Good to hear you’ve been getting good results with your new regime and that the radiotherapy hasn’t aggravated your lymphoedema. You must be really pleased and encouraged to continue as you are.
PLEASE don’t think that I’m jumping down your throat, but…
…I’m surprised tho’ that your doc told you that ‘weight loss, swimming and sobriety were the most advanced treatments available for lymphoedema at the moment’. I agree that there is plenty of evidence that everything you’ve done is really good for a lymphoedema arm (I’m a keen swimmer and a normal weight and I know it helps me too), but it’s not the most advanced treatment out there and from personal experience I know it’s not enough, on its own, to keep my own lymphoedema situation under control. (Let’s face it, they tell you to do more or less the same stuff if you’ve got high blood pressure!) What happens if you are a tee-total, underweight, swimaholic who, through no fault of her/his own then goes on to develop an arm 30% bigger than the other and fibrosed into the bargain? It’s hardly possible to drink or eat any less.
Two well established treatments for lymphoedema include MLD (manual lymphatic drainage) and CDT (complex decongestive therapy). Compression garments (hideous things, aren’t they?) help to stop swelling getting worse and/or maintain any improvements that have been made.
There is some evidence that medicines such as Paroven and grape seed extract can have a mildly beneficial effect if taken for long enough (about 6 months).
LLLT (low level laser therapy) has been used in Australia for about 20 years and is slowly gaining acceptance elsewhere.
Research wise, lymph node transplants are now being carried out in France and Germany. Cancer Research UK has been carrying out trials of Hyberbaric Oxygen Therapy for treating lymphoedema. This is just some of what is out there. (There’s a lot of quack stuff peddled as well, I must admit!)
Hi Bahons,
I’ve been slow getting back on this - as with many of us, when rads come to an end we probably try and pretend we can put the whole sorry business away for a while; except tamoxifen came as a nasty little surprise at the end, because I’ve taken each step as it came & didn’t realise there was a sting in the tail. Scuse me while I mop the back of my knees and round my neck. So it’s back to buddies here and some comfort from the fact that the hormone drugs affect many of us the same way.
As for the lympho - you say it surprises you that docs tell people to wear the sleeve and lose some weight and go away and don’t bother us any more because we have more important conditions to treat, so perhaps things are different in the UK to Finland, where the bc treatment otherwise has been cutting edge exemplary. Here they wouldn’t even talk about lympho treatment - which I think is only the massage option - until rads were in the past & now I don’t seem to need anything at the moment. I think when the doc and I laughed about her comment, we were NOT laughing at the same thing. She was laughing about the silly women who get all bothered about something virtually cosmetic, and I was laughing sourly because ‘ain’t life like that!?’ There is, however, a perceptible cultural difference in response to various aspects of cancer and its treatment in Finland to the UK (based on what I have read here and elsewhere in the latter case). Anything not directly concerned with mortality-prevention doesn’t seem to exist.
As an Australian myself, I’ll bear the country in mind if the lympho gets worse again - a long visit might be in order. Thanks for all the information - I’ll keep it in mind.
All the best to you - you’re the one who got me off the couch and out to the pool in the first place, so thanks for that too.
I was so glad to see you’d posted again - was worried I’d upset you with my comments. My sympathies with the Tamoxifen, too - been there, done that. I remember standing barefoot on a frosty patio about 10 years ago thinking I was going to spontaneously combust!
I think the dismissive attitude to lymphoedema is fairly widespread. I’ve recently moved from the UK to France and doctors here don’t get particularly exercised about it, either. (It has been a lot easier to get treatment for it tho’, mostly massage and custom made sleeves, there doesn’t seem to be an off-the-shelf system at all - France must be doing the ‘haute couture’ of compression garments - ha-ha). I just find it amazing that the loss (even a small one) of function of a limb can be taken so lightly. And it’s not just cosmetic, either - there’s something very normal in wanting to be symmetrical, it’s hard-wired into our brains - it must be - all those women wanting reconstruction are testimony to that - so what’s so wrong about wanting a normal sized, pain-free and fully functioning arm?
I’ve found the French attitude is to concentrate on delivering the most up-to-date treatment as quickly as possible (similar to the Finnish?). They don’t seem to go in for breast care nurses, leaflets, pre-chemo appointments and tours of chemotherapy suites, etc. It’s very much in at the deep end (the interval between being told I needed chemotherapy and getting the first dose was less than 3 hours!), with advice on side effects given verbally and consisting of ‘your hair, and possibly your nails will fall out and you’ll feel very very tired most of the time’. (Spot on). There are other professionals available if you need them (psychiatrist, dietitician), but I don’t do, by and large, the ‘touchy feely’ stuff and I’m old enough (but not too old!) to feed myself properly.
Anyway back to the big L. Your native land seems to be blessed with a number of pioneering people and organisations who see lymphoedema as a problem to be solved once and for all, and not just something to be contained at minimum cost to the State. I hope you never have another problem with your arm, but if you do, I can supply more details of where I was treated in Adelaide.
went for my monthly check up after 3 weeks of bandaging and found out that my arm that was 18% after bandaging has gone down to 8% today! I am so happy. I was told to wear my sleeve and one layer of bandaging at night for a month and now I have had good result!