Bone metastasis

Hi Soki

I haven't experienced this personally, but it is known that kidney cancer can spread to the bones. I'm not sure why they don't include your limbs when they do CT scans when you are having your initial investigations. They don't normally include your head and neck either. 

I would definitely be making a GP appointment to get your leg pain checked out! It could have any number of causes, but I think it would be wise to mention this to your GP, or your team at the hospital.

I do hope everything is well!

Candysmum

Hi Soki

you wrote

"Once my kidney cancer was diagnosed I had a ct scan on my chest/abdo/pelvis which came back clear and was told it hadn't spread - but obviously they didn't scan my legs!"

I'm afraid, that my wife has had a similar experience, so take great care

She is recovering from an operation to deal with a tumour in her right femur. Recovering slowly, being bed-ridden for the past month but still a long way to go. She has stage 4 Kidney Cancer and it has been classed as 'Stable' for around two years - she was put on a course of Ipi/Nivo, and now Nivo only, so we were doing nicely, but some time in June, she started complaining of pain in her right thigh. To cut a long story short - she went for a CT Scan and it showed a tumour present in her right femur just above her right knee. 

Whether it has been present from the beginning, over two and a half years' ago, or a recent development, no one can say. When the original diagnosis came in, she too only had a CAP scan, thus missing her limbs, so we'll never know. She needed an operation to strengthen the femur, so a rod was inserted about three weeks ago but only after she went on a procedure to block the veins supplying this tumour with blood. I made a posting about it around two months ago. The procedure was called Embolization - basically, cut off the blood supply causing the tumour to die. My wife has been unable to climb stairs or move around without a Zimmer frame ever since. The operation to strengthen the bone took place eight days later, so three weeks ago, and she has been in a lot of pain. 

Today, we saw a radiologist who took further scans and marked her up for a course of radiotherapy on the remains of the tumour and this will start next week. 

He said that to see a tumour spread from the kidney to one of the limbs  wasn't unheard of, but he thought quite uncommon, which is why she didn't get a full body scan - 

The only advice I can give anyone is to take particular care to raise awareness of any unexplained aches or pain, wherever they occur - better safe than sorry. I would also advise pushing for a full body scan, or at least in the area of immediate pain. We were lucky, my wife's team were on it straightaway, but we both regret not raising our concerns earlier. 

All the best, Bodger

Hi Soki

I have kidney cancer stage 4 which has spread to my facial bones and spine diagnosed in September. Since starting my treatment I regularly get shooting pains in my right thigh down to my knee but this predominantly happens at night in bed. I can stop the pains by getting up and walking around. My GP thought nerve pain but my oncologist wants me to go to hospital tomorrow to have this further assessed and possible MRI. I know it’s best to know but I am scared at what it may show. 
Very best wishes to you. 

Hi, I have had shooting pains in my left thigh at a few random times. It's like a electric shock. I am on Pembrolizumab and thought it could be a side effect though nothing like that is listed. I did mention it at an oncology appointment and it was noted but no more has been said about it. If it was more frequent, I would probably ask for a scan. It could be completely unrelated but you can't help but wonder can you?

Random leg pain after kidney ops seems to be more common than people think. I have been virtually immobile since my rad nephew two years ago.

Gotta love the contribution from predictive text and your nephew 

Hi Simon

Having leg pain two years after an op sounds a bit concerning to me. Is your GP/hospital team aware of this? i think if it was me, I'd be asking some questions!

I hope you're OK otherwise

xxx Kate