Lymphoedema after LAR /TME for rectal cancer

  • 9 replies
  • 6 subscribers
  • 1070 views

Just putting a marker out in case anyone else is looking. This is probably an overlooked cause, as the collectoral team said it wouldn't happen.

However, the diagnosis is confirmed. Luckily caught early, so prognosis is good, treatable but not curable. Exercises, simple lymphatic drainage, SLD, massage and support socks. I guess these are now for life, and is something I didn't want, but will have to get used to. 

Around if anyone similar wants some support, but I will say, GET CHECKED SOONER RATHER THAN LATER. 

  • Thanks for taking the time to share your experience.

    Community Champion Badge

     "Never regret a day in your life, good days give you happiness, bad days give you experience"

  • Update

    Socks arrived on Sat, so have been wearing them for 5 days now. Thoughts are they are comfier than operation socks, as was promised!!! More to the point they work!! Once you get over the 'how am I going to get that on my legs' as they seem so small, and worked out how best to get them over your heel, they are fine. At the moment there is a tendency to not elevate quite as much as before, but I have been trying to get on with life. Only criticism would be the size of the foot as I'm forever pulling at the toes to get more room, particularly on the foot that had a minor op recently and still has a protective dressing on the big toe.

    So, thanks lymphoedema team, I'm grateful.

    Question for any experts. My blood pressure was quite low today (no white coat syndrome!!!). Is this a side effect of wearing the socks? Will ask the Trial team next week in case they know. 

  • Update, Dec 23

    Had a 3m checkup, all well. Legs are responding to the socks! So grateful to the GP for referring me. I found a silicon toe spacer that works wonders on the foot with a bunion, to keep the big toe straighter. It was getting cramped over with the pressure of the socks.

    Happy Christmas everyone 

  • Hi, just come across your post, I found the closed toe socks painful on my toes so when I was measured up for new ones I asked for open toe ones, they are much more comfortable.

    Diane

  • Hi,  , I also bought some open toe socks, but then had issues with the edge of the sock causing rubbing/blisters on the little toes. The silicon spacer is definitely working on the one foot, and I'm getting more used to the socks in general. I was advised not to use the open toe ones if I could help it, hence the perseverance with the closed toe ones.

    Glad you solved your problem though.

  • Hi Gemmary, 

    Thank you very much for sharing your experience. I can definitely identify with your experience of compression stockings, and how important it is to get a referral. I have been using these for many years now. Please feel free to ask any questions around lymphoedema and associated symptoms. I’m happy to answer if I can. Take care, Rachel 

  • Hi Diane1951,

    Thank you for sharing your experience. I have a couple of questions, if you don’t mind: how much do you pay to buy stockings, and are they available over the counter from a pharmacy in your area? Also, would you mind clarifying how the silicone spacers work - it’s something I’d like to know more about. 

    I sometimes wear something that is called a “toe cap”, on my foot, as well as a stocking. These can rub/chaff as well. If your nurse measures your foot size carefully, then either the closed toe or open ones shouldn’t hurt - but I hear what you say. 


    Take care, 

    Rachel 

  • Hi, I don't pay for my stockings, I get them on the NHS. There is a lymphoedema nurse at my local hospital and I see her every 6 months. She measures my leg (I only need one stocking) and a new stocking is delivered to me after a couple of weeks. I have an open toe stocking, I don't use a toe spacer so I can't help you with that I'm afraid.

    Diane

  • Thank you - your experience sounds similar to mine. I wasn’t actually looking for help, but wishing you all the best.