Kidney cancer

A place for people affected by kidney cancer to support one another, ask questions, and share their experiences.

Anyone in the same boat as me?

Mcblondie11
Posted by

Hi there, my hubby (aged 40) was diagnosed with stage 4 RCC in June, we have 2 kids who are 11 and 14...is anyone here in a similar situation to me, with a young family and a young husband with a terminal diagnosis? Thanks 

buttercup01
Posted by

Hello there Mcblondie 11, welcome to the community n this group in particular.

First of all,  let me reassure u that having stage 4 kidney cancer is NOT a death sentence. Many folk in this group are stage 4 and are on various drug treatments.

So our cancer isn't curable, but IS treatable. There are new drugs being developed all the time too. Compared to other cancers, kidney cancer is a slow grower. 

I was first diagnosed when my son was 10. He's now 24  n I'm still here to tell u about it. I've been stage 4 since about 2008. ( See my profile for more details)

I even had a treatment break of 3.5 years n have only recently gone back on my meds.

Trust that gives u hope?

Sending big  hugs

Sue x

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
forgottenworks
Posted by

Hello 

I was 59 when my kidney cancer (stage 4 RCC) was discovered which, okay, is not young but neither do I consider it particularly old. I’m 18 months on from that, and my son is just now in his first few weeks at university. It’s a challenge whatever age we are. 

You haven’t given us much information regarding the extent of your husband’s disease. My first thought is, do you actually mean the word terminal. A comment that has stuck with me (although I have forgotten where I read it and so am unable to give credit) is that while stage 4 is generally incurable, it is only terminal once every form of treatment no longer works. 

As   has pointed out, our stage 4 may can be managed and there are new ways of controlling it coming along all the time. Kidney cancer research is an active field these days. As someone who has had surgery and RadioFrequency Ablation, and is likely to start drug treatment early next year (2 years on from diagnosis) buttercup01’s words certainly give *me* hope. 

Very best wishes to you and your husband and family, 

-Mark 

buttercup01
Posted by

Hi there  again Mcblondie. Would u mind putting a bit in your profile , so that ppl can see where you're coming from n  u don't have to keep repeating yourself?. Thanks.

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
Jo300
Posted by

Hiya

So sorry to hear of your husband's diagnosis. I know it must be very scary for you.

As the others have said my first thought was is he actually terminal, or incurable? They're very different things. Kidney cancer treatment is making massive, really massive headway at the moment. Do you have a treatment plan yet?

I'm stage 4. I was first diagnosed at 43 with stage 3, stage 4 at 46. My son was 11 the first time, 14 the second. He's now 17. I'm still on my first line of treatment (mets are in my breastbone, skull and a small lung nodule) and I am totally stable. I have at least another two lines to try once this one stops working. When I first went onto the drug I'm on, Pazopanib, my nurse told me that she has patients who had been on it and were still stable and well at 5 years - and that was as much as they could be, because that was as old as the drug was. Since then there have been new additions to the stable so we're really at the forefront of development at the moment.

The one thing that I would say, based on very recent experience is be careful with your 14 year old in particular. When I told Luke the second time round, despite me telling him that I was fine, that I wasn't dying, that I was treatable, he went off and googled - and read that I had three months - then lived in fear, without me knowing. He's only just admitted it.

I really hope that you get some reassurance from some of our stories.

Thinking of you all.

Jo
x
buttercup01
Posted by

Hi all, I'm inspired by who's been living with kidney cancer about 24 years

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
Jo300
Posted by

Buttercup01’s story first inspired me. I was so relieved when I first read it ( by the way Mrs, community champion.... nice work! Xx)

Jo
x
buttercup01
Posted by

Thank you .

Looks like I might  b rejoining the bright white straight hair gang, having just restarted on Pazopanib. Still, 3.5 years off it was good going!

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
Maybug
Posted by

I only found out I was stage four last year. Unlike many of you, I wasn’t being followed up at that point so the mets were discovered when I had symptoms. I’m guessing (although obviously I can’t know for sure) that I’d been stage four for quite a long time before that point. It’s not an easy road, but there are treatments that allow you to lead a relatively normal life. Incurable isn’t a great word, but it’s a heck of a lot better than terminal. I know you’ve just had shocking news Mcblondie and I wish you, your husband and children all the best. Keep in touch when you know what treatment he’s having because there’s sure to be someone on here who’s on the same one and can share experiences.