Kidney cancer

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

Struggling with options.

PurpleK
Posted by

Hi, new here..

I was diagnosed with a small tumour on my left kidney after a scan for another issue, 3 months ago. On diagnosis I was given 3 options and was expected to decide there and then.. 

Wait and see, Ablation and Nephrectomy. 

I didn't feel I was given enough time to think about my options so decided on the Ablation as I felt I was being coerced into that by the consultant and my husband. 

I walked away, spoke to my family and friends, did a lot of research and decided I would rather have a nephrectomy (please dont judge). 

Now when I contacted my Urologists secretary to inform them of my decision I was told that was fine and a referral will be made to the surgeon performing the op! Now fast forward a few weeks and I had another appt with my urologist again and he's still trying to persuade me to go with the Ablation. I stood my ground and finally he has referred me but he made it clear that they will continue to try and change my mind...??? 

Why can't they just accept my decision?! If this wasn't such a serious thing I feel I'd rather just walk away and leave it. I really don't want to have to battle to do what's right for me. 

What can I do? 

Ollie22
Posted by

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

Stuff you cancer, you are not going to beat me !!
Jo300
Posted by

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!

Jo
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PurpleK
Posted by

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. 

Joncol
Posted by

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.

Jane
buttercup01
Posted by

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 ?! 

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

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. 

buttercup01
Posted by

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?

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

Thank you Buttercup01

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

Jo300
Posted by

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  

Jo
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PurpleK
Posted by

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. 

buttercup01
Posted by

Hear, hear

Sue

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
buttercup01
Posted by

Hi @ Purple K,Pity you've no cancer nurse specialist 

I used to till about 3 years ago.. She was such a support but since she left they've not replaced her.. Guess I was lucky she was around first thing

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
buttercup01
Posted by

Hi  oops, purplek,

Any news?

Sue

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

Hi Sue

I'm seeing the surgeon tomorrow afternoon. Nerves are kicking in really bad. I have my mum going with me (nurse) so she'll have my corner but I can't get rid of the doom and gloom feeling. This morning I actually considered cancelling the appointment and burying my head in the sand..