High Grade UTUC Diagnosis

Hi Claire,

I have responded to your request on bladder cancer forum. Am sorry to hear about your dad, I was also diagnosed with high grade advanced UTUC with possible nodal involvement in 2022. It is a rare cancer and I struggled like you are to find where I belonged (bladder or kidney cancer) I was told by my CNS it technically comes under bladder cancer. You can read my story to date on my profile. 

Annie x

Hi Claire,

Really sorry to hear about your Dad :-(

This is the cancer that I have  - although I am confirmed stage 4 high grade UTAC which has spread to the lymph glands and also my lungs. It is really difficult to find people who have had similar and I flip between Kidney cancer and bladder cancer forums.

You can read my story on my profile but I am currently on an immunotherapy regime (Avelumab) having undertaken 6 rounds of chemo (cis/gem). The preferred chemo treatment for this type of cancer, if your Dad needs it, is quite hard on the body (Cisplatin) but does appear to work and reduced the size of my primary tumour by 70% (my tumour was 7cm long as well).

My oncologist does not want to consider surgery for me unless all the nodules on my lungs disappear so how well I react to the immuno drugs is going to be key. I have only just started on these so will not be scanned until the end of July.

I wish you all the best as you fight this.

Nick

Hi Nick,

yes dad has been told he needs to start Cis\Gem in the next few weeks and has been told it’s a tough one. Were you pretty able to do usual things during treatment or were you too sick? 
Did the Cis/Gem get rid of the lymph node cancer fully? 

wishing you the very best for immunotherapy. Let’s keep in touch it’s so hard to find people with similar cancers. I have found one lovely woman here Annie who’s been super helpful and answered all my questions.

where are you based and having your treatment? We’re based in Cheam and having treatment at the marsden.

claire 

x

Small World!! I grew up in Cheam (lived up at the far end of Sandy Lane, past Northey Avenue). Currently living in Buckinghamshire and getting my cancer treatment in Oxford (40 mins away by car so not too bad) as that is where my Oncologist is based.

Ref the chemo - I was on a 3 week cycle (week 1 Cisplatin, week 2 Gemcitabine, week 3 recovery week). It was only the Cisplatin week that was a challenge with chronic nausea, which wasn't much fun. Overall though, I could do most things during treatment. I also got some slight tingling sensations in my feet throughout but not at a level that was anything other than mildly annoying.

The good news is yes, the chemo cleaned up my Lymph nodes. I still have 6 small nodules on the lungs which are the problem (although the chemo shrunk those as well) but no visible cancer anymore in the Lymph nodes which is great news.

Let's defo keep in touch.

Nick

Oh my gosh super small world! We are just off the Malden Road! 

sounds like dads chemo regime will be similar however he now has to have a biopsy as they’re not 100% sure what type of tumour it is now and which sequence the treatment will go in! 

great news the chemo worked on the nodes! Hope the immunotherapy works on the lungs! This C is a big old b@stard isn’t it! 

keep me updated with your treatment and wishing you all the very very best! 

This is so good to finally connect with others, I have been on here for two years now and only found a couple of people with UTUC! 

Hi Nick, 

So good to connect, I have read your profile, I am based right on the south coast, can I ask if you still have tingling in your feet? My right foot especially still has a numbness on the ends of the toes two years now since chemo. I hope the immunotherapy is a success for you in the months ahead to allow surgery 

Annie x

It’d fab isn’t it! Formula  - reading everyone’s experience is so helpful and hopefully we can share lots of good tips and tricks. If you and Rusty Wedges are keen we could set up a Facebook or watsapp chat together? X