Struggling with options.

Hi,

I had a Radical open nephrectomy, if you continue down the nephrectomy path, you should just have keyhole surgery, If that is the way you want to go the waiting list could be a long one, I believe the ablation path may be quicker and you keep your kidney, this is preferable if the option is available, having the kidney removed reduces your options should you require further treatment. think about it carefully. good luck

Hi

Sorry you've found yourself here - but I hope you find lots of support.

I had an immediate response to your post, based on my own experience, but before jumping in with two feet I hope I can ask you a couple of questions?

In your own research - what was it that changed your mind from the ablation to the nephrectomy? One particular thing? Several things? Was it based solely on facts, or also on your gut feeling?

Why is the surgeon still advocating the ablation rather than the nephrectomy?

And actually reading your post again, I think those questions might be irrelevant - as that's not what your asking - your asking how to get them to respect your decision, because you're not shifting from it, is that right?

Sorry - more than a couple of questions there!

Hi, 

My uncle had an Ablation done, but it came back in the same place - sadly it also spread to his bones then his brain and he died. So this has played a lot in my parents minds, especially my dad as it was his brother. Had he of had a nephrectomy instead - would it of been a different scenario, I guess we won't know. 

I mentioned my fears to my Urologist and he says that's fine we can do the Ablation many times if it comes back- I don't want to do this many times. 

I have read there is a possibility it can come back, I understand it may not but it worries me. I also know that it can come back with a nephrectomy too.. But I feel there is less chance at this moment in time.

I'm in my mid 40s - I understand the Ablation is a lot less invasive but I just can't get my head around it. Currently my cancer is small, contained - most recent scan was 3 weeks ago. 

I'm not sure why he's still advocating the Ablation, we seem to be going round in circles. 

Hi purpleK

I am a lot older than you. 66. I had a radical nephrectomy by key hole a year ago. I was given the choice to watch and wait and treat if it spreads or a nephrectomy. I didn’t have the option of an ablation. I was adamant that I wanted the kidney removed as like you I felt it was best gone along with it’s tumour. Don’t underestimate the operation. I did! It’s a very major operation, is a painful operation and takes time to recover! Even a year on my side let’s me know when I’ve done too much. Good luck with whatever you decide.

Hi , is there anyone else u can discuss this with, eg another surgeon?

It seems to me the current one has his heart set on ablation, whereas u may not want this or at least need more info to help  u decide.

I had my op 14.5 years ago n wasn't given an option at all. It was a large tumour so they did it by open surgery. As Jane says, it is major surgery, so not to be taken lightly. I. The other hand, u don't want the possibility of umpteen ablations to come...

Not really helped, have ?! 

Thank you for your replies. 

I think I'm going to stand my ground with this, it's just finding the courage? to do so. I'm actually hoping the surgeon I've been referred to doesnt question me and my decision.. thinking I need to take along someone for support. 

Definitely stand your ground n definitely take someone for support n also to take notes of discussion..

Do u have a cancer nurse specialist?

If u do, having them along may help?

Thank you Buttercup01

No, I've not been given anyone like that to speak to. 

Hi

So my initial thought was id want the nephrectomy too. I had mine 5 years ago by key hole, I suspect at a similar age, I’d just turned 44. I wasn’t given other options, but I know I wouldn’t have wanted to take the risk. When I had the nephrectomy I was told that it could potentially be an actual cure. Unfortunately it wasn’t for me as I already had a small spread, but so far it has been for a friend of mine who has now been clear for 7 years 

if you can have someone with you to support you that would be great, I’d recommend that regardless of the situation to be honest. 

But in your situation I'd probably just say, if queried again, this is my final decision, please respect it, I do not want any further conversation regarding my choice.  Basically polite but very firm. 

It’s your body and both your physical and importantly your mental health are yours to protect as you see fit.

lots of luck to you  

Thank you Jo300

You are right, I need support - my husband has assured that he will be with me and will back me 100% as he too, now hes looked into it would rather have the nephrectomy. 

I feel it's all I can think about lately, and the issues with the doctors are just the icing on the cake really.. I'm usually a pretty strong person but this is is beating me hands down. 

I should hopefully see the surgeon next week, I'll report back with what happens.