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Hi David I had a R/H nephrectomy in 2020 and afterwards they found that it had spread to my right lung, I’ve been on ipil/ nivo combo ( immunotherapy) every 4 weeks for the last 3 years which is working, the drugs they will give you treat the kidney cancer and should also sort the kidney cancer that has spread to your lungs, my treatment seemed to start a lot longer than I would wish for but once it starts you’ll hopefully get some good results , the treatment will hopefully reduce the tumour in your kidneys making any surgery easier. Everything is overwhelming tbh but you learn with time to accept it and get on with your life, I hope this helps you

Please feel free to message me me any further questions 

Hi David999

When my kidney cancer was found, it had already spread to several places, including the lungs.

Like you, I was hopeful that they would remove my kidney first, to stop it sending out any more cancer cells. It was explained to me that, as there were already 'active' cancer cells in my bloodstream or lymph system, that carrying out surgery could disturb these into action, and actually make the problem worse, with more secondaries developing.

Instead, the preferred course of action is to use immunotherapy treatment first, to shrink the tumours and also cause them to be 'dormant'. This makes any future surgery less risky, or not even necessary. Immunotherapy can keep the cancer under control for a long time, and in some cases, effect a cure. Surgery seems to be the 'go to' treatment for stage 1 and stage 2 kidney cancers, but not stages 3 and 4.

I had immunotherapy for a year, and stopped in July 23. My cancer has stayed stable, even though I no longer have treatment, and I feel really well. I do have 3 monthly scans to monitor this. My last one was in December, and I'm now waiting for the results. I'm not expecting anything to have changed!

Try not to worry too much whilst you wait for a treatment plan to start! I know it's difficult....but I'm sure your oncologist will suggest the best way to tackle this. Most kidney cancers are very slow-growing, so try not to panic!

I hope all goes well for you

hugs

Candysmum

Hi

I was advised that once it's spread it's too late for a nephrectomy and immunotherapy is now the preferred treatment.  

David999 said:

The radiologist said that they would treat the lung cancer first as if this didn’t work there would be no point removing the kidney.

What a weird thing for the radiologist to say!  If they treated the LC and it works, you've still got the primary cancer in the kidney waiting to spread again!  I would expect you to hear a different approach when you see oncology.  

I have RCC (KC) spread to the lung.  I went on ipilimumab and nivolumab in Jan 2022 - June 2024.  The lung metastases are no longer visible and the kidney tumour down to 23mm from 59mm.  

Before immunotherapy emerged as treatment for kidney cancer (c2015?) once it had spread then it used to be radiotherapy for a bit, didn't work, then the inevitable.  

I'm off to read what everyone else has said now.  Intrigued !

Good replies, eh!  We're all saying the same thing.  

Just something else occurred to me.  Once it's spread they generally do a biopsy so they can find out what cancer type it is.  Also to help determine the best treatment.  

I had a biopsy.  

Also with stage 1 and 2 KC, if they are going to take it out, then they often don't bother with a biopsy.  No point - they might as well get the histology afterwards.  Although I must say I do feel a bit uneasy if people are told "probably cancer, nephrectomy then biopsy, or wait-a-bit.  Imagine having a nephrectomy and then it turning out to be benign.  How annoying would that be.  I digress . . . . 

My blog is  here. btw.    

All the comments on here have helped greatly. This one in particular. Many thanks for replying and putting my mind at ease. 

Hello again David999

If you want to know more about the people posting here, you can read their profiles by clicking on their names. Not everyone fills in their profiles, but it does help to understand more about their cancer experience.

Keep posting! This waiting time is the worst, and having support from people on the forum can help keep the anxieties at bay!

xxx Candysmum