Kidney removal

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I’ve had renal cancer for 2 years and been on immunotherapy for the past 18 months, but sadly it has stopped working for me. The cancer has spread out of my kidney to the surrounding lymph nodes. I have now been given 2 choices going forward and I’m after advice as I just don’t know what to do.

First choice is to go on Cabometyx to see if that will shrink the cancer or keep me stable. ( I have read about the awful side effects, which scare me)

my second choice offered is full kidney removal, lymph nodes and renal gland. I was shocked to be offered this as it’s the first time since I started my cancer journey.
I have incurable cancer so I know this is no cure and the cancer will probably come back and this is a major operation.

please can anyone tell me their circumstances if they’ve been through any of these choices or journeys.

I have a few days to decide and I just don’t know what to do!

Please help or give your opinions. BTW I’m 69 years old

Thankyou for taking the time to read my post.

sistermoon over 1 year ago

Hi Sanjo

I'm sorry to read that you have renal cancer and that the immunotherapy drugs have stopped working. The choices you have are like a rock and a hard place. I suppose the way to weigh it up is to consider your current health and which option you will be able to either get over, as in the surgery or to endure, as in the treatment. Do you have someone you could discuss it with, family? CNS? If this is not an option, can I suggest the Macmillan helpline, they are excellent and there is a speak to a nurse option as well. This is the link to contact https://www.macmillan.org.uk/about-us/contact-us

I do not have the same cancer as you so I hope you don't mind me responding. By responding this will place your post back at the top where it may be seen by more members of the kidney group. Hopefully they may be able to tell you their experiences. Best wishes to you for whichever option you decide.

A x

FormerMember over 1 year ago

Hello Sanyo, I've had the kidney cancer for over 4.5. Years, I had the kidney removed very early on , an a few tumours to boot.

my Oncologist put me on Cab, 60 mg to start with , yes I struggled, side effects are many. 6 Months ready to give up , they reduced the dose, scans reveals shrinkage to 45% to gone ,

kicker after all this time , its growing again, so off the Cabo and started drip feeding nivo,....... watch this space.

creams and potions to help the skin are many it's trial and error, to get what suits you.

any questions ask.

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