Meeting with Dr. Becker next Friday

kharimata

Hello Binney

Thank you for the information. When I return to Paris I will ask this off course. 

I have found also something from Dr. Chen but not the same doc that Happy Trisha posted... takes some time to read it but it is interesting... 

I thought science is science... but I guess it is not like 1+1= 2 

It is so strange to see howcome so many different things circulate about this topic. Total opposite investigations are put on the internet... what to believe. I definately hope to believe the positive outcome. In some years the people on this topic who did it , and that might be me soon also, will be able to testimony. 

Now maybe it is a jump in the dark. But to wait untill they are sure, that will make it too late for me I guess, sadly 

But in the mean time: keep posting all this stuff everybody!

kharimata

sorry forgot the link ... http://www.lymphnet.org/newsletter/articles.htm

kharimata

to see one positive effect of all this: reading this documents sure improve my english!

HappyTrisha

kharimata, I think we can believe it all!  But for me, it's like going to a top doctor versus going to someone just starting out.  I had reconstuction with someone who specialized in the kind of reconstruction I needed and came highly recommended.  Yet I have read of a lot of different outcomes for the same kind of surgery I had.  Not everyone who has had the same reconstruction has had a positive result.  Dr. Becker has been performing this sugery for 20 years and has done over 4000 of them.  It's obviously extremely delicate surgery.  When they were explaining the surgery to me, they made it clear that they will only go for the most superficial layer of nodes and that digging too deep can cause problems so they make sure not to do that.  Well someone not as schooled at it might go in too deep.  I'm just using an example here.  The more proficient a doctor is, typically the better the outcome.   The more of us who have this surgery, the more information will be come available.  So a lot remains anecdotal.  My only recommendation would be that anyone who chooses to go for it should go to the most experienced person they can find.

kharimata

That is true, 

but it is still a strange document for me. In the document (if my English is correct to understand it ) it says that the 26 persons underwent the LNT not at their hospital by their research team. 

Not many teams perform this surgery I guess in Paris, and by leaving it in the middle for who did the LNT it is just like saying 'the 26 who underwent LNT by Dr. Becker'. 

The hard thing as well is that there are, sadly, no documents or statistics or whatever of these 4000 LNT... but every surgeon is referring to this when it comes to the lymf node transfer...

And then suddenly there appears a study from '26 people who had LNT done in Paris'...

There is a strange blur to this. I can imagine it is not possible to put the name of the doctor who then did the LNT that failed online in the same document, but by leaving it open it is like pointing at Dr. Becker.

I know every Docter can fail but publishing this document at a moment that everywhere in the world surgeons are performing this surgery more and more is just a strange thing...

I can imagine that people, onces they got better after LNT, they are not motivated anymore to enroll in post-op testing and statistics. 

But , speaking for myself, I can say that if the surgery would worsen my LE or I would get it at the donor site, people would hear about it! So far I didn't read any case like this...

HappyTrisha

kharimata, I have to believe there are more surgeons out there than Dr. Becker who are doing ALNT in Paris!  And Dr. Becker does her own follow up on her patients so I can't imagine that the 26 in question are hers!  I too found it strange that they referred to patients who were not their own!

But I distinctly remember Dr. Becker saying that she never had a patient who was made worse by ALNT, so it doubly tells me these are not her patients. 

Anyway, the best I can tell you is that I feel totally comfortable going ahead with this - when I do - as long as Dr. Becker is involved.  We each have to make decisions for ourselves.  There is no one size fits all when it comes to new (well new for the US, 20 years in France - think about that for a few minutes!) procedures.

Be well my friend!

kharimata

The surgeon who did surgery on me told me that he had never had LE at donor site so far. 

The investigation is just very strange. When you do an investigation and put hard words like this you should involve the best surgeons in it. When I would perform the surgery, the complication rate would be high too

But then in the end to conclude : LNT is dangerous... is a little dangerous on it's own. I think lot off people will have doubts to have this surgery done when they read it 

But it is not all about the surgery like you said, it is who performs it that is very important too. 

Wish journals would be more critical before they put a vague document like this online...

In the end it is true we all have to make the decision for ourselfs, and this prooves that even 'studies' are so subjective

Del11

Not everyone is doing LNT the same way. If you're considering the surgery I would talk to multiple surgeons before deciding.

Side note: I know Dr. Massey has trained with Dr. Becker. I'm not aware of other surgeons who are doing LNT having done that at this point in time.

PinkHeart

My surgeon, Dr Kline and his practice partner Dr Craigie, Charleston, SC, both do LNT and trained with Dr Becker.



There is a surgeon in Los Angeles who trained with Dr Becker and doing this surgery. Dr granzow.



Dr sullivan in new orleans does this surgery and takes lymph nodes from neck to tranfer to axilla.



Johns Hopkins is working on getting an LNT program started there.



And of course several doctors in NYC. chen levine Vasille, etc



Im sure there are more out there in the US and other countries.



Please correct me if i have mistated or please add to the list if you would like.



I trust my surgeon even though Dr Becker was not in attendance during my surgery.

kharimata

Donor site lymphatic function after microvascular lymph node transfer.

Tiina P Viitanen, Maija T Mäki, Marko P Seppänen, Erkki A Suominen, Anne M Saaristo
Plast Reconstr Surg (2012), PMID 22878480

BACKGROUND:: Lymphedema remains a challenging clinical problem that often lacks curative treatment options. Recent reports have shown that microvascular lymph node transfer from the groin area into axillas of the lymphedema patients may improve lymphatic drainage, but the effect on donor site lymphatic flow has not been studied. These patients may be more prone to develop lymphedema on donor sites as well, and therefore, our aim was to evaluate the postoperative donor site lymphatic function. METHODS:: We performed a lymphatic groin flap transfers to axilla in 13 lymphedema patients. In 10 patients the lymph node transfer was done simultaneously with the lower abdominal breast reconstruction. Postoperative lymphatic vessel function of the donor site was evaluated by the lymphoscintigraphy and limb circumference measurements. For semiquantitative evaluation of lymphatic drainage, a numerical transport index (Ti) was used. RESULTS:: In 6/10 patients the postoperative lymphoscintigraphy revealed minor changes in lymphatic flow on the donor site limbs. Transport index was considered slightly abnormal in 2/10 patients. None of the 13 patients had changes in lower limb circumferences during the 8 - 56 months follow-up. CONCLUSION:: Lymph node transfer can be easily combined with the lower abdominal breast reconstruction and the popularity of this technique is rapidly increasing. Eventhough none of our patients had developed postoperative lymphedema symptoms, the results of the first lymphoscintigraphies show that it is important to reduce the surgical trauma to the lymphatic flap donor site. CLINICAL QUESTION/LEVEL OF EVIDENCE:: Risk; IV.

 

HappyTrisha

Pink - Maybe I've gone a little overboard in saying that Dr. Becker would have to be there for me to feel comfortable.  I guess what I realize is that my surgeon and the other NY surgeons are newer on the scene than are some of the other docs who trained with her.  The female surgeon who will only take extreme cases (forget her name) has been doing it a while now.  She also trained with Dr. Becker.  If she were in NY, I probably would have felt comfortable with her doing it without Dr. Becker in attendance.  My thing is that I had no desire to travel too far for the surgery and the NY doctors are closest to my home.  But because they haven't been doing it as long as some of the other docs, I definitely want Becker involved.

   

PinkHeart

Trisha,

No problem. You're so fortunate that you don't have to travel.



Thanks again for starting this post!

PinkHeart

Trisha,

Forgot to say in my post that you are also fortunate to have Dr Becker present.



Please tell her heartfelt thanks from me for devoting her career to helping LE patients and for excellent training of my surgeon.

HappyTrisha

Pink, you would absolutely love her.  What a wonderful human being - as well as a doctor.  When I asked her why she didn't publish, she looked sheepish and said she knew she should, but she didn't want to take time away from her patients.  Helping her patients is absolutely her first love.

And I will definitely tell her what you said, in fact I might print it out and bring it to her, because I can tell she is someone who would really appreciate it and take it to heart!

I'm so happy that we can all lock arms and fight this fight together.  Though I didn't choose it of course, I do love our sisterhood, especially the cameraderie and sharing part!

much love,

trisha

When I have the energy, I will post my journey, treatments-wise.  It's so nice to be able to look at it in the rear-view mirror!

carol57

I was able to read the full study about complications after node transfer surgery in France, and the authors do not identify the surgeon(s) in their report. The writers are at a hospital-based lymphedema center, and they explain that the patients in the study sought and received their surgeries independently. Here's what they say: 'It should be noted that our patients decided to undergo ALNT to threat their lymphoedema, with the hope of curing it and stopping compression therapy, without informing or consulting our medical team.' The research study's 26 patients represent all of their patients 'who underwent ALND and are followed up in our Department of Lymphology, but they represent only a small percentage of the 1500 patients who underwent this type of surgery.'

So, that explains why they studied 'other surgeons' patients; these folks do not do ALNT surgery.  They are a lymphedema diagnostic and treatment center and they decided to quantify and categorize complications they were seeing when their patients returned to the center for follow-up after their node transfers. 

HappyTrisha

Carol, thanks for the information!  Now that makes a lot more sense.

trisha

kharimata

That makes sense indeed. 

Is it then also possible that patiënts who got better and do not return cus they are better, are not included in the study? 

Or can we just conclude like Happy Trisha,... say that this means you should go for the best surgeon ?

There must be some explanation to this study, with this high risk rate there would not be any surgeon in the world doing this or promoting it. Or so many surgeons in the world saying that they never had a LE at donor site so far. The goal from surgeons is to help people, not giving them the problem extra for what they had the surgery far. 

It is like taking pills for cancer, with having 25% chance of getting cancer at another place -due to taking these pills. If that would be the experience, nobody would do this anymore or start introducing it in the world...

So I guess it must say a lot off the surgeons who did it, and not about the procedure. Certainly if you read the Finnish small study: there they conclude just the opposite...

'CONCLUSION:: Lymph node transfer can be easily combined with the lower abdominal breast reconstruction and the popularity of this technique is rapidly increasing. Eventhough none of our patients had developed postoperative lymphedema symptoms, the results of the first lymphoscintigraphies show that it is important to reduce the surgical trauma to the lymphatic flap donor site.'

carol57

Kharimata, without knowing who did the surgeries, it's difficult to say whether surgical experience influences these complication results. 

Coincidentally, this morning a friend sent me a copy of a study written quite recently by Dr. Becker herself. It is published by the French National Academy of Surgery, called 'Reconstruction of the breast combined with treatment of lymphoedema by microsurgical transplant' (November, 2012), and she reports on 168 cases where patients had LE and subsequently received an autologous flap reconstruction, and where they also transferred inguinal nodes to the axilla. 

The reported results demonstrate what she calls an LE cure in only 75% of the cases; the other 25% continue to require regular lymphatic drainage. There's mention of more widespread improvement in the frequency of infection, but meaningful swelling reduction seems to extend to only 75% of the cases in her study.

Dr. Becker notes that the most successful outcomes occur when the transplants are done for patients who have early-stage LE (which she characterizes as developing within a few months of their mastectomy/ALND). 

Two parts of the study report pose big questions for me: Dr. Becker does not discuss any side effects or complications at all, with no mention of including any surveillance of those side effects in her research; and she states that the patient follow-up took place at 6 months, 12 months, and 'at minimum' 3 years after transplant surgery.  That does not mean that there has been no longer-term follow-up, but I would have hoped to see some kind of analysis of the long-term results beyond 3 years, since some of the study subjects had their transplants as far back as 1991.

The results she describes include:

Three weeks post-op, the arm softens and loses some volume. Results showed a reduction of 2 cm (circumference) per month, on average, with volume normalization within 2 years for moderate edemas in 75% of cases. The other cases experienced improvements. (But she does not describe the extent of the improvements.)

Imaging studies show that after node transfer, for 50% of patients the transplanted nodes are visible, and new lymphatic vessels have formed and are visible. For 25% of patients, new lymphatic vessels are visible, but the transplanted nodes are not. In the remaining 25%, neither new vessels nor transplanted nodes are visible, which (in her words) 'suggests failure of the intervention, knowing however that lymphatic imaging can sometimes be difficult to interpret.'

Physical therapy with lymphatic drainage was stopped between 6 and 12 months post-op for 75% of cases, corresponding to the cases where imaging showed new lymphatic vessels.

(Disclaimer: The article is in French, and these excerpts are my own translation.)

For those of you who have the opportunity to see Dr. Becker, it would be a great service to the rest of us who are watching node transfer surgery results with great interest, if you could ask her if this and other studies that report on efficacy/LE reduction outcomes also had a complication surveillance component, and if so, where she might have published those results.

Carol

HappyTrisha

Carol, actually you can ask Dr. Becker yourself.  She has a website where she answers questions.  I'll see if I can find the link to it.

By the way, 75% to me is great.  (May not be to everybody.)  I think Dr. Becker is new at the results-writing stuff. 

My memory is that while some people got better, nobody got worse. 

HappyTrisha

Here is her site:  Also, in her question and answer section, she says 98% of her patients see improvement!

http://talkabouthealth.com/CorinneBeckerMD

carol57

Trisha, thank you for the link.  I did not realize she had a site where she answers questions!

Nordy

I have to agree! 75% is good! I went for reconstruction with tissue expanders initially because my PS had stated a 30% failure rate -- which to me, meant a 70% success rate, so I went for it! Unfortunately I fell in that 30%... So maybe I don't have much luck....

I continue to keep an eye on this, but I do worry that every year that goes by my chances of having a successful outcome are decreasing. I should make a decision one way or another, but I am apprehensive as well. I love sports where I use my legs and a lower extremity lymphedema would be my undoing... So I wait... But, who knows, maybe one day all of the pieces will just fall into place and I will be on here saying that I had it done... But that day is not today! In the meantime, ladies that have had it or are thinking about having it - please keep us posted! I am sending rvery ounce of positive energy our way!!!

PinkHeart

Carol, Thanks for the info, your knowledge, and doing a fantastic job of translating the French journal article.  I'd love to be able to go to Paris to meet Dr. Becker -- and take you along! 

I swear I'm not advertising for my breast reconstruction surgeon who did my LNT surgery last month, but Dr. Kline and Dr. Craigie have an Ask The Doctor section on their web site.  I picked out a couple of questions that came in regarding LNT, and have placed links below. 

This first link explains how several microsurgeons around the U.S. first gathered in 2005, and then collaborated with Dr. Corrine Becker to learn and improve techniques for LNT surgery to help patients suffering from LE. 

Note that this first article is dated almost 2 years ago. 

Also note that not all the U.S. surgeons are named in this ATD article.  I have a separate journal article that lists all of them and they are those you may recognize from NYC, Chicago, etc.  (Levine, Massey, etc.)

http://breastreconstructionnetwork.com/what-are-my-options-if-i-develop-lymphedema/

This second link is a recent question from a patient who had COMPLICATIONS from LNT surgery with an unnamed surgeon (NOT Dr. Kline or Craigie).

http://breastreconstructionnetwork.com/complications-from-vascularized-lymph-node-transfer/

This last link is a recent question from a patient about whether it is better to have the LNT as part of the DIEP breast reconstruction (lymph nodes sharing same flap), or doing it at next step of recon surgery where lymph nodes have their own flap.  My LNT surgery was done later with lymph nodes having their own flap.  I had SGAP and not DIEP anyway.

http://breastreconstructionnetwork.com/your-question-about-reconstruction-surgery-and-lymph-node-transfers-answered/

I think I may go check out Dr. Becker's Ask The Doc site, too.  Thanks very much for keeping up the communication on this topic.

HappyTrisha

Nordy, I always make the decision that I am going to fall into the winning percent!     And I've decided you're going to be there too, even if today isn't the day!  Mine has been a while too, so according to the stats maybe my chances aren't the best either.  But here's how I look at it.  If 98% of Dr. Becker's patients show some kind of improvement, I DEFINITELY will be in the 98%!  And some improvement is better than no improvement.  But again, I intend to be in the "total cure" group.  That of course will mean that I have to do exactly what the doctor says, and for whatever length of time the doctor says.    I admit that I am not the world's best patient when it comes to taking orders that move me out of my comfort zone!  I just hope I don't have to do the michelin man wrap on my arm.  But if I have to, heck, I will do it!

Great energy going back to you Nordy!  You know the saying, good waiters get good tips?  Well you're being a good waiter, so the tips will be there!

trisha

PinkHeart

Nordy~

Thanks for your positive energy - I truly feel it!

Praying that your right day will come soon.  Please keep sharing here as your positive outlook and knowledge adds even more to this great site.

Trisha, will your insurance pay for a day and night sleeve so you don't have to wrap?  I know there are some that can get both but still prefer to wrap.  I prefer both the sleeves, the wrapping itched me to no end!  I would wake up at 3 am with an itching fit, unravel it while half asleep, and my cats would have a heyday with wrappings.   

kriserts

Nordy, we've talked before, and I totally agree with you. I'm so eager to have this done, but as a cyclist, if I got lymphedema in my leg, it would be the end of me. It's bad enough having to wear a compression sleeve out on a 50 mile ride, I can't imagine having to wear leg compression, too. I'm keeping a close eye on the developments, though, and hope a successful proceedure arrives in time for all our benefit. They're testing a growth factor to add to the lymph node transplants, maybe that will help us all.

HappyTrisha

Pink - I actually have compression sleeves.  Did I mention that I'm lazy?   I think insurance will end up covering everything because once someone's had surgery, they pay 100% for whatever is needed after that.  YAY!!!  They would only pay 80% for the LE therapy (the times I decided to go) because unfortunately I had a break in service, so they no longer considered it part of necessary treatment for LE - something like that.  Now don't get me wrong.  80% is certainly not bad.  But if I have to go 5 days a week for 3 weeks, or whatever it is, after surgery, that really adds up.  So it's great to know it will be totally covered, along with whatever else I will need as part of it.

 

HappyTrisha

kriserts, could you tell me more about that growth factor thing?  I'd like to read about that.  It would be great if that proves to be helpful.  I'm not having the surgery until I lose the weight I want to so I'd like to know what's going on in the meantime that could be of help!

Thanks!

kharimata

Happy Trisha, I think I put a link here once to that growth factor. It is called Lymfactin , the company Laurantis and it is from Finland. When you google this, you find a lot. Also Dr. Stanley Rockson has mentioned it. 

At first I was very enthousiast about this. But when talking to somebody in the pharmaceutical sector I am less. They say that thet are in stage I/II. So that is totally in the beginning, it can take up to 8 years or something like that before they go through all the stages - it can take much longer with bad results, complications or funding problems. 

Also sceptici are worried what the growth factor might do with possible remaining cancer cells...

And in the end this growth factor is to be combined with a LNT, so that does not take away the risk on LE on donor site eather... it is just a way to improve the result on LNT. Maybe much later finally there will be a drug therapy with only the growth factor, but that will take more time I guess.

So unfortunately personnaly to wait for the growth factor is not ideal. Since my LE is allready worse, and like I experienced myself, a stupid fall from the bike worsened my LE like hell. So the ailment is progressive, in 8 years I will have the LE allready like 10 years bad, and for sure by then it is much much worse. 

Generally speaking on every document they say that the earlier you have LNT (or the less long you have the LE), the better the outcome is. It makes sense that when you have it allready for ten years, the result will not be the same. The skin is too much stretched, the skin fibrotic,.... 

HappyTrisha

kharimata, thanks!  Now I remember.  I agree with all of your thinking on that.    I definitely intend to have the surgery some time this year.  So that's that.