Lymphoedema and recurrence fears
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Andi just wanted to show you how to reply to a post. It's a bit bold looking as you can see, but if you click on the quote underneath what you want to reply to it will appear like this and you can type your reply. Paula xxAndij said:Hmmmm what a shame you can't reply to someone's post under their post. Bit odd. Anyway...
Thanks Melinda. Yes do so try to take each day one at a time. Just gets tiring sometimes when things keep happening. But will carry on.
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Hi there, just wanted to jump in with my wealth of lymphedema experience (my ownLITHGOW1950 said:Damn! Better get the soreness under my arm checked. Can you tell me is it best to see my GP or a physio?
). GP's or even surgeons are often not up to date with lymphedema sad as that may sound. However they may be able to refer you on. The best person to see in a lymphedema trained physio or OT. Depending where you had treatment some hospitals have these attached to their cancer units. Here is a great link to Australian Lymphology Association. Chek it out, there is a link to help find a therapist. Beware there are some untrained people out there claiming they know how to do massages etc. Good luck.
Paula xxx1 -
I started with a private physio then my gp referred me to the hospital clinic. Now I see both, maybe excessive. I keep the private physio because I assume sooner or later I won't be going to the Hospital, they are so busy. I have found a good lymphatic massage therapist through the private physio.
My lympodema isn't that bad but I it's hard to take at times. It's so constant. Plus knowing it's probably for life is draining. At times I get pessimistic. I would love to put the cancer behind me but this makes it a bit more difficult to do. On the other hand there are ways to manage the condition so it's not all bad. A cheerful kind positive physio is a great support I find. It's a funny condition in that people who don't have it tend not to understand it. Good,luck with it all. Winter is coming.
Karen1 -
Thank you so much ladies for your replies. Very helpful.1
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My arm and hand blew up while I was on chemo. I wore compression sleeve and gauntlet and started lymph draining massage. Look on youtube and there are some good ones you can follow on there. Heat is the worst as it makes my arm swell very quickly. I try not to do much with that arm while its hot weather. I have no nodes left under the arm so I imagine I will have to keep the massages up for life long. Small price to pay for getting rid of cancer.1
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Brenda5 said:My arm and hand blew up while I was on chemo. I wore compression sleeve and gauntlet and started lymph draining massage. Look on youtube and there are some good ones you can follow on there. Heat is the worst as it makes my arm swell very quickly. I try not to do much with that arm while its hot weather. I have no nodes left under the arm so I imagine I will have to keep the massages up for life long. Small price to pay for getting rid of cancer.Yes I am finding the heat really upsets it quite quickly:(0
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I might see both too I think Karen, but the private one less often perhaps. Yes knowing it's probably for life is hard to come to terms with. Yes there are worse things in life, but this is hard. The all in one sleeve and glove is hot, it is restricting, can't type properly, play the piano, guitar, can't wash hands properly in the day etc etc. It will get easier I guess, just feeling ticked off:(Karenhappyquilter said:I started with a private physio then my gp referred me to the hospital clinic. Now I see both, maybe excessive. I keep the private physio because I assume sooner or later I won't be going to the Hospital, they are so busy. I have found a good lymphatic massage therapist through the private physio.
My lympodema isn't that bad but I it's hard to take at times. It's so constant. Plus knowing it's probably for life is draining. At times I get pessimistic. I would love to put the cancer behind me but this makes it a bit more difficult to do. On the other hand there are ways to manage the condition so it's not all bad. A cheerful kind positive physio is a great support I find. It's a funny condition in that people who don't have it tend not to understand it. Good,luck with it all. Winter is coming.
Karen2 -
Ahhhhh thank yu:)mum2jj said:
Andi just wanted to show you how to reply to a post. It's a bit bold looking as you can see, but if you click on the quote underneath what you want to reply to it will appear like this and you can type your reply. Paula xxAndij said:Hmmmm what a shame you can't reply to someone's post under their post. Bit odd. Anyway...
Thanks Melinda. Yes do so try to take each day one at a time. Just gets tiring sometimes when things keep happening. But will carry on. x0 -
Crumbs BC just keeps on giving!1
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I had an all in one compression sleeve for a short while and nearly went batty. I can count the times I have cried about cancer related issues on the fingers of one hand and still waggle a couple, but I once hurled the wretched thing across the room and howled! But I also learned a valuable lesson. Mainly and sensibly we mostly do what we are told with treatment. But occasionally it's worth saying something. When I told my excellent therapist how exasperating (awful to put on, pinched and bruised skin, actually causing swelling, having to virtually undress every time you wanted to wash your hands etc) she took me seriously. Close examination showed that the locally made sleeve (two repairs in the first 7 days!) was really badly fitted, too tight in places and with a bottle neck. Severely critical conversation with her supplier. My therapist then changed to a German brand with a detachable "hand", much more careful measurement (my skin is very soft so it's easy to get it wrong) and I have never looked back. Arm is good, I am good!
It's not hot, even in really warm weather when you need it most, wears really well and was actually cheaper than the local effort.0 -
I actually have both an all in one and a two piece. The all in one definitely fits better than the 2 piece, so will mention that when I go today. Mine were made in Germany - Jobst I think. I was blessed with hereditary large bat wings in upper arms so they had to be custom fit ones lol. I have come to terms with getting them on, but I can tell you there were some tears and nasty words initially.1
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I hear you. I live in the tropics so you can imagine my response to the wearing of garments in the heat. I am lucky and can often wear a custom made one that goes to my elbow. There are times when I have to wear the long, but have two piece. Here is my tip. Get yourself some Hercules tough trial nitrile disposable gloves , or similar, gloves are blue, very flexible and a bit bigger so will slip over your gloves. I get them in Woolies. I have one permanently by my kitchen sink, one in bathroom etc. I wear them over my glove when cooking, washing up etc. can wash your hands (well the other one that got dirty) in them. They are a godsend and not nearly as heavy as rubber gloves. I reuse them in the kitchen.
It is nice to see lymphedema being discussed on here. It is often the forgotten side effect of this rotten diseas and one that nearly tipped me over the edge. Hang in there it does get better.
Paula xxxx1 -
Hi Ladies, thought I would jump in here - I am a "13 years after the fact" ! Yes @Afraser - you are right !
I had a mastectomy with auxillary node clearance in 2003 - never any problems with lymphedema. Vigilantly did my exercises to ensure that I would have complete use of my arm - had 15 lymph nodes removed.
Had my secondary bc diagnosis in 2015.
Lymphedema raised it's ugly head about 4 weeks ago.
Since then I have been seen a lymphedema massage physio for some sessions and good exercises along with a fitted compression sleeve.
After getting my head around the secondary bc diagnosis and radiotherapy following bone pain and a few niggling issues, things had just started to settle down - now this !!!
Hi @Andij- so frustrating given that you think you have some control back !
Go onto the Australian lymphedema therapy site and check on location for therapists. That's where I found mine or perhaps check with your GP and or physio.
All the best.
Regards
Sheryl
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As mum2jj and my therapist say, lymphoedema doesn't get much attention. I recently did a survey on cancer treatment side effects, through bcna, and it wasn't even mentioned. While lymph node transplants are being tried, but not always successful and more surgery, it's still not curable and yes, we"ll have it for life. So sorry, Share, no one deserves that little extra! I'm not too fussed by mine, it's well behaved but my wish to never have bc again is driven more by the fear of a 2nd lymphoedeic arm than by losing my other breast!0
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I've got a sleeve through lymphedivas. It it very light. Easy to put on and has the separate hand piece. I am lucky enough not to need it daily at this time. Just thought I would share.
https://www.lymphedivas.com/en/shop
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