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.
Hi Paul and a second welcome to the online community
I'm very sorry to read that you have recently been diagnosed with a rare form of cancer. It must have been a shock to you and your family, coming completely out of the blue like that.
I can see that you've already joined the bladder cancer group which is a great place to ask questions, share experience and get support from other who have bladder cancer.
x
"Never regret a day in your life, good days give you happiness, bad days give you experience"
Hi Lizz74
I’m Anne, one of the Community Champions here on the Online Community, and although I've had different cancer diagnoses to you I know how much I wanted to connect with others who had the same diagnosis.
You probably didn't realise but the post you've replied to is by a former member so unfortunately you won't get any replies from them. However, I can see that you've already joined the bladder cancer group where there are others with urachal cancer.
When you feel ready you can start a new post there to introduce yourself and ask questions.
It would be great if you could put something about your diagnosis and any treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
Hi Kit54 and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.
I’m Anne, one of the Community Champions here on the Online Community, and although I've had different cancer diagnoses to you I know how hard waiting for results and a treatment plan can be.
The online community is divided up into different support groups so can I recommend that you join the bladder cancer group as that's where the majority of people with urachal cancer are posting.
To join, just click on the link I've created and, once you've joined, you can start a new post and join in with existing conversations by clicking on 'reply'.
It would be great if you could put something about your diagnosis and any treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
Hi,
Do they think it’s two separate cancers or has the urachal metastasised to the ovary?
I hope they can find more information about it all for you, and you get a treatment plan sorted soon, it’s so horrible being stuck in limbo isn’t it 
They have had several MDTs about mine and sent them off for testing at a specialist place. It’s been a cause of long debate.
I had my oncology appt yesterday, They think mine are separate, so just bad luck to get two. Both mine are T3, also in lymph nodes and blood vessels. I’m going to be starting 8 cycles of CAPOX in about 3 wks.
I hope things go well, please let me know how you’re doing.
all the best 
