Transitional cell carcinoma of the ureter

Your post was not a problem Sparky.

My reply was just to clarify the treatment distinction between RCC and TCC/UTUC, so that there was no confusion.

Hi,

It’s like a mine field trying to find people with the same diagnosis.

Here goes - My Mum was diagnosed May last year, went straight onto having a Radical nephrectomy. 

pT4N2M0

Followed by x4 chemo cycles of Gem/Cis, which were stop/start and not actually fully completed due to side effects. CT scan straight after all clear.

3 month scan after that (last week) 4 new tumours discovered, in her neck and adrenal gland. I’m heartbroken.

Now classed as incurable, we have an appointment next week to discuss immunotherapy.

What stage of treatment are you’s at now?

Thanks 

Danielle 

Hello Danielle 

You may have found out by now that your mum has one of the rarer forms of kidney cancer.  There are very fewTCC/UTUC patients on this or other sites, and particularly of the ureter.

When you are researching you may find more information under the heading of Upper Tract Urothelial Carcinoma (UTUC).  Have a look at the European Urology Publications.

Up until very recently the treatment was essentially surgery, chemotherapy and radiotherapy.   Immunotherapy has become available.  Look at Keytruda (Pembrolizumab).  It was previously used for malignant melanoma and lung cancer.  Your mum can have her already removed tissue tested to see if she is a possible responder.  Responders have apparently done well on Keytruda, some with quite advanced metastatic cancers.

Most cancers are classed as incurable once they have metasticised.  The N2 in your mum's initial diagnosis indicates that position prior to the recent tumours.  I think there are some who were both N&M who have gone on to make a full recovery due to immunotherapy drugs, so don't lose hope.

Investigate the possibility of high intensity targeted radiotherapy also.  If the new tumours can be surgically removed then that is also advantageous.

Dedalus

Hi

Just sharing that im a 37 year old female and i had stage 3 high grade tcc of the right ureter too. That was june 2016. Nephrouretercomy followed by mvac. Pet scans every six months have been clear so far. Next one in June will mark 2 years.... im still petrified of it coming back.

I most likely have Lynch Syndrome which helps explain rare diagnosis in an even more unusual person  (young healthy non smoking female)

How is your brother now? 

Take care 

Hi Ngyhp.

Here is a link that has a lot of information regards UTUC  and TSS Cancer 

Hopeso