NOLA in September?
Comments
-
Dragonfly -- it is my understanding that lymph nodes will be removed from the groin area and place in the axillary area where the nodes were removed during my mastectomy. The scar tissue from the mastectomy will be removed and the blood vessels from the lymph node transfer will be connected just as in the reconstruction of the breast. Nerve damage is typically not an issue long term since there is a good blood flow to the area. About 85% of nerve damage is completely reversed within 2 years of the surgery. I guess, my thought process is that while I am somewhat apprehensive about doing it, at the same time I am almost afraid not to do it. The reconstruction itself along with the stage 2 lipo will put me at a high risk for making my lymphedema worse. So having the lymph node transfer is kind of an insurance policy. Does that make sense? I can argue myself back and forth with this. And I have. It just falls into the category of so many other decisions associated with breast cancer. You never can know for sure if you are making the right decision. But not making a decision is not an option. UGH!!
Please, anybody who has an opinion on this let me know. I know Dragonfly and I can't be the only ones with lymphedema. The Breast Center's website has information about it but I thought maybe someone else had spoken with the doctors there about it and may have information to contribute.
Dragonfly -- thanks for talking to me about it. Just being able to have dialog back and forth is helpful.
0 -
I'm with you Ann, I had thought about it some and wanted to talk to NOLA about it. I'd love to talk to my local PT about it, she specializes in lymphadema so maybe she knows about it. How many did you have removed? NOLA also has a great PT there for lymphadema, so she may have some insight. You said it so well, never knowing if you're making the right decision!!! Does insurance cover it? Another one of my many questions!!!
I hope someone can provide more info about it and help with the decision making process.
0 -
Dragonfly -- as far as I know my insurance will pay. I know initially they requested additional information from Dr S but once that was provided they were fine with it. Have you talked to anyone at the Center about it before?
0 -
No I haven't. I know someone told us about it when we were there, just briefly that they had a surgeon who does it. Then I read on there site about it, but that's all I know??
0 -
I'm trying to do some research online and see what I could find, here are a couple articles:
http://www.healthcentral.com/breast-cancer/c/476663/95156/transplant
http://news.cancerconnect.com/lymph-node-transplantation-may-improve-lymphedema/I'll tell you, after reading these, I'd still be on the fence about it. I hate to risk making it worse, although of course I'd like it to be better but... Man I just don't know Ann. I think I need some major testaments and facts first for me anyway. I can't wait to hear how it goes for you
I hope others chime in too! 0 -
Checking in ladies, met with Dr. Dellacroce and Dr Stolier today and loved them both! I feel really good about surgery. There is another lady here at the lodge that is seeing Dr D, so I came on to see if she was listed here. She has surgery tomorrow (Tuesday) so I don't guess she is. She was coming out of her pre-op appt when I went in.
0 -
You probably already know this, but Dr. Marga Massey has been performing the surgery. I believe that surgery is one of the reasons the NOLA docs asked her to join their practice (also because she's a kick-ass microsurgeon!).
Here's info on her website about it:
0 -
I am going to NOLA for a consult with Dr. Sullivan for reconstruction and to meet with Dr. Massey regarding my lymphedema at the end of the month. My lymphedema is mild right now but I'm worried that it will worsen after my mastectomy and radiation. I am anxious to learn more about the lymph node transfer procedure. I agree with the difficulty in making all of these decisions!
0 -
I had no lymphadema before, thanks to the mastectomy that's what brought mine on, 22 nodes were taken out. It's mild, I can tell my left arm looks larger, and heavier but it's tolerable. So how do you decide on the surgery? grr... I can't wait to hear what you think toomuch!!! I'm going for stage 2 November 18th with Dr Sullivan!
0 -
I think she only does the surgery on really severe cases, probably because of the risk of LE in the donor site.
0 -
That would make sense, as us with minor issues, it's probably not worth the risk!
0 -
Dragonfly, my LE was relaitively mild- I had 3 nodes removed BUT I had serious radiation damage that resulted in LE..... most people(who know what they are talkign about) will tell you it's not just the amount of nodes removed rather it is the interruption in lymph flow AND high dose radiation is believed by many to be a BIG offender in the interruption of flow as is surgery. OF COURSE Lymphology is NOT taught in medical school and is a very touchy subject amongst many surgeons. They really do NOT know much about it and many surgeons have difficulty dealing w/ subjects they don't KNOW about....or rather they have difficulty admitting they really do NOT know about them. At any rate, many of us have had LE issues to different degrees and would be happy to share. I know Nordy is VERY well versed on the topic. She was a PT asst. She had lymph node involvement and dissection and makes, has made MANY decisions based on all this LE stuff. LE is very under diagnosed, under-recognized and unfortunately under-prevented? Consult NLN, LANA websites. I'll defer to Nordy or others....things change quickly and I'm a year out so curious to know the latest!
0 -
Yes, that is correct there is no rhym or reason to LE, and I do know the amount of nodes don't matter. I'm in no hurry to make any decisions really, do I wish the LE would go away, hell yes! Do I want it to get any worse, no! I know I had major issues after my mastectomy,
0 -
Thank you Springtime. I'm really looking forward to my surgery and to meeting some of you. I hope to be able to join you at Zea on the 28th.
0 -
Polamom - Good luck tomorrow! You're having exactly the surgery I had in '06. It is my belief that those of us who've had "stacking" for one breast are among those with the most expensive breasts, per ounce, in the world! That makes us very special and the objects of envy by many...
And good luck to Mariposa and 2tzus on Thursday!
0 -
RE: Lymphedema - do you have LE therapists to talk to and to treat/balance your LE? There is a crew of very experienced women over on the Lymphedema Forum - worth stopping in and asking a few questions of them. I've learned so much there. I developed LE 2 weeks after my bmx Stage 1. At first it was difficult to know if it was post-surgical swelling or LE, so I waited a few weeks, then saw a LANA-certified therapist about it. What a difference lymphatic massage made! LE effects the entire quadrant, not just the arm, so thinking of messing with the lymph nodes in a different quadrant is really worth thinking through, for sure. Dr Massey is the most trained in this, doing extra studies in France. She and Sullivan do this procedure, but I think both would agree that it's in the earliest phases of developing it. My LE is considered mild. I asked Dr S about the transfer possibilities at Stage 2. He wasn't real crazy about it for me, since my swelling is not huge at this point and is being managed pretty well with massage. I am very tired of doing the 2x/day treatments and all the compression wear, but it does keep it manageable.
0 -
Jinger, Why did you not have a reduction/lift with stage 2? I am hoping to have everything done during stage 2 due to insurance changes coming in Jan which will only pay 10% of future work done out of network. I am currently paying COBRA to get this work finished but can not continue with COBRA forever......
Springtime, can you add me to the list for Stage 2 Nov 10th with Dr D?
Anyone with nipple sparing have any nipple work done at stage 2? Both of my nipples survived fine, but one is completely flat. Would like to add projection to match the other side which looks perfect.
0 -
OK I am adding the following to the listing above. There were a lot of surgeries mentioned up there, if you are not added and want to be, let me know!
Adding to list above:
- Nov 10 - Ladybug50 - Stage 2, Dr. D., NOLA
- Nov 18 - Dragonfly1976 - Stage 2, Dr. S., NOLA
- Dec 10 - Jinger - stage 2B (reduction, lift, ???) with Dr. D at St. Charles?
Upcoming Surgeries- Oct 13 - Polamom - Unilateral Stacked DIEP Stage 1 Dr D, Hope Lodge
- Oct 14 - 2tzus - Revisions. NOLA.
- Oct 14 - Mariposa109 - BMX and DIEP, Fairway, Dr. T., Hope Lodge.
OH, I tried on the Merena compression garment. It is going to be fab, much superior to the DOM interms of fabric, so smooth and soft, but still mighty compression. Got it on eBay! Thanks to the ladies here who brought this to our attention!0 -
Spring when you are in NOLA show them your Merena outfit..please. I think they are looking for a better fitting and feeling outfit and maybe this could be something that you could steer them to. I am telling you the new one is horrid. It is made for a 6ft person.
0 -
Spring- I think I (and LizR) started the Marena buzz. I'm glad you like it! I've been wearing mine since I got home from Stage 2 (4 weeks ago). I paid full price, couldn't find my size on Marena's ebay store. But totally worth it! I also recommended it and showed it to Dr. Massey the last time I saw her. I wouldn't be surprised if it becomes the dom of choice in the future, in NOLA and Charleston.
0 -
Wow, I wonder how fast they move on it if they switched. Sounds like I'd love the marena more than the DOM, but I wonder if I should just order it ahead of time? Do I get it long enough on my legs incase they do any lipo there? I'm a little leary about buying it online especially for after stage 2. Right now I'm an 18/20 or I was before they removed a big portion of my stomach, so no clue on what one or what size to order. I want to be prepared and not get home and be miserable with the DOM outfit like JaimieH had!
Ladybug, I am so in the same boat as you! Laid off in August, so I've been having to pay the pricey COBRA premiums each month just to get the surgeries done. While the stage 2 is sooner by a month than I'd planned (which I'm a little nervous about) I am thrilled at not having COBRA costs after that. What about future jobs with benefits? Can they deny me because of pre-existing? Hmmmm
0 -
I asked Jeanine (Dr. D's nurse) again, if I needed to wear a Marena garment after the first 2 weeks, after my Stage 2 surgery (which was 2 1/2 weeks ago) - even sent her a link to the Marena outfit that you all are talking about - and she said NO. So, unless they change their minds in the next couple of months, or your doc (if different than Dr. D.) has a different opinion about long-term wear of a compression garment, I would suggest not buying it ahead of time. I stopped wearing the black, Dom girdle last friday, and I'm doing fine. I'm still sore, of course, mostly in my hips and low back/flanks area, but I just hated wearing any kind of a compression garment, so when they said I didn't have to, I took them at their word! ;-) I have no idea if it varies from person-to-person, though, in terms of how much lipo you have done. Maybe I didn't have that much done? How can you know? I'm still puffy, but not terribly and now fit into my regular jeans, etc. It's odd (and somewhat frustrating) how variable the advice is.
0 -
Melissa~ I wonder why she said no, Dr. S's patients are allowed to use spanx.
The Worst part about the new dom outfit is that the crotch hole (sorry for the lack of term.) is WAY, WAY too large. I went half the way down my thighs so I would have to tug on it all day to keep the hole in the right place and the compression on my inner thighs (I had lipo done there).
0 -
I honestly don't think it matters what kind of compression you wear, as long as you wear it. Comfortable garments just make them easier to wear.
Doctors do vary, not sure why that is. Dr. Massey's across the board recommendation is 3 months after stage 2.
0 -
It is interesting (frustrating) the huge difference in rules/advice, I guess maybe it just varies by each patient. What's done, their body, healing process etc... I just hate to spend money on the marena and not need it? But then again I don't want to have the DOM and be miserable, I'm shorter so I'm sure I'd have issues with the 'crotch' area too lol!! Oh decisions, decisions!!
0 -
I decided to get the Marina on eBay b/c it was $19.99 (rather than $108.00 on the Marena website) and it goes below the knees. I thought maybe I could get away with no Ted hose ( I hate those too!)
I know they would want me to wear a DOM or the new version (that seems even more loathed, if that is possible!) for 2 weeks after, at least, and I wanted to try something new - for 20 bucks, if this thing is better, it will be worth it! It seems FABULOUS. You all should feel the fabric. Smooth and soft. But still, if I don't feel I need it after 2 weeks, I will not be wearing it! I also have Spanx (that I cut the crotch out of - ha ha ha ha). Yes, I took scissors to a $60.00+ garment!
Anyway, thanks to Jeskatchi and Liz R for the info on Marina. I will take this with me and show everyone. I am going to ask if they are going to put me in something after surgery, if they can just put this thing on me. We shall see. I'll report back! ha!
Dragonfly - you are right, there are different rules between docs, and now, the rules within a doc are even different than they were before. Well, I guess change is good. No DOM after phase 1 is so much nicer ladies, really. There are many of us who suffered through that thing! Count your lucky stars.
0 -
Springtime, I can't wait to hear back from you on how the DOM vs Marena goes!!
0 -
Well that just goes to show how we really are all very different. The DOM outfit was miserable but primarily because it was too short waisted on me. The crotch opening hit perfectly but from the crotch up I think I could have used another 6-8 inches. So the straps were forever digging into my shoulders to the point of almost being unbearable. But if I took the straps down it would just slide down. I am 5'8" but my legs are only 27" long. I wear a size 18 so I am a big girl but all of my height is in the upper body. I have to buy petite pants and tall tops. I don't know that I could even buy a compression garment that fit, although I am trying to find one. If anyone comes across one that may work please send me the link.
0 -
Spring, will you put me down for Stage 2 on December 9th at St Charles with Dr S. Thanks.
0 -
Minnesota~ Thank you! I am getting more nervous as the day approaches..
Polamom~ I got to hope lodge this afternoon. I wish I would have had the opportunity to check in earlier in the week, I would have loved to have met up with you. Since our surgeries are only a day apart I am sure we will be seeing each other! I will be leaving hope lodge on the 22nd. Good luck with your surgery tomorrow. You will be in my prayers
Mari
0
