Kidney cancer

Hi hamish56 and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

I’m Anne, one of the Community Champions here on the Online Community and I'm sorry to read that you've recently discovered that your wife's cancer has spread. It must have been shocking news to receive.

Although I'm not a member of this group, I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

While you're waiting for replies, it would be great if you could put something about your wife's diagnosis and treatment to date into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

Hi Hamish,

As Anne has said, I'm so sorry to hear this ... it is the news that I think we all dread, certainly I do.  Whilst I don't have any experience on this to share, I have read of others who have far exceeded the prognosis that they were given.  I don't know your wife's circumstances and so don't want to give false hope but I will replicate what I have read from others that new treatments can come up or she may respond better than expected.

Wishing you both all the best x

Hi Hamish56, sorry to hear your wife's problems.  I also have had a kidney removed, back in 2018.  My cancer returned in the form of a brain tumour.  I've also had immunotherapy, which initially reduced the tumour.  When the tumour started to grow again, I switched to Cabozantinib.  I have had fewer side effects and I've seen a good reduction in the tumour size.  I was given 1 to 2 years, and that was almost one year ago!

I still feel ok, so quite hard to take in.  Overall, good experience with Cabozantinib.

Best wishes.

Hi my wife has a rare form of kidney cancer hlrcc when first diagnosed  she was given  8months the only option  available  was immunotherapy that was 2 years ago we have just got  her in royalmarsden on the face of it she is doing fine she responded  well to treatment unfortunately  when diagnosed the cancer had spread but treatment is still keeping  it stable