Lymphedema experience/treatment.

Hi , I have lymphedema in my right arm post mastectomy, lymph node clearance, chemotherapy and radiotherapy last year. I’ve been told wearing a support sleeve over my arm and hand is “ long term” and really don’t like the thought of it being permanent. Can actually deal better with loss of beast as it’s easy to wear a prosthesis. I’ve appointments with lymphedema clinic this month for exercise and  MLD which I’m pinning my hopes on helping. Can anyone else offer advise or relate their experience ? 
Thanks 

  • Hi, I'm about the same stage as yourself, though in the breast and not the arm and it's beginning to dawn in me that this could be a long term challenge, something I had probably under estimated. I have a referral to the specialist team in a few weeks time.  Good luck, I hope the exercises and MLD work well for you

  • Thanks for your reply. My initial appointment with the lymphoedema clinic was 2 hours! Very informative and thorough . Hope you get all your questions answered. I’ll report back on my treatment . 
    thanks again 

  • I have lymphodema, developed immediately after my mastectomy in 2015. I am aware that some people say their lymphodema has been cured, but I was told by the lymph. clinic that it is a lifelong condition that cannot be cured, but it can be managed. I wear a sleeve (don't need a glove) and go to the clinic every 6 months or so to get my arm measured and new sleeves ordered. The swelling varies in size. depending often on what medication I'm taking. Some meds. cause fluid retention. At the moment my arm is almost a "normal " size. I can see it's a bit swollen but I don't think anyone else could. I wear my sleeve every day, putting it on in the morning and removing at night. It is okay to leave it off for a while if you are going somewhere nice, and want to wear sleeveless or short sleeved tops. .  

    MLD should help and you can do simple lymphatic drainage yourself. Take care of your arm. When I was first diagnosed I made the mistake of looking it up, and saw some awful pictures of limbs that had not been looked after.. That scared me, but when I told the lymph nurse she said that wouldn't happen to me because "they wouldn't let it".

    Hope this helps

  • Just seen you've already had a useful initial appointment. To add to the ways of keeping it under control I'd like to add RLD. This is a special kind of reflexology which works on helping the condition. I have a session once a week (private) and I have found it very useful. There are other complementary therapies that can help too and if you go down this path it's a matter of finding out what suits you.

  • I have been told I have lymphoedema in my left breast after RT treatment last October. I noticed the swelling and pain around March time.

    I have seen the lymphoedema nurse and was told to continue with lymphatic drainage and exercises. I am seeing her again next week.

    what worries me is the pain in the breast and shoulder and it’s definitely affecting my work- I am a nurse.

     Not sure what the long term plan is but am hoping it stays contained in the breast and does not get to my arm. 

    all the best x 

  • Can I ask you all how your lymphoedema felt when it started please? I finished radiotherapy about 3 weeks ago and have a general ache all the way down my right arm. I can't see a size difference yet, but am wondering if this is an early sign of lymphoedema? 

  • Hi all, very recently developed lymphoedema. Totally gutted. Thought I had escaped at least one side effect... I've worked my way through just about all the possibilities so far. Had chemo, smx, RT. Sigh. Was seen quickly by lymphoedema nurse and given a glove and sleeve and a couple of leaflets. Got a follow up appointment in a few months. So all good on that front. But then I'm thinking...is that it? I didn't really prepare for the appointment...I think I was a bit shell shocked and in denial. It's mild... Well I think it is, what do I know? Nothing to compare it with. It's in fingers, hand, arm. Now I'm worrying it's in my chest area too. I wasn't examined apart for the arm. Wearing compression sleeve and glove but chest feeling a bit tight. Where do you go from here... Is this it forever? Sleeve sooooo uncomfortable. What if you dont wear it? Does it get worse? Does it ever get better? Do I need to do massage if it's only mild?

    What do people say when folk ask them about the sleeve? Everyone keeps asking. I'm not really bothered that they know just fed up with explaining. Feeling a bit under informed... Hey hoh... Need to do research. Would welcome any comments, advice etc. 

  • See my posts above. 

    Your sleeve shouldn't be uncomfortable. The only time mine has been uncomfortable was when I was given the wrong size and I felt as though my circulation had been cut off. That hurt at the top of my arm too, and as I have muscle and nerve damage there I had to take it off. But the proper size should feel firm and supportive, but not painful.

    Yes, massage will help. You need to move the lymph away from the lymphodema side over to where there are other lymph nodes that will help expel the fluid from you body, and massaging will do this. Loads of videos on You tube, lots of info leaflets by Macmillan. The leaflets you were given should explain what you need to know.

    No one has ever asked about mine. It's covered most of the time anyway. If they did I'd just tell them that I have lymphodema, what that means, and that the sleeve helps to manage it..

    Let your lymph. nurse know that your sleeve is so uncomfortable, so you can be prescribed a better fitting one.

  • Thanks that's really helpful. I'll need to research MLD, RLD etc. You tube here I come. LOL. Sleeve tight at top, maybe I need a bigger size. Who knows I'll see how I go. Thanks again.

  • I developed swelling after radiotherapy.  A lot is in my profile. I too was seen by physio although they've never actually confirmed it is lymphoedema she just commented that my lymphatic system is unhappy!

    I get a puffy armpit area. Also wearing a wired bra now but find by 5pm ish it has to come off as my boob at bottom can get a bit hard. By that time, I've also usually started to massage it. I'm due for a review with my first year mammogram but still waiting for appointment. 

    We have dedicated website at hospital where I was treated with extra exercises which may help you at www.yoursurgeryandrehab.co.uk 

    It is getting less and I know I should wear my sleeve but yes its tight and on a couple of occasions I've had pins and needles and my hand goes a mottled colour so I took it off. I only wear on alternate days.