very happy to find this category

Public Archive
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Hello everyone,

My background is Grade 3 ER pos HER pos breast cancer diagnosed Sept 2004. I had a right mastectomy and full axillary clearance (one node affected).

I used to come on the BCC forum frequently after diagnosis and during treatment. Subsequently my focus has shifted from survival to the aftermath of the cancer and its treatments. My husband and I are desperate to have children and have looked into and tried various options. At the moment we are members of Surrogacy UK and are hoping that we will find find someone to help us.

However, at the same time I am trying to cope with my lymphoedema which is a huge emotional, practical and physical problem. I am delighted that there is now a dedicated lymphoedema forum and I have found all the posts interesting and helpful.

I have lymphoedema in my right arm, about 25 to 30% I think. I have had one course of bandaging and 2 courses of MLD but nothing seems to make much difference. Last year I had 3 episodes of cellulitis and then started daily prevention with penicillin. I seemed to be doing well until a few days ago when I got new truncal swelling and then yesterday redness of the skin and fever so I am back on high dose antibiotics again and am feeling very demoralised.

Bahons, I am very interested in your report of laser treatment in Adelaide. By complete coincidence I have a sister in law there who has already sent me articles by your Prof Piller there. It would be very expensive for me but it is a possibility that I could go to Adelaide for say 3 weeks treatment and stay with my sister in law. I would be very interested in whether you think that would be worthwhile. I have searched on line in the UK and can’t find anywhere that offers laser but maybe you know different?

Vertangie, I so agree with you about wanting to carry on with normal life. I can’t bear to do the simple self massage my lymphoedema specialist taught me. It was so emotionally painful to have my top half which I now hate undressed and then sit there for ages doing a stupid massage which didn’t seem to make any difference. I also hate doing my exercises and haven’t done them for ages. I have loads of compression sleeves none of which seem to be right and I only wear them for exercise. I enjoy mountain biking, running and walking - and I think they do me a lot of good, but it is enough of a struggle to motivate myself to do them without doing those horrible exercises at home as well.

Sorry for the long post and all the moaning. Thanks for your support.

Rowena

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Hi Rowena

Don’t aplogise for the long post - you have every right to be feeling totally fed up - lymphoedema is the last thing any of us need after all this. The psychological impact of this condition is so under estimated.

25 - 30% is quite big for an arm. Did you have bandaging on the NHS? How long did you have it for? Did you have MLD and bandaging at the same time - should have helped if you did, but you really need a good hour at a time for the MLD and to have someone properly trained in bandaging, too (I’m sure you did). Has anyone suggested a custom made sleeve for you?

The clinic where I was treated in Adelaide (it’s a lovely city) has carried out laser therapy for about 20 years. I had very good results, but I did have a lot going for me with that arm (mild/moderate lymphoedema, no rads, wore my sleeve).

As far as I know, there is no-one offering treatment for lymphoedema in the UK with a free standing Class IIIb scanning laser such as was used on me. There are some private lymphoedema therapists who have hand-held Class I lasers and, I believe, find that they help some sufferers.

I did find the treatment reasonably priced compared to the UK, but I think exchange rates are now not so favourable. However, I think it could still work out cheaper than the hourly rate charged by many private therapists in the UK.

My suggestion would be to e-mail Prof Piller, who, in my experience, is a very prompt responder, (although it is possible that as his name has become more widely known, his inbox is getting bigger!) and give him as much info as you can about your cancer, its treatment (ie rads or not and where), how long your drains were in, your lymphoedema (where the swelling is, how big it is, what treatment you have had - how much MLD, how many days in compression bandaging, the cellulitis). Obviously, this is no substitute for a physical assessment, but it should give him an idea about whether you would be suitable. I’m not sure about the etiquette of posting e-mail addresses here, so I will put them in a PM for you.

Closer to home, there is a French surgeon, Corinne Becker, who has been carrying out lymph node transplants on lymphoedema sufferers for a number of years now in Paris. I think the results have been good, but that patients are very carefully assessed as to their suitability beforehand.

The lymphoedema category is quite new here - but as you can see, it gets plenty of use!

Will now try to PM you - wish me luck!

Take care

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Hi Rowena
I have had lymphoedema in right arm since last year 32%. It hasn’t reduced and had two made to measure sleeves which haven’t helped. I haven’t had bandaging or MLD yet but after comments last week from Bahons I am asking about it at my next appointment luckily this Friday. I thought I had something to complain about but you seemed to have had it really rough. The comments from you and Bahons are interesting re laser treatment and node transplants, I hadn’t heard of this.

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That would be great how do i give you my address

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Welcome to the lymphoedema section Rowena - a small and cosy club! Like you I relied heavily on this site during treatment and was very pleased to see that a lymphoedema strand had started around the same time that my swelling started!
Hatts