Lymph Node Transfer

[MsJasp]

Hi there! I am new to this site and looking for some advice. Since having a mastectomy and node clearance for BC almost five years ago, I developed lymphedema of the arm which has gradually got worse (almost 70% increase ) I have been fortunate to be listed on the NHS for a lymph node transfer followed by liposuction as I am not a suitable candidate for LVA. Anyone experienced a node transfer and what have the results been? Also, I struggle with compression garments as they seem to make the swelling worse, lymphedema nurse thinks it may because of the great variation in size between wrist and top of arm so even custom fit garments don't work!

Thank you

[buddlia12]

I'd suggest you get as much expert advice as possible before definitely opting for this surgery. Check out the technique that the surgeon will use and their success rate. It's important to remember that lymph node transfer means that nodes (sometimes 2-4) are taken from another group (eg: groin) which means that this donor site will now have a depleted drainage system. Sometimes this can lead to lymphoedema at or near the donor site. Secondly if only 2-4 nodes are transplanted and you had more than this number removed, then you will still have a depleted lymph node capacity. ( eg 2-4 can only do the work of 2-4 lymph nodes). Thirdly, sometimes lymphoedema is also the consequence of radiotherapy damage, scar tissue, loss of axillary fat which supports the axillary vein as well as lymph node removal... and often the result of ALL these. Fourthly the evidence of lasting, long term effects after LNT is not yet available. Be informed.

[MsJasp in reply to buddlia12]

Thanks for the reply. The donor site will be my neck, I have asked the question about the possibility of lymphedema at the donor site. But thanks for the advise re: number of nodes, I will definitely be asking this question as I know 30 were removed during the clearance operation. I am on a waiting list for surgery so I will keep gathering further questions for the surgeon so these can be addressed closer to the time. I am so desperate for something to work and help with this lymphedema swelling that I really am at a point where I feel I will give anything a go!

[buddlia12 in reply to MsJasp]

I can understand that. The key is to be as informed as possible before comitting to the surgery and also to consider how you might feel if you developed some swelling in the donor area and how you would feel if after wards if it didn't reduce your upper limb swelling. Have you considered LVA surgery? This is super micro surgery where lymph channels are connected to small veins in the affected area to create a bypass route to improve lymph drainage. the Oxford Lymphoedema Practice (olp.surgery) offer this treatment on patients assessed as being suitable . Good luck.

[MsJasp in reply to buddlia12]

Unfortunately I was not a suitable candidate for LVA following the ICG scan

I will also be having liposuction to the arm as the swelling has changed to fatty tissue that will not drain even if the transfer is successful, but cannot have liposuction until after the transfer (I imagine due to cost as it is NHS!)

I have thought about if it doesn't work, and I feel that it cannot really get any worse as I have such a large volume excess already, and in relation to the possibility of the donor site being affected it is as we know the unknown, and if I opt to not go ahead I think I will always question myself so feel pretty confident that it is a risk I need to take. Thanks for the helpful advice, much appreciated.

[CCT67 in reply to MsJasp]

It’s important to realise you may end up with no change, or possibly even worse off with swelling in two locations if the harvesting site ends up with LE down the road. .

One of my lymphie friends whose neck was the harvest site for her node transfer 8 years ago and she has not had any problems with LE developing in her neck. However she knows her neck is forever vulnerable to developing LE. The transfer did not make a notable difference to her LE limb in the years post surgery. She then had SAPL earlier this year and is extremely pleased with her limb reduction, her LE foot/whole leg was nearly the size of an elephant leg before SAPL. Her LE leg now looks almost as small as her petite non-LE leg. She has to wear compression garments 23/7 forever but she doesn’t mind as her leg is no longer enormous.

You might find the best results you achieve from surgery is limb reduction from your debunking op.

I know two other lymphies who’ve have had LNT (4 and 5 years ago), one feels it helped her limb while the other feels it had no positive impact whatsoever. It’s a mixed bag in terms of outcomes.

It’s so easy and normal to feel desperate for a cure (or the closest thing to one) by going down the surgical route. LNT may, or may not, be the panacea you’re hoping for, time will tell. If you’re willing to take the risk then good luck, hope you have a great outcome without any regrets. You’re lucky the NHS is funding the op, that’s rare!

[Lynora in reply to MsJasp]

Who said you can’t have liposuction without LNT? I have seen excessive BCRL successfully treated by liposuction alone.

[Hidden in reply to Lynora]

the best what you can do is go to Dr granzow actually he is offering the best mixed surgeries available