Newly dx with lymphoedema, what should I expect???

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Hi all,

I’m just looking for some help or useful advice really. I was diagnosed with lymphoedema by my gp earlier today. I am 36 and was dx with bc in March 2007. Had the full works! As I had 28 nodes removed I have always been mindful of lymphoedema and have done what I can to protect myself as much as possible (or so I thought!).

It may sound a bit OTT but I am pretty gutted that I’ve developed lymphoedema. I am scared at how debilitating it may turn out to be. My gp immediately got in touch with my bc nurse who then rang me. She is making an urgent referral to the lymphoedema team at my local hospice and said they will be in touch asap. So, I’m not really sure what happens next or what to expect?!

Maybe I’ll feel better about things once I’ve been assessed by the lymphoedema team and started some sort of management/treatment programme? Has anyone else felt really down when they were dx with this? Does it run your life or do you just learn to live with it and adapt accordingly?

Any advice or help would be greatly appreciated,

Thanks for reading!

Kelly
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Kelly, I’m not sure that I can be of help as I have just been diagnosed too and fitted with a sleeve and glove as my hand is very swollen. I would just say that I too feel gutted as it is not only hard having the condition, but the compression glove in particular is hard to live with - makes it hard to make fine finger movements. So you’re not on your own with this. It may also be a temporary condition - my nurse said some people do manage to get it down. But I am very upset at the idea it may be permanent too. Let us know how you get on with it. Maybe we can get some advice from the others on here who have been living with it for longer.

Best wishes, Maggie.

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Hi Kelly - and Maggie, too

Sorry to hear you’ve been diagnosed with lymphoedema. A fat arm is no reward for getting through surgery, chemo and rads. And you’re right to be feeling cheesed off, especially as you’ve been trying your best not to trigger it. It does seem as tho’ some people will develop it, no matter what.

It sounds like your GP is really on the ball as far lymphoedema is concerned (many aren’t, although things seem to be improving), ditto your bcn. One thing I would say, keep chasing the appointment with the clinic, as other people have reported long waits.

I expect they will measure your arm and give you a sleeve to try. If your arm is very big(?), they might organise some treatment, but that might well come later. I think at the outset, they may just show you how to massage your arm yourself, give you some exercises to do, some tips on how to look after it and see how things go.

Properly managed, you are controlling the lymphoedema and not the other way round! You may need help from the clinic to achieve this.

I’ve had lymphoedema in both arms (11 years in the right and 4 years in the left) and I hate this condition with a passion. I think I still manage to have a good quality of life, but things ain’t what they were.

I think I’m the site’s resident lymphoedema bore - sorry! But I’ve posted lots of info’ that I’ve collected over the long years that I’ve had it, when I’ve thought it might interest, or be useful to, others. I won’t add any more here for the moment as you’ll just get overloaded.

You have every right to feel completely and utterly fed up - moan here all you want - everyone will understand!

If you want to ask any more questions, please do - I’m sure everyone will do their best to help.

X

S

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S, don’t see yourself as a bore. I’m working through the threads and finding the information you have posted very helpful - thank you. It must be devastating to have it bilaterally. Of all the worries I had when I was diagnosed, this didn’t enter my head! But at the moment, what with that and the chemo, it’s very hard.

Love, Maggie x.

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Yes, it is hard, I do agree.

I’m having chemo (Taxotere) myself at the moment and I think it makes it worse, so I’m hoping for an improvement for you and me both when it stops!

Take care

X

S

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Hi

What a bummer for you both. Can’t really add anything more than what Bahons2 has posted, but I’ve found her to be a great support. Keep chasing the appointment, I waited 4 months from bcn referral to appointment at lymph. clinic and in that time my arm did increase noticeably in size. Sorry Ihope that doesn’t worry you,but the quicker you are seen the better.My arm has recently started to reduce in size, I wear a sleeve (also covers my hand) and do exercises and lymph massage twice a day as well askeeping arm moisturised. Hopeyou get this sorted soon, keep us posted.

Take care

Lynni x

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Hi ladies,

thank you so much for your speedy responses, I very much appreciate it. I’m sorry to hear that you have literally just been diagnosed too maggie, guess we’re the newbies here! I shall certainly be calling on the experiences and knowledge of S and lynni! My arm looks quite revolting at the mo so I’m glad its winter and I am able to cover it up, not sure who easy it will be to disguise in the summer though.

I have spoken to the bcc helpline today and they put me on to the lymphoedema support network. Not sure if anyone else has had dealings with them but they were ever so helpful and are sending me a resource pack. I need to find out as much about this as possible!

Thanks again for all your help,

I wish you all the very best and I’ve no doubt we’ll be ‘speaking’ lots over the coming weeks and months,

Take care all,

Kelly
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Hi ladies,

S. You are certainly no bore!!
I think many of us on here hang on to your every word, as you say little seems to be known about the condition,
In hospitals,so many of the teams are dealing with more serious conditions that Lymphoedema just takes a backseat.

I played golf yesterday and my arm is so achey today , hope it`s not a sign of things to come!
I have an appointment with the lymphoedema nurse tomorrow, up until now I have just been issued with sleeves, so hopefully she will teach me how to massage etc.

I agree with you all…lymphoedema is a real sting in the tail, it`s amazing how we can all cope with the nightmare chemo, surgery and rads but this seems so unfair…oh well, better get on with it like everything else these days there is nothing we can do about it now!!

Sorry for the moan but feel better now!!

Take care,
love
jan x

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Hi, moan all you want, i certainly do and if it makes you feel better… good. At least on here everyone understands the feelings and frustration.I personally don’t know anyone who has lymphoedema so its been great to talk and vent feeling sometimes

Lynni x

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Hi Jan,

its reassurring for me to read that although you have lymphoedema you are still able to play golf. I enjoy a round of golf and was worried that I may never be able to pick up my clubs again, I guess thats not so which is great news!

Thanks for that!

Take care all,

Kelly
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Hi Kelly,

Both my lymphoedema nurse and my onc. actually recommend golf as it a good way of exercising your arm.
My nurse said she has a couple of patients who play regularly.

Today I had a knock with a friend in gale force winds and played so much better than yesterday and my arm feels great, so feeling much better!

Take care
Jan x

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Lynni, do you have an all in one sleeve and glove? I find the overlap between seperate sleeve and glove causes my wrist to have bands in the swelling?

Maggie x.

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Dear Kelly

I have nothing useful to say about lymphoedema at all as I seem to have escaped it so far. Just wanted to say hallo. You have been such a help to me on this journey and I am so very sorry that you now have this to face as well. As my mum used to say, never expect life to be fair, but this seems so very hard.

Thinking of you dear Kelly and waiting for the top tips, which have helped so very many people. You are a complete star.

Much love

Dilys

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Hi Maggie

It is all in one, but not a full glove, it ends at base of fingers, but covers most of thumb. The web of skin between thumb and finger also gets very red and sore where it rubs. I’m hoping if arm reduces further to go back to sleeve which ends at wrist and also return to a “juzo” sleeve as it was more comfortable to wear. Thematerial was alot softer and didn’t itch or scratch. I’m using a “medi” at the moment. Is the glove a temporary measure for you?

Take care

Lynne x

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Do any of you ladies know how to prevent lymphodema. I have had a bi.mx and getting lymphodema worries me. I am doing my exercises on my arms once a day and giving my arms a light massage when in the bath, starting at the top of the arm upwards, then from wrist to elbow, then hand. Is this a good prevention?

Angela xx

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Hi Angela

I don’t know how to prevent lymphoedema, sadly no-one does. All we can do avoid things that may trigger it and at the same time give our arms all the help we can.

I’m not a lymphoedema expert, but there doesn’t sound as tho’ there is anything wrong with what you’re doing, assuming your bathwater isn’t too hot, as heat is not good for ‘at risk’ arms.

Other ways to help your ‘at risk’ arm are:

Lose weight if you need to, avoid heavy lifting and any kind of prolonged repetitive movement. I would say also to keep the skin well moisturised, elevate/support your arm when resting (especially the elbow), wear rubber gloves when washing up, avoid tight jewellry/watches on that hand, avoid hot baths and spas, drink plenty of fluids, make sure your bra isn’t too tight and that the straps are not too narrow, don’t sleep on your ‘bad’ side… sure there’s loads I’ve forgotten…anyone else?

No injections, BP or blood draws on that arm (or hand) - but I’m guessing you would have been told that at the hopsital anyway.

Oh yes, try to avoid being bitten, scratched, stung (use insect repellent) or cut on that arm and if you do, disinfect it straightaway. If you are a gardener, wear gloves and long sleeves.

Swimming is good for lymphoedema if you’ve got the OK from your onc/surgeon, but don’t overdo it to start with. Deep breathes also help to move lymph fluid, but don’t do too many at once (dizziness!)

The trouble with the cruel lottery of lymphoedema is that you can take every known precaution and still get it. All you can do is try to reduce the risk by avoiding, as much as possible, events likely to set it off. The likelihood seems to vary also with age, what procedures you had done (radiotherapy increases the risk) and the make-up of your own lymphatic system and how many nodes were removed.

Good luck!

X

S

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Hi Dilys,

thank you so much for your kind words, they are very much appreciated. I hope you are doing ok and are feeling good.

Take care, and thanks again,

Kelly
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Just wanted to endorse what Kelly/Princes18 has said about the Lymphoedema Support Network.

It’s very reasonable to join, you get lots of info’, including a quarterly newsletter, which is very informative and sometimes has details of research trials and new treatments that you can volunteer for. It’s also a good way of finding out what you are entitled to from the NHS.

At the moment the LSN is fighting to get NICE guidelines established as currently each Health Authority can do pretty much what it pleases in terms of lymphoedema treatment, which is resulting in wide variations in levels of care, access and waiting times to be seen. Also, without standards and protocols to adhere to, it makes lymphoedema services an easy target when they start looking round to find somewhere to cut costs.

X for now

S

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Hi ladies,

just to let you know I now have my firts appt with the lymphoedema team. I am seeing them at the local hospice on Monday afternoon. I’m hoping they’re gonna be able to do something to help with the swelling I have at the mo. I’m actually 'looking forward to going (for want of a better word!), just wanna get sorted now.

Take care all,

Kelly
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Hi Kelly

Good luck. I hope they can help you to get it sorted out. Will think of you on Monday.

Love

Dilys
xxxx