High Grade UTUC Diagnosis

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Hi all and sorry you are all here :(

My lovely Dad (64) has just been diagnosed with high grade UTUC. It seems to be a rare type of cancer and I can’t find much about it - I am not even sure if I should be posting in the kidney or bladder cancer chat!

I am looking for people who have UTUC who wouldn’t mind sharing their stories with me?

Dad has a 7cm mass on his kidney. They were going to remove the kidney however he then had a PET scan and it showed that he had an active lymph node - due to the position of the node it can’t be removed ( it’s behind the aortic vein.
he now has to have chemo (oncologist appt) tomorrow to try and get rid of the lymph node issue and then surgery would be an option after that if he responds well.

if anyone has any experience with this type of cancer please reply, I’d love to chat.

wishing everyone well in their fight!
claire x

Bubble1 9 months ago in reply to Close encounter

Hi Rosie

Welcome to our group - not a group many people want to join but it's good to be able to chat to people in the same situation and it's made such a difference to me .

Annie has been really lovely and as she said we have had some great conversations and not just about cancer -

something else which is important too! She is a lot further along in her journey so talking to her gives you encouragement and hope

I have had a nephroureterectomy ,followed by Adjuvant chemo and have now just started on my road to recovery and it's been good talking to someone who had been down this route before me.

Like you it was very scary being diagnosed with this . I am sorry you have also had to deal with breast cancer before this

It's been tough because I live in Spain, so language is a problem too and the fact we live so remote and there hasn't been a lot of support here, I wish I had joined this online chat before , but only discovered it after I had finished chemo. I also have a kidney stone in my remaining kidney which has to be dealt with

I do hope you get some news soon about the biopsy and your treatment plan because as everyone has said once you have a plan it helps to focus . It's not an easy journey and so little is known about TCC or UTUC but having support from a group like this is brilliant

We all need to keep in touch and encourage each other !!

Close encounter 9 months ago in reply to Bubble1

Thank you, I agree, everyone in the group is lovely

It is nice to see some positive results. There is hope for us all in some way or another and sharing just makes the journey a little less difficult.

It mush be difficult being in Spain and scary to have a language barrier. Is the treatment still the same as others have had?

Rosie

Snake65 8 months ago in reply to Rusty Wedges

Hi Nick xx,

Sure. I was on Tislelizumab. I am living in China so this is a generic brand and much less than something like Nivolumab which I cannot afford. Did it work? Definitely not...yet? After about 3 months of use I did a CT-scan which showed a new tumor had grown (I already had a radical nephrectomy in June last year). Tried radiation but it didnt' work either. Now on combination of chemo and immunotherapy. Hate the chemo and my body does not respond well.

I hope that your treatment has been working out more positively.

Cheers

Bubble1 8 months ago in reply to Close encounter

Hi Rosie

Yes treatment is exactly the same here .The Adjuvant chemo I had was Gemcitabine and Cisplatin and I had the same schedule it seems as some other people on here that I have read about.

4 cycles of chemo -Gem/Cist first week and then Gem only on week 2 and week 3 off . I did this for 4 cycles so a total of 8 chemo sessions .

I think the thing that is so different here is the lack of support groups especially when first diagnosed which for everyone is when it's so tough and scary - and then of course during and after chemo, although I guess there are some around but of course everything will be in Spanish !

I do speak a bit ,but not enough and of course some of the Dr's and nurses speak a bit of English which helps but easy to get wires crossed and in a situation like this that's not good !!

Positivity is the way forward but some days it is harder than others !

Jenny

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