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?
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
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!
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.
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 PurpleK, 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.
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.
Hear, hear Jo300
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
Hi purplek8 oops, purplek,
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..
I found the surgeon extremely helpful, if you haven’t been given a Macmillan nurse you should get one after seeing the surgeon, I never spoke to anyone about what I was going through as I didn’t know what to say, I had a radical open nephrectomy, stay positive and keep plugging on, good luck
Nooo, don't bury your head in the sand PurpleK
It'll b much better once you have a treatment plan.
Glad your mum's going with you tomorrow. Always good to have someone in your corner x
Hi, back from seeing the surgeon. He was lovely and put my worries at ease.
Because the tumour is in the centre he said that partial would be difficult but he's going to have a go using robotic, guided with ultrasound but he said its possible he'll have to resort to a full removal which I've agreed too. They are currently having the ultrasound equipment installed so once that's done I'll have my op! Phew
Hi PurpleK I had a large tumour ( about 10cm) removed by open surgery 14.5 years ago. The surgeon did it via my abdomen, not the bac.We agreed I won't ever b wearing a bikini -too fat anyhow.
Good with with it done robotically. At least u know it can b done manually if not.
I'm so pleased that your decision has been respected. I can only say that I wouldn't worry if you end up with a full rather than partial. Surgery is surgery - it will take as long as it takes to recover regardless. Your kidneys would still have to recover full function - and one can do that alone if it needs to. I was full and it's been totally fine since.
Lots of luck to you in the next few weeks.
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