TCC / UTUC of Kidney (Renal Pelvis)

Hi guys,

Sorry to hear you are going thru bad times, I hope you all have good news in the new year and the oncologists sort out problems you are experiencing, try to stay positive sending you all best wishes, Happy new year to everyone on the community sending hugs and best wishes Sandy xx

May I ask what the letters stand for ?

my mum has transitional renal cell carcinoma and this is a rare cancer and struggling to find information.

Hi mitch1972, 

Sorry to hear your mum has a cancer diagnosis, just checking you are asking about UTUC? It stands for upper urotract urolethial cancer, this is a rare type of bladder cancer that due to its rarity the data is also rare with knowledge moving forward. I have managed to contact a few since diagnosis and feel reassured treatment is moving in the right direction. 
 Hope your mum is doing okay?

take care and feel free to ask anything 

X

Hi 

my dad has just been diagnosed with TCC/UTUC, we are waiting for the 1st appointment with the Urologist on Monday. 
It was found after he broken his shoulder. The MRI/CT scans have shown lesions in all of his bones. Including his skull. So they have said it has matasisis to the bones. So we are assuming it’s Grade 4. 
We don’t know if it is anywhere else until the appointment. 

as others have said really struggling to find others going/been through the same. 

And all Info says about the bladder but his is the left kidney so can’t seem to find enough info on it. 

Sorry to jump on your post. But any help/advice would be greatly appreciate 

Hi, 

• Sorry to hear about your dads diagnosis, UTUC is confusing as like you I was unsure where it stood in the bladder/kidney cancer diagnosis. My CNS confirmed it is classed as bladder cancer as part of the urinary tract. 
  I did manage to have contact with a couple of people who have been clear for a few years now following treatment/surgery. 
  if you click on my name you can see my journey to date. 
  I hope your dad’s appointment helps on Monday with going forward, and future treatment plans, try not to worry too much as even when possible stage four it seems new treatment are arriving all the time, there are many on here who are living with stage four cancer. The main thing for now is try not to google symptoms, my CNS used to say stick to McMillan or CRUK if you feel the need to source info. Feel free to ask anything as we are a very small group with UTUC.
• take care 
• Annie

the consultant says its transitional renal cell carcinoma tumour in left kidney had surgery to remove kidney urinary tract and bladder cuff also blasted bladder with chemotherapy while under. it has spread to her paraortic lymp nodes and it's terminal just depends where it wants to show itself in the body. it's been 2yrs 2 months since finding it had spread to lymph nodes. My mum had vaginal bleeding this morning so I'm quite concerned (can it spread to the bladder ? ) hence bleeding, which has stopped but we need to get urine test to doctors in the morning to see if just urine infection or if its cancer progressing. consultants don't seem to really be bothered has it's all about keeping mum comfortable, surely it would make sense to see what's happening in her body scan etc so they can keep her comfortable  becauae she has dementia so struggles to communicate its all visual clue's. My mum did have 1 round of the same chemotherapy but got pneumonia and sepsis and only just pulled through so no more allowed.

michelle x

Hi, thank you for replying. 
As it had gone through the bones they first diagnosed him as having Multiple Myeloma. And having been through leukaemia myself I new where we stood and understood the terminology. 

Then we he had more scans they throw this curve ball! I cope by learning everything I can so that I can fully understand the terminology and process of things (a little ocd) but my dad has been there for me through my own journey the last 5 years. I want to be there for him and help him understand 

thanks again

H Michelle, 

so sorry to hear about your mum, especially sorry to hear she also has dementia which is an incredibly cruel illness. I really hope they can test for cancer progression asap and also continue to keep your mum comfortable and calm.

take care

Annie x

Hi, 

Sorry to hear you have already been in the system on your own journey, it must be particularly difficult for you. I can understand you are trying to find all the information you can, am not sure if you are on Facebook because I found a UTUC support group on there where there is a lot of information, it does seem to have mainly overseas members but it is also interesting to read the different approaches to treatment.

Annie x

Hi

Iv tried to look for a Facebook group. Do you know the name by any chance? Again. Thank you for the help and support