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Topic: Meeting with Dr. Becker next Friday

Forum: Lymphedema — Risks, tips for prevention, and info about products that can address the symptoms of lymphedema.

Posted on: Jun 22, 2012 03:05PM

HappyTrisha wrote:

I will be meeting with Dr. Becker and Dr. Julie Vasile next Friday in NYC.  Will be having a specialized MRI the same day.  According to Dr. Vasile (very impressive resume) there are only two places in the world that have the required MRI machine - Paris and NY.  The MRI is necessary to identify the best places from which to remove lymph nodes.  I think I got that right.  In any event, according to Dr. Vasile whose group does the node transplant surgeries with Dr. Becker right by their side, Dr. Becker has been performing this surgery for the past 20 years and has not had one case of referrant lymphedema.  I trust that track record plus think that 20 years is a good period of time in which to evaluate outcomes!  Smile

This all happened kind of quickly and as a result of my on-line research.  I wanted someone close to home and found Dr. Vasile (offices in Ct. and NYC) performs the surgery.  I emailed her on a lark and she called and we spoke for almost an hour.  Well what were the chances that Dr. Becker would be here with her in the US two weeks later. 

If I end up being a good candidate for the surgery I would likely have it done the next time Dr. Becker came to operate with Dr. Vasile.  I believe that Dr. Vasile said Dr. Becker comes and assists with the surgeries every 3 to 4 months.

Will let you know how it goes.

I am the prototypical lazy LE patient.  I don't wrap and I don't use my sleeve.  I want the magic bullet for everything.  So I'm willing to check out the newest stuff all the time.  I had cold laser treatment and that really worked well. My swelling is definitely on the mild side - when it happens - but if I can get it down to no swelling, well bully for me!

Cool

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Jun 22, 2012 10:49PM Tina337 wrote:

Very cool, Trisha. Dr. Marga Massey trained with Dr. Becker the last few times she visited the U.S. There is a pic of this method of node detection/imaging in the link below. Very exciting stuff! Good luck with your meeting with Drs. Vasile and Becker!

http://www.nilymph.com/ongoing-clinical-research-our-centers-excellence-care-lymphedema

"Life isn't about finding yourself, life is about creating yourself." ~ George Bernard Shaw Dx 11/13/2007, DCIS, <1cm, Stage 0, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Jun 22, 2012 11:50PM HappyTrisha wrote:

Tina, thanks!  I'm pretty excited about it, though I'm not excited about the MRI as I am highly claustrophobic...Frown

I looked at Dr. Massey first because I had heard so much about her, but I just don't care to have to travel that far from my home (RI), especially for surgery that is really optional, if you know what I mean.  I think it was kismet that I ended up finding Dr. Vasile.  She doesn't have as much experience with the surgery as Dr. Massey does, but when she told me that Dr. Becker is actually there when her group performs the surgery, I felt extremely secure!

 (Another thing, unless I misread, is that it appears that Dr. Massey will only take on cases of extreme lymphedema.  I asked Dr. Vasile if my LE being mild would preclude me from being a candidate, and she said "no".  So I was happy about that too!)

I'll let you know what happens.  And yes, it sure is very exciting stuff!  Again, I'm always looking for that magic bullet.  This sure seems close!

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Jun 23, 2012 12:13AM HappyTrisha wrote:

Again, though, this is just Step 1.  If we get to Step 2, that will be the biggest hurdle - getting insurance to pay for it.  I'm not counting on anything since I think this would come under the category of "experimental" and I don't have a severe case.  But as my mother always used to say, where there is life, there is hope.  Wink
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Jun 23, 2012 03:31AM Tina337 wrote:

Trisha, I wasn't trying to steer you toward Dr. Massey. Just thought the photo of the node imaging on that site was cool. Sounds like you have a good plan, and I certainly hope it works out for you. By the way, I believe you are correct in understanding that at this point Dr. Massey is only taking on extreme cases of LE for this kind of surgery. Will you be part of Dr. Vasile's clinical trial? Also, would Dr. Becker or another surgeon be performing the surgery in tandem with Dr. Vasile? One surgeon works on preparing the axillary area (removing scar tissue) that will receive the node, while another surgeon is removing node from inguinal nodes on opposite side of body. Fascinating process, for sure!

"Life isn't about finding yourself, life is about creating yourself." ~ George Bernard Shaw Dx 11/13/2007, DCIS, <1cm, Stage 0, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Jun 23, 2012 04:21AM cookiegal wrote:

wow....please keep us updated!

You deserve a cookie!
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Jun 23, 2012 09:01AM HappyTrisha wrote:

Oh Tina, I didn't think you were trying to steer me toward Dr. Massey!  I thought the image was very cool!!!  I was just explaining to you the reasons I didn't go to Dr. Massey and how the other thing seemed to work out - at least so far. I will definitely be part of Dr. Vasile's clinical trial it if all works out.  My understanding is that Dr. Becker assists with the surgery while the others are performing it.  I'll find out the exact details when I go on Friday.

Cookiegal, will do!  I'm always happy to play the role of guinea pig if I think there's a chance that the potential benefits are worth it.  Hey someone's gotta do it, right?

Laughing

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Jun 24, 2012 02:13AM cookiegal wrote:

Happy Trish, that is just how I felt with the injections and the "dum dum..trailblazer thread", I had the opportunity and the means and if I didn't try I would regret it.

You deserve a cookie!
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Jun 24, 2012 02:26AM HappyTrisha wrote:

Cookiegal, been out of the loop.  Will have to read the thread!

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Jun 24, 2012 02:56AM HappyTrisha wrote:

Read the whole thread!  Good for you cookiegal.  I'm happy things seemed to have at least done you some good.  I know that with experimental treatments or things that aren't considered totally mainstream, there is always the chance of things going south.

I think what really gave me heart in terms of the nodal transplant surgery was hearing Dr. Vasile say that Dr. Becker has been doing this for over 20 years and has not had one patient end up with LE elsewhere as a result of nodes being removed from a different area.  I know that's been a concern in terms of people who worry about long-term effects of any treatment.

The fact that Dr. Becker will be participating in the surgery also gives me great comfort. 

Hey if you don't have people willing to participate in experimental treatments, you never find out whether or not you're onto some new gold standard!  I don't mind being a trailblazer.  (And really, 20 years to me with the person who started the whole shebang isn't really trailblazing, right?) 

Anyway, one step at a time.  I'm so happy that you and Tina are interested in the outcome.  I'll let you know what I know as soon as I know it!  Have a great weekend.

 Smile

     

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Jun 25, 2012 06:01PM Nordy wrote:

HappyTrisha - I wish I was joining you in meeting Dr. Becker - I have seriously thought about flying to France! Since I used to live in NY that would be much easier! And I really look forward to hearing what she has to say. And yes, my lymphedema was not severe enough to qualify for surgery with Dr. M - so she is definitely taking on more severe cases right now. That may change in the future... I hope, because as I stand here typing, my upper back is aching with fluid that I know needs to be moved. Time to do self mld utilizing the door way! Keep us posted. I am very excited for you.

Do or do not. There is no try. (Yoda!) 2 large positive nodes before neoadjuvant chemo - all nodes negative after chemo Dx 4/21/2005, IDC, 3cm, Stage IIB, Grade 3, 0/12 nodes, ER-/PR-, HER2-
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Jun 26, 2012 08:37AM HappyTrisha wrote:

Nordy where are you living now? Are you far from the City?  Are you in the US?  I know Dr. Becker will probably be back sometime in September and I know Dr. Vasile would welcome having you see both of them!  

I'm happy to help you out in any way that I can!  Because she's been doing the surgeries so long I think Dr. Becker has a great track record of success.  I bet she can help you out!  In fact, if you write to Dr. Vasile via her website and let her know what is happening, she will get in touch with you and maybe get things rolling!

 But I will definitely keep you posted.  I keep dreaming of the day when lymphedema will be cured.  I'm thinking that this nodal transplant is certainly a huge step in the right direction.  Of course I'm thinking it could be the cure.

Fingers crossed!

Smile 

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Jun 26, 2012 09:27AM Binney4 wrote:

Just want to pop in here for the sake of newbies reading this thread, and note that Dr. Becker has indeed been performing this operation for around 20 years. But because she has not followed her patients over that time, she in fact has no way of ascertaining whether any of them have developed "referrant lymphedema" (lymphedema in the lower extremities, abdomen or genitals as a result of removing nodes from the groin).

She did publish a small and short-term study early on with a few selected patients, but the validity of that study is naturally in question for all those reasons (and others): small, short-term, selected participants. Just as my own breast surgeon still insists none of his patients has ever developed LE from his breast surgery (?!), so any surgeon can make claims of total patient safety and surgical efficacy as long as they don't look at their actual patients.

Just a thought.Smile

Bottom line is, we're fortunate to have Trisha posting her experience here so we can all follow her process and outcome. That (along with solid research) is an amazing way to learn what we can expect from new treatment ideas.

Be well!
Binney

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Jun 26, 2012 01:27PM HappyTrisha wrote:

Well the good news is that there are no strings on my tongue.  I am going to have the opportunity to question Dr. Becker closely and I definitely intend to ask her what kind of follow-up she has had on her 20-years worth of patients and why her studies have been so limited.  I'm hoping that she has good answers, such as she has done a lot of follow-up but hasn't bothered publishing the results on all of them.   In any event, Dr. Vasile is the one who told me that Dr. Becker has not had one patient come down with referrant lymphedema so I will ask her too whether she is talking about the ones in the study or whether she has information from Dr. Becker beyond that.

I know that part of the reason that Dr. Becker insists on the specialized MRI (and if there are only two machines in the world, one in NY and one in Paris, it would seem to me that Dr. Massey's patients aren't getting that same kind of MRI?)  is so that she can see where the lymph nodes are most plentiful and then she harvests from that area. 

Things that interested me from last year's article in the Times:

Dr. Becker claims to have had enormous success, but while she has operated prolifically in Europe and other parts of the world on patients with cancer as well as those with congenital lymphedema, she has published only sporadically.       

In a 2006 paper in Annals of Surgery, she reported that 90 percent of patients improved after surgery and almost half were cured, but the sample included only 24 women and there was no control group.

I definitely intend to find out whether Dr. Becker has information and follow up on more than 24 patients.

And then there's this:

As some surgeons crowded into an operating room at New York Eye and Ear Infirmary and others watched a live video broadcast, Dr. Corinne Becker, the French doctor who pioneered the procedure, harvested lymph nodes from a patient's groin to transplant to her underarm, where nodes had been removed earlier during cancer treatment.       

"Voila!" she exclaimed, motioning to her colleagues as she rubbed a small piece of tissue between thumb and fingertips to check for the presence of the small, pearl-shaped lymph nodes. "Look what is here - a wonderful node."       

She warned that extracting too much tissue could injure the patient, even causing lymphedema in another limb. Using the French word for ‘greedy,' she said, "It's better not to be ‘gourmand' - aggressive."

If I end up going through with this, I am going to feel totally secure with having Dr. Becker oversee the process and insure that nobody is being gourmand!

Laughing

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Jul 1, 2012 01:20AM HappyTrisha wrote:

MY DAY IN NEW YORK CITY, MEETING WITH DR. BECKER  (this may be very boring) Laughing 

Well I had my appointment with Dr. Becker and absolutely love her!  I asked her about her patients and her research and was entirely satisfied.  (It's pretty much what I thought it would be.) She has followed all of her patients but also explained to me that when someone is back to normal for years and years they just stop coming to appointments.   She has not had one patient who has had problems in another area, and the reason she has not published more research is that she said that research takes time away from surgery, and she would rather be doing surgery than writing.  I had no trouble whatsoever understanding that.  I think she and I are kindred spirits in that way.  When I told her that I was a nightmare patient in terms of doing all the suggested things to help my LE, she didn't seem to have any difficult understanding that either.  She believes in getting to the root of a problem and fixing it.  Everything else is temporary and has to be continually repeated.  I think that's why she is so excited about the lymph node transfer.  It's a permanent fix.

She is extremely insistent upon everything being set up perfectly for success.  That's why they insist on the specialized MRI.  She explained to me that if there are not enough lymph nodes in a certain area, you don't go near that area.  She also said that if there are a lot of lymph nodes but someone cuts too deep, you risk creating a problem in that area.  So I guess there's a lot that goes into deciding the perfect spot from which to take the lymph nodes and the exact amount of cutting that needs to be done.  I asked about the surgery itself and the recovery and both are pretty painless.  But because it's microsurgery and every vessel needs to be connected perfectly, they need to take their time with it.  So it is probably more time-consuming for that reason.

I can tell you that I went down there with a lot of hesitation because frankly I am surgeried out at this point, and the thought of having to go through that whole drill, and be far enough away from home, doesn't really intrigue me.  Add to it that my LE is entirely do-able.  After meeting Dr. Becker though, I am totally sold.  When I was waiting for my appointment, there was a woman in the waiting room and I started chatting with her.  She was there from Ohio with her daughter, and her daughter was in with Drs. Becker and Vasile.  The daughter's LE was in both legs, and they have no idea how she got it.  I didn't have time to ask her a lot of questions, and I'm not sure I would have asked more anyway because it's not really my business.  But when the daughter came into the waiting room I couldn't believe my eyes.  Both of her legs were totally blown up.  I wish I had gotten her name because she is having surgery on Tuesday.  I would have liked to keep in touch to see what her progress was. 

I also got to meet with an anesthesiologist because being under horrifies me.  I've had some bad experiences in the past.  After talking to this doctor, I felt totally relieved.  Everything I brought up as a problem, she had a remedy for.  She took copious notes and assured me that they would take care of all of the things that had been problems for me in the past.  

The final part of my journey didn't go as well.  They were running behind at the MRI place and to tell you the truth, that was going to be my least favorite part of the trip.  I am extremely claustrophobic and the MRI is 2 hours.  And it is a closed MRI.  The end of the trip had to be precision, pretty much, as  I had scheduled myself for the last train home.  When they said they were running behind, I got nervous because I didn't think I'd be able to make my train.  So I left without having it done.  (Relief on some level, ha ha.)  But I realize that it is a very important part of the whole thing so I know it's going to need to be done at some point.

Dr. Becker is not back in the states (after this) until September, so that gives me time.  If September doesn't work for me, I could always push the surgery out until the time after September.  So I definitely have options.

If anyone lives close enough to NYC to even go in for a consult at some point, and you are interested in checking it out, I would tell you to get in touch with Dr. Vasile and try to set something up for the next time Dr. Becker is here.  The worst thing that could happen is you decide it's not for you.  But you just might feel it is worth a shot.

I think I am going to call her office and see if they will give me the name of the person from Ohio or at least give her my name.  I am going to be very interested to see her result.  I know that she will only be able to tell me about short-term, of course, but even that will fascinate me because she definitely had a very very bad case of LE.

Hope I didn't bore you too much!  I will keep you updated on whatever comes next.  If you have any questions, ask away; or if you want to PM me at any point, feel free to do that too.

Smile

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Jul 1, 2012 01:10PM carol57 wrote:

Trisha, very interesting and I will look forward to hearing more as you proceed.  One thing that makes me wonder though, is how I and many others managed to get LE with minimal nodes removed. The axilla is a bodacious cluster of nodes, and I lost only 5, yet I got LE.  Many women here report getting LE after losing only one node.  So it's very hard for me to believe that Dr. Becker's track record is as good as she portrays. Harvesting nodes from an area that's full of them might help lower referrant LE risk, but my and others' experience certainly confirms that the loss of a seemingly trivial portion of a region's nodes can still lead to LE.  For that reason, it sure seems to me that the ethics of Dr. Becker's profession should compel her to make every effort for proper follow-up of her patients.  

Like everyone else, I would dream of a sugical cure, and maybe node transfer brings that cure. But without well designed studies, it's not possible to know if the surgery's 'cure' rate is as promoted, not its risks as minimal as described.  In my view, we really want Dr. Becker, Dr. Vasile, and Dr. Massey to be the gifted micro surgeons that they are, and to apply their craft to our horrid LE problems.  But why not do it in a way that will validate the procedure and broaden the pathway for other surgeons to eventually bring it to those who would benefit? 

Carol 

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Jul 1, 2012 02:46PM Katiejane wrote:

Trisha,   I sure don't want to be the one to put a damper on Dr's Becker and Vasille but I have a friend who traveled to NYC and had a lymphnode transfer preformed by them this early spring.  She has primary lymphedema in one of her legs-the MRI found that her body is lacking many nodes that the normal system has.  I would have thought that a node mapping would have been preformed before moving forward w/ surgery but it was not.  The nodes that were harvested for the transfer were taken from the upper arm ON THE SAME SIDE as her leg LE!!! From a medical stand point I would think they should have used another harvest site and on the other side of her body.  Now she is starting to develop LE in her arm.  So now she does have atleast 1 patient who has developed LE in another area where there was none pre-op.  Please keep us posted on what you decide.

Dx 6/13/2007 Dx 6/13/2007, ILC, Stage IIA, Grade 3, 3/28 nodes, ER+/PR+, HER2-
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Jul 1, 2012 10:20PM HappyTrisha wrote:

Carol,  your question is legitimate.  Certainly following patients and publishing their successes would do exactly what you said.  That Dr. Becker has chosen not to take that path has to take away from the benefit that could have been recognized long before now.  That said, it's not Dr. Becker's way, unfortunately.  For me it does not invalidate all the work she has done, nor do I think she is a liar when she says she has followed her patients and continues to follow them, except for those who do not go back because there are no problems to report.  I have to say I understand it because I would be one of those patients.  Maybe that's why I have no difficulty in understanding her choice not to take the time to publish.  Having said that, would it serve the greater good had she decided to give research the same import as her surgeries?  Unequivocally.

************

Katiejane, now THAT interests me.  Would you friend be willing to be in touch with me?  Maybe you could PM me her email address, if she says it's okay?  I don't know that I agree that the harvesting would have to be on the other side of the body since I don't believe that the lymph nodes are interconnected that way.  For example, an ear infection can cause the lymph nodes in the neck to swell, but that same ear infection will not cause other lymph nodes on the same side of the body to swell.  However, the fact that she has developed LE where there was none previously does concern me.  It also concerns me that Dr. Vasile told me that she has not had any patients develop referrrant LE.  A stupid question perhaps, but are Drs. Vasile and Becker aware that your friend is starting to develop LE in her arm? 

You can believe that I will be questioning Dr. Vasile about it.  If they are aware of this, I will be concerned on two levels: one, that it happened at all; and two, that I was misled when I asked the question originally. And it would definitely make me rethink my decision.

I would appreciate any further information that you can give me.  Thanks Katiejane.

(By the way, I thought that that the MRI and node mapping were the same thing.  I guess I haven't been asking the right questions!) 

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Jul 2, 2012 12:42AM toomuch wrote:

Trisha - The nodes for transfer should be harvested from the contralateral side of the body. When I do MLD for my left UE LE, I drain move fluid to the left inguinal and right axillary region. It wouldn't make sense to compromise these areas. I've been reading everything I can on LN transfer because I would love to fix my LE. But because at this point it's mild and reversible with compression, LE exercises and MLD and inspite of the fact that I hate how much time all of that takes, I'm afraid to pursue a surgical cure. My fear is having LE in 2 limps. I'll be following this thead with great interest and should you decide to move forward with it,I wish you the best!

"Every trial endured and weathered in the right spirit makes a soul nobler and stronger than it was before" Dx 7/13/2010, ILC, <1cm, Stage IIA, Grade 2, 2/12 nodes, ER+/PR+, HER2-
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Jul 2, 2012 02:12AM Tina337 wrote:

Exactly what Toomuch said. Dr. Massey says she does it from contralateral side for exactly the reason Toomuch explains re self care of LE with MLD. If by some chance a new secondary LE was created from surgery, the patient would still be able to use nodes on same side of body for drainage exercises.

It should be pointed out that Dr. Massey is indeed keeping records of her patients for the long haul. No doubt she does plan to publish once she has enough data.

Carol, remember the discussion about BS's being "rooters" when they do SNB and AND? I know Dr. Massey fears creating a new secondary LE and talked about the extreme care they use when harvesting a node for transfer. With that said, even she acknowledged the risk of creating a new secondary LE, which is exactly why she is following her patients long term. We all want this to be the answer, and there should be long term followup of patients, and eventually published data that demonstrates whether the surgery is worth the risk.
"Life isn't about finding yourself, life is about creating yourself." ~ George Bernard Shaw Dx 11/13/2007, DCIS, <1cm, Stage 0, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Jul 2, 2012 02:30AM HappyTrisha wrote:

toomuch, mine is mild and reversible also.  In fact, mine goes away without compression if I wait long enough. 

It's funny (well not funny) but when Dr. Becker was talking about what nodes to use - they consider me a "difficult case" because I've had lots of gynecological surgery and therefore they don't know how much node interruption I've had; hence the MRI help - she did say they could also easily take it from my neck.  And when she felt my neck, she felt on the same side as my LE!  So I don't know whether she has any qualms about using the same side. 

This may sound strange, but when I told my best friend about not being able to have the MRI, she immediately asked me if I thought it was some kind of sign.  I know what she meant because sometimes I will consider things a "sign" - if you know what I mean.  But I told her I didn't think of it as any kind of sign, especially since I was so taken with Dr. Becker and really comfortable with the anesthesiologist.  But then I read Katiejane's comment about her friend who had Drs. Vasile and Becker and that really threw me!

I am definitely not as enthused as I was on Friday.  If I had the kind of LE that poor female had in her legs, I would probably try anything.  But again, mine is mild and definitely doable.  Is something from above telling me not to do it?  I'm not sure.  I do want to hear more from Katiejane and from her friend.  And I will definitely query Dr. Vasile about it.  (Katijane did say her friend is lacking a lot of lymph nodes that the normal system has.  I wonder how much - if at all - that played into her new LE?)

I told my friend that some day it may be perfected in the US to the point that it is routine and maybe some doctor closer to home will decide to become an expert in it.  I certainly have time to let this become more perfected!

Obviously I am in a quandry at this point.  No idea what I am going to do, though I am leaning more toward caution right now than I am toward heroics!  Will keep you posted.  Thanks for the information, toomuch. 

Undecided

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Jul 2, 2012 02:33AM HappyTrisha wrote:

The real kick in the butt is that Dr. Becker didn't want to spend the time on research.  20 years and 4000 surgeries (or whatever she said) is certainly a lot of information waiting to be published.

Frown 

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Jul 4, 2012 04:07AM HappyTrisha wrote:

I've decided to wait to talk to Katiejane's friend until I make any further decisions. 

I know this is going to sound crazy, but after having a few days to think about it, I am once again inclined to forge ahead. 

So I'll keep you all updated as things change.  

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Jul 4, 2012 02:17PM PinkHeart wrote:

HappyTrisha~

Thanks for starting this interesting thread.  I am also hoping for some help.  My LE also comes and goes and is in my right chest wall & under axilla where 19 lymph nodes removed (only 2 positive).  My PCP had never heard of lymphedema in the chest wall.  It seems there is no way of "measuring" LE in the chest wall. 

I had a very painful radiated implant on the right side/LE side.  I sometimes wondered if I really had LE, or if it was just swelling from the implant.  Well, last month the implant decided to exit my damaged radiated breast and was extruding so it was surgically removed, and I was sewn up sans an implant.  I still get the on and off swelling, so it's obviously not the implant . . .

I also have severe axillary cording that could not be resolved after 50+ PT sessions.  It hinders the LE PT to be able to fully perform the MLD because it is a huge chunk dividing my axilla and gets in the way of moving fluid.  Also can't move it across chest where implant used to be because of collapsed breast with big chunks of scar tissue and floppy skin in the way.

That's interesting that you mentioned the lymph nodes being harvested from the neck, as I just heard that from a doctor for the first time yesterday. 

So if I go through with free flap reconstruction, I suppose I will still have swelling in that breast.  But at least I am rid of the painful implant!

BTW#1, do you know if a patient is having some sort of two stage free flap reconstruction AND axilla recon w/ lymph node transfer, which is performed first, or are both done at first surgery?

BTW#2, do you know of anyone who has had this lymph node transplant covered by insurance?  Anthem BCBS???

BTW#3, I had a "revision" surgery a few months ago that was NOT successful as I ended up with implant extrusion AND . . . the evil axillary cording that the surgeon tried to excise, caused new onset of axillary cording and became much worse in armpit and also had 5 cords that could be easily seen running all the way to my wrist.  Though the 5 wrist cords were very thin, they were certainly painful and my arm bent at elbow.  The PT got rid of the 5 separate cords easily, but the big mean one is still in my arm pit (the one that I thought was excised in surgery) and it now has an evil twin running parallel to it though not as big.  So I'm definitely paranoid about the "axilla reconstruction" part of this lymph node transfer surgery. 

I have been telling my PT about this procedure, and she is hoping to go to Dr. M's next talk in Chicago.

Good luck with your decision, and please keep us posted. 

7-6-2011=BMX+ALND+ImmRecon w/direct implants,IDC=Multi-focal(2)+DCIS=2, 28 rads+5 boost,post mx pain,chest wall LE,severe axilla cording excised at revision surg. 4/27/12=failed . 6-1-12: surgery-remove implant from split incision/implant extrusion Dx 6/3/2011, IDC, 2cm, Stage II, Grade 1, 2/19 nodes, ER+/PR+, HER2-
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Jul 4, 2012 02:49PM HappyTrisha wrote:

PinkHeart - it's my understanding that the node transplant is done in concert with the free flap reconstruction, which is a great way to have it done, IMO.

Interestingly enough, my insurance has approved the procedure. (United Health).  With all of the patients that Dr. M. has done, I would bbe highly surprised if the majority of these were not covered by insurance.  I think the cost would have to be prohibitive without it.

Are you anywhere near close enough to either Dr. Vasile or Dr. M where you could go for an evaluation?  If not, I know that Dr. Massey is willing to do an on-line consult.  If I remember correctly, they send you some lengthy on-line forms that they want you to fill out.  I think they also want pictures if you can send them.  It might not hurt to have some kind of consult.  I happened on Dr. Vasile when I was researching the node transplant surgery.  There was an email form right on her site and so I wrote to her.  She emailed back and asked to set up a time where she could call me.  And she did.  We spoke on the phone for nearly an hour.  I'm sure she would do the same for you.  She asked me all kinds of questions and by the end of the conversation said that she thoought I was a good candidate for the surgery.  I asked her a bunch of questions also.

I think it would be a good start, PinkHeart!  And you could ask any questions you have and provide thorough information about your situation.  I hope you consider doing it.

I am going to wait to have a conversation with Katiejane's friend, and I will talk to Dr. Vasile again after that.  Based on what I find out, I will make my decision.  Again, I am now going in the direction of having it done.

I'll be interested in your thoughts on doing an on-line consult with Dr. M. or having a phone conversation  with Dr. Vasile!

I will definitely keep you posted on what's going on with me.

Smile

I'M DOWN WITH CHEMO!
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Jul 5, 2012 04:38PM - edited Jul 5, 2012 04:42PM by cookiegal

so interesting.....

and yea for united health care, I miss them! 

I want them back.

You deserve a cookie!
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Jul 6, 2012 12:06AM - edited Jul 11, 2012 11:36PM by foreverhopeful

Hello,
I had a lymph node transfer done by Dr. Sullivan and Dr. Trahan in New Orleans  with reconstruction. I went with the intention that they would take from my stomach.They took the nodes on the right side of my neck and put them in the left axilla. Dr. Trahan used to do surgeries in that area of the body before becoming a plastic surgeon. He said if I was a family member that is what he would have me do. He said even though no one had reported it, it did not mean the risk wasn't there for leg lymphedema if they took it from the groin. He also said he didn't feel the risk was small. I wasn't expecting to have surgery in the neck, but now the scar is barely noticable and a good trade for the risk reduction. I don't think that they are even doing the surgery in a different area other than the neck anymore. I had a mild case mostly in my hand, but wore a glove and sleeve. Now I wear something at night, but am mostly free during the day. I still have lymphedema, but it is sooooo much better- the fluid seems softer.  I think scar tissue from radiation is what developed my lymphedema and removing it helped. He said that if you remove scar tissue then you need something in its place or it could grow back. They also said it could be 2 years until results are seen.

Dx 7/21/2010, DCIS, 2cm, Stage IV, Grade 3, 1/12 nodes, mets, ER+/PR+, HER2+
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Jul 6, 2012 12:07AM foreverhopeful wrote:

I also want to add that I don't think my long term follow up is being tracked.

Dx 7/21/2010, DCIS, 2cm, Stage IV, Grade 3, 1/12 nodes, mets, ER+/PR+, HER2+
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Jul 6, 2012 01:57AM HappyTrisha wrote:

Foreverhope, thank you so much for that information!  How long is the scar?  They said it would be very small.   Yeah, I've never heard of neck lymphedema either, but of course that doesn't mean it couldn't happen.  But I do like the thought of zero percent risk!

When you do it without reconstruction, this is supposedly an in and out procedure!  Because I yammered so much about anesthesia, the doctor said she would want me to stay overnight in the hospital.  She also said there are drains involved but supposedly they come out the next day.

I would guess that most doctors don't think about long-term follow up because the patient would likely be in contact if there is a problem, and otherwise, they just go on with their business.

The great part about this surgery is that doctors who do it are doing as part of the reconstruction.  That's what they call progress, right?  When I had reconstruction, I doubt they were doing it yet.  And it is so specialized at this point that not so many doctors are doing it anyway.

I'm so happy you posted!  Where exactly is the scar, if you have a way of describing its location?

So that gets back to the "problem" with Dr. Becker. 

I do like the idea of the neck though. 

I'M DOWN WITH CHEMO!
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Jul 9, 2012 11:29PM kharimata wrote:

Hai everybody here, 

I also posted in other topics, but just for you here: I am 28 and diagnosed with primary lymphedema in both legs ten years ago. Since I fell with my bike (stupid) almost one year ago, that right leg is not under control. I do 3 time MLD, and go swimming at least 3 times a week, were compressing things at night and class III socks at day. But still I haven't seen my ankle since I fell, and now even with all this effort I have two different legs. 

That is why I am considering this LNT. The thing is, on my left foot I have some water during the summer. But it looks like there is nothing bad going on. Testing, however, shows that I have no lymph vessels in both legs (or they are too tiny, not working, or no good quality). So it is just a ticking time bomb ... When I fall again, have an insect bite my body will send antibodies and water to that site and... it wont be able to go up anymore.

That is why I am concerned having this LNT, because they say there will grow new lymph vessels... but obviously some people have a less developped lymph system then others (that is how some people after breast cancer with only one lymph node removes do get LE). 

Sooo to get to the end of my story... 

@ Happy Trisha: i would suggest, probably you have heard of it, that you check 'Lymfactin' on the internet and check lymphedema and university of pittburgh. They have investigated many people with primary LE, and came to the conclusion that at least seven !!! genes are responsible for this disease. Now they are testing one growth factor on people. They say that this growth factor combined with LNT gives 80 procent more vessels, then 20 procent with only LNT.

This first study on humans will be finished on end 2014. When your LE isn't that bad (reversible) I would really suggest to wait some years! I wish I had more time , mine isn't reversible and keeps getting worse. And ... the worser it gets... the less the surgery will make it reversible.

Because maybe in some years (it looks really promising!) there will be a big chance that with this growth factor there will be a cure for at least secondary LE.... And keep fingers crossed that finally it will benefit primary LE, however this will take more time... and then I will be old by then!

Sorry for this long post, and sorry for my English! 

I just think, like doctors say, that LE (primary and secondary) are not only what we can see by the eye (water and swelling in a limb) , by a scan (lymphescintography and MRI for lymph node mapping)... It is , my opinion, particularly, what WE CAN'T SEE: genes... that are responsible for lymph nodes growing with vessels in the beginning, and other genes responsible for repairing of the system after trauma (cancer,...). 

That is why I believe the future of the cure is in genetic research...

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Jul 10, 2012 05:13AM - edited Jul 10, 2012 05:14AM by Kate33

HappyTrisha- Thanks for sharing all this information.  Like you, I have mild LE with very little swelling (and am not the most compliant patient) but I do have lots of pain.  I'm already dealing with a chronic pain condition (fibro) so relieving LE pain would be huge.  Dr. Vasile is the first doctor I've heard of who will do the node transfer on mild LE without it being in conjunction with some kind of flap surgery.  

I will definitely mark this thread on my favorites and hope you'll keep us posted on what you decide and your progress.  I also have UHC so it's great to hear they are covering the procedure even with mild LE.  Just curious- I've read that even after node transfer they still recommend MLD and compression garments.  Did Dr. Vasile address any of that with you?

Kate33 "Yes, they're fake. (@)(@) The real ones tried to kill me." Dx 12/27/2009, DCIS, 4cm, Stage 0, Grade 3, 0/4 nodes

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