Hi

I would be interested to know how your diagnosis and treatment went?

I am 49 and was diagnosed with urachal remnant adenocarcinoma in April 20.

I had a successful partial cystectomy and have just been given the all clear. 

However I'm aware that this cancer is very rare and aggressive, and not much information on UK case studies. 

Kindest regards

Kara

Hi, sorry to hear you have been through something similar. I had my surgery in January and was given the all clear in feb so now just on a monitoring programme with CT scans and cystoscopies. 

That's great news, so pleased to hear you are recovering well. 

Same for me cystoscopy and MRI/CT to monitor.

Take care

Hi

I'd be interested to know the success rate of this treatment in others?

I'm 2.5 years post partial cystectomy my cancer had already spread to my lymph nodes. I was diagnosed with stage 4 incurable cancer in January 23 as the nodes did not show any change in check up scans.

Thanks

Hi, has anyone got more information on this? My partner has a mass near his small bowel, but his bladder is still in good capacity. He is due to have the  urachus mass removed with a partial cystectomy. 

Hi, information on this cancer is very limited there is virtually no info at all, the case studies are older and mainly in the US. Chemo treatment I had for 5 months, had not been softened like more common treatments so it was brutal. I hope everything goes well with his surgery and he makes a full recovery.

Thank you for your response. What are they saying about your prognosis? My partner had a CT scan & had a reaction to the blue dye & got acute renal failure from it. Due to the various blood tests & scans he had previously we know he’s kidneys were healthy before the scan. 
He was due to have the operation in mid June, but not sure if it will happen due to his kidney issue from the dye.

Thank you for your response. What are they saying about your prognosis? My partner had a CT scan & had a reaction to the blue dye & got acute renal failure from it. Due to the various blood tests & scans he had previously we know he’s kidneys were healthy before the scan. 
He was due to have the operation in mid June, but not sure if it will happen due to his kidney issue from the dye.

Sorry to hear that. I was diagnosed with urachal remnant adenocarcinoma in April 2020 which is when I had my partial cystectomy and no further treatment, just scans to monitor. Then November 22 I had pains in my back and after a CT they found my lymph nodes had enlarged. I had a biopsy and the cancer had spread before my operation but it had taken 2 years to show. My cancer is incurable so it's still scans and treatment to give me more time. 

Sorry to hear that KStanley72  , my partner  had blood in his urine 2 years ago, as it went away no further investigation was done. The Urachus remnant was only just discovered a few months ago as he began to have blood in he’s urine again. We still have hope it’s not cancer, but from what the surgeon believes it probably is, we won’t know for sure until the biopsy. 

That was my first symptom in April 20. Let me how everything goes, I'm hoping surgery etc is a success.

Thank you. 

Hi, my partner had his surgery, they removed 5cm from his small bowel aswell. They still have not confirmed whether it’s cancer, but do they normally take some of the bowel? I just thought it was the bladder? 
Thanks in advance. 

Hi glad surgery went ok. I've never heard of that, but I guess they've done it as a prectionary measure. 

I hope he recovers well

Hi, did you get your biopsy results from a nurse or doctor? 

I did, everything is stable for now. How is your husband doing?

He’s ok, just waiting for the results x