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Lymphoedema 18 years after mastectomy

(7 Posts)
Midnightblue Sat 16-Sep-23 15:48:58

As above I developed lymphedema in my arm on the mastectomy side a few weeks ago.

I saw the lymphedema specialist physio yesterday. She was lovely, did all the measurements and went through the skin care, massage and exercises. She said she would “100%” recommend a compression sleeve and gauntlet.

I was a bit surprised, but she went through all the details with me and I felt ok about it when I was with her, but when I got home I felt quite upset. I couldn’t do a task I’d set myself at home, I was shaking so much, and my stomach churns when I think about it.

I am worried about the practicalities of it, especially washing my hands. It will have separate fingers up to my knuckle.
Using rubber gloves for housework and washing up is easy as is wearing those disposable blue gloves for cooking.

The silly thing is, I went to the hospice cafe after the appointment and managed to get jam on my hands, so just went and washed them. With a sleeve on I couldn’t have done that.
I can see myself not wanting to eat out or just have a casual coffee out, or even wearing a disposable glove when eating at home. I’ll wash it every day of course, but it’s till nagging at me.

I know these sleeves are common enough, and plenty of GNs must have them. How did you get used to them and get used to the practicalities?

I’m also a bit down about having to wear one for the rest of my life. I feel a bit of a wimp as well.

HelterSkelter1 Sat 16-Sep-23 17:10:14

I can sympathise with how you are feeling. Before I had chemo and as a side effect of my cancer and anaemia symptoms I had very swollen ankles and simply hated the compression long socks I was prescribed. Once chemo started my ankles went back to normal. Is it a late side effect of radiotherapy which has caused yours?

Lymphodoema will be a possibility for me as well in the future and I will feel like you do.
Is it essential to have the sleeve and gauntlet? Did she say what would happen if you did not? I know nothing about it all, but send you my sympathies. I am sure you will get some helpful answers.

rosie1959 Sat 16-Sep-23 17:18:53

My husband has lymphadema and he wears knee high socks every day they usually come off around 4pm so he has never worn them full time .
If you asked surely it would be possible to have one from your wrist and to leave it off if you are going out in the evening.
My husband is very used to them now even though they can be very uncomfortable in hot weather.
He prefers the made to measure version and some are actually quite thin although he finds they are not as good.

mrsgreenfingers56 Sat 16-Sep-23 17:21:36

Welcome to the club nobody wants membership of. I really do understand as I developed Lymphodoema in my arm after my mastectomy. Yes, the sleeve get very grubby and can easily get through 3 in a day.

But you will be surprised how well they wash actually on your arm, so with the jam you got on it just wash the jam off with soap. OK I know the sleeve will be wet but soons dries.

Get as many as you can from the breast cancer team.

I am afraid one of the side effects after breast surgery and I swear my leg on that side has swelling as well as shoes always seem tight on that foot.

But at the end of the day I know it is a pain but your aim is to stay healthy and cancer free and for a special occassion you can always take the sleeve off. I have been told must always wear for flying.

I am sorry you are going through this, far from pleasant and very stressful but here I am cancer free after 14 years and I literally thank God, the NHS and family for their help.

Be kind to yourself at this moment as I think the sleeve is a constant reminder of what you have gone through.

My very good wishes to you.

Welcome to send me a private message.

crazyH Sat 16-Sep-23 17:23:09

I had to use compression stockings, following my breast operation (cyst). I live on my own, so my lovely neighbour came daily to put it on for me and then remove

Sparklefizz Sat 16-Sep-23 17:24:02

I'm so sorry to hear this Midnightblue. What a shock for you.

I had lymphoedema straight after my mastectomy which lasted for about 18 months. My husband was taught lymph massage and I also had an electric massager so that I could use that in between.

My compression sleeve went from wrist to shoulder - it didn't extend beyond the wrist, and frankly I could not have managed to get it on by myself as it was so tight.

I was told nothing about the skin care you mention or about wearing gloves, although I always wear gloves for washing up and household tasks anyway.

This was 25 years ago so treatment may have changed since then.

Sending you my best wishes and flowers

Midnightblue Sat 16-Sep-23 18:59:26

Thanks for all your lovely replies.

It isn’t related to radiotherapy, it just came out of the blue.
I do have to have the gauntlet as well as my hand is slightly swollen too.

The physio did say I could take it off for special occasions, just wear it for as many hours as I can on those days. So I’ll do that.

Thanks about the tip for still being able to wash ‘accidents’’ off while I’m wearing the sleeve.

I can only have 2 of them, one to wash and one to wear, and the prescription is only 6 monthly, so I’ll just have to see how
I get on. At least I don’t have a child’s nappies to change!

Like your husband rosie I expect I’ll get used to it.

The physio recommended using a gardening glove to help smooth it out whilst putting it on, so I think I’ll manage that bit ok.

I asked what to do if my swelling goes completely, the physio said to carry on with the sleeve to prevent the lymphoedema returning.

Like you mrsgreenfingers I’m glad to be here after so long and no active cancer. I just thought it was all finished with.

I’m going to go off-line now as I’m going out. Thanks again all.