Urachal adenocarcinoma

FormerMember
FormerMember
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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.

    • Whereabouts are you based? I’m in Nottingham. When is your oncology appointment? 
      The surgeons have said the reports indicate it’s two separate cancers as they think I’ve had the bowel cancer for about 10yrs and Urachal cancer is faster growing and more aggressive so would have been a lot worse if I’d had that 1st, and then it metastasised to the bowel, and they don’t think it’s possible that the bowel cancer metastasised to the bladder as it incredibly unlikely it would have just gone into the cyst.
    • But the oncologist said yesterday that as far as he’s concerned it doesn’t make any difference where the cancer has originated from if it’s two or one that’s metastasised as the treatment plan is still going to be the same, so he’s treating me as a stage 4 patient and I’ll be having a heavy treatment plan as the Urachal cancer doesn’t always respond well to chemo so it needs to be treated strongly. 
      my current diagnosis is T3 N1b M1a V1 G2 R1 
      I did ask long term prognosis and what he told us wasn’t that great, but they make so many advances all the time and I’m a tough cookie. I’m prepared to go through hell to be around for my kids xx