Newly diagnosed with High-grade Urothelial Cell Carcinoma of renal pelvis - looking at treatment options

• Hi  welcome to the kidney cancer group. I just had a straightforward nephrectomy of my right kidney, 16 years ago..Personally, I'd want to wait n see, but maybe others in group have different opinions?  I've never had chemo,just been on Pazopanib for years instead.
• Here's hoping other members will chip in 
• Do let us know how you get on,..
• Sue 

Thank you and God bless you for responding Buttercup01!  I too am leaning to not doing chemo prior; I know what chemo can do as far as health damage that may not go away.  Can you tell me anything about location/size, etc. of why you had nephrectomy?  So relieved to be in touch with someone!

Hi 

Hi my right kidney had to b removed after an ultra sound revealed it had a 9cm mass on it. 

They did watch n wait till I had to have a hysterectomy as it'd spread to right ovary. Since then, I've had various mets which have been dealt with mainly by meds ( see profile for more details)

Ask away if there's anything my profile doesn't answer.

Best wishes

Sue

Just read your profile Buttercup and holy cow, what you have gone through and thankfully still fighting the good fight (albeit not easy)!  Way to go and prayers that all continue to improve and be controlled.  Only one question at this point:  did they know what type of mass/cancer it was (i.e. high-grade or low-grade) and had it metastasized (i.e. in lymph nodes) at time of 1st surgery?  You are a true inspiration and "symbol" of hope!

Hi again  can't remember what kind of grade it was , but had spread into vena cava, not to any lymph nodes. Also,didn't  have to have hysterectomy till a couple of years later. Seems like it stays dormant for 2.5 years then rears its ugly head again. ( You'll see that from my profile).

 I really just live with it, but get " scanxiety" every time I'm due another scan - of which I've had many over the years!

I hear you on the "scanxiety" buttercup...happens every time I get mammogram and pap as I have had one abnormal one and had to see gyn oncologist; praise God I was found clear for cancer there at the time.  I know they will have to stay on top of things, probably cystoscope exam and scans quite often but can live with that.  So far they have not staged or graded what I have which I am definitely asking surgeon about.....very important to me; even my brother said it is very important.  If he says can't be done prior to surgery, then so be it.  I will not take chemo and chance effects from that based on speculation.  Did they know it had spread to the vena cava prior to removing your kidney? Thank you again and will keep you posted if you want.

Hi Buttercup, besides what I asked about knowing if cancer had spread to the vena cava prior to 1st surgery, one more question if you don't mind.  If you had been offered chemo prior to surgery to help prevent it from coming back (but not 100% guaranteed) would you have taken it based on what has happened since?  I know this may be hard to answer but just curious.  You don't know how much your responses to me mean, in me finding someone to finally "talk" to to has gone through something similar.  Thank you again so much! 

• Hi  Dunno re chemo pre surgery tbh. It was never an option, nor had it ever been fortunately.

Do pm me if you'd prefer x