I am newly diagnosed with urachal adenocarcinoma - its early days and I would appreciate being able to type/talk with others who have experience of this kind of cacer in particular - or those with invasive BC.
Well you've got a rare one and i don't know where you are located but will tell you the surgeon you pick is crucial to success. I can help you there.
Urachal cancer does not seem to respond to treatment for bladder cancer, but recently there seems to have been more success using chemotherapy regimes used for bowel cancer. Surgery is also used, sometimes with partial or full removal of the bladder, urachus and any cancerous lymphnodes. As this disease is so rare it is difficult to find any recent statistical information covering a large sample of patients, but there has definitely been progress in treatment and people with urachal cancer have been successfully treated .
Let me know where you are located so we can find you the best specialist.
thank you so much for your offer of help in locating a surgeon - however I live in the UK not USA - I have googled the new one I have been assigned - he has lots of qualifications and works in a well respected cancer treating hospital. Time will tell..
Over the past few days I have met other other people with similar conditions to my own - over the internet of course - and it has been great talking to them - where would we all be without the world wide web.
Once again may I say thanks for your kind assistance and I look forward to getting to know both yourself and other people on this forum better
We've had many who are from the UK on this site...some have used The Royal Marsden, The Christie, Markey.....
But it sounds like your uro really is up with the latest treatment for this rare cancer wherever he is.
Hello Dixie... If I understand your post correctly, your adenocarcinoma has been caught fairly early. That is good news in midst of an otherwise storm of shock when you first hear any kind of cancer diagnosis.
My adenocarcinoma was at the bladder dome but did not involve the urachus, so I can't add anything to that specific discussion. I had a partial cystectomy which removed the wall section around the tumor site. Mine was caught relatively early at 1.6 cm. He also removed the urachus and some lymph nodes which were all clear.
I hope you will let us know how things go as you talk to your uro about your treatment plan. This is a wonderful site for moral support as well as information.
Best wishes... Catherine
Forum Moderator Team
TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Today I had a phone call from my original surgeon - he confirmed that report I had received - it was a true urachal adenocarcinoma - it was working its way into my bladder.
As the original scan was done back in March for other reasons - the tumour was not reported for three months due to a technical oversight - but once it was this surgeon acted quickly (well quick for the NHS system in the UK) that is why I have only just found out the diagnosis.
AS the origianl scan was only focused on the bladder and this was an incidental finding - I have to have more scans to stage the tumour - he is not sure if it is a single primary - a primary that has infiltrated other areas or a secondary from a tumour in another location - but these scans will be done quickly and he tells me I am now under the top uro-oncologist in the city - thankfully he will still be part of my team - he is very nice.
The way forward will be chemo and/or open surgery depending on what the other tests reveal - if surgery the top half of my bladder will be removed along with the urachas.
Which brings me to your point Catherine - thanks for sharing the benefit of your experience - do you mind telling me how your bladder now functions and how much was removed. I noted the size of your tumour - maybe the degree of removal is related to the size - mine was 5x3cm back in March.
I already have MS which affects the nerves of the bladder so am quite keen to know how things are post op
thanks both and I noted the mention of emotional support - it is a bit of a rollercoaster ride.
I am not just here to receive - I have a listening ear and am happy to try and help you too
hope you are both having one of life's better days