Kidney removed now waiting for results

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My husband was diagnosed with stage 1 malignant cysts in February this year. We were told it wasn’t a rush to remove the kidney and could probably wait up to two years, we weren’t keen on that so the date was bumped up to today. The last scan 3 months ago showed very little change but today the surgeon had to stop the attempt at keyhole and revert to an open surgery due to the size of the kidney and tumour. He said it was fairly solid, and couldn’t really tell the difference between the kidney/cyst/tumour. Obviously we have to wait for the results from pathology but feel like we’ve gone from stage 1 and little to gods knows what in a few hours. I’m just scared of what’s going to happen and reaching out to you all x

paulb1912468783 10 days ago

All the best to your husband and yourself and family. Hopefully they have got it all out.

My scan showed stage 2, I elected to wait a month for my operation due to a holiday we had booked. When they removed my kidney and did tests it turned out to be stage 3 as it has started to travel into the main blood vessel. It was a very aggressive one. I was put onto immunotherapy to keep it away.

Claire122 9 days ago in reply to paulb1912468783

sorry to hear that, did the immunotherapy you had work and has it kept it away?

paulb1912468783 9 days ago in reply to Claire122

It has kept the cancer away for now, however I have managed to get a very rare side affect that has messed up my lungs. Please don't let that put him off though. I have been told it's so rare that potentially only 3 people in the world have had it.

Diffyc1abf2 8 days ago

Hi,

I had a kidney removed because my tumour was very large and in my blood vessels. I have now been diagnosed with RCC which is the most common type of kidney cancer (I believe 80%) and is generally slow growing.
The info about the type of cancer and level didn’t come until a few weeks after the op as that is when the lab results come back. Even now there is quite a degree of uncertainty with mine as to whether it is secondary now or not, at first they thought it definitely was but now there is a question mark. Some good advice I was given is don’t get too locked in to one diagnosis or treatment as things will change as they gather more data and that certainly seems the case for me. This first bit of uncertainty and waiting is definitely the worst bit mentally and the op and recovery was very full on but I am doing a lot better now.
Best wishes to you and your husband, it is a very scary time but in my experience it gets easier.
Regards, Diffy

Claire122 8 days ago in reply to Diffyc1abf2

Thanks Diffy, we definitely focused on it being small and stage 1. I think the initial shock of the doctor seeing us after the surgery and being quite blunt about the size of the kidney/tumour is starting to clear and we’re trying to just get on with the recovery until the results are available. It’s just a waiting game now.

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