TCC Anyone?

Did u mean to post this in the Bladder cancer group?

Hi

Is this Transitional Cell Carcinoma ?  Sorry to be vague but there are several TCC's Bladder, Kidney, Testicular Cancer etc)

If so I typed transitional cell carcinoma into the kidney groups search bar and you can read the results clicking here the results from the Bladder Group are here. May help until you get more replies.

G n' J

Hi, 

Yes, my mum has TCC (primary in kidney, not bladder). The confusion is that TCC is a form of bladder cancer, more common in bladder or ureter, rather than kidney. Another term for it is UTUC (Upper Tract Urothelial Cancer). 

My mum was originally diagnosed back in 2015, had radical nephrectomy back then (originally Stage 2). However it came back earlier this year. We were told at the time that the surgery didn't get it all (margin positive) and no post-surgery chemo was allowed as her remaining kidney wasn't up to it, but it was still a shock.  

Thanks for explaining ChrisM5498 and Dreamthief. So now I know.

Hi Busy Mummy too,.

Is  it  or u or  relative   who has TCC? Are  any of the treatments for renal clear cell carcinoma effective for it? - of which there are a good few, both oral and immunotherapy (IV)

HI Buttercup

There is immunotherapy available but it wasn't offered in my Mum's case. Sadly she's now stage IV with multiple liver mets so the only option she was offered was chemo to try and control it. I think it's a totally different thing to RCC. She's currently on cycle 4 of 6 with Gemcitabine and Carboplatin. Cisplatin is the first choice but her remaining kidney could have been damaged by it, so they went for Carbo instead. So far it's going well. Sadly it is not curable but she's doing ok at the moment. We won't know for another month or so whether the chemo is having any effect, but so far things are as good as they could be. It is high grade so I believe it must be doing some damage to the evil lumps as she's still holding her own. In fact it's quite hard to take in that she has an incurable diagnosis as she looks as well as she did when they first found it had come back, and that was 3 months ago now.

All the best to all 

C

Suspected it was very different to RCC.

Hi there,

afraid I don’t have much knowledge to share but my dad’s just been diagnosed with tcc kidney grade 3 this week which scans show hasn’t spread further which is a relief.

However they’re not operating to remove for another month and am just concerned given it’s grade 3 that it could spread further in the meantime.

Am only just getting my head around things so any advice/info from anyone would be very much appreciated.

Sorry to interrupt the thread but there seem to be so few current posts relating to this.

As soon as we get more info would be happy to share our experience/advice we like you said it’s the fear of the unknown that’s often most difficult.

Thank you all

HI Autumn

Fingers crossed for the op for you. 

You're right about there being few posts relating to it, I've hardly seen any and I've been on here for a few years now.

C

Hi ChrisM5498

As you have already discovered it is difficult to discuss UTUC/TCC online.  Sites like this are populated largely by RCC patients and carers.  UTUC patients are really very few.

Due to being a rarer kidney cancer it is one of the 'Cinderella' cancers that does not receive a great deal of research and funding.  As a consequence there are virtually no new drug regimes and combos, unlike for RCC.  There is also a difficulty in accessing surgeons and oncologists who specialise in this type of kidney cancer, because they simply do not exist, unlike the USA.

The Pharma industry wants good returns for the time and money spent on expensive research, and this would not be available due to the numbers involved in this particular cancer.  Treatment is often extrapolated from TCC of the bladder, is not entirely comparable, and has not advanced much, if at all in decades, again unlike RCC.

Immunotherapy, ie Pembrolizumab has and is now being tried, with mixed results.  I get the impression they are rowing back on this in some regions.  It is very expensive and whilst a few patients have experienced remission with others it just extends life by 2 - 3 months.  Do you know why your mother did not receive Pembrolizumab, particularly considering her liver mets?

I commend you doing this research for your mum.  She obviously has a very loving daughter.  She is really very fortunate in ths context!

Rgds

Dedalus

Hi ChrisM5498

P.S. If you have not already done so, type UTUC and TCC into the Search box and past discussions on UTUC will come up.

Dedalus