Inopperable TCC in kidney

Hi  although I'm sorry we meet here.  We don't see people post here about TCC (transitional cell carcinoma?).  Sometimes they can't operate because it's in a tricky place or too small or too close to vital organs.   Is immunotherapy not an option with TCC?  

I had a bumpy ride back in May and I asked for a second opinion.  You can just ask your oncologist - that's what I did.  He was quite prepared to arrange a conversation with another oncologist.  But I wanted an opinion from pharmacology and had someone in mind.  But he helped to facilitate it.  

An operation is quite a Big Thing.  We've had the odd poster here who have had a nephrectomy and all the impact that entails and then the bu55er returns.  If your urologist is saying he can't operate they should be referring you to oncology?  My urology consultant told me I had cancer and then advised he would be referring me to oncology etc.  I haven't seen him since because I'm outside his sphere of influence now!  I'm stage 4 RCC spread to the lungs but under control from immunotherapy (started Jan 22).   

What about drug treatment trials for TCC?  Have you considered that, or asked your oncologist if anything is suitable?

Hi Jane, sorry, I can’t help you as I had my kidney out…..but just wanted to say hello and I am sorry that you find yourself in this position.

I would follow Mmums advice and see what is available treatment wise and consider having a second opinion,

Wishing you all the very best, let us know what happens

Brst wishes

Jules x

Hi Jane, sorry to hear about your TCC, I have it too but they are going for a nephroureterectomy, which is removal of kidney, ureter and bladder cuff....In your position I think I would definitely ask for a second opinion as to why they have ruled surgery out. All the best, take care.

Hels

I am sorry for your diagnosis.  I was diagnosed out of the blue with no symptoms non small cell lung cancer.  Can’t operate and can’t cure just keep me going with treatment.   I so feel for you and understand your circumstances.  I feel ok just now but everyone seems to want to plan ahead and I’m learning to plan just tomorrow or the weekend at a push.  Good luck .

Hi Jane, I am really sorry to hear about your very sad and serious condition. How awful for you. What I would say is that you can not possibly lose anything by getting a lot more information, exploring alternatives and a second opinion. It may possibly not help but being better informed does seem to help people here come to terms with the condition. That is a win. On the other hand maybe a surgical intervention may be possible for you with the outcome you wish for. Different surgeons and hospitals have varying levels of technical ability. Good luck to you anyway. I wish you all the best.

Hi Hels, 

just wandered how you are doing as I think we had the same cancer?  

Hi Formula

How are you getting on?

Dedalus

Hi Dedalus, 

I am doing well thanks, I had my first CT scan post op there weeks ago and my lovely CNS rang me Thursday to tell me no cancer found in my renal pelvis where cancer was and my lungs, liver, right kidney and lymph nodes are all normal!! I have a cytoscopy this Tuesday to check bladder still okay and if it is she said I will have another scan arranged in six months.

How are you doing? Have you had any current check ups? Or due any? 
I was so relieved with results as I lost my dad years ago to a brain tumour, it was an aggressive cancer and he was gone in weeks, he was 64 at the time, I will be 64 at Christmas and have always been aware of this age and wanted to get past it! And I now feel I will achieve this. I may have had an aggressive cancer and who knows what the future holds but for now I am clear

Hi Formula

It is good to hear that you are doing well.  I understand about your father.  My father died at 67 from a heart attack.

I had my final ct scan and cystoscopy this month.  I also had my very last consultation with my oncologist on Thursday. 

It was brilliant news regarding my UTUC.  I was being discharged after 6+ years.  The oncologist said it was not guaranteed, but unlikely the UTUC would return.  We were planning a mini celebration.

Unfortunately, there was also not-so-good news at the consultation.  A recent blood test showed a high psa, and there was something seen in the last ct in my prostate, that required further investigation.  I am awaiting further tests, and I may have another hill to climb.  Hopefully, it is benign, but if not, PCa is not the threat that UTUC was.

Carol Lucy must be around 11 years post-treatment, and I am over 6 years.   This should hopefully give you some positivity going forward.

I also believe you are starting from a better position than either of us.  Pre-surgery chemo is a better approach IMO.  Carol Lucy and I had lymph node involvement.  Carol could not tolerate chemo and had to discontinue before completion.  I was stage 4, and my prognosis was only 6 to 9 months.  So take heart!

BW

D

Hi Dedalus, 

Thank you so much for your reply and continued support, brilliant news re your UTUC, I hope I join you in the future. Am so sorry to read you have possible not so good news. Let’s hope if it is anything it has been caught early and can be eradicated quickly. Please keep in touch and let me know how you are.

As you say neoadjuvant Chemo is hopefully the way to go in treating UTUC, and the fact my oncologist signed me off once scan results received and before surgery was encouraging. Hopefully our cancer will eventually receive more funding to allow more data to be collected through pilot schemes, helping those in the future to know how others have fared in treatment.