Lymphodema newbie

Hi all,
I had hoped that after my axillary clearance I’d be a lucky one and not develop lymphodema. Sadly no. My wrist became swollen today 5 weeks after my node clearance. To the untrained eye, it looks fine, but I can no longer feel or see my wrist veins and arteries. I cannot wear my wedding ring.
What should I do? Do I go to GP or breast nurses? Do I need to buy a sleeve?

Thank you

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Dear bluesatuma, so sorry to read your post, as if you haven’t had enough going on now you have lymphoedema, If you’re very worried and can’t do anything until Monday I would be inclined to call 111

Hopefully you’re not in too much discomfort. call your breast cancer nurse on Monday who may arrange treatment or physio for you.

I do wish you well. Fingers crossed for a good outcome.

Hugs Tili :pray::rainbow::pray::rainbow:

Thanks @Tili. I really thought I’d not get it. Feel so angry that even when I’ve beaten cancer, I will be left with this. Whe I signed for the ALND, I was telling the surgeon how scared I was and she was telling me what a small risk it was. I will ring nurse on Monday. I don’t know if they will do anything. X

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I would be angry too and I’m sorry that you’re dealing with this. If you contact your BCN on Monday they will definitely do something it will be a question of how long you have to wait but they may be able to advise you further as to what to do in the meantime. Services seem to vary around the country . Where I am there’s a Nurse Specialist in lymphoedema , there may be Physio as well . If you need a sleeve they should be able to fit you with one and some areas have some sort of mechanical treatment . You could also try asking MacMillan - they provide a wide range of services and treatments for free or might be able to help with finances if you need to buy sleeves etc. We have had a couple of talks about lymphoedema at my support group and both practitioners said that in the vast majority of cases it’s much more manageable than it used to be which was confirmed by a group member who had developed it . I know that won’t be much comfort right now .

I’m sure you’ve figured out that you need to keep doing the post - op exercises and elevate your arm if you can whilst you’re sitting but sometimes when you’re angry the basics tend to go out of the window.

Xx

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Thank you @JoanneN. Good advice and I will follow it all. I noticed it last night after a long day shopping with my daughter. When we got home I realised my arms looked different to each other. I have measured around my wrists and below elbow and noted activities, so I can keep note of any patterns and changes. I need to ensure it doesn’t worsen as I need to work and look after my kids. Thanks for your info and advice x

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This also happened to me, contact the breast care nurse they will advise you. Unfortunately it’s something we have to live with but it is managable. Good luck :+1:

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Hi bluesatsuma

Welcome to our very special subset !!

I totally get it. With strong fam hist of bc, getting bc myself wasn’t a great surprise. However, with the stats being so low for lymphoedema (and it usually occuring many years down the track), when I got it exactly the same time after surgery as you, I felt far more angry and hard-done-by than I did about the 2 simultaneous breast cancers. It just seems SO unlucky and unfair that there’s yet more to manage and accept, just when you’d been so brave about, and were dealing with, the cancer ! Turns out I only had the one affected node which was found during mastectomy surgery anyway. So you could say, I have this lifelong extra burden unnecessarily … but I elected axillary clearance (over radiotherapy alone) because I HAD to know that a physical check had been done of my lymph nodes.

My left arm (but mainly the hand) are affected, initially visibly with my hand being very tight and ‘full’. There was a wait of many weeks for NHS clinic, so I went privately a couple of times and had a couple of sessions of heavy strapping (multiple layers of different wadding and bandages that apply constant resistence to the fluid build-up). Not fun, very debilitating for those few days, but was very visibly improved. The thing with lymphoedema is that you can push it away but it often fills up again quite quickly INITIALLY. But after your body has a chance to adapt, it gets much better at keeping it at a very low level (in my experience). The private therapist also administered Manual Lymphatic Drainage (MLD), to move the fluid.
Find loads of really helpful demos to learn from, about self-administered Simple Lymphatic Drainage (SLD), a light-pressure skin massage, on YouTube by specialist lymph therapists, particularly softly-spoken blonde American Kelly Sturm. I describe her thus, because her name doesn’t appear on her videos.

You can get soft-bristled ‘body brushes’ in The Body Shop with which to lightly stroke your affected area in the direction of other lymph nodes and channels. There is the Bellicon (or similar) mini trampoline to bounce on (because all exercise to stimulate your whole lymphatic system helps). A squeezy foam ball to exercise in a repeated gripping motion (hand, crook of elbow, and armpit - yes, even now) helps to stimulate the lymph flow and empty the remaining nodes through your hand/arm.

I found the Lymphoedema Support Network (LSN) has a rather doomy gloomy take on the whole affair, emphasising the incurability of the condition. On the other hand, a friend of a friend (who’d also developed it post cancer surgery and who was very positive and supportive), was convinced she’d got rid of hers long term, and swore by alternative and holistic therapies, some of which she offers to others such as ‘gong baths’ - basically a deep relaxation from the vibrations of gongs and other instruments. But I digress !

Next, I tried a couple of other, local therapists specialising in this who advertised online. They were both lovely and it was very pleasant, although effects were temporary (but it was early days, to be fair).

For general info, there’s also the British Lymphoedema Society, The Lymphoedema Training Academy (lymph.org.uk - for professionals but interesting), and LymphConnect (an online platform developed by JOBST, a compression garment manufacturer).

Eventually, I reached the NHS clinic where I met my brilliantly helpful (and amusing, jolly) therapist - a shout out to Amy Duffield in Sussex. She demonstrated how to do self lymph drainage, ordered me a raft of different compression garments to try out (and kept on going until I found the best to suit me), monitored improvement by taking a series of measurements regularly (apologising profusely for drawing all over me in ink), applied heavy strapping (freshly every day for a week, which was a combination of home visits and early morning trips to the clinic). She also gave me a month’s trial run at home with an electric pneumatic sleeve, which mimics massage with waves of different pressure zones. So easy to sit watching TV while it does its stuff (turn the volume up a tad). This did such a good job of keeping the swelling down to the very slightest pockets of fluid along the base of my fingers, that I invested £1,000 in one of my own which I use for 35 mins daily :
LymphAssist homecare range, model: Hydroven 12, supplied by company Huntleigh, but get it through the NHS to achieve this price. I notice that when I do make the effort to wear a compression garment all day, this further empties and slackens the skin across the back of my hand.

Anyway, after a few months of working things out, I’m now at a stabilised ‘norm’ where the difference between my two hands, and my two sets of fingers, would not be noticeable to anyone else. I can’t tell any visible difference between my arms. Sadly, I don’t think I’ll ever get my engagement and wedding rings back on the correct finger and I’m limited on any others I can get on that hand.

Such a lot of info - digest at your own pace.

After initial treatments and lines of attack, regular maintenance is the way to go to keep it at bay, but really don’t worry, it’s not that arduous or time-consuming.

Wishing you the greatest of good luck; keep the faith !

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Thank you so so much @MistyK. Youve given me tremendous hope and lots of positive ideas to try. I will ring my breast care nurse tomorrow and ask to ve referred to lymphodema clinic. May I ask how old you are? I’m 46 and a teacher. I want to be able to work, play with my kids and go to the gym. I can’t have this hold me back. I was fit and healthy before my surgeries. Not even got to chemo or radio yet so dreading the consequences of that. But thank you for all the time and info in your message. I shall definitely be working my way through the advice. Thank you xxx

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Hi there,
I am new to this lymphoedema, having been diagnosed with it about a month ago.

I have found out a lot. For me it is made worse by being very active e.g. the 2 hour line dancing class I started going to in January! (I’m not going back yet). Or vigorous gardening.

Surprisingly, inactivity e.g. a long car journey filled by sitting around catching up with people, sets it off just as bad!

So, I am finding that a balance between the two is needed and I don’t always get that right.

I have just been to the lymphoedema clinic and they have prescribed me a sleeve and glove.

I am finding this diagnosis totally different from the cancer one. I suppose because this is a balance that I’ll have to live with.

I am starting to feel a bit less overwhelmed by it.

I hope that you get some answers and help with yours soon.

Take care x

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Hi @Katie_S. I am sorry you have it too. Hopefully I will get referral quickly and will get some help soon. Read the post above from @MistyK as it has some great info. I too find that heavy exercise aggravates it as much as no exercise.x

Hi again

I’m a young-in-my-head 63 (was just turning 62 when I developed lymphoedema). I haven’t found it physically restrictive (other than when I neglect maintenance for several days and my hand gets a bit tight to clench/grip). Exercise is good generally for the overall lymphatic system, but I used to find that during a walk, fluid tended to settle in my hand so, much to the consternation of passersby, I’d swing my arms energetically or hold my hand up against my chest. Didn’t do much good, though. It only really happens now if I carry a heavy shopping bag in it too far.
I wasn’t prescribed chemo and got off lightly re radiotherapy side effects. Basically none (very slightly discoloured skin, hardly noticeable then and gone now, no extra discomfort to add to the sensitivity of chest skin after double mastectomy, staying flat) although I do get breathless more quickly now, which could be down to unfitness. Took AI (Anastrozole) for 10 months before deciding those side effects were impacting on who I was, my energy, my mobility, my dexterity and my positivity too much for the small reduction it was purported to make in my recurrence risk. Again, good luck.

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Thanks @MistyK. It sounds like it’s been manageable and long may that continue. Mine seems to mainly affect my wrist currently. Its worse in evening. I wonder if it might be in my breast area too. I left a message for my nurse. Thank you for your positive advice. Its been so helpful. X

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Fear of the unknown is the worst fear. Hope I’ve demystified lymphoedema a bit for you :blush:

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Ive been told I need full lymph node clearance but I’ve decided to refuse it. Like you, I was so worried about getting lymphoedema! I’ve got time as not had date for my op yet but I’m leaning towards saying no! I wish you best of luck, I’ve heard there are really good courses online about drainage, hope you get sorted❤️

Hi @maza1. When I asked my dr about it, she said that the lymphodema nurses could see me but that what I was showing her was so mild that they wouldn’t do anything. Since I posted this thread, it hasn’t got any worse or any better, but no-one except me notices it really. I’ve been massaging daily eith nivea, using sun cream and insect repellant. If it gets worse, then i will go back to dr. I didnt even realise I could refuse the ALND. What will they do to check the lymph nodes? A scan? Or will they give you radiotherapy to axilla?
Personally, I’m glad I had the ALND, as more cancer was found and now it’s out. However. It does mean I need chemo now too. Good luck to you whatever you decide. X

I’ve had 7 removed, then had chemo, heard today I’ve got surgery on June 20th!! Then following that, I’m having radiation therapy! I’ve asked to speak to the surgeon about it before I make a decision. Seems the new theory is that targeted radio is the way forward, it’s so tricky. This decision is giving me grief!

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This is very interesting https://www.youtube.com/live/H-Ezi6NiICU?si=OiWxZ5BYYZPl1VR8

Someone sent me this too!

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