Lymphodema Help

  • 2 replies
  • 50 subscribers
  • 139 views

Hi Survivors. 

I am 10+ years since my Ivor Lewis Surgery and still here, which is amazing.

I had 28 lymph nodes removed during my curative surgery. Apart from now having Lymphocitic Colitis, I am doing fine, being 63yo and all and working full time, active and, 4 years to rwtirement

I do have some concerns just now. I have a swollen upper stomach and have started to wheeze a bit and my heart rate is heightened etc. My gp does the usual, bloods and doesn't even gbtm with results.

I think I have an issue with lymphodema, in my chest cavity, plus I think that, as I can eat a normal mea size noe, l that My stomach has grown/stretched and may now be causing issues within its proximity to mylungs, diaphram and heart.

I noted some studies 2019 are indicating the Ivor lewis procedure may cause issues with lymphodema, especially as I have survived to 10 Years and this is now a known issue.

How do I stop my GP going down the bloods route and take this serious as It is getting worse and impacting on my quality of life.

Any advice appreciated. 

Eddie

  • Hi Eddie. What an encouragement you are to all of us! Just great to read your background story. If it were me and had similar worries I would be getting in contact with the nurse practioner at the Upper GI department where you had your operation. You may be currently out of contact but this should not matter. This I am sure will give some urgency to addressing your concerns. I hope you get this resolved soon. 

  • Eddie contact the GI nurses at the hospital you had treatment at. Big hugs Pray