Papillary renal cell carcinoma

Hi Adam

Although many of us here have clear cell hopefully we can help. From what I know Papillary RCC is even more slow growing than clear cell - so that's a good start. It's typically less than 1cm a year and most of us think of small tumours being anything under about 5cm or so. All of the information you have been given so far sounds like good news from a cancer perspective - even though I fully understand that the news to you must sound terrifying.

It's fantastic that it's been found so quickly and that you will be monitored. It's not unusual for this to be the route. That said, if you're not sure ask your oncologist, or your specialist nurses if there are any alternatives, or ask them to confirm why they think this is the best option for you. It's a hell of a lot to take in to start with and we don't always think to ask all of the questions that we need to. I'm assuming that you have been referred into oncology and you're not still in urology at this stage?

I wanted to reply so that you had something to go on. There are several people here who will have other ideas of what you can do and who you can speak to outside of your own hospital if you want to. You are of course entitled to a second opinion if you really feel that you're not getting the answers or the treatment that you want from your current hospital.

If nothing else, know that this has been caught incredibly early and things should be hugely positive for you.

Hi Adam, my husband had Papillary rcc, he had his kidney out 18 months ago. His was very large when it was found, well he had two both measuring 15cm each. Only found as one side of his stomach looked a bit bigger, no pain or anything. His surgeon said it had been growing for years. His was cystic tumours grade 2 pt2b, he’s still under the urologist and not an oncologist, has had 2 CT scans, one in July will be the last if nothing showed up then Xrays, bit scary about that. 

Hope everything goes well for you x

Hi Sue

Apologies for the late reply - with COVID everything has been on hold and i was given a follow up for September so really hope its not grown or advanced, really appreciate your response as it provides some context to the rate of development with these type of tumours. I wish you and your partner all the best and hope he is doing well.

thank you

Thank you Jo - apologies its taken time to reply, i just switched off as my follow up was penciled in for Sept due to covid and the rate of expected with this tumour type. Appreciate the words of support, i am expecting to have further scans to see if it has grown anymore etc and no doubt will need to decide if it should be operated on or left for a further six months etc

will update post follow up.

thank you

adam

 just to update you, my husband had his CT scan and all is well, for some reason he’s back again in a year but we’re ok with that. On his first scan they found a node but must have been ok as it wasn’t mentioned again. We never get to speak to anyone only a letter, if anything wasn’t right that’s when I guess someone would talk to him. Let us all know how you get on and good luck x

Great News Sue - must be a huge relief. Im due to be seen end of sept will update too

thank you and best wishes

Adam