mastectomy, chemo and rads this really isn't something to stress about. I'm sure it isn't a walk in the park but hey, this time they are putting me back together so that makes it all good! ☺️

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