Forum Discussion
Lymphoedema and recurrence fears
Hello everyone. It has been ages since I have posted. Since this site was re done I no longer got notifications, then 2 major surgeries in 2016 and life kind of took over.
I was diagnosed with Lymphoedema about 8 weeks ago. Everthing was going along swimmingly. I had lymphoedema but only to a fairly minor degree then one morning about 8 weeks ago woke with a swollen hand and arm. Such a shock. So have had the intensive therapy with the bandages and now have a compression sleeve which just keeps the lymphedema controlled to a point. My struggle is that I was just being able to move on after treatment and surgeries, then this. The constant reminder every day is there now and am really struggling. Is there anyone else in a similar situation?
I was diagnosed with Lymphoedema about 8 weeks ago. Everthing was going along swimmingly. I had lymphoedema but only to a fairly minor degree then one morning about 8 weeks ago woke with a swollen hand and arm. Such a shock. So have had the intensive therapy with the bandages and now have a compression sleeve which just keeps the lymphedema controlled to a point. My struggle is that I was just being able to move on after treatment and surgeries, then this. The constant reminder every day is there now and am really struggling. Is there anyone else in a similar situation?
64 Replies
Thank you. down the track I may well give them a try. I love the look of their sleeves. For now I will just do what I am told and get this hopefully under control xoprimek said: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
So very sorry to hear of your return Sheryl. Our biggest fear which for you has been realised:( Seems to be when it hits you, just when you think you are getting the hang of this new normal doesn't it. I do have a private lymphoedema therapist I was going to but even with a GP's Health Care plan it was costing $55 a visit plus is right out the other side of Brisbane, so ended up doing therapy now through the public system.Share said: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
I so hope you are coping okay and that everything will be alright for you xox
Thank you for the gloves hint Paula. I have tried a couple and keep ripping the top of them off trying to get them on - rather annoying lol. OT Physio said today to give myself a break, as I am still in the adjustment phase. I will get better I know. Just have to accept it.mum2jj said: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 xxxx
Andi xo- Those are fantastic, I love patterned hose, a patterned arm is even better! Will discuss with my therapist next appt. Many thanks!
- 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 - 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!
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
- 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 xxxx - 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.
- 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.
