Doc says no treatment for Lympoedema?

Hi all

I have an appointment with the lympoedema nurses on the 25 July to figure out if I have it or not but I’m now feeling guilty about the appointment due to the Doc’s attitude And have been wondering it’s worth going…

had treatment on left side which is my non dominant side, my arm aches sometimes but can’t really see any swelling however my left forearm is (0.5 - 1 cm) smaller than the right (as expected) but my left bicep is larger (1cm) than the right, my chest also has some slight swelling which appears to go up and down a bit - chest gets painful sometimes after excercising. I told the doc all this and she just looks at me and says ‘what do you think we can do about it?’ acording to her even if I have lympoedema there’s not much they can do. This I find odd as I thought the earlier you catch it the better the outcome.

I basically ranted at her for 20 mins about Lymphoedema and she eventually agreed to phone the nurses and see what they say, from this I have ended up with the above appointment but with it came a questionnaire about quality of life - all the questions seemed to imply my arm must be quite bad. So now I’m not sure if I should go to the appointment or not, I know it’s best to get sorted (if I have it) as I’ll be going on a 9 hour flight later this year, but don’t want to waste anyone’s time :frowning:

Has anyone else basically been told that there is no treatment for mild lympoedema or that it doesn’t work well?

Was left feeling like I’ just wasting people’s time, I don’t know what the doc said to the nurses, slightly concerned that they will think it’s bad but then will see me and think what are you doing here?

Moonbram x

Moonbeam, I would go to the appointment. Your GP is right in that Lymphoedema as such is a permanent condition. But there is much that can be done to alleviate the condition, and to stop it getting worse. You may need to wear a sleeve for some of the time and certainly on a long flight , even if you only have it slightly. Depending on your Health Authoritry there may be a specialist nurse who can give you drainage massages and other treatments.

I started with slight lymphoedema, and it is all on the upper arm and chest wall and neck. It slowly got worse over the years (10 years now), so I wear a sleeve for gardening,housework, any heavy work and always when travelling. I am also lucky to have a nurse who comes to the house monthly and gives me an excellent drainage massage which helps a lot. Obviously you need to protect the affected arm against any scratches/bites etc. as any infections can lead to further problems. I have had a lot of foreign holidays and never had any problems. I also always take antibiotics with me in case of any infection, but sofar - fingers crossed - I have not needed them.

Good luck with your appointment.

Hi Moonbeam,
I developed mild lymphoedema in my hand during rads. I showed it to my onc who was very dismissive. I later asked my GP who referred me to the lymphoedema clinic. The nurses there couldn’t have been nicer, they took it all very seriously even though it was very mild. I ended up with compression gloves which I wear only occasionally, but on the occasions I need them they really help. I even got a sleeve for a long haul flight, even tho’ I don’t have any arm problems. So I think you should attend your appointment. There is so much ignorance about the condition, even amongst health professionals, so I expect your GP is one of the ignorant ones.

I agree with all of the above. Go for the appointment.I feel really cross that so many GP’s appear to know very little about Lymphoedemia. Mine is in my lower right arm after mastectomy. It has decreased but last weekend it got swollen and very hot and I was diagnosed with cellulitis. I am on two weeks course of antibiotics and its already easier. I can’t see the breast care nurses til September. I would like to see them before then to be measured again and see how much bigger it is. It’ll be a fight to get in sooner. Do not feel guilty!! Go and talk to them. Good luck!

Thanks everyone, I feel much better about the appointment now, if they tell me I’m being daft and not to worry I’ll actually believe them as they know what there’re talking about :slight_smile: If I’m not being daft then the fight to get the appointment was worth while so either way the out come is good and I can relax about the up coming flight to Florida :slight_smile:

Thanks again
Moonbeam x

Hi Everyone, just thought I’d give a quick update. I went to the appointment and it turns out I do have mild lymphoedema so the appointment was worth while as I now have a glove and will be getting a sleeve in a couple of weeks (apparently I have long arms!) Just need to use them when excersing / walking and on the flight to Florida. Was also shown how to do some simple lymph node drainage, I feel much better after talking to somebody who does not just dismiss what ever you say, apparently this may still be swelling from surgery (7 months ago now) so it may still fix it self yet, but meanwhile I’ll do the massage, excersies and wear the sleeve when I need too.

Moonbeam xx

It seems such a vast subject. I had my mastectomy in 2010 and node removal, then further surgery, then chemo then radiotherapy. I developed lymphoedema in 2012 and I have a sleeve and glove and have been doing exercises but not much better. I got an appoit next week but not sure what I gonna get they seem to look at me and say what do you expect but I not happy at the mo…I need to remember to ask about massage casue last time I asked about the excercises and I was already doing them lol

Hi Bulldogbyrne, hope they can help you, the ones i saw were really good at explaining the how and why of the lymph massage. I am now looking forward to getting my sleeve as my arm is really achy today and I have no idea why (don’t think my Admin job helps) in fact I am currently typing one handed while resting arm/hand on a couple of books, hope it feels better soon as this looks odd lol

it’s so easy to forget what you were going to ask isn’t it?

Take care
Moonbeam xx