Recent UTUC diagnosis; Examining treatment options

[Lewis]

UTUC Recent diagnosis following Aug 22, 2024 procedures: cystoscopy, bilateral retrogrades, bladder biopsy, bilateral ureteroscopies, ureteral stents, insertion bilateral.

Diagnosis : Tumour in lower 1/3 of ureter causing moderate to severe hydroureteronephrosis. Bulky, measuring 1.5 X 1.3 cm, not sure if muscle invasive.  Also discovery of a bladder tumour re-occurrance and it was removed. We do not know if the UTUC is high grade or low grade and do not have cytology yet. Previously had bladder cancer; and tumours were removed in 2021 (Feb/March) . Received full range of BCG treatments which ended in May 2023. Was clear of the bladder cancer, per cystoscopy of October 2023. I am a healthy, active male with no other health issues. Have never smoked.

Follow up meeting with Urologist Aug 27, 2024 and discussion of treatment options:

Two options are available: ONE option is available for saving the kidney as the tumour is low enough in the ureter to be able to cut the ureter off and re-attach to bladder (segmental resection or distal ureterectomy) . This would have to be an open surgery. We were very excited that this was surgically possible. The other option is nephroureterectomy- removing kidney and ureter and could be done laparoscopically.

We originally selected the first option, however we are not sure this is the best option without having the pathology results or knowing how aggressive this tumour is. In considering the possibility of , and risk involved with an aggressive cancer, we returned to the office today to request booking the nephroureterectomy. After we receive the pathology we can switch back to option 1, but may have to wait a bit longer.

In addition, we asked for a 2nd opinion today and got a referral to Princess Margaret Uro-oncology to help navigate the options. Hoping the wait to see someone won’t take too much time as time is of the essence.

Would be interested to learn of any available information to help with this decision, chemotherapy options and knowledge of doctors with whom to follow-up for 2nd opinion.

Have watched the video and reviewed the handbook posted to this UTUC topic.

 

 

 

 

[Nightingale]

Hi Lewis,

Thank you for visiting us in the Forum, and sad to hear about your situation.  After reading your information, and the fact that you’ve been referred to Princess Margaret, you may want to ask if there are any ways in which they can preserve the organs.  I’m thinking of a gentleman who attended one of our support groups and talked about a trial he was on to preserve his bladder despite his cancer being aggressive and muscle invasive.  I can’t guarantee anything, but it’s worth bringing up.

BTW, the gentleman who had his bladder preserved was physically fit and active.

I hope my co-moderators will chime in as one of them has experience with Chemo.

Sending you get well thoughts.

My best,

[Lewis]

Hi,

Thanks for the prompt response. I am considering all options for sure; I am hoping my consultations at Princess Margaret will put fewer doubts as to which option is best in my case. These decisions are never easy but, rather quickly, a decision must be made as time is of the essence. I am also curious with respect to having chemo or not; as well, if so, should it be before surgery or after? Certainly have lots to think about in the next 2-4 weeks–hoping it doesn’t take longer than this.

Any thoughts are worthwhile.

Thanks again!

 

[Nightingale]

Hi Lewis,

Have a look at this post by Joe, he compares his situation with another person’s (Chelsea).  I found this by searching Chemotherapy in the search field.

High-grade papillary urothelial carcinoma – Surveillance only

It may help you.

My Best

[Author]

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