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


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

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?

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.