Is there anyone on here with or caring for someone with TCC?
Did u mean to post this in the Bladder cancer group?
Hi Busy mummy too
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
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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)
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
Suspected it was very different to RCC.
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
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.
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!
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.
Many thanks for your reply. As you said there are very few posts relating to TCC, It's actually only this thread where I've seen anyone else talking about it.
With my mum's treatment so far I can't really say a bad word about her oncologist, they've been very good over the last four years. We had a bit of a weird situation after surgery, as she was margin-positive. The hospital couldn't follow up with any treatment as my mum's remaining kidney was struggling, so we all really assumed the worst with it being high grade.
However, we have had three years with no sign of recurrence whatsoever. As I said earlier in the thread it was only during her last planned scan that they spotted anything, which was a real kick in the teeth.
When we discussed with oncology after the secondaries had been found, they went for chemo as the treatment could begin almost immediately (and it did), whereas immunotherapy would have taken considerably longer to get started, and as she has an aggressive type, they believed the delay was too risky. So far she seems to be doing ok, side effects have been pretty bad on occasion (normally 5 days after the big dose), but she's tolerating it well. She's on cycle 4 of 6 at the moment. My main worry is that the chemo is doing nothing - we won't know that until cycle 6 is done.
So fingers crossed for that!
Oh almost forgot Dedalus - I'm a son not a daughter lol....
Hello again ChrisM5498
Apologies for the 'daughter' comment, but my commendation still stands.
I can't understand why your mum did not receive post surgery, that same chemo she is receiving now. Was her EGFR below 40 at that time? Why is she receiving it now? Did her EGFR improve over the past years? If so, why didn't she receive it once it improved? What is it now? Gem/Carb can be given with reduced kidney function, as can Paclitaxil.
They don't really know why, and there are some research papers that attempt to grapple with it, but reduced kidney function in the remaining healthy kidney, is an all too common immediate after effect of nephrectomy.
It is difficult to obtain the following in my own region, but have you explored the following for the liver mets? Surgery - we can manage quite well with a reduced size liver. Stereotactic Radiotherapy, Cryoablation of the mets. Pemrolizumab after chemo as 2nd line treatment. I don't know how old your mother is, re the possibility of surgery!
The Japanese have the highest incidence of UTUC. It is worth looking for some of their most recent research.
Has your mother been also getting regular 6 monthly bladder scans since her nephrectomy? The bladder is one of the most frequent areas for UTUC metastises, and the initial stage does not always show on a CT scan, even with contrast.
Hi again Dedalus,
Many thanks for your commendation - hard to take compliments, I'm still stuck feeling I don't do enough!
You're correct on your comment - assuming EGFR is kidney function? Not that familiar with all the acronyms even after all this time. Yes, her kidney function was very low (I think around 25 if I recall correctly). The oncologist we saw then was a real doom and gloom merchant, and she basically said that even low dose chemo would be highly likely to cause kidney failure. They did the "flush the bladder out" chemo treatment before and after surgery, but we were told it was a no to anything else.
With your comment about reduced kidney function, her urologist explained that this was due to the cancer basically shutting down the affected kidney, and putting further strain on the healthy one.
Currently her EGFR (learn something new every day) was 48 at the last check (two weeks ago). It has deteriorated a bit during chemo, and they've had to lower her carboplatin dose a bit, but kept the gem at the original dose. She's on 3 week cycles, day 1 is gem/carb, day 8 gem top up, then week off.
For background info - my mum is 78, and for the record this is her 4th battle with different cancers. Over the last 20 years she's had low grade breast cancer, high grade breast cancer, low grade lung cancer, and finally TCC. She's been lucky with the first three in that they were caught very early, and cured surgically at the first attempt. She had 6 monthly scans for the three years after surgery - it was the her last one which triggered a CT as she was due to move on to annual scans - they saw a red area in her bladder, so CT scanned, and that picked up the liver mets.
Now that the TCC has returned, she has 6 liver mets, up to 5cm size and a very small one (5mm I think) in her bladder, which oncology are not particularly concerned about - the liver ones are their main concern for obvious reasons. Prognosis is that it's incurable as it's basically spreading through bloodstream. It's not operable for that reason, that and she's not really strong enough to stand up to any surgery. At the moment the treatment is to try to control it through chemo. We won't know until the chemo cycles are complete whether it is working. I know the normal procedure is to do another scan at cycle 4, but her baseline scan wasn't done until mid cycle 2 (the hospital had a fire which took one of their scanners out, and oncology didn't want to delay treatment) so there's no way of knowing till then.
You have a lot of knowledge on this nasty disease, do you know whether it's correct that PET scans don't pick it up?
All the best
Your mum has certainly had her problems with cancer over the years, and has done well under the circumstances.
Yes, UTUC is a nasty one, and Stage 4 has >5% 5 year survival rate. I don't like putting this in print because I confront my own mortality in the process.
I am knowledgeable to the extent that I have Stage 4 UTUC and have read a great deal about it, although I stopped doing that eventually.
CT with contrast is the best imaging technique for detection, but a PET scan can be employed after spread has been determined. I have never received the latter. Unfortunately the contrast used in the CT scan is nephrotoxic and a kidney protection infusion of sodium bicarbonate should be given when the EGFR is below 45.
Your mum's EGFR of 25 was pretty near dialysis territory, so I can understand why they decided against chemo at the time. However, there may have been an opportunity to give her systemic treatment once her EGFR improved. An EGFR of 48 is good considering she had dropped to 25 at one point. I am not a medic but they could also have considered radiotherapy to deal with the positive margins, in the kidney bed, after the surgery healed.
I would reiterate that I am just a layperson, and strongly advise your own research, but one possibility and maybe the best one under the circumstances of spread, is to push for Pembrolizumab, as a second line treatment if the chemo is not effective. Some patients have been complete responders with this drug. It is a totally different cancer and so no parallels should be drawn, but J Carter the former USA president went into remission from a possibly terminal brain tumour which had spread from his malignant melanoma, as a result of this drug.
There are tests that can be done to determine whether the individual's UTUC will respond to the Pembrolizumab.
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