Supermicrosurgery for Lymphoedema

[Miniegg]

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.

[Rattles]

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.

[Rattles]

Hi all,

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.

Rattles

[Ann_W]

I have lymphodema in my breast not my arm Or at least thats what the onc said after 3mths of me complaining about the hard skin and swollen breast at first he said it was just an infection, for which he gave me a large course of penicillen.  I didnt have any lymph nodes removed just a WLE & SNB in March. and 15 sess of radiotherapy in May. The onc has referred me to Alnwick Hospice which deals with lymphodema my first session is Friday so I will keep you updated

[jaxmackenzie]

Hi Elinda..............I went to my GP. They have to refer you as I think the treatment would come out of their budget....other people have what I consider to be unnecessary cosmetic surgery on the NHS so I don't see why a bona fide condition like Lymphoedema should not be covered.

[elinda45]

Oh how disappointing but I'm amazed to hear that NICE are considering this given the current restrictions on lymphoedema care generally.  Given that they won't fund bandaging the fact they are considering funding a surgical option is staggering!

I'd like to get my name on that database - who did you have contact with in Oxford and who should I approach?  Or do you think I should go to my GP?  Is that what you did?

thanks, Elinda xx

[jaxmackenzie]

Hi..........I got my referral letter through from Oxford to make an appointment, When I called to make it I was told  they are waiting for clearance from NICE to fund NHS treatment. Until they get a decision to fund/not fund they are just building up a database of people interested in having the surgery. So , for now, the only way to have it is to pay £10k plus to go private!! They are hoping for a decision in Jan 2014.

[Miniegg]

Hi I was wondering if you have a update re your appt in Oxford

[jaxmackenzie]

Hi Rattles..............I went to see my GP last month, she was very supportive  of any treatment that would impriove my condition.::  

I  got my  referral letter this week to ring and make an appointment.  I will report back once I've been to see the team in Oxford.

x

[elinda45]

Hi Rattles

Totally get what you're saying about the sleeve with glove as that is what I wear too.  I don't actually have any lymphoedema in my hand but when I wore just a sleeve it began to create a problem in my hand.  If it is was just a sleeve I'd be much happier because it's so difficult keeping the hand part clean all the time and it makes it all much more obvious.

Thanks for telling me what you did and you've given me hope that it is possible to get the swelling down.  I have to admit that I've been feeling very despondent about this ever happening.  It's very hard to me to get bandaging etc as there's nowhere locally so it means very long journeys to find someone which adds to the cost but also makes the whole thing a bit of an ordeal. 

My nurse is always telling me to lose weight.  I do need to but that makes me feeling really angry.  She's only trying to help but I've put on a lot of weight since I went on to AIs and now I'm back on tamoxifen I'm going to try.  I love cooking - it's been the thing that's kept me sane - and although I eat healthily most of the time I'm always feeling that I deserve treats!  Isn't it enough that we get lymphoedema without having to cut out our treats too?

[Rattles]

Hello Elinda,

Well, I had 3 weeks of MLD in the Autumn and during this time was shown how to bandage and tape myself. I was also taught some SLD and I basically carried on myself with all this and daily physio.  I think its a bit of trial and error about what works.  I was despondent about progress but I lost alot of volume in the limb over a long period of time . More recently I use a piece of foam which the nurse cut to shape, this has really helped the hardened tissue on the hand. And I use a massage ball a bit like a fidget-toy, i.e. at regular points in the day. I have been seen every 3 months for follow- up since January and each time the measurements go down, slowly, slowly. 0.2 cms, 0.1 cms etc etc

Last, but maybe not least I lost some weight and the nurse thinks this is what had made the difference. I have to say if I had read this last point myself I would have been very cross as I did not consider myself over-weight ever, but just going back to work and everything and I have lost about half a stone.

Basically I feel the swelling has gone down and everyone thinks this should make me happy. The reason it doesn't is that I still have to wear a glove which starts at my fingers and finished under my arm pit. The thing I really hate is having no feeling in my fingers.

Hope this helps, Rattles

[elinda45]

Hi all

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:

http://www.dailymail.co.uk/health/article-2305937/Lymphoedema-Tiny-bypass-relieves-misery-swollen-li...

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?

Elinda x

[Guest user]

Hi Rattles

Thank you for sharing your experience re your appointment about the microsurgery. I have to admit that I also feel slightly disappointed that the results aren't more promising. Personally I would really like to be able to do without compression garments, except perhaps for exercising or anything strenuous. But it sounds like this method is not guaranteed to offer that. I think you are right to press ahead with the imaging and see what they say. Do you know if there is any risk that the surgery could make the swelling worse? And is this a treatment that is offered privately if you are not being treated by the Royal Marsden? I would be prepared to pay for surgery, although I would be hesitant if it was very expensive and might not even lead to an improvement.

[Rattles]

Hello Jaxmackenzie,

Thanks for your advice. I am going to see GP next week so will mention this and stiff hands. I wanted though to feedback my vist to see plastic surgeon re micro-surgery. It was mixed, and although they were lovely as with everything on my journey (hate that term) not straight-forward. I do understand now though why the surgery is not so widely available and it seems to me that this intervention is just the beginning of something that may bear fruit in coming years. Basically, of the small number of patients to have surgery, a small number have achieved 100 per cent reduction in limb volume, a small number 0 per cent. In between, most people experience some improvement but still need to use other methods to manage. So, it is a risk/benefit balance. The ground-breaking discovery is that they can now assess lymph function by using iodine to image the lymphatic circulation so as to determine whether there is a chance that the patient may benefit from surgery or not.

I felt very emotional after the appointment as I realised I had got my hopes up for something that may not deliver. They may not see me as suitable as my swelling has reduced (due to very hard work, I might add)and is stable. Also, do I really want to put myself through the trauma of surgery that seems to offer a potentially small gain in that I may still need to wear my compression garments.

We lfet it that I would have the next step - the imaging of the lymphatics and then make a decision.

I am happy to answer questions if anyone wants to know more. On a seperate note does anyone suffer neuropathy and if so do you find the lpymphodema worsens it?

Rattles x

[jaxmackenzie]

Hi Rattles..........I agree with you that lymphoedema is a side effect that does not get much press but which affects lots of us. I have investigated this Supermicrosurgery, I was hoping it might be covered under the medical insurance I am fortunate to have through work. However, because it has not been passed by NICE, it is considered to be a trial treatment therefore they would not fund it. I then asked my oncologist about it and they told me I had to speak to my GP. I sent my GP copies of the info I had and am waiting for a response, but I do not hold out much hope to for a referal for NHS treatment. In my area MLD treatment is available but not on the NHS so I  would have to pay between £50-£70 a session. I am hoping to having MLD  later this year, but the therapist will not do it without a letter from my oncologist, the oncologist refuses to do a letter until I finish my Herceptin, as I have had a  blood clot , and MLD could cause another one!!! So at the moment I have to rely on compression glove/sleeve to keep the lymphoedema under some sort of control.

ps. re the joint pain, my GP has prescribed anti-inflammotories and they have eased the pain so maybe worth a try.

[Rattles]

Miniegg- congratulations on your pregnancy - that is very exciting and I hope you are feeling well and the pregnancy is not aggrevating lymphoedema.

Elinda, I think you took the words right our of my brain- what I wanted to say but was too tired too articulate and which I do see as fairness ie the lymphoedema is a side effect of treatment and there should be support to treat the effects of treatment- I personally feel that we get a bot forgotten about once all the 'treatment' is finished, and while I am grateful to be alive, my body is just not what it was, and yet I am expected to pick up my life where I lfet off work, be a mum, partner, sister etc and things like lymphodema and neuropathy, joint pain (and now bad eye-sight!!!) are brushed aside and I am with you totally ! In fact, I think that the whole reason that lymphodema services are patchy is that MLD/bandading etc is costly and I would think that surgery probably is more cost-effectve.

I also feel that we ly,phodema ladies are overlooked by the usually wonderful BCC- come on you could do more to support us, or help us support each other!

Sorry for rant. Rattles x

[Miniegg]

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!

[elinda45]

Hope this works - trying to get used to new forum!

Rattles - it is partly about fairness.  It shouldn't be down to a postcode lottery as to whether you get bandaging or MLD or are put forward to surgery.  If there is clinical need you should get treatment no matter where you live.  Some areas don't even have any form of lymphoedema service - that can't be right. 

But more than that, if there is a cure for lymphoedema then it should be made available on the NHS with more surgeons trained up in the technique.  This is a life long chronic condition which can have complications like lymphoedema and have a major impact on people's lives.  I don't understand why the NHS would provide the funding for me to have a double reconstruction which is a cosmetic procedure in effect but won't fund me to have surgery for lymphoedema which causes me pain, discomfort and impacts on my day to day life and activities as well as affecting my self esteem.  It all seems very arbitrary.  I'm not saying that a reconstruction isn't really important for some women - it's not an either/or - but hopefully you see what I mean.

Hopefully with every success with the microsurgery, it will build a stronger case for the provision of surgery.

Please let us know how your assessment goes and whether you decide to go for it.  Completely understand your reluctance for further surgery though - it does reach a point where you can't face any more.  I think I'd need to be very clear on the risks and what the success rate is. But the potential for a cure does sound amazing!

Elinda xx 

[Rattles]

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??

[zibzab]

Thank you!
I just sent an e-mail to my doctor. Will see what he will answer.

[elinda45]

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.

Elinda x

[nan2high]

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.

[Morwenna]

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?

Fascinating stuff though! Thanks for posting.

[Phyllida61]

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

[jmeg]

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

[Guest user]

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

[Phyllida61]

Hi Everyone

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 😎 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:
http://www.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.

Phyllida