Newly diagnosed

Hi Trixie,

Everyone's experiences are different and a lot of it seems to be down to what health authority area you are in, plus the size and stage of your lesion as estimated initially and then as seen on the scans. Mine was found incidentally and they said it was "small" (2.7cms) and as it was found as I was about to undergo a hysterectomy, I ended up having it on active surveillance for two years, because the thing to remember is that the majority of kidney lesions are slow-growing.

I was able to more or less pick my time to go ahead with surgery! I could even have left it another year but decided that I didn't want to risk it suddenly growing excessively, even though it hadn't done in the two years. 

Your next scan should show the size and type of the lesion and your consultant will consult with you at that point - they may recommend a quick surgery or they may suggest that they keep it on active surveillance if it's seen to be small. If the latter, you can always ask for it to be done sooner, not later, if the waiting is going to cause you stress. In my case, the waiting and watching suited me very well, but others may want to get it over and done with as quickly as possible. Your consultant and team will be able to advise best on this, for you. 

Hi

Ive had 2 biopsies - 1 successful and 1 unsuccessful. Lesions is 4.2 x 3.1 cm and they’re recommending the surgery rather than a watch and wait. 
I know it’s clear cell, just unsure of the stage it’s at 

They don't count that as anything other than "small" - the cut-off seems to be greater than 5cms. But if they are recommending surgery, and you are keen to go ahead, that then leaves the question of How Long will you need to wait. 

That may depend still on your health authority area, your consultant and team, and also what they see at the scan they are going to do. They might indicate that it's not urgent, but if you feel less anxious by not having to wait a long time, make sure your consultant knows this. 

There might be others here who can give their own experiences of how long they had to wait, so that you can build a wider picture, but ultimately it's something that your consultant will be able to tell you more accurately at your next appointment which presumably will be straight after the next scan.

I guess the next CT scan will hopefully tell them what they need to know and then will go from there.

To be honest, I’d rather have it out than let it get any bigger

They won’t know the stage until the partial nephrectomy has been carried out and the tumour has been analysed. Hope this helps.

Hi Trixie - mine was found on an ultrasound inadvertently on 14/02/25. The following three weeks I had two CT’s and was introduced to a whole new world of Urology, MDT’s, and the unknown. A lot to get the head around. Was told I’d need a radical - had the operation on 22/04 and thankfully only had a partial (robotics also). First few weeks recovery I found very hard - my energy levels started coming back around week 8. I’m about week 11 or 12 now and physically I feel much better. 
I get that falling apart feeling - it’s awful stuff but remain strong - better off getting that thing out as quick as possible. Let me know if I can give you any further details

Hi there

Got my date for 19 days time so I’m pleased it’s happening sooner rather than later.

hoping for a quick recovery and getting back to work and normal as soon as possible but I know I’ll need to be sensible 

I’m fatigued as it is but think this is because this has all happened in the last 7 weeks and it’s been a real whirlwind

My mum cant get surgery, as her kidney cancer is too far advance, she has a 20cm turmor in her kidney, which has spread, my mum os over the national advantage for treatment, & still waiting for a oncology appointment. 

That good progress Trixie - my advice would be not to rush the recovery process and go with it. Physically recovery and emotional recovery will both run at different speeds. While physicaly I’m back at 90% plus after week 12 - emotionally and mentally it’s taking longer