In this Blog Post
Community News

Welcome to What the UTUC

1 minute read time.
Toulouse4ff1cd

Today I joined the Online Community at MacMillan Cancer Support.

I have just recently been diagnosed with Upper Tract Urothelial Carcinoma - that rare 1% of upper urinary tract cancers.  Being in a rare and small group means a number of things:

  • There are fewer posts and entries within the online community to view or share
  • There may be less research and information available for this rarer type of cancer
  • With smaller numbers of patients and data, research is more difficult and not as conclusive as for other cancers

Anyway, I have decided to start a blog, this blog!  I am not a blogger/vlogger/influencer, but I thought it may be cathartic to write some musings about my journey and share my experiences and frustrations.

Having set up the blog, it looked barren, with No Posts being very prominent, so I thought I will have to create a Welcome Post to shout out I AM HERE!

So hopefully I will share some information that you may want to digest, agree with, disagree with or just shout What the UTUC!!  You may also have UTUC, or be a carer or family member/friend of a patient - it would be nice to know if someone else actually reads any entries on this blog, or shares an experience.

So if you are reading this, a big welcome to you.....and a big hug.

St41

  • Hello! My mom was just diagnosed with high-grade UTUC too. She just had a nephrectomy and is now waiting for guidance on next steps. 

  • in reply to Trixie22382e81bf

    Hello Trixie,
    Thanks for checking my blog.  I need to make a few more posts.  UTUC is rare, and there is no forum here, so I started a blog.
    I hope your mom is recovering well.  Although it has been a few months since my diagnosis, I only got my surgery date last week - for Dec 30th.  So your Mom will be more experienced than me!

  • Hey I'm going In on Monday for a ureterscopy for a filling defect at pelvic brim of my ureter. This is the second attempt as the first attempt they could not get the scope past narrowing at the bottPray of ureter but it was reported no signs of cancer from the area they could see and placed a stent. I have found it very difficult to get any information aswell which is frustrating. What were your symptoms and age etc. I'm a 42 year old female. 

  • in reply to Missmummy5b0f14a

    Hello, and thanks for passing by my blog.
    I am a 54 year old male and otherwise healthy.

    Firstly, good luck with your surgery on Monday!  I will also be at the hospital on Monday for CT scans prior to my Nephroureterectomy later next month.

    In relation to symptoms, you can read my blog post about that - it wasn't the Ribena Berries!

    My lesion in the mid ureter caused Hydronephrosis.  Basically that means that the lesion was blocking the flow from the kidney to the bladder and the build up of fluids behind the blockage was causing enlargement of the kidney.  The JJ stent was installed to keep this open and since then I have had no pain in my flank and the lethargy and tiredness has gone.
    You mention that you also have a blockage, so I suspect your stent has the same function.  Did your symptoms alleviate after having the stent?

    Prior to having the Ureteroscopy, I had a CT scan.  You probably had one too?
    The ureteroscopy was to get a more detailed view and I also had a biopsy taken at the same time.

  • in reply to Missmummy5b0f14a

    Hi
    I have made a blog post about my ureteroscopy - see link attached.
    Ureteroscopy Blog Post

Help us do whatever it takes, because we’ve never been needed more.

© Macmillan Cancer Support 2026 © Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company number 2400969. Isle of Man company number 4694F. Registered office: 3rd Floor, Bronze Building, The Forge, 105 Sumner Street, London, SE1 9HZ. VAT no: 668265007