My Dad has RCC

Hi kaiser 1984.

I have had RCC for the past 14'years and have been stage 4 since at least 2013. I have had various mets in that time, incl a brain tumour (see profile for more info) but not one on my spine.

A lot of us in this group have cancer which isn't curable but is treatable. I'm currently on a treatment break from Pazopanib so can't help re the Cabozantinib tho I know others in this group are on it, so hopefully they'll reply to you..

It sounds as if there are a number of things your dad's not telling you, but if he doesn't want you  to go to his oncology appointment with him, you somehow need to respect his decision.

Kidney cancer is a slow grower compared with other cancers, so that's something to be glad about!

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Hi Buttercup01.

Thanks for your reply. I completely respect my Dads decision it would just to nice to ask questions direct from the professional as there are a number of things he didn’t know the answer to (likely to have gone over his head when he received his diagnosis which I understand).

The fact you have told me its slow growing and the tume you have been managing it makes me feel a bit better. So thank you for that and wish you well with your treatment.

Maybe u  could offer to go n take notes of any answers the oncologist gave to his questions? (My husband always goes with me n does just that)

Hi Kaiser1984

First if all - advanced doesn't mean a very long way down the road - it simply means the cancer has spread beyond the original site.

I have advanced RCC in my breastbone (also a little bit skull & lung, but I'm not concerned about those) - so bone related like your Dad. I'm on Pazopanib - so another "nib" like the treatment your Dad is being recommended. I've been on it for three years and I am totally stable.

I was told similar - it's a bit like how long is a piece of string. Until you're on the treatments and they can see your responses there's just no telling - but our drugs can be very successful and I'd say keep very hopeful.

Even if this one doesn't work, there are other lines to try and other types of therapy to try. I currently have three lines - Pazopanib is the first - and I'll stay on it for as long as it is working - then I'll move on and so on.

However today - I read about a new line that has been trialled in patients who had previously already been treated with three or even more lines - and it's been really successful - and brought me even more hope - https://www.kcsn.org.uk/esmo-2019-first-in-human-study-of-hif-2%ce%b1-inhibitor-in-patients-with-advanced-kidney-cancer/?fbclid=IwAR145FXLPUy7pCwBiJAac9NjHsYvl-1p8BJlya0057dLsceV3QSGlSRor4g

Is your Dad going to his appointments with someone? It's not ideal to go alone to be honest when you're getting new information. It doesn't all sink in.

Could you write your questions down and ask him to get you answers?

Generic questions - ask here, if we can help we will.

Keep hopeful though, there's no need to panic yet.