lymph node transfer surgery...anyone had it?

Liz, I bumped up some older threads on Lymph Node Transfer that you might find helpful.  It is an area of great interest but still very experimental and no study data available yet on long term effects or who is best candidate for this type of surgery.  

Linda 

I have had the lymph node transfer in New Orleans in May 09 and I have experienced a significant reduction in the amount of fluid in my forearm and a reduction (smaller than forearm) in my hand.  On a good day, my hand just looks slightly swollen and my arm looks completely normal. On a bad day, my hand is more swollen but my arm still looks completely normal. I just got back from a trip where I kayaked for several hours with just a hand compression garment on and had no adverse fluid build up.  I flew home the next day and completely forgot to wear any compression garment. I was shocked that I had no change in my hand or arm!  I am very happy with the results of my surgery and especially the doctor who did the surgery. 

ntresler

Would love to hear more about this.

And can you also pm me?

Thanks

X

S

Meggy, yes, they harvest lymph nodes in that area. There's some very recent research in the UK (Stanton) that seems to indicate that those of us who develop lymphedema following bc surgery have a general inadequacy in our lymph systems -- they're already operating very near capacity when the trauma of surgery takes place, and that tips the balance. Others have more leeway in the capacity of their lymph system, so perhaps they're more likely to remain free of this condition. More research is necessary to substantiate this correlation, and there's currently no easy way to determine which is which before treatment, either. But there is a real basis for concern about developing lymphedema in legs or genitals with further trauma to the lymph system. I understand Dr. Massey in NOLA is conducting a study of her node transplant surgery, but I don't know whether it covers this possibility or whether it's only concerned with the outcome in terms of the affected arm. I also haven't heard how long the study will look at patients, and lymphedema can develop months or years out.

So...more research would be especially helpful for this question, but at the moment we don't have any real answers.

Be well!
Binney

I'm thinking about doing this options with a scar revision.  From the little I know they only take a couple of lymp nodes.  We have many many lymph nodes through out our bodies. It sons doable.  NJ

  Well girls, have any more of you decided to do this lymph node transfer??? Or those of you that have already done it, how is the recovery going? Has it really made a difference for you and have you experienced any additional swelling due to the harvesting of the nodes.

Thanks,  Katiejane

oh... Nowords... Dr. Sullivan was my primary surgeon... He is wonderful! Good luck to you!

I had lymph node transfer in March 2010.  I was wondering if you still wrap every night and do you wear a sleeve every day.  I wish I could find a group of ladies on this site that had it done to find out what little or unique things they do to keep the drainage going.  I also would like to know if they are one of the lucky ones that no longer have to bother with garments except during exercise.

I had Dr. sullivan and I was left with the impression that I would not have to wear a sleeve or wrap.  After the 5 week protocal of LMD I went without wearing anything for 5 months.  Then I think I must have gotten an infection but felt well.  My Onc noticed my elbow was larger than the other.  I didn't really notice it but my right bicept had been hurting and I started to wrap before my Onc said anything.  I still can't get it back to previous size above the elbow.  And I do have fat and cording above the arm pit.

I'm glad I did it but my expectations were very high.  I had heard from one of Dr. Massey 's patients that you still have to wrap and use shoulder strap sleeve.  I also heard that about the 2 year period.

That's why I would like to hear from others.