Just been diagnosed with renal cancer. I have so many questions!

[Dunkling]

After 6 months of ongoing tests at least finally I have an answer. Found out yesterday I have RCC, and was told the tumour had clear margins, so I understand that bit, that the tumour is all gone.

After being given lots of info for support, macmillan etc, I now have my next appointment with the surgeon in 2 months time. I was also told I may need no further treatment.

Here's what I need help with because I just don't understand...…

Staging has not been mentioned. How is this done and when? I understand the concept, but how do they know if it has spread? When/how do they look? My CT that showed the mass is 4 months old. Do they go by that? Is that reliable? Is it likely to be redone at my appt in 2 months?

They gave me a number to call when the shock has worn off, but I can't help feeling rather stupid having no idea where it all goes from here. I suppose I am panicking because my neck lymph nodes have been sore for 4 months now and still sore 1 month post surgery. I feel like I've been left in limbo just waiting!

What a shock for you. I don't have any practical help but I would perhaps make a list of all the questions you have, and then call the number. Explain you are needing clarification and support, and really need some idea of what the plan might be.

Take care of yourself.

Sorry I don't quite understand your post. Are you saying you have kidney cancer?

Hi I've just been investigated for this due to haematuria.

I'm guessing it could be stage one if they have said clear margins but as you were only told yesterday I take it you've not been operated on?
I would give them a call and ask to speak to someone, get a list of questions ready. 2 months til they see you again is a long time to be left not knowing.

So you've had the tumour taken, they have examined it and concluded that it was just the tumour hence clear margins?

Your follow up appointment I assume would be where they would do other testing to make sure no lymph nodes etc were effected and tell you your treatment plan

Just read your post again and it makes more sense to me. So you're one month post surgery and they're saying you have clear margins?? I had my kidney removed two years ago as I had a tumour. They rang me a month post surgery and told me that it was a low risk cancer, the margins were clear and that I wouldn't need any more treatment because that suggested it hadn't spread. I saw the consultant a few months later and he told me that it was a grade one cancer (which is very low risk) and I would just need regular CT scans for the next five years. Does that sound similar?

I would ring the specialist nurse who will answer any questions for you. She will also arrange an appointment with a McMillan nurse if that would be helpful for you.

It's a scary thing to hear OP but if the margins are clear that sounds very positive indeed. :-)

Thanks for replies.

Yes, the tumours been taken out. Part of the shock despite it taking so long for a diagnosis, is that the mass was removed as I was in pain, but I was told it was something different and highly unlikely to be anything but benign. To then be told over the phone that it was cancer and she was a cancer nurse was just not what I expected. Then with all the 'have macmillan been in touch'...… well no and thank god, as I had no idea!! So thrown all the questions only came later.

Thanks Rosinavera... that is very familiar. I was told clear margins and it would be discussed with the consultant 2 months later whether further treatment needed or just regular scans for next 5 years. I'm just confused as to how at that stage, they know if it is likely to have metastasized? I suppose my main worry is how long I had symptoms but it was continually misdiagnosed, so delay in removal.

They know it hasn't metastasized because they've now had the results back from the path lab where they've examined the kidney and it has clear margins showing that it hasn't spread outside of the kidney. It sounds very similar to my cancer. I was told that it was very unlikely to be cancer too and I was extremely shocked when I got my call a month later to say it was.

It is a lot of information to process OP, especially as you are still recovering from your nephrectomy. I would ring your specialist nurse to discuss your concerns. I hope you feel better soon xx