Kidney cancer

A place for people affected by kidney cancer to support one another, ask questions, and share their experiences.

diagnosed last night. Help

pugs2411
Posted by

Out of interest, and i’m sure this differs by region, after the MDT meeting yesterday are they likely to call or just send a letter?

Thanks for listening 

Jo300
Posted by

Personally I'd expect a reply with a follow up appointment. I'm at Southend for what it's worth

Jo
x
buttercup01
Posted by

Yes, I agree with Jo. I'd expect an appointment letter too. My local cancer centre's in  Middlesex.

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
sueCC
Posted by

, just to add my husband had two  tumors on his kidney, both together measured 30cm, told at the time came out with clear margins, first scan showed a 6mm nodule, had second scan last week now waiting for results. He had open surgery and did very well, kinda back to normal now and he's 76. Good luck x

Sue Xx
pugs2411
Posted by

thank you all for sharing your stories, it has really helped today

pugs2411
Posted by

Thanks both. We’re in Guildford under Royal Surrey but we were told we’d be referred to Frimley Park. 

pugs2411
Posted by

Today is the MDT meeting so hopefully will get more info/appointment very soon! 

buttercup01
Posted by

Fingers crossed for u x

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
buttercup01
Posted by

Mine (9cm)  was described as large by the urological surgeon who removed my kidney with tumour attached. So the size is all relative, as it's smaller than those described earlier n smaller than an average kidney .

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
pugs2411
Posted by

Thank you, that is reassuring. She did say it was almost the same size as the kidney but ‘almost’ could be a matter of cms.

thanks again! 

pugs2411
Posted by

we now have a CT thorax scan date, this thursday (when i’m away!) then a follow up meeting Monday at 2pm, so scared

pugs2411
Posted by

sorry, more confusion. his follow up appointment, is at the urology dept where he originally had the CT scan and cryoscopy on his bladder but the thorax CT scan is at the cancer unit, could it be that the meeting is to discuss his bladder results :( another thing to worry about??? i’m so confused and frightened

buttercup01
Posted by

They will probably b doing a thorax CT scan to cover all bases while they're at it. I have an abdomen, thorax n pelvis CT done every 3 months as part of my monitoring.

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
pugs2411
Posted by

yes think it’s to check for spread, that’s the most scary part

buttercup01
Posted by

It's unlikely the CT done  on Thurs will  have been reported on by Monday, so yes, it's more than likely they'll b discussing his kidney/ cystoscopy results on Mon, having had the MDT. 

 Rather than fearing the worst, try n write down between u what questions u want to ask at the follow up meeting 

Do you know if there is a cancer nurse specialist in urology at Frimley Park? U may well b introduced to him/ her if so. They are incredibly helpful ppl to know.

Btw, IF it  turns out to have spread ,bear in mind that kidney cancer is slow growing compared to other cancers n there's a lot can be done to slow its growth down even more with meds. A number  of us  in this  group will attest to that.

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.