NOLA in September?
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Marty- sorry to hear about your DH having to go back in. Hope you get some sleep tonight.
Dr. Massey does not want us to have mammograms after a DIEP. She even sent a letter to my ONC and BS. She recommends a MRI yearly.
Zenful- You have come to the right place. I too, was not willing to give up muscle. My NOLA surgeon can do stage 2's in both Charleston or Chicago. That saved me traveling expenses. Feel free to PM me with any questions you have.0 -
So I returned today to ask my PS more questions about the recommended lat flap. Turns out he is recommending it because he doesn't know anyone who has had triple negative BC that hasn't had to have radiation, and feels it would be the best option if radiation is needed. My MRI showed no apparent node involvement, but we won't know for certain until the nodes are biopsied at the time if the mastectomy and reconstruction. My oncologist says no radiation needed if no lymph jode involvement. I asked the PS's opinion on DIEP flaps, and didn't discount it, but thought it might be a procedure to keep as a backup in case of failure. I am going to send in my paperwork to th NOLA group tomorrow and see where it goes. I can't believe that Body Lift or DIEP flaps are a bad choice for triple negative patients, although if I am required to have radiation, I assume the lat flap will hold up better than the DIEP flap. I will certainly raise these questions with NOLA.
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I wish I could help you with these questions. Please put a call into the the NOLA docs or Dr. Massey and see if someone can't talk to you about this, this week. I know they will be honest and answer any questions you have.
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Heading in tomorrow morning (10am) for Stage 2 with Dr D. I swear I was totally smurfed up. Glad they took pictures because I decided to go out for a swamp boat ride (more like a race) & Mother Nature decided to let loose! Needless to say it was an AWESOME but very short & wet ride. That plus the 2 showers with the Hebiclens, left me with not so smurfy marks. Oops.
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Zenful, I had my node biopsies prior to my BMX and DIEP for this exact reason. It's not standard but I was already surprised with positive nodes following what looked like a clean MRI the first time I had cancer, so I didn't want a repeat of that with the new cancer in the opposite side. If I had positive nodes I would have done a BMX with tissue expander at home, with delayed DIEP at Nola later. But fortunately I had negative nodes some went ahead with immediate DIEP. First PS said DIEP would fail if radiated, but the NOLA docs might have different experience. It's worth asking about.
I had my port placed with the node biopsy and NOLA does not do port placement so I would have had to have another surgery anyway. I didn't expect to have a recovery, and I was dragging at work for 2 weeks while I waited for the full pathology before I left for the big surgery. That took me by surprise because I had a lot of loose ends to tie up at work before I went on disability.0 -
Just an idea... I had bilateral breast cancer. I did the sentinel node biopsies (2 removed from one side and 3 from the other) at my local hospital. Then a month later (knowing there was no lymph node involvement and no radiation in my future) I had my bilateral mastectomy and immediate reconstruction. I'm really glad I did it that way now - but at the time it was not easy waiting to get the cancer out. It's okay to weigh all your options before plunging it. Tough decisions that none of us ever want to make!
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I did the sentinel node biopsy prior to bmx as well. Best wishes.
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Thinking about you Barb!!!
Hugs!!!0 -
Anyone have nerve damage from stage 1 in hips? I'm almost 4 months out from extended DIEP and I still have hip/joint pain. I also bumped into something last week and with no fat on my hip bone that sure hurt! I'm taking curcumin which should help if it was a joint problem - that's why now I'm thinking it must be nerve damage. I'm still sore in the breast area too. Hoping that time will heal all!
Hugs to Barb!0 -
Zen.. I didn't have radiation, but its my understanding that The NOLA docs have a way to work with it. I have heard they overstuff the side that will need radiation, and it gets revised at stage II. I have also heard they can put an implant in for radiation and then do the DIEP after. Personally, I can't see how a lat flap is any better... If anything I would think it would increase odds of LE, and of course uses muscle... so I vote for the NOLA docs doing their magic.
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I second that BDavis!!!!
Klanders..It is so early. It will take a long time to comepletely heal. I'm over 2 yrs. since my masectomy and my upper chest is still tender. Give it time my friend:) Same with hip area:)0 -
Klanders..I use tumeric too. Its also a cancer killer!!!
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I just got back from NOLA and I had a blast! Although the weather was cloudy, rainy and humid the whole time I still had a great time with my cousin.
I got my tats with Vinnie and they turned out nice. I felt everybit of it on my right side and wondered - how in the heck can people stand the pain that get big tattoss all over their bodies! One little nipple was nothing but it was no picnic. Glad when it was dont! Then I had my appointment with Dr. D. Yes he is awsome. I can't stress it enough what he will do for you. Long story short after the last failed surgery a few months ago I thought I was would be done and that there was nothing more that he could do and that would be it! - but oh no - Here he comes in with his marker and next thing I know - 1 more time!! He never gives up! Finally they are starting to look like breast!
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Klanders, I still have shooting pains in my incisions occasionally, and it is most sore on my hips and I don't like bumping into things. I think I had an extended DIEP because the incisions wrap around to my hips, 180 degrees around my waist. It's almost like its sore where the drains came out. It's almost 4 months out.
Geralyn, so you had surgery on one and tattoo on the other breast? I'm glad you are happy with the results so far.0 -
Thanks for the encouragement! Glad to hear I'm "normal." :-). I'm taking tumeric, too... Along with a ton of other stuff! Plus eating healthy. (mostly - I have a weakness for sour gummy worms!)
Glad to hear things in NOLA went well for you Geralyn.0 -
Zen, I agree with BDavis. I'm wondering if your doc does many or any dieps. I can't imagine a scenario where that would be considered back-up to lat flap, tho maybe vice versa. Hey, gmp! I get to finally meet Vinnie in Dec to finally have my last tattoo. I am anticipating pain, since it is so far out now. Oh, well. Glad the old nerves are regenerating. I wonder if I could go in there with a Hurricane go-cup! Good luck Tomorrow, Barb! Sounds like so much fun in the swamp! Great way to spend the pre-op day! Btw, I'm an old-timer two-timer alum. Welcome to my younger sistahs!
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Hi Marsha - my chest wall is really really messed up from prior nola failed tram flap with many issues. I have had 3 surgeries so far with Dr. D trying to correct this. So my last surgery in April when he tried to fill in a crescent shaped flap from my back and put on my left to fill in the whole side and a lift to match my right implant side. Also it is to low and my bra goes across the bottom of the flap so I need a lift but because of the tram I had this is a challenge. When I had surgery in Apri I had 2 good arteries, good flow but when he put them together they collapsed. Probably from to many surgeries or whatever - don't really know. He spent 9 hours trying to get it right for me. So basicall the whole surgery was a wash. But he said he had 1 more thing up his sleeve at the time. So he wanted me to get the tattos and I thought this would be it and he couldn't do anymore for me. But that was wrong! I have to schedule another surgery - he didn't give up. He is goimg to push forward all the fat under my arm forward or soetnhing like that and inject fat all around. So I have to still schedule that.
Hi Minnesota! the tattoo wasn't that bad - really! I mean it is only a quarter size nipple! But my left side with the implant has alot feeling but probably not as much as so I did before masectomy (4 years ago) I got an idea what it feels like to get a tattoo. Just saying I felt it and can't imagine how people can do their whole body. It must hurt like hell on normal skin!
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Zen, I'm not triple neg, but did have radiation. My DIEP flap turned out perfect. No issues whatsoever. I had my Mx prior to rads, then waited 6 mos. to have the DIEP done. Some PS are now putting in expanders and doing skin sparing Mx prior to radiation. Then removing the expander afterward and doing DIEP, GAP, etc.
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Klanders...are you scheduled for stage 2? I too still have a descent amount of discomfort and still can not work out. I guess we all heal differently
Has anyone only done one surgery? I had sgap 4 months ago and am anxious to feel strong again. They are not perfect but I am overall pleased. Just wondering if stage 2 would loosen up some scar tissue in addition to revisions. Maybe massage therapy? Thanks 0 -
addidas1120, massage is really good for loosening up scar tissue. I saw an OT for early lymphedema issues, and she gave me some good tools for massaging scars. I couldn't have gotten by with one surgery -- they were too big! Recovery from Stage 2 is worlds better than Stage 1.
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Thanks LAstar. mine are bigger than I d like but its been a tough recovery and think I still need some time to heal
I have heard Stage 2 is a much easier recovery.0 -
MTPTTeacher, I added your surgery date on Sept 10 to the list above, per your PM.
Zen, I had to have radiation and the NOLA docs were great. I don't personally see what triple negative has to do with anything reconstruction wise, or radiation wise. Rads are recommended for node involvement, as you say, and if tumor is over 4CM (mine was). Of course, I am over 5 years out, and things may have changed, but I'd be surprised.I looked at the lat flap before discovering NOLA. It was recommended locally over implants because of the radiation I would likely need. It takes a muscle, and I am very active. Once I discovered NOLA, I was thrilled because there is no muscle involvement. Lat muscle is pulling down windows, lifting out of chair. I do yoga, really wanted to keep that muscle!
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Thank you for adding my name, Springtime!
Could those of you who had bilateral DIEPs tell me, is walking around very easy by day 9 or 10? I'll be in NOLA and would love to rent a wheelchair at the zoo to see something in New Orleans before I go back north
Am I fooling myself and will I be in the hotel room after the hospital most of the time after surgery? Thanks for your input.0 -
Mtpeteacher - since we all heal differently, there is no way to answer the question short of giving you false hope. Some women have talked of siteseeing and going out to dinner at that point. Some went for rides on the street car. I was going a bit stir crazy by that point, but really wasn't up to doing much. A walk of a few blocks every day. I flew home on the 9th day. You will do well with my fav doctor!
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MTpeteacher, it's pretty individualized how you are going to be feeling. I had a post-op appointment at one week and headed home that day. It's a 12 hour drive and we split it up over 2 days. I was feeling ok, but not great. My recovery was fairly quick and uncomplicated, but I'm not sure I would have been up to doing a trip to the zoo at 9 or 10 days post op. That seems like a lot very quickly. A lunch or dinner out, absolutely, but probably not an extended outdoor outing like the zoo.
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Thank you, Audrella and MartyJ, for your feedback. If I can manage an outside walk or two or streetcar ride, that will be good.....will wait and see how things go. I have to be ready for flying home on day 10 so will listen to my new body
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I know I wasn't up to much after my stage 1, but as others have states it's different for each person.
I've been recovering, but have ran into a snag :-( it looks like I'm going to have to do injections to break up keloid scar tissue on my backside. He moved my scars up a few centimeters but skin is so right around my waist that he couldn't wrap the scar like he's done with others :-( I swear my body hates me!! Has anyone have to do this? I've heard it's pretty painful. Any advice or stories would be greatly appreciated.
Hugs to you all!!
Barb hope your healing well!!!0 -
Hi All,
I'm heading to NOLA on Labor Day for BMX and DIEP I on the 4th and was hoping someone might be able to answer a few questions for me. Where did you stay and would you recommend it? Has anyone stayed at the Hope Lodge? Also, did anyone drive home? I know it is somewhat individual but did anyone feel well enough after 10 days to handle a two day drive? I'm afraid of the flight and driving sounds so much better. Would love your opinions. Thanks.
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mtpeteacher... I had my MX and GAP flap in July 2011 and then DIEP in August 2011... After the first surgery, I would not have wanted to walk around the zoo, even in a wheelchair... But after the DIEP, I may have been... Riding the streetcar, and walking around the Quarter where you can stop and sit, and going out to meals should all be doable though.
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MAPBB, I added your Sept 4 surgery to the list above.
MTPETeacher, I did a lot of sight seeing after my surgery, and sometimes I over-did it. They do like you to walk. I did a lot of walking. You need to be careful not to overdo though.
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