Had a physio appt a few days ago and she told me that she has on her books now a patient who has just come back from Paris following a lymph node transplant operation for her arm lymphoedema.
Apparently her arm has already started to go down, but the place from which the nodes were taken, which I understand is the groin area, is a bit swollen. Hopefully this is just post-op swelling, as it is early days yet.
Interestingly, this lady has never had cancer. She developed lymphoedema in her arm after cosmetic surgery on her breast. According to my physio, they think the implant damaged her lymphatic system; the swelling started about 2 years after the surgery. (Makes you realise how lucky are those who lose their nodes and still never get the big L!)
As you can all imagine, I was extremely excited to hear about this and I have asked my physio if she can find out if this lady would be prepared to talk to me, or even just pass on a bit more information. It would be wonderful to speak to someone with first-hand experience of this surgery!
I hope to find out more next week…watch this space.
Thats great news and it would be great if you could talk to the lady.
It is very interesting that she has (only)had cosmetic breast surgery and no nodes removed.
Dot
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This is very interesting… hope you don’t mind me butting in here…
Have you seen the thread on this topic (from Sept. ’08 ) on an American website?
Still don’t understand the rules about posting links, but it’s the Komen site, if I can say that, and you might have to use the U.S. spelling( lymphedema) if you want to try & Google it, lymph node transplant in the title…the thread mentions a French surgeon….
Anyway, here’s hoping that it is all a real breakthrough…all the best, & good luck with your investigations!
I know there are a lot of people with misgivings about the surgery and I imagine there is, as always with lymphoedema, an element of the unkbown about it, as everyone’s lymphatic system is different. And I know there are people for whom it hasn’t worked, or even made things worse inasmuch as it gave them lymphoedema in the place from which the nodes are taken.
So…yeah, not a miracle cure. I’m hoping that a few years down the line will have seen some refinements in the technique, with maybe a clearer picture emerging of the optimum number of nodes that can be moved, etc, to effect an improvement in the arm, but not compromise the donor site. That must be quite a balancing act.
I actually met Dr Becker a few years ago, but couldn’t go ahead with the surgery then for financial reasons. Tho’, with hindsight, perhaps I should have said s*d it, taken out a loan and gone for it!
If I come up with anything new, I’ll let you all know.
The lady near me who had the lymph node transplant is still recovering, but it looks as tho’ she will be happy to talk to me, or at least pass on information, in the near future.
I can already confirm tho’, that she was operated on by Dr Corinne Becker.
Yes, it is interesting isn’t it? I’m so keen to meet this lady and trying very hard to be patient; it will be organised through my physio’.
What you may find even more interesting is that in Norway a recon plus lymph node tranpslant is now being carried out. It is a TRAM and at the same time lymph nodes are transplanted from the abdomen to the axilla as well. I think the ultimate goal must be lymphoedema prevention as well as, trying to cure an existing lymphoedema.
I don’t know if you belong to bc pals, but on their lymphoedema board there is a thread called ‘HOPE. Lymph vessels transplants in Norway’, which you might well find very interesting. I have actually got some info’ about this, which I am currently trying to get translated into English - bear with me.
BTW, I had a TRAM recon in 1996 and shortly afterwards developed lymphoedema in that arm. Considering that I had never had rads to that side, I feel there is a good chance that the surgery disturbed the axilla just once too often and it just couldn’t take it.
Of course, it’s impossible to say for sure, and there are lots of other variables to take into account as well, I imagine, and hindsight’s a wonderful thing. Always 20/20.
aaarrrgghhh, totally stuck for which option to go for in terms of recon as dont want to make arm worse and LD option would be messing about under the auxilla xxx
What a dilemma you have! A TRAM involves disturbing the axilla, too. In fact, any surgery in that area is going to be riskier with the lymphatic system already compromised and lymphoedema present.
BTW, I have now received a translation of the Norwegian article, (not as soft copy, I’m afraid, so I’m going to have to type it up and then post it on here).
I think, in your position, I would be inclined to wait, if you can bear to, and do some research to see if any new techniques are going to be introduced in the UK. Hopefully there are some UK-based surgeons following the work being carried out in Norway (and other countries) with a view to doing it themselves. You’d like to think so, wouldn’t you?