Diagnosed with lymphoedema yesterday - just saying hello...

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Hi…:smiley:

I was diagnosed with lymphoedema yesterday afternoon.
I was diagnosed with IBC last May so had 6 months chemo first and then my mx in November with full lymph node clearance. I had my rads in Jan / Feb and had to have quite a high dose because of the IBC including 15 days wearing a “bolus” (a jelly like cover that increases the dose to the skin layer) so i ended up with loads of moist desquamation. Which i must admit healed really quickly once i got the special cream at the end.

Started getting problems with my arm about three weeks after it got banged in bus accident - so phoned the physio i saw for the exercises post op and she arranged for me to see the lymphoedema nurse yesterday.

Now got loads of leaflets etc and need to go back in a month to see how it is going and make sure i took in all the exercises correctly etc. At the moment it is not too bad - she said my lower arm felt harder but it was actually my upper arm that measured more (the lower arm was also bigger than my other arm.) and is where i have been having the feeling of heaviness and most of the pain.

Just wanted to say hello as i bound to be back with questions etc. :smiley:

Theresa

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Hi Theresa

Just read your post and was wondering what (special cream )you were given for your moist desquamation. (Dont know how you managed to spell that), I could hardley pronounce it.

I finished my rads on the 24th March and have been in agony ever since (I split after 17/25) All I use is Nu-gel and I dont think it does any good as my whole breast is now skinless.

I also have lymphoedema in the trunk/breast but they cant touch that till I heal. So if you know of cream thats worth a try I could ask my doctor to prescribe it as sometimes I think he is out of his depth and does not know what to try.

Keep coming with the questions, someone allways has a sugestion if not an answer. I think I have got more answers from this forum than I have got from the profesionals.

Annie

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Annie - sorry to hear that you are in pain…:frowning:

I had flamazine cream the active ingredient is 1.0% silver sulfadiazine (that is why we can’t use it until the rads finish as the silver shouldn’t be put under the rad machine…)

The cream has to be stored in fridge and discarded after one week, i used mine with Melolin dressings (also from the gp/ rad unit) you apply a thick layer of cream and then put on the dressing with the shiny side against the skin… and keep it there as much as possible… it sounds weird but moist desquamation actually heals better and quicker in a damp environment… don’t worry about using a thick layer as the tube has to be thrown away after a week anyway… it took about a week for me to heal and i used the dressings on my underarm and neck (had to use tape to keep the neck one in place…)

Theresa x

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Hi Teresa and anniemac

And hello and welcome to you, too :slight_smile:

But sorry to hear you’ve both been diagnosed with lymphoedema :frowning: and are in such pain.

Hope the exercises are helping, Teresa. Have they given you a sleeve?

X

S

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Hi Theresa,

Welcome to the lymphoedema club - and hope you are affected as little as possible.

Sorry you had such a bad time with radiotherapy.

I’ve got lymphoedema in my r arm and chest wall. I have a sleeve (several) but I’m not very good at wearing them although I always wear one for any sport even walking. That’s not meant to put you off wearing a sleeve, the consensus of opinion is they definitely help cpntrol the swelling.

There is loads to learn about lymphoedema, just just take your time and ask any questions you want here.

Rowena x

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Thanks for the welcomes everyone :smiley:

No sleeve yet as it wasn’t bad enough for one… Am hoping that because i have caught it early I won’t need one - but as with anything to do with breast cancer will have to wait and see on that one…

I think at the moment i am just hoping i am doing the exercises in exactly the right place on my neck and collarbone area.

Theresa x

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Hi All,
I hope I am posting this correctly.
I have lymphoedema which showed itself before I even started Radiotherapy. I finnished treatment on 7th April.
The only exercises I have been given are the ones to be used following mastectomy. Are there any other exercises I should know about.
My arm is getting bigger even though I am wearing a sleeve and sleeping with it elevated. I don’t think we have found the correct sleeve yet.
My lympoedema nurse will not do MLD as she is waiting for a letter from my Oncologist to say it’s OK. He dictated a letter to her several weeks ago but she has not received it yet!!!
I am very worried about the lympoedema getting worse as all the information seems to point to early treatment having a better outcome. Any information would be greatly appreciated.

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Hi Neelie - and welcome

But so sorry you’ve had to join us!

I’m a naughty girl was far as exercises go and I don’t do much (partly because I’ve got tennis elbow), but a lady called Fizbix posted loads on here a little while ago and I’ll try to bump them for you in a minute.

I think that as far as lymphoedema goes you have to be a right squeaky wheel to get any grease at all, so I would suggest you need to now make a fuss and try not to get fobbed off.

If your onc really did dictate a letter weeks ago (heavens knows I’m not the suspicious type, but did you actually hear him/her do it?), your lymphoedema nurse should have it. Unless:

1 Her mail doesn’t go directly to her and her superiors decide what she gets to see, and how quickly.

2 Your onc’s secretary is not pulling her weight and has decided for herself that ‘there’s no rush for this one’. (It happens - and it shouldn’t. It’s a bog standard letter, for goodness’ sake).

3 Letters referring patients to lymphoedema clinics are routinely given a low priority by your oncologist.

4 Your lymphoedema nurse has the letter, but budgetary constaints are being imposed on her which are preventing her from giving you the MLD.

What to do? Have you tried contacting your onc’s secretary? Have you got a bcn who can wade in on your behalf? Failing that, is your GP any help?

In the meantime, if you are not happy with your sleeve, push for something else. Lots of people find Medi sleeves don’t suit them, so if this is what you’ve got, something else may well help.

Also, use painkillers. Prescription strength, if necessary. Pain makes lymphoedema worse (it’s a vicious circle).

Do you like swimming? If there’s no medical reason why you can’t go, it’s very good for lymphoedema. But don’t overdo it at first.

I have also sent you a pm.

Hope you get some joy from someone soon, and let us know how you get on, won’t you?

X

S