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,
Sorry to hear about your situation. I am undergoing chemo at the moment after having 2 tumors removed from the ascending colon. 5 lymph were also found to have cancer cells.
Next to treatments recommended by McMillan and the NHS specialists I am doing a form of qigong (Zhineng Qigong) - its a self healing qigong, very effective and overall helpful for mind, body and spirit. Its available on line and if interested you can try out free sessions on line daily under bigqifield - free daily classes at 12.30pm. I had the privilege to be on an intensive healing course for 10 days with them befor and after the operations and I must say I have never felt better. It helps with morale, too, I think.
Anyway, I thought I let you know there is alternatives out there that can help, of course, not only this type of qigong.
I wish you al lthe best and maybe I will see you in the healing sessions or daily exercises. If you have any further questions I am happy to answer them.
Love and light
Christiane
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
Thank you for this information Christiane, I will have a look at the therapy.
Hi,
iIm a 51 yr old female, recently diagnosed with Urachal cancer.
i was initially diagnosed with bowel cancer in March this year, after having a colonoscopy. It was very obvious during the colonoscopy that it was cancer.
i had a CT scan the following week where it was also discovered I had a urachal cyst. I was told they are very rare, and can also be cancerous.
May 2nd I had an anterior resection to remove the bowel tumour and a partial cystectomy to remove the urachal cyst.
The histology results have come back as Adenocarcinoma for both my tumours, but the urachal results were still a “bit weird” so have been sent off for more testing. There was cancer in my lymph nodes and blood vessels from the bowel area too.
At present I don’t know if I’m stage 4 bowel cancer and the bladder one is a met from the bowel but as the cancer was in a urachal cyst, it’s unlikely to be a met, so it’s more likely I an stage 3 bowel and I actually have two separate cancers. Not sure on the staging of the bladder one yet.
i have my 1st oncology appointment on 26th June, as i will be having chemo, somwe will find out more then i suppose.
like you, I’ve found it difficult to find information on urachal cancer, but what I have found is that it is aggressive but chemo is still an option. I could only find one study that showed a 34% success of 5 yr survival with chemo, but there were only 51 study cases involved.
Hi Lizz74
I too have just had a Urachal cyst removed along with a massive ovarian cyst that both came back as being cancerous with Mucinous Adenocarcinoma.
My urolorgist also did a partial cystectomy as it had gone into my bladder T3.
I am now waiting for an oncology appointment as when they have discussed my case in MDT they told me they quite simply didn't know what to do at the moment and have put me on 3 month ct scan surveillance.
I don't know the stage of mine yet and find the waiting and the not knowing the hardest part.
I have also spent ages looking online and found various different outcomes but I am trying to stay positive until someone tells me otherwise.
Good Luck with your treatment.
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.
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.
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
One of the consultants I have had said it was too much of a coincident to be two seperate cancers considering the rarity of it in the first place.
I am hoping the oncologist can tell me so much more.
I think we should start our own thread so we can keep chatting together x
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