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Lymphodema

9 REPLIES 9
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Re: Lymphodema

I find the sleeve doesn’t really help! I have now managed to request a mammogram ....but not able to get anyone to look at my armpit pain. I have had a lot of breast swelling, which I was told was caused by the radiotherapy. But that does seem to be improving!

Best thing I think is keep pushing for what you need ........

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Re: Lymphodema

Hi bluegeranium,

Apologies for not getting back to you sooner. I’ve been rather challenged by another radiotherapy effect- skin problems under the breast which are beginning to improve. Anyway I have been in touch with the Lymphodema specialist nurse who tried to help over the phone and sent me the arm garment. She said she was not allowed to see me in the present situation. But after wearing it for one day it caused swelling in the fingers. Two weeks later she is seeing me tomorrow morning at 8.00. Apparently only so many people are allowed in the building at once and cancer appointments start at 9.00, so I can go earlier. In our phone conversation today she hinted I might have some oedema in the breast too. Will be just relieved to see a professional in the flesh!
Good to hear that you feel your condition has improved. I do  all those exercises too.

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Re: Lymphodema

I have had lymphodema following radiotherapy.

I was referred to the clinic as I had lymph node clearance. This took a few weeks so not wanting to delay I googled other help and found that on YouTube there are some very nice videos by the Breast Cancer Haven for this. I mixed these exercises up with the ones I had for cording from the physio and worked out a routine for myself. 

The lympodema clinic put me on a machine and told me that I was fine, when I pointed out all the physical symptoms they agreed I had it in my arm and breast. They then gave me some massage exercises, and I resumed cycling and gardening.

All of these things along with some healing time during lockdown have helped to reduce my lymphodema. It can flare up if I am not careful, and I am always on the alert for patches of dry skin that could lead to cellulitis. 

I used to wear the sleeve but never for a whole day, I would put it on after exercises and take it off by lunchtime, working on the theory that my body had to find new ways to drain itself.

I find cycling is the best way to get physical and get the juices flowing. 

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Re: Lymphodema

Hi CureDars

Thanks for that link,  I will definately take a look. I did chat with my breast care nurse - she just told me to start doing the same exercises that I did after my op.  

Louise

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Re: Lymphodema

Louise,

Sorry to hear this. If you go to www.yoursurgeryandrehab.co.uk and click on lymphodoema you will find excellent demonstration videos. Doing something is better than nothing while caught up in this Covid world.

My other suggestion would be to speak to your Macmillan nurse. Perhaps you have.

Let us know how you get on.

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Re: Lymphodema

Thanks CureDars, mych appreciated.

I have rung the onc unit at my hospital to ask if they had an onc physio.  I was told yes.  Yet I never knew - no-one has ever told me!  All this time (since mid Feb)  I could have had help from the specialist physio, but it was never offered. I have now rung him, but the phone is never answered snd no-one returns my calls.  I guess he is not working at the moment due to covid.  I am so upset that so much time has been wasted without me being given any help.  I have found out much more here on two replies to my post - than I have found out from my onc and radio units in 4 months.

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Re: Lymphodema

Hi Louisefpage.

Missed your post last Monday. Coincidentally I rang the physio- lymphodoema specialist that day. It is 9 weeks since my full lymph removal, had done all exercising required but was reluctant to admit that there might be a problem. The physio was very helpful, asking me questions re symptoms. She said it sounded as if I have mild lymphodoema and would refer me. However, no clinics running at the moment. She advised me to do the creaming twice a day and the additional exercises on www.yoursurgery as suggested by another forum member. She also mentioned the pressure sleeve which could be sent to me if the problem continues.

Have you managed to find out anything else this week?

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Re: Lymphodema

Hi Jaybro

Thank you so much for your very helpful info, much appreciated.

Louise

 

 

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Re: Lymphodema

Hi

As far as I know, I haven’t had/got lymphodoema but I was seeing the oncology physio every two months before lockdown and maybe some of her good work has been undone! She told me I had early signs but her instructions were to refer patients to the lymphodoema clinic if there was more than a 15% increase. I presume she meant in the circumference of the arm. 

I have had full axillary clearance, which can leave the upper arm numb as well, so I have to firmly sweep each area of my upper arm several times from elbow to shoulder. I then sweep across to my sternum where there’s a healthy working lymph system. If my husband does it for me, he can sweep across my shoulder to my spine but I can’t reach that! When I’m sweeping the inner side of my arm, I then sweep down my ribs to the waist area.

My friend has had lymphodoema for 7 years and needs to wear a compression sleeve when doing exercises.

I guess the first thing to do is get a formal diagnosis. Then you will get a referral to the lymphodoema clinic once it’s back up and running and get something more helpful than ‘a few exercises.’ But maybe those few exercises are all you need, so long as you make them part of your daily routine. If you have been given the formal diagnosis, I’d advise you to ring whoever made the diagnosis and ask for more guidance. It’s better to act promptly and stop it developing into a serious problem.

Hope you get the answers you need x

 

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Lymphodema

Has anyone suffered wuth lymphodema after their bc treatment.  I have it following radiotherapy.  Just wondered what treatments ladies are being given for it.  I've only been given a few exercise.  Thanks Louise