Solid mass

Hi, I don't mean to be the voice of doom or anything, but it's best to keep in mind that there is a possibility that follow up treatment might be advised after surgery. It's not just the size of the tumour but also the grade of the cancer, which is about how aggressive it is. In my case, my tumour was approx 5cmx 6cm with no spread, which is smaller than some but larger than others. I had a radical nephrectomy lat November and recovered well, it was pretty straightforward. However, 6 weeks after the surgery, I was told that the cells looked quite abnormal when looked at under the microscope - they call this the histology of the tumour. So I was given a Leibovich score of 6 and there is apparently quite a high risk of return. I was offered adjuvant treatment, which is Pembrolizumab infusions every 6 weeks for 9 treatments. This should help prevent recurrence. Not everyone decides to have this but it was the right decision for me. I have 2 more left to go and I'm looking forward to them finishing, as I have felt tired and had a few side effects but these have been manageable. Then it will be regular scans. Good luck with your journey, just take one step at a time and stay optimistic if you can, as that helps so much!

Thank you for sharing your journey. I don’t see your post as doom and gloom, maybe just a reality check- It does help know possible outcomes as I think I’ve minimised my condition as much as I can because the alternative is too scary. I am someone who overthinks so I’ve really tried not too this time. I think today is the first time I’m really processing where I’m at because since my diagnosis I have been with the children as it was half term and I have had to keep my emotions on an even keel as my youngest would be very anxious. Today was a relief as I was finally in my own without having to pretend all is good! 

Hi Simon12345,  I hope you're doing ok. You will get through it.  Mine was an incidental finding in April. Had CT scan a week after, operation to remove full right kidney in June. Everything moved pretty rapid after diagnosis. Mine was 7.8x7.8x7.9 so slightly bigger but not by much. I had no biopsies beforehand, just straight in for a full removal. Once histology results came back I was told it was a ChrRCc stage 2. I'm extremely fortunate to not have required any chemo. It's a rare cancer so they told me, not too much knowledge around it I think but they are treating mine as an intermediate to high risk given its size and the type, more on my bio. 
stay strong, the next few weeks, months, days will feel like a rollercoaster but stay positive is all I can give you as my advice. I've had my ups and downs, mentally I'm still struggling but we are all here for support. Great bunch of people. 

Well ive got a bit of an update, i saw the consultant on tuesday he showed me the ct scans and the mass looks a lot bigger than i thought it would, its in the left lower pole and is protruding in to the urinary drain and he said is a very difficult procedure to do partial removal and thinks it will end up being full removal of the kidney, i have one enlarged lymph node but hes not worried about the size, he was concerned about my constant headaches and the fact im being sick so have been booked in for a ct scan of my head just to check everything is ok, i was told that surgery is usually within 4 to 6 weeks of being put on the list but he was hoping to get me done sooner because of where the mass is. its still a waiting game but hopefully will hear when the op will happen soon. Might mean xmas is cancelled for me but id prefer to have it out sooner rather than later. 

Best of luck with the op. A full nephrectomy can be a more straightforward op than a partial sometimes, so don't worry too much about that aspect. Waiting for it to be over is tough, so try to distract yourself if you can. Hope it all goes smoothly for you .

Had a ct scan of my head done this week as the consultant was concerned about my headaches and nausea, the results were clear of any abnormalities so thats good, now just wait to hear from the booking team to tell me when i can have my op. Been signed of work now as ive been struggling to keep up. Hope to hear something soon. 

Good news about your head scan.  Hope you hear something soon about your surgery date ...

I hope so too, beem just over 2 weeks since i was put on the list but no idea how long it normally takes to have the booking team call me about a date, but have more stress added now as i wanted to claim on my mortgage insurance to cover me while im not working but they wont pay anything as ive not had a biopsy done and the drs word isnt good enough, wont have a biopsy until after the op, Typical insurance company, dont care and do everything not to pay out, so money is going to be even tighter now. 

Sorry to hear that your insurance company won't pay out, especially as it seems to be the norm to do the biopsy after the surgery when it comes to kidney tumours.  Must be really annoying when you pay out for cover for events like this.  I wonder if they will backdate payments at a later date?  Is it worth speaking to anyone who might be able to give some advice about this (eg. Citizens advice or the kidney cancer helpline ... perhaps they might have come across this scenario before).  I know it's stressful enough to be going through this, without feeling that you have to be your own advocate.  Especially if it still ends up that they don't pay out at all.

I'm still waiting for my surgery date but think it varies anyway for how long the wait is.  Hopefully we will both get our date soon.  

Well i rang the insurance company back to complain as it shouldn't matter whether i have canver or not, im off work as im not up to it and waiting for surgury which ill need time to recover and the person i got was great, he agreed that i shouls be covered and sent me  to a different department, the other pwrson in that deparent sorted my claim within 10 mins and said ill receive paperwirk to sign and send back, so should be sorted now, it sems to be the same everywhere, it all depends who you speak to, so thats a little less stress for me.

Hope the dayes come through soon too, how long have you been waiting?