Urachal adenocarcinoma

Hi Everyone,

I’m a 36 year old male living in Central Bedfordshire. I’m married with three children aged 7,5 and 3.

Having never been ill or been in Hospital in June this year I had an endoscopy after passing blood in my urine. During the endoscopy a Tumour was discovered on the back wall of my bladder.

In July I had the Tumour removed which was then sent off for biopsy. This is when I was informed that the Tumour was a rare form of cancer which was aggressive. The Cancer is known as Urachal Adenocarcinoma - it’s a bacterial cancer which formed in the Urachus. 

I was informed that the type of cancer does not respond to Chemo or Radio Therapy due to its aggressiveness. Therefore the best form of cure/prevention is to remove the Tumour and the surrounding area.

On 12th of a September I had a biopsy of the inside of my bladder where six biopsy’s were taken around the removed Tumour margin - These were negative.

To prevent the Cancer returning on 12th of October I had a Partial Cystectomy where half my bladder was removed as well as my Urachus. The part of the bladder which was removed was tested on the inside and the result was negative. At this time I’m still waiting on the result of the outside biopsy.

At this time I’ve not been able to find any groups relating to Urachal Adenocarcinoma or anyone with similar diagnoses.

This has come as a complete shock to me and my family and I am looking for support and friendship. As much as I’m looking for support I’m also looking to help others during this journey.

Paul.