I rarely post but have found this forum invaluable during the course of my recent treatment. I was diagnosed in February 2012 with Grade III, HER2+++, PR and ER 8/8 and had neo adjuvant chemotherapy (x 8) followed by WLE, ANC and radiotherapy + Herceptin and now on Tamoxifen.
The risk of lymphoedema has caused me more anxiety than anything else and it took me months to come to terms with this. I am therefore always interested in new developments in treatment for those who suffer and came across the following this morning: ouh.nhs.uk/services/departments/lymphoedema/default.aspx
It gladens the heart to know that pioneering new surgery is taking place and I hope that this might be of interest to someone.
I have lymphedema and its been a real pain. Sleeves are uncomfortable and pressure pump does not work so well. Wrapping works but so hard to do yourself 1 Does anyone answering this please let me know your possitive remarks on how to deal with this. Clothes are hard to buy etc. Thanks, Rainbows
Thanks Phyllida Iam suffering from lymhoedema waiting to see someone on the 15th about it. It was one of my main concerns because I have my own small embroidery business and its now affecting it so hopfully can get some positive results,will mention this and see if any progress is being made think we are suffering enough without this affecting the rest of our lives
Jill
Dear Jill
I am surprised that my original post attracted so little interest!
I hope your appointment yesterday went well; I would be very interested to hear what your lymphodema specialist had to say about supermicrosurgery.
I hope you are not suffering too much.
Phyllida
I’ve only just noticed this thread, and I always check “latest posts”, but not always the new ones that hadn’t had replies. Not sure how I missed it, but I think this is really exciting, as up til now the literature always reads “no cure” for lymphedema!
The only thing I wonder is what the criteria will be, and how accessible it might be, being very specialized surgery. I can’t think it is going to be widely available any time soon, … if ever?
How wonderful that there will be hope of successful treatment. It may not be rolled out fast enough to benefit me but there is now HOPE. The absolute worst thing about my diagnosis was that it could be treated but not cured! I was so depressed at that point and found so little information which was positive and so few professionals who were concerned about the plight of patients facing a lifetime of pain & awkwardness. This is not to decry the therapists who have helped me, thank God for for them, but concern about those people like me who have been damaged by cancer treatment.
I think this is a very exciting development and follow up studies of this type of surgery carried out in Italy are showing very positive results - even 10 years down the line!
The main issue is that of funding. I think most people who get this will be paying for it privately. If you think about it, terrible as lymphoedema is for those of us suffering from it, getting four compression sleeves a year on the NHS is dirt cheap - about £200 per year. I believe the surgery is about £10,000 per arm and that doesn’t include pre and post surgery follow up so it would take 50 years of conventional treatment to match the cost! Mmm, how likely is it the NHS will fund it?
The main issue is that no-one speaks up for those actually diagnosed with lymphoedema not even, I’m very sad to say, Breast Cancer Care. Everything is always about reducing the risk of developing it.
We need someone or some high profile organisation to start campaigning to let the world know about lymphoedema and how it effects our lives. Very few health professionals even understand lymphoedema so even with GPs commissioning services it’s unlikely to be the top of anyone’s agenda.
Apologies for the rant. But, yes, it does give us hope and I’m hoping that one day I’ll be able to afford to get it done.
Hello Ladies,
I have not been able to post for a while but wanted to share my experience of this issue. Some very valid points already raised. As I understand it the surgery is only carried out at the Royal Marsden Hospital, as it is a new technique. I don’t know if anyone is a member of the LSN but there was an article in it by the surgeon and he outlines some of the challenges of the procedure and the reasons why - as yet- it is being carried out on a small scale and only to patients being treated by the Marsden Hospital. As I am being treated at the Marsden, I have an appointment to see the Consultant at the end of September to see whether I might be suitable- again, as I understand it, not everyone’s lymphoema is, something to do with the damage to the lymphatic vessels and whether they can channel to the veinous system- forgive me I am not a Scientist.
I think behind your point Elinda is the issue of fairness. And I will be very aware that if I am deemed a suitable candidate and can pluck up the courage to have the operation (I have had 5 in the last 14 months!), I will be very lucky.
If people are interested, I am happy to update on developments and hope that in time it ca become more accessible as a treatment.
In the meantime, I saw the LSN have a day which sounds just the thing in that there is a session on SLD, compression pumps to try and manufacturers present. Unfortunately it is in Birmingham and I don’t think I can attend. But if the LSN run an event like this, then hopefully BCC could too??
Hi everyone I had a consultation at Oxford hospital a couple of months ago. It all seemed really positive and the dr was reassuring everything he said about the lymphatics made perfect sense to me! I plan to go ahead with the surgery next year (I am currently 19 weeks pregnant so no ops for me untill baby’s here) I’m 29 so a lifetime of this pain and discomfort does not even bare thinking about! I’m going to apply for funding but if not possible I will fund myself somehow!
Rattles - I did wonder why my lymphoedema nurse specialist seemed less sure that this was a good option - this could be why. That does feel rather disappointing as I think we were all hoping it would be the magic bullet.
What my nurse said is that any surgery in that area increases the risk of worsening lymphoedema. I suppose the main risk would be from potential infection.It would be interesting to know more about potential risks. As you say, it’s a big weigh up whether to undergo yet more surgery if it could still mean having to wear a compression sleeve etc afterwards.
Lacuna - the cost is around £10,000 which will be for the operation but you’d need to consider follow up and potential extra costs. This is an article from the Daily Mail about it:
Rattles - can I ask when you say hard work what you’ve done to get your arm down? I’m doing a 40 mile round trip each week to get MLD from a charity and I’ve had 5 sessions and think it’s helping a bit in terms of softening but not sure what to do next. I do SLD every day without fail. Did you have bandaging and/or kinesio taping?
I just came on to give an update - I go for my lymphodema imaging tomorrow afternoon. I have been waiting months and a cancellation came which I was offered. I am not sure if they will give any feedback. I will be interested to better understand the damage done to the lymph system (if possible), even if I am not eligible for the surgery itself.
As I understand it, the reason the surgery is not approved is not due to funding, but is because there is a lack of evidence base on whether it actually leads to improvement, and this is a necessary justification before putting someone through the risk of surgery that may not lead to change. I hope that in years to come, there will be developments that make this kind of intervention ‘routine’ for those of us affected by lymphodema. I think what is shocking is how poor and patchy the support still is.
I came back to give an update so anyone looking at this thread gets a sense of the kind of issues that arise around micrsurgery.
I went for the imaging - it was a long afteroon, waiting for the iodine injection to be taken up by the lymphatic vessels. It was quite clear from the imaging that there was extensive damage to the lymphatic system, and in fact all we could find was one tiny thread weaving its way slowly down the back of my arm. Sadly, this meant I was not a suitable candidate for surgery - there needs to be enough undamaged vessels to be able to do repair work.
I was actually really upset by the outcome and I had not realised that I had actually been really hopeful. Seeing the damage to my arm was also not something that I found easy. And then I went through that whole process of coming to terms with having to wear compression garments for ever again.
Having said all this, I am glad I was referred, and that I better understand what is going on with my body, including why the surgery is not a magic solution to our problems with lymphodema.
Does anyone have any updates on micro surgery? Anyone been for a consultation? I am booking in for the scan (has consultation last June but was pregnant at the time so could not gave the scan) I was wondering rattles did you have any side effects from blue dye at injection site or else where? Any further swelling? I understand they inject into effected arm.
My sister and I have both had breast cancer - i have been reasonably lucky with lymphoedema symptoms but she (who had her bc more recenlty) is havnig a terrible time. Someone has mentioned the lymph node transfer surgery - is that what the people on here have had? Where in the UK is it available? How do we find a bit more out about it? And how are those who have had it faring?
Had my surgery last thursday, 2 small wounds in my armpit & quite a bit of bruising, but already noticed improvment in arm - less swelling & less tingling! go back to see consultant in 6 weeks
I had my surgery on NHS at Oxford. I live in Yorkshire though, and it took a lot of research & phone calls for it to happen, even after my GP referred me