Hi everyone, has anyone suffered from Transitional Cell Carcinoma of the Renal Pelvis? It appears to be a rare form of kidney cancer... Thank you in advance.
Oh yes indeed! it is rare and the research is limited particularly around treatment etc. I had my radical nephrectomy ureterectomy and bladder cuff repair 2011 with nodal mets and subsequent chemo.
Take care and all the very best
Hi, thank you so much, how are you doing? My mother who is now 76 had her radical nephrectomy by robotics keyhole for Renal Pelvis TCC in January 2019. She also had her ureter removed. We were then informed it was stage three grade three, ‘the beginning of stage three’, although thankfully still incapsulated & thank God localised. She had four rounds of aggressive adjuvant platinum chemo. Her kidney professor at The Royal Free told her he was going to pass her over to a bladder oncologist to be treated as a bladder cancer patient. She now has quarterly ct scans along with cystoscopies. I’m wondering if she should have had a bladder cuff repair.
When they did the RN they would have noted it is encapsulated and so if they took part of the ureter will have tested to see if the cut end had any cancer cells.
My surgeon opted fo the full monty as I had nodal mets on CT scan which had developed within a couple of months so quite aggressive & G3 T2 so to be honest he took as much away as he could. Wr also don't have the robotic facilities here. The POUT trial in relation to adjacent chemo showed positive results - up until this the research was limited and this type had quite a negative press however the trial aimed to see if there was value in teh adjacent chemo and yes it seems so.
The bladder issue is that as you are probably aware, the bladder lining is the same cell type so the gold standard is to monitor the bladder with regular Cystoscopies and I have been on two yearly scan now but probably finish these soon.
I would just ask the question about the bladder cuff but mine was repaired as there was a hole left with the ureter being removed, so your mum probably didn't need this, The surgeons are guided by the European guidelines
Hope all goes well fo her
Thank you so much for your very informative answer. God Bless you xx I was due to run for cancer research this year, in five different areas of London, so sad all cancelled due to Covid
Hi, sorry to bother you, I don’t know whether you have experienced this. The only symptom my mother had with TCC of the Renal Pelvis was macroscopic blood in her urine. Thank God her recent tests were negative, which was a cystoscopy, CT contrast Chest Abdomen & Pelvis & a CT contrast Urogram. Yesterday we read the discharge note that stated dip stick urine test was negative for infection, but worrying stated ‘blood trace!’ As the tests were negative I’m a bit lost, but the blood must be coming from somewhere. The consultant Urologist who carried out the cystoscopy didn’t mention the urine result regarding blood trace to us.
Glad that all the recent tests were good . When you say the discharge note was this post surgery or more recent following cystoscopy?
They do say that there may be microscopic blood post cystoscopy and a trace of blood whilst worrying could be due to this?
The macroscopic blood with the TCC would have been very visible in the urine as anything from dark brown ( sherry), bright red ( red wine) or pink ( rose) - these best describe my experiences which were the first two.
Can you ask the G P surgery to repeat dipstick in a few days or so? it may be worth just to have that reassurance. its probably nothing to worry about - Ive had the same and like you say - it must come from somewhere but if ti goes away and all tests are good then alls well. Just ask the practice nurse if she can arrange fo this as a simple dip test.
The other alternative is to e mail the surgeon and ask directly.
How are you? Many thanks for your reply & advice. I e mailed my mother’s surgeon & oncologist & they both said as tests were clear there’s nothing to worry about & that it could possibly have been a mistake. The trace of blood was noticed during a urine test prior to the cystoscopy. I then requested her GP carry out a dipstick test which thankfully was also clear of blood. I then requested the gp send off her sample to test for cancer cells & thank God that was clear too!
PS The discharge note was after her recent cystoscopy x
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