lymphoedema - help
lymphoedema - help Hi I posted last week about a pain and some swelling in my arm. I rang Breast care nurse who got me an appointment on Saturday with breast surgeon who agreed it was lymphoedema. As by then it was improving he advised me to bandage with a crepe bandage to speed up the improvement and contact him if it hadn’t gone in 3 weeks.
But the bandage seems to be making my hand swell. Breast care nurse now on sick leave so there is no- one i can ask. Do i stick with the bandage or not. Anyone got any ideas of how i can improve things.
I’m also worried because i’ve heard my insurance company may not fund any treatment for Manual Lymphatic Drainage. I can’t afford to pay for it privately. (My private insurance is paid temporarily for me by my husband’s last employer out of guilt for making him redundant just as i was diagnosed!) Is it possible to have it on the NHS and how do i go about this?
I’m wishing i was NHS at the moment as i could ring the hospital where there’s a team of breast care nurses and people trained in lymphoedema.
Hope someone can help. I’ve started back at work this week and i’m struggling already.
Kelley
Lymphoedema Hi Kelley
Hopefully you will receive replies from other users on this topic, in the meantime can we suggest that you see your GP as soon as possible, he/she will be able to refer you to an NHS Breast Care Nurse, if that is appropriate for you. We have also found this information about the Lymphoedema Support Network, their contact number is: 020 7351 4480. Alternatively, you are very welcome to email our Ask The Nurse service and, or call the freephone helpline number on 0808 800 6000 Monday to Friday 9-5 and Saturday 9-2.
Best wishes
BCC Host
Lymphoedema Kelley,
have you got a breast care centre at your local hospital? If so, it would be worth phoning them direct to see if you can get an appointment with an NHS Breast Care Nurse this week.
Thanks Daphne & BCC I took the advice and saw my GP this morning. She was surprised i hadn’t been refered already by my consultant to the lymphoedema clinic run in the city. I didn’t know anything about it. She faxed the referral through straight away so hopefully i’ll hear soon. Hopefully, then i’ll have someone i can contact.
I am rather down at the idea of having Lymphoema. I knew i was at a higher risk as i’d had clearance and RT but i thought i’d got away with it. I’m also upset that i’ve had to stop playing badminton - its the only exercise i find enjoyable. The idea of having a horribly swollen arm aswell as no hair and one breast really upsets me. Still, let’s hope it can be sorted out.
Thanks again
Kelley
— Hi Kelly. I know how miserable lymph can be especially on top of all the other problems you’ve been through, but it is something that you can cope with and learn to adjust to.
The most irritating thing is how all the clothes now have skinny arms and I’ve got one fat one!
It can be achy and painful at times, and not look as nice as you might like, but you’re still here! After three turns at BC I think lymph is really quite small price to pay, although at times I could cry and wish someone would just chop off my left arm.
Cheer up, you’re not alone. The lymph clinic should be able to sort you out with some sleeves and good advice (and the sleeve helps to keep you extra warm inthe winter). Something good to come out of everything.
All the best, and let us know how you get on. Best wishes Pat
Swelling in arms and legs My wife had a modified radical mastectomy in June and then chemotherapy with FEC and Taxotere. She is just finishing her course of radiotherapy.
In December, 2 weeks after the last Taxotere, she started getting swelling. It is in her right arm (the side where she had her surgery) and also her legs, torso, and face.
We have heard that Taxotere can cause this but our real fear is lymphoedema - she is an artist and dreads not being able to use her tools.
Has anyone else had swelling like this, and did it go away ?
Thanks
Doug
Hi Doug I am sorry to read that your wife and you are having such a tough time.
Has your wife’s breast care team seen and assessed the swelling she is having?
The genralized swelling you describe does sound most likely due to chemo, but it is always best to have it checked out by the doctor.
Any way I hope this helps, and I am sure you will have more responses to your post soon from other forum memebers.
Best wishes
BCC Host
—SWELLING --Hello Doug
I had 4xEC followed by 4xTAXOL .
I had swollen hands -both sides -and lower legs/feet when I finished Chemo. This was not the same as lymphodema as such ,as it came and went over the day without my having to do much about it. I did notice that my ankles swelled greatly after I had sat for some time on a hard chair ( kitchen table gossip sessions!) for example ,but I took steps to prevent this happening again by moving my feet and ankles much as you do on a plane.
First thing in the morning my hands are quite swollen so I also do stretching exercises every morning before I get out of bed.This has become so part of my routine I dont even think about it .
I also notice that my hands swell if Ive done too much of any one activity - typing/carrying heavy bags etc. Im learning slowly to behave myself and do as Im told - not to mention letting others do repetitive things for me.
So thats an area you can help your wife with.
However we are all different and react differently to the various treatments we have gone through. Therefore I would urge your wife to get a referral (if necessary) from her breast care nurse to a lymphodema clinic/nurse. Only careful examination over time will tell if she has the beginnings of lymphodema or not. Its much better to go early and catch it before it starts. Possibly all she will need is to have some massage strokes shown to her and maybe be fitted with a sleeve .
Im sure she will be fine once she has talked it over with a doctor/nurse and she can find ways to help herself prevent it happening.
What is her area of artistry may I ask?
Wynn
— Thanks for the reply.
I did a bit of research and managed to convince her that the swelling is most likely chemo-related.
She is being referred to have it checked out, so we will know by then. Unfortunately there are no set deadlines for recovery , it could be one month or it could be more. I think the uncertainty over exactly when things will improve is almost worse than anything else.
Her area of artistry at the moment is sculpture, she is never happier than when beating the life out of some unsuspecting lump of wood or metal and she is worried that the heavy manual activity could cause problems.
— Hi Kelley
Thanks for your response, the breast care nurse reffered me to the lymphodema clinic, but after seeing her I had my six month check up with my Oncologist. She has booked me in for a CT scan . Which I have next Thursday, just to ensure there is nothing else going on. Hope your arm is improving.
Jayray.
lymphoedema -Hi kelly—was so pleased to see your post–I am having radiotherapy now and started swelling in affected side (had a rt mastectomy in Nov) before the treatment —and have been told it may get worse!! Hate the thought ,it has been my big dread as my mother had bc and had very big arm however that was years ago and there is much more help now. I have been referred to Lymphoedema Clinic for later after finish of treatment. Best wishes to you.