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

Clara84e 11 months ago in reply to Rusty Wedges

Great will send both you and Formula a private message with my Facebook profile and then I’ll set up a chat!

dad has found hearing your stories so helpful!

Bubble1 10 months ago

Hi Clara and everyone else on this thread !. Sorry to hear about your Dad Clara

I too, am one of those who was diagnosed with this rare cancer and it's so good to find people who are in a similar situation as like everyone has said on here it's hard to find others who have this

My oncologist told me that the cancer cells were not rare as they are the type of cells which are normally found in people with bladder cancer but it's rare to find these in the kidney??

Anyway, I live in Spain so the lack of support here from family and of course the language problem throughout all of this has been hard for my husband and I , but the medical care has been very really good

A little bit about my journey - I am 69 and we have lived in Spain for 20 years . I noticed some blood in my urine at the end of Sept 2024 . My local GP did a urine test and the results confirmed hematuria and a slight infection and I was fobbed off with antibiotics and told to drink more water. I was not told to redo the urine test when I finished the antibiotics or come back to see the Dr which I found odd

We also have private medical insurance here so I decided to go and see a Urologist to put my mind at rest - I am a bit of a worrier !! . He sent me straight away for an MRI which confirmed a 5cm mass on my right kidney and also a Staghorn kidney stone on my left! He said there was no point in doing a biopsy on the mass to see if it was malignant as because of its position and size it would have to come out anyway. He also suggested I have a Thorax MRI to make sure if it was malignant there was no spread to my lungs and this was clear

I had a full Neurofourectomy on 3rd December 2024 . I had my right kidney, ureter removed and a bladder cuff . Results of the pathology confirmed it was malignant and it was a UTUC

It had all been successfully removed and I had negative margins with no spread to any lymph nodes but they suggested I undergo 4 cycles (8 sessions) of adjuvant chemo which I started on 16th Jan . I had Cisplatin and Gemcitabine . I did find it quite tough and had a lot of nausea and fatigue but the drugs do help with the nausea

I finished chemo on 2nd April and have just started to feel normal again ! Had our first trip back to the UK at the beginning of May to see the family . My hair loss during the first 2 cycles was minimal but sadly I have lost a lot since.

I had my first full body scan a few weeks ago which was all good and am now waiting to have my first cystoscopy next week as this was delayed due to our trip back to the UK

Couple of other things - I ended up having a Thrombosis in my left arm due to the treatment and am now on blood thinners for that , plus I am also on iron as I am very anemic but apart from that I am feeling okay right now but waiting for the results of these future tests I know will always be hard . I also have to have surgery sometime later this year to remove the Staghorn kidney stone !

It will be great to be able to connect with you all .

Formula 10 months ago in reply to Bubble1

Hi Bubble1,

welcome to our very small group, am so pleased your surgery and chemo was successful, you can see my story to date by clicking on my name. You will see I had my chemo before surgery due to cancer being too large to operate, but I am currently cancer free and have just moved to six monthly cystoscopies and scans after two years of three monthly intervals. I was very anaemic after chemo and surgeon did suggest I may need to come in for a transfusion before op but luckily my body managed to sort itself out on its own.
I wish you good health in the future and keep in touch

Annie x

Bubble1 10 months ago in reply to Formula

Thank you for replying Annie . Your story has given me a lot more hope and its good to hear you are now on 6 monthly checks!! Did you have scans and cystoscopies every 3 months?

It will be good to keep in touch with you and the others in this small group - it makes you feel you are not alone as it's so easy to get up and down days

Not having family close we miss their support and we live quite remote which is lovely sometimes but can get quite lonely

Thanks for your encouraging words

Formula 10 months ago in reply to Bubble1

Hi Bubble1,

I have sent you a friend request so we can chat offline as well. Had cystoscopies every 3 months for 2 years and CT scans with contrast of chest, abdomen and pelvic every six months, my next checks are both due in August and if CT scan remains clear my consultant said I will be going onto annual scans! But cystoscopy remains 6 monthly for 2 more years

Annie x

Bubble1 10 months ago in reply to Formula

Thats great ! Thank you

Clara84e 10 months ago in reply to Bubble1

Hey Bubble

Your journey sounds similar to Dads. Blood in urine fobbed off by Dr as infection. Dad started chemo on Monday - first round of Gem/Cis. He will have 3/4 rounds and hopefully it does the trick and we can have the kidney out.

Annie and Nick were super helpful to me and Dad sharing their journeys and just for general support and advice. Their journeys also gave us a lot of hope. X

Bubble1 10 months ago in reply to Clara84e

Hi Clara - Thanks for replying . How did your Dad found his first chemo session?? I know everyone reacts differently but I do hope he is okay?

I had 1 long session with Gem/Cis and then a week later a short session of just Gem and then a week off before I started again and had a total of 4 cycles . It might be a different regime for him ??

It is good to have found others on here for support and advice

Snake65 9 months ago

Hi, I was diagnosed with the same last year. Tried adjuvant chemotherapy but my body wouldn't tolerate it well. They then did a radical nephrectomy. Since then I did a few months of immunotherapy but another tumor was found in December. Did 25 rounds of radiation therapy. A few months later, tumor started to grow again and now I"m back on chemo-immunotherapy with my body (blood) not reacting very well....it's a long journey. I wish you and your Dad well.

Close encounter 9 months ago in reply to Rusty Wedges

Hi Nick,

I think the cancer I have is the same? It’s TCC kidney cancer. I am due to have chemo at the Churchill, I am hoping this starts soon. The drugs you mention are the same as those recommended for me so hope I have the same level of success.

Do you go to any of the group meetings which take place in the Maggies centre. I just feel a bit overwhelmed with everything at the moment. But it’s good to be able to share experiences with others who have the same diagnosis.

I hope the treatment is going well for yourself and all those who have joined the conversation.

Take care

Rosie

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