TCC / UTUC of Kidney (Renal Pelvis)

Hi Formula,

 I see no one has got back to you yet so I am answering to bump you back, sorry I can’t help you with this as I have no experience of this condition but hopefully someone may be able to give advice regards Sandy 

Hi Sandy, thanks for reply, yes it seems no one else on here has the same  and it is a rare cancer. I had 3 cycles of gem/cis Chemo to try and shrink advanced localised cancer, and responded well to chemo, this allowed radical robotic nephroureterectomy to go ahead. Have just had meeting with surgeon who said cancer residue was in kidney but margins are all clear so that is good, but he said we are in uncharted waters as this treatment has only been available for a few years so there is no data to back up moving forward. 
Am hoping for someone else to have had same diagnosis to compare, I will be having a scan in August to check all okay and also a cytoscopy to check bladder remains clear.

thank again for replying 

Husband has TCC

Hi Formula

it is my husband who has recently been diagnosed with TCC. He is having an absolutely shitty time. At this stage he has gone through the operation to remove the offending nasty, he even gave it a name, Ivor the nasty! He had a mixture of laparoscopic and open. Had a double whammy that 2 weeks after the op he coughed, his wound burst open and his bowel escaped. Drama worthy of an episode of casualty. He then spent the best part of a week in ICU. I have him home now though. 
We were told by the consultant that the cancer is aggressive, that it had started to come through the wall but there were clean margins and no evidence of spread. He also told us that chemotherapy wasn’t an option as the oncologist the surgeon spoke to said he was too high risk. His kidney function had gone up after the first op but had dropped after the second. He is also diabetic. 

Oh dear this message is becoming a novel. We haven’t spoken to the oncologist yet. Btw my husband is 65. I have so many questions. 

Hi hshoey, 

Oh my goodness your husband has certainly gone through it, I hope he is continuing to recover well. Not sure if you have read my profile as it details my journey to date. 
it is really good news your husband had clear margins and no evidence of spread, my margins were also clear after my op which was brilliant news, I was given chemo due to the size and spread of my cancer and an op was not possible unless the chemo did it’s job. Mine was also an aggressive cancer but I am feeling positive now that if it did return it will be picked up sooner. 
I have no medical knowledge but would imagine being diabetic adds to the situation of how to deal with it re Chemo?, I was lucky my right kidney was in good health and there was no issues with its function so having chemo as neoadjuvant was possible because both kidneys together could cope.

xx

Hi there! My husband was diagnosed with UTUC this summer----  having other folks to talk about it would be amazing as this whole process has felt like endless rounds of shitty last minute left turns.

sending so much love to you and your husband. my husband and i are in a similar situation and it is so stressful.

Hi Devon1

So sorry to hear about your husbands diagnosis, you can add your story to date on your profile if you wish. I struggled a lot to start with due to lack of information regarding UTUC on here, but after posting, people were very kind and suggested a few options and I did have a couple of people from a few years ago, also with UTUC contact me, which was amazing as I didn’t feel alone anymore, but more importantly I was encouraged by their journeys. Please feel free to ask anything, I continue to do well and have my next cytoscopy checkup in six days time (happy new year hopefully!)   

Take care x

Hi, sending the love right back to you  

Things have been a bit up and down since my last message. So many things have gone on and such a rollercoaster of emotions. I stopped looking for answers to my questions as I very often didn’t like what I was reading and felt sick to my stomach. 
My husband had another stint in hospital, his lungs filled with fluid, his whole body filled with fluid, those night sweats that we were trying to get an answer for, suggestion now is that they were his bodies way of trying to get rid of the excess fluid the kidney couldn’t cope with. They put him on a diuretic which has hammered his kidney function but the strength is now being reduced however he has also been taken off his metformin so keeping his BS in line is proving hard. He is type 2 on insulin. 
The last few days he has really perked up, so much so that I see the man he was definitely returning. The next hurdle is oncology on 24th. He has a swollen lymph node, they say it may just be an infection but might be a nasty. Chemo off the table for preventative so fingers crossed it was an infection. 
I hope you find the answers and support on here that you are looking for, I know I have found this hard emotionally and really sympathies with anyone going through this. Hopefully the new year will give us better answers and be kinder to us.