Metastatic Squamous Cell Carcinoma

Hi EmmyGremlin 

I can understand you wanting to talk to someone in a similar position as it sounds like you've been through a very tough time.

I've had a look through the group for anyone in a similar situation to yourself and found Penguin1806 has posted about their husband having his leg amputated above the knee and metastatic SCC a few months ago. I've 'tagged' them into my reply to you and hopefully they'll pop on to share experiences with you.

Wishing you all the best

Hi EmmyGremlin

I don't know if this will help, but I can share that my husband found lymphatic drainage massage (LDM) very useful. I had to find someone who did this privately as apparently the NHS (or at least our local hospital) say that there is no clinical benefit to LDM so don't offer it.  

I found someone privately because my husband had a CT scan following progression to his pelvis but that wasn't clear enough so they tried a MRI scan and weren't sure about that image either.  This was because his residual leg was swollen and also he could not get it flat when he lay down.

Basically, because he had the lymph nodes in his groin removed at the same time as his amputation and then the cancer was in the lymph nodes in his pelvis,  his whole "drainage system" on that side was shot and needed some help.  It worked by clearing the lymph nodes from the head down, a gentle massage technique to essentially channel the lymph up to the cleared nodes that worked and then clearing those again.  

We also got a referral to the lymohodoema clinic who could help with compression garments although they also said that the prosthetic team (at a different hospital for us) should be able to assist with compression garments.

Kinesiology tape was also useful because that encourages movement of lymph when you are perhaps more sedentary than usual when you can't use your prosthesis or perhaps move as much as usual if your residual leg/pelvic area if painful.  

I don't know if this helps or not but feel free to message me here or privately if I can help more.  EmmyGremlin  latchbrook 

Thank you so much for taking the time to search for simular cases. I'll have a read as the lady just posted, thank you 

Thank yo7 so much for this. I will phone the clinic on Monday to see if they offer this and then try Buap if they offer this also as I have some cover through work for private stuff. I've Neen massaging myself and wear a shri ker but the immunotherapy has effected  it so much, my residual limb is rock hard swollen. My Oncology tram said they should start to see results over next few week so hopefully will go down also.

Hope is all OK with your husband

Thank you so much

Emma x