Struggling with options.

FormerMember over 5 years ago

35 replies
45 subscribers
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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?

FormerMember over 5 years ago in reply to FormerMember

Hi PurpleK,

I'd go for the nephrectomy but that's just an opinion. Basically I've sometimes been given options and I usually throw it back at the medical folks and say "what's the best advise from a medical perspective". They do know their stuff and I do also carry out a fair bit of research etc. I believe ablation is a newer method though and if it is recommended then maybe it will be OK. They'll do scans every now and then so if you do get a re-occurrence, you can then have something more drastic but as with everything cancer related it is a big IF.

I had a partial nephrectomy in 2008 when I was 40. All was fine and as it involved an epidural, my recovery was OKish. I was back at work 5 weeks later although it was a struggle for a few weeks beyond that (I was a contractor with family so felt a need to go back asap).

Looking back, maybe I should have had a full one as I felt awful last year for months and it has come back to both adrenals, lungs, brain and shoulder. It is best to be brutal and go for the most aggressive treatment in my view. Cancer is cunning and devious & I wish my consultant had given me some chemo to "mop up" as he put it anything left but in 2008 his view was I was OK.

FormerMember over 5 years ago in reply to buttercup01

Hi KLM,

Interesting to hear your experience regarding the above. Do you know what the criteria is please?

I had a partial nephrectomy 2012. Last year after a few months of illness I had scans etc and the news it's come back to brain shoulder, lungs and adrenals. I had Gamma Knife end of last for brain and am on Nivo (completed 4 doses of Ipi initially).

Last scan showed some increase in tumour size so naturally, pretty scared about the future.

buttercup01 over 5 years ago in reply to FormerMember

Hi , in the old,days ( 15 years ago) we weren't given any options.I had a radical nephrectomy then watch n wait afterwards, via chest x-rays then CT n MRI scans. I've since had mets in my lungs, brain n omentum. But I'm still here, thanks to Pazopanib.

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

FormerMember over 5 years ago in reply to buttercup01

Hi, thanks for comments. I'm all good now thank you. I had a partial done nearly 4 months ago! All recovered now

buttercup01 over 5 years ago in reply to FormerMember

Hi , nice to know it's all done n dusted!

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

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