Had an assessment today and was fitted with a sleeve for mild lymph-oedema, am naturally upset but trying hard to be positive and consoling myself as in the scheme of things have been through worse over last two years. I only had 9 nodes removed 2 1/2 years ago following radical mastectomy and DIEP recon 1 year ago and thought I had cracked it!!!
Please could someone advice me, I wore the sleeve for 4 hours today and then had to take off as it felt so tight and my fingers seemed to swell, is this normal. My arm is 2cm larger at the top and I have a couple of lumps on inner forearm where a slight build of fluid had settled. If I wear the sleeve is this likely to disappear, I cant remember what the BC nurse said as I was trying hard not to cry and be brave!!
I cannot really offer any tips at this stage having only just developed lymphodema myself in the last week I think. I too was fitted with a sleeve yesterday so I know how it feels.
This is just to say I sympathise. You will find good advice on this site and good support. Lymphodema is a lifetime risk and the more lymph nodes you have removed the greater the risk and even with a small number removed there is still a risk. As I found you can do all the right things and still get it. It seems to be a lottery like everything.
In addition to the helpful advice you will have here, the following link will take you to a publication which you may find helpful to read, it contains information about lymphoedema after treatments for breast cancer:
Please feel free to contact our specialist nurses if you would like to talk things through, please call our helpline on 0808 800 6000 weekdays 9-5 and Sat 9-2.
Hi Clare,
Funny how we want to cry over what is a non life threatening condition. I went through chemo mastectomy and rads attacking each phase of my treatment like a bushwacker trial!!
I refused to get upset or morbid, however, four weeks after surgery my arm started to swell and I was absolutely devastated!! It still doesn`t make sense to me that a non life threatening condition had such an effect, I also could and still can feel the tears threatening to come every time I mention it.
However I have a great lymphoedema nurse who is gradually sorting me out, I wear my sleeve all the time and have really got used to it, Funnily enough we just got back from holiday in Tenerife and I saw two ladies wearing sleeves on the first day, my husband said I had started a new fashion trend!! We all became friends very quickly!!
My hand was swelling when wearing sleeve and nurse changed my sleeve to one which also covers hand up to fingers. She explained if sleeve pushing fluid into hand needed compression on hand otherwise its further problems. Must admit hand hasn’t swollen since changed sleeve, and it has helped.
Toronto - how did you cope with the heat whilst wearing your sleeve.
Sorry forgot to say to Clare my arm seems to have areas of fluid that come and go I think this is as fluid shifts when wearing sleeve and also doing the exercises and massage. My worst swelling is round the elbow and some days my arm looks more swollen than others. My arm has recently reduced from 33% to 25% but just had Cellulitis and this has b******d things up, but hopefully will reduce again.
It is trial and error getting the correct sleeve.My first sleeve was too tight, my hand went blue couldnt wear it. Its really good you have a follow up appointment so soon I had to wait 8 weeks, which meant my arm had considerably increased by the time I went back.
Sorry you’ve had to join our club, but I’ve found great support and advice on this site. Let us kbow how you go.
If your sleeve is making your fingers swell, don’t wear it - there is something not right somewhere. It could be the wrong size, wrong compression, or have a faulty pressure gradient. It is not normal for your fingers to swell more when wearing a sleeve - you need to get a properly fitting one - get an appt asap - a badly fitting sleeve will achieve nothing and may make matters worse. It sounds as tho’ it is too tight? Lynni is right, it can take a few goes before you get the right one.
Hi Toronto - hope you had a great holiday?
Anyone who thinks they shouldn’t be blubbing over a diagnosis of lymphoedema is wrong. It’s the pits, it’s incurable, it’s obvious, it’s painful. IT’S UNFAIR. I’ve shed more tears over it than bc - and willl continue to do so.
Thanks everyone for your replies - today I spoke to the Lymphoedema Nurse at the local hospice and explained I was not happy with the fit and brief explanation of how to do the simple lymphatic drainage, she said I needed a referral from either the Gp or BC nurse, I phoned the GP and he is happy to send letter to the Hospice to get a appt, phoned back again and have appt for 12th Jan to see the specialist. I know its not the correct way but sometimes you have to push to get what you want. I feel happy today and know I am doing everything possible to help myself, I really want to make sure the lymphoedema stays at the mild stage. Today I had my yearly appt at the Oncology clinic, when looking around at the other ladies there were a lot in a far worse situation than me and this made me think that life is pretty shitty and we all have our problems but mine didnt seem quite so bad as they did yesterday.
We had a wonderful holiday in Tenerife, we stayed in a very untouristy village, so peaceful, just what the doctor ordered!! Ate and drank far too much but thats another story!!!
My only problem was, during the flight I wore my sleeve and seperate glove and my arm and hand were killing me…just so painful, it happened on the return flight as well. I know you have travelled extensively and wondered if you had, had the same problems?
Lynni,
No problem with the heat, just wish I was back there!!
You’ve got the right result which is another appt asap. You’ve got to put yourself first with lymphoedema and by-pass the ‘official’ channels, if need be, to get seen reasonably quickly. Who provided the sleeve you have now - the bc nurse or the clinic?
Hi Toronto
So glad you had a great time - I think the Canaries are lovely in the winter. Did your hand and arm swell on the flight, or were they just very painful? I think aeroplane armrests are hard on lymphoedema arms (they’ve made mine ache in the past), especially in those cramped conditions - I always try to take a small pillow or towel with me to make them more comfortable now.
The sleeve was provided by the BC nurse, not very confident in their management of lymphoedema so thats why I bypassed the system and went to the specialist nurse/physio. Its still making my arm feel cold and fingers slightly puffy, not sure if I should wear or not?
I don’t think you should wear it if it is making your fingers swell - the fluid isn’t moving in the right direction. Good for you for getting an appt at the right place. The system where you are sounds like the one where I used to live - bc nurses were expected to deal with the ‘not that bads’ themselves but pass the difficult ones on to the lymphoedema clinic. Not a very satisfactory solution, I feel.
I’ve had some rather tight sleeves in the past - I’ve manged to loosen them a little by giving them a couple of washes at low temperature (but reasonably high spin speed) in the washing machine (I usually hand wash mine). By the way, I’ve no idea whether this is recommended practice, but it seemed to work for me!
Also, with a new sleeve, I sometimes don’t wear them all day until they are ‘broken in’ - I’ll go back to an old one (or not bother) in the evening. This is your first one, of course, so if you decide you do want to persevere with it until you are seen at the lymphoedema clinic, perhaps you could try wearing it for less time, perhaps taking it off when you are watching TV, reading or something in the evening, or just having a break from it half way thro’ the day? Do your fingers swell up very quickly when you are wearing it, or does it take some time?
Thanks Bahons (sorry dont know your christian name)
The swelling in fingers happens quite quick and they look more pink than normal hand!!! Your advice reassures me regarding the tightness. I am a great believer in listening to others in the same boat who experience similar problems.
Just had a couple more thoughts…there is a brilliant new lymphoedema website called ‘stepup-speakout’ dot org, where you can see pictures of what a well (and badly) fitted sleeve should look like.
Also, if you like swimming, it’s very good for lymphoedema, but you need to take it gently at first.