Transitional Cell Carcinoma - spread and treatment advice needed.

Hello

I'm so sorry to hear about you and your mams awful experience. 

Why cant these people have a bit of empathy for the families that are going through this terrible time.. I know not all medical people are not all the same but just that little bit if caring and consideration would be a help.

My husband has been left with only half a kidney after peeing blood back in 2023. Its absolutely devastating and I dread every scan in case it's come back and feel guilty as he is very posative but also worries aswell. 

His surgeon saved his life as he would of only has six to twelve months left it just allxhappened so fast .

If you feel yous need a second opinion then I would speak to someone who could advise you and hopefully get the answer's you need .Hope allzgoes well for uour mam and all the best for you both.

Jaxx

Hi

You don't share what immunotherapy is being proposed.  Was it mentioned?  Here are some of the common ones: ipilimumab, nivolumab, pembrolizumab, cabozantinib.  I was on ipi/nivo for a couple of years and had a good response, although my kidney cancer is a different type.  

Immunotherapy is recognised as being much kinder on the body than chemo, in general.  My nurse specialist shared his observational experience  on my early visits.   The side effects can be feeling sick , itching, fatigue.   If you read the patient leaflets for immunotherapy, it looks awful.  They have to tell you about all the side effects ever reported.  Certainly I got worried reading about the risks.  But my experience was nothing like the picture painted.  The side effects I got were niggly things that were too rare to get listetd in the patient info.  eg dry eyes, nasal congestion and impaired kidney function.  Oh the irony!  

Where did your consultant get the info "it's only effective 55% of the time"?  Is that specific to TCC, perhaps?  That paints a picture of a 50:50 treatment success.  When immunotherapy arrived on the scene in 2010s it was described as the "wonder drug".  Before it, RCC people were given RT and it wasn't very successful.   

I don't recognise immunotheraphy from the description you've painted above.  Yes, I'm one of the success stories, and they definitely don't present the "immune related adverse events" risk, and side effects well.  Also these are not well understood.  I also note you mention an auto-immune disease which I have no knowledge of how that interacts or impacts immunotherapy.  

I suggest you get a second opinion, or more.  Phone up the helpline here, read the articles about immuno on this site.  Ask your hospital to speak to someone else (same dept is fine) so you can get a balanced opinion.  Tell them blah was all doom-and-gloom and you want a more pragmatic discussion!  Is there a Maggie's near you?  They are great empathetic people there.  

Also prognosis can sometimes be just educated guess work.  I never ask, now.  Instead I read the room.  I was told 5 years, and 2 years without treatment in 2021.  It's difficult to predict how someone will react to the treatment.  These are very complex drugs.  What works for one person, won't work for another, even with the same cancer.  

You can read my blog here.

Please let us know how you get on.  Good luck.  This is the most difficult time with all the waiting and uncertainty. 

Best of luck to you and your husband too, thank you for reaching out.

Hi Mmum thank you for reaching out.

Immuno would be Padcev and Keytruda. Apparently it is quite a new pairing?  Yes I believe the 55% effective rate is based on the type of cancer Mum has which is very aggressive. And yes you are right they have to flag that bad side effects as risks but we felt like he had insinuated that perhaps she did not want to put her body through that. He is also aware that her chemo had to stop as they were worried about her remaining kidney and her heart. So perhaps his concern was not quite framed as such! 

Looking into Maggie's and also have a lot of stuff to read from this site - so useful. Will also have a read of your blog too - thank you for sharing, and really appreciate all of your helpful advice!

TCC is not a commmon one.  We get people posting here "anyone else?" seeking support and comparing stores etc.  If you use the search box you should be able to find them.  

Will do that too - thanks! 

Hi, if it is any help this treatment is very new and has been described as a breakthrough treatment for this type of cancer. The first new treatment for years. I think it was only cleared for NHS at the end of August. 

I would definitely get a second opinion or ask for your original consultant to talk you through it and explain why in more detail he thought your mum may not want to go ahead.

Maybe as it’s so new the consultant is not aware of which side effects listed will be likely to cause you an issue.

I wanted to have this treatment and said I would pay for the first two cycles before it became available on NHS - my consultant said that due to possible side effects private weren’t yet comfortable accepting cases and that NHS were more geared up to cope with them.

As with any treatment you will find a scary list of possible problems but most people will not have any serious side effects.

Definitely worth exploring.

Also this type of cancer can also come under the heading of UTUC rather than TCC. It is considered a bladder cancer rather than Kidney cancer and is very different from RCC. 

Hopefully this helps

Good luck

Rosie

xx

Hi Rosie

Ah yes if it is that new then I understand why there are a lot of unknowns. Did you end up having the treatment? x

Hi, 

No, unfortunately not - I missed the approval by about two months. My treatment couldn’t wait.

I do hope you manage to get some information though. You need to be fully reassured and informed before making any choices.

Good luck

Rosie

xx