Advice please inoperable Kidney Cancer

Dear Cclub,

 I know it Is not the best news to hear, try to keep your chin up and go to your appointment, they will tell you where you go from hear, there are so many new treatments out there to help people like us, I understand how hard it is but try to stay positive and stay strong, I wish the best for you but they will explain more to you at your appointment.

Take care and keep safe 

Dear Cclub. Definitely not great news. After 17 years cancer free my kidney cancer has returned caused by huge personal trauma last year. am just recovering from massive surgery to get out what they can. Told not curable which was such a shock but like you no time scale given. Not sure if that’s what I want to know anyway. Got aggressive radiotherapy starting in 2 weeks to try and get rid of some more. All palliative but hopefully stabilise the bloody thing. My heart goes out to you. I really hope that any treatment offered to you will bring you some hope and definitely help with any pain. My surgery has helped with my pain enormously already. I only had the op on 15th March, it involved actually cutting my throat and a huge vertical wound in my back. St first the back wound was so so painful but every day it’s getting better and better and I really wish this for you and everybody else out there. Take it easy and all the very best. Gooner xx

Thank you for reply I am sorry that you have gone through so much ..take care xx

Thank you Sandra ..I will see what they say . Keep safe xx

Hi Cclub - there's lots of us on here with kidney cancer, spread elsewhere.  Mine has spread to my lung.  I would find out where yours has spread to.  It's quite common for kidney cancer to hitch a lift in the blood stream and establish itself in the lungs, kidney, lymph nodes and bones are the main next organs, I believe.  

But I am a bit intrigued they are talking about radiology.  Radiology used to be the go-to treatment for kc 6+ years back.  They'd try it for 2 years and it was rarely successful.  Sometimes they use radiology to target the secondary cancer.    Today the popular choice is immunotherapy for kidney cancer.  I'd ask your consultant why radiology is appropriate for your cancer.    Chemo doesn't work on kc either.  Perhaps you have a very specific spread which makes these treatments ideal for you.  But they should be explaining why.

Have a look at my blog here and you will see that the strategy of delaying treatment was offered to me.   Sod that was my response!  

Are they going to do a biopsy - then they will know what type it is and this would help target treatment?  I'm ccRcc, the most common kidney cancer that 70% of people with kc have.  

There's lots of schools of thought about finding out how long you have left.  Once you know, you can't undo that knowledge.  Also, it's only advisory based on stats and experience.   It depends what kidney cancer you have.  I was told 5 years and 2 if I didn't have any treatment.  But there are new treatments coming available now that the stats are years behind with.  It takes 2-5 years for a trial to end and then obviously this takes a bit longer for these results to impact the survival stats.  Hoards of people on here are past their sell-by date.  

Errr . . . . I asked my urologist if it was going to be painful too!    I'd suggest you get a long list of questions for Tuesday and get all the info you need to make an informed decision.  Your consultant won't mind - it's their job.  You need to be onboard with the way ahead and not passive, cos this consultant is going to be with you for a few years.  You need that trust relationship.   

Thank you for reply ..yes after CT scan consultant said tumor on kidney crept into vein ..MRI followed and then biopsy ..latest appointment consultant said cancer was in lining of kidney and wasn't normal type or what they were expecting ..He suggested as not feeling ill at mo except for mild aches & pains that treatments may make me feel worse . The urology team have now passed me onto oncology for appointment tomorrow ..I have written some questions down and will also request a copy of cancer teams report xx