TME/LAR and lymphoedema

Hi Gemmary I am so sorry to hear of your current diagnosis. I’ve just read your profile. I can’t believe how much you’ve already been through. It’s really hard when you’re diagnosed with something they can’t cure. I know that doesn’t mean it’s not treatable, but we know there are less options. I’m waiting for molecular analysis results to see if I can be considered for a  different treatment to extend my life. Currently on capecitabine only. Sending you love and hugs. Keep safe and as well as possible.

So sorry to hear this. I too have started having swelling and tight aching feeling in my left leg after a right hemicolectomy and removal of only 15 nodes. I too was assured no risk of lymphedema afr this procedure. Waiting to speak to my colorectal team on Friday but not sure I will be believed.

So wrong that we are having to diagnose and fight the system for treatment ourselves.

Good luck to you Gemmary and thank you for posting.

Brunstyles

Hi, BrumStyle65 , sorry to hear this. Please make sure you get referred to the lymphoedema clinic and let them decide if it is or not. They are the experts, not colorectal!!! Or get your GP on side, as that is how I got referred in the end. Wishing you well. 

Hi Gemmary,  thank you yes my GP is my next port of call if the Colorectal Team wont transfer me to the Lymphoedema clinic.   I have also located a private  Lymphoedema Masseur that will come to see me if I can't get any joy from the NHS.  I don't want to delay start of treatment as I know that timing is really important with this issue.

I feel sad that this is just another side effect we have to deal with but hope that you are doing well now.

Best wishes

How did you get on, on Friday? Keep pushing!

Hi Gemmary 

So the GP isn't certain but didn't think it's Lymphedema, but if it is it is too early to do anything except monitor at the moment.

She sent me for blood tests to rule out cancer and other things I guess. The results are in and I will speak to GP next week. Apparently there is nothing to worry about from the results. So I will ask what the next stage will be.  The good news is the swelling symptom doesn't seem to be getting worse.

Hope you are improving and that you too will receive some good news soon. x

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.