UTUC Journey

Hi Formula 

I'm not a member of this group but I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list where it'll be easier to see.

While waiting for replies you could, if you haven't done so already, use the 'search' function at the top page to look for other posts which mention the type of cancer that you have.

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Hi Latchbrook,

thank you for your response, unfortunately it seems due to it’s rarity there is no one else here with a similar diagnosis, I did look up UTUC in the search and there has been nothing for about 4 years, the consultant said we are in unchartered waters as op only been possible in last few years hence lack of data.

Hi Formula, I am sure you have done so, but have you looked under TCC (Transitional Cell Carcinoma) as I believe that is an alternative name for UTUC.

Hi ChippyJ,

No I have not, but will do,

thank you 

Hello Formula,

I am sorry I have not seen your posts earlier, I was alerted via an email from the site. I am not a regular visitor these days.

In late 2016 I also found I had TCC in my left ureter which turned out to be two tumours. They had ultimately blocked the passage of the kidneys output which consequentially damaged the kidney irreparably. The operation was then termed a "Nephroureterectomy with open lower end", possibly a hybrid procedure which entailed traditional and laparoscopic incisions. Robotic surgery was not offered to me, the surgery I did have was the first treatment I received and chemo was never mentioned.

This is my first year without CT scan follow-ups but annual cystoscopy checks continue. So far I have had no recurrence in the 6 years since my diagnosis.

Please feel free to reach out. I imagine my experience may be a little out of date and my treatment path seems to differ from yours but happy to chat/reply

best wishes,

ian

Hi Ian,

great to hear from you and also so good to hear you are doing well. Yes I think treatment paths are evolving all the time, my surgery involved removal of kidney, ureter and a bladder cuff, I had chemo pre op due to the size of cancer, as they said it was inoperable, chemo did the job and shrank the cancer to allow the surgery to go ahead and I also received a dose of chemo in the bladder a week after op when catheter removed.

Were your margins clear post op? I have managed to chat with one other person who was also diagnosed at a similar time to you, but it seems it is such a rare cancer there are no other current cases. 
it is just so good to hear you and Dedalus are doing well six years on, it makes me feel much more positive about the future.

thank you 

I have not seen the term 'margins' used before forgive me, I had a quick look up to see what it is describing and I cannot recall if it was ever mentioned but perhaps the following is equivalent. The consultant removed several lymph nodes at the same time as everything else, they were all clear and although it is only from memory I don't think the staging was above two on either tumour.

I am also very pleased to hear Dedalus is well, he was a great support with his knowledge in the early days of my journey.

Haha, I also had to look up margins!! I became confused with positive as thought that was good, but realised clear is what you want! 
I have been told mine was a grade 3 T2 of the renal pelvis.

Yes, Dedalus is doing well and at the same stage as you regarding check ups.