Surgery and Treatment.

Hi All. 

I'm new here so hello everyone. 

After being diagnosed with a rare type of Kidney Cancer last year November (Translocater), I had a full Nephroctomy last year December with 5 lymph nodes removed in the process.

One of the lymph nodes could not be removed as it's so close to my artery and the surgeons deem it a high risk operation.  It has since increased in size without spreading (5.2cms) and my treatment has switched from Nivomulab to Cabozantinib as Nivomulab has been unsuccessful. 

Has anyone been in the same or similar situation with successful treatment or surgery here or abroad. 

Very interested in hearing from you. Please help. 

Warm regards.

  • Hi there, I don't have any feedback for you I'm afraid, but replying to boost your post.  I hope you find someone.  

    • Hello Drew. Not sure if my experience can be of any use to you, but I was diagnosed with stage 4 kidney cancer back in May and began ipi/nivi immunotherapy in June. Had the first cycle which seemed to go ok then on the second cycle just after the treatment started I got a rumbling sensation and pain in my kidneys. So the treatment was stopped and I was given prednisolone and paracetamol and put back on the treatment which completed without further incident and I went home albeit feeling quite lethargic. When I got the pre 3rd cycle blood test result I was told get to hospital asap. Since then my cancer treatment has been put on hold and I had pretty horrendous kidney problems, peeing blood, blood clotting bladder blockages, extremely painful! Fluctuating Kidney function dialysis and blood transfusions.
    •       So please forgive me for coming across a bit down in the mouth right now as I've only just been told about the probable loss of my left kidney.. you mentioned Drew, about having a full nephroctomy. Does that mean surgery to remove the kidney. If so would you be so kind as to share your experience with me. I'm keen to know what I'm in for. How much pain is involved? How long to recover? Is it painful getting the stitches/clips removed afterwards?
    •       Sorry I've rambled on a bit here but I've just had this nasty news and wanted to get this off my chest. All the best Drew and whoever else reads this.
  • Hi Erchie, I had a radical nephrectomy ( the whole kidney removed) about 6 months ago. I had my wounds glued so only internal stitches-

    fFor me  the waiting was the worst part. To be honest I personally found the op no where near as bad as I thought it would be. My dad was admitted to hospital and I went to visit him 4 days after my op. 

    This whole kidney cancer situation comes as a huge shock to us all and so it’s really good you posting on here to talk with us all. 

    Take care and let us know how you are doing.

    Best wishes Jules x

  • Hi I have had my right kidney removed,and also and started with the same treatments as you immunotherapy treatment but that hasn’t worked , since then approximately a month ago I started taking cabometyx 60 mg tablet each day . It has difficult side effects sore hands   Tiredness, and diohrea . I have stage 4 cancer and this is palliative treatment , so hopefully this will extend my life 

  • Hi Drew 

    I have had a full Nephroctomy in November and as far as we know it went to plan I have had a few side effects but was ok to leave after 3 nights in the hospital I hope you get it sorted mate !

    All the best