On 5/18/2008
Gotafight wrote:
Hi folks, i have just been diagnosed with Urachal Adenocarlinoma and to be honest i am in shock.. I am fortunate apparantly as it has been diagnosed in its early stages and is localised in the bladder and my medical team are reccommending a RC as the "Gold Star" treatment..As it is in the early stages they are wanting to move along fairly rapidly and unfortunately i am in a country where i need to rely on the Public Health system as i am not in a financial position for private care.. Two weeks ago i was given the good news that they were confident that they could get a good result with a partial cystectomy, now they are recommending a RC and have given me the option of a Neo Bladder or an Illeal Conduit.. I have done some research on the net and to be honest i am frightened at what i have read and as time doesn't seem to be on my side i am trying to make a decision within their time frame.. Can anybody help with usefull info or advice or personal experiences.. My medical team do not do as many Neo bladder operations (as they are not common in my country) as in the USA and advised me of numerous complications with such surgery.. I know the best answer is the RC but i am concerned of the emotional tribulations that will follow such surgery...
Thanks Gotafight
I don't know where to start to even try to make you realize that you probably have only one chance at making the right choice. I know because i had to make the exact same choice you are faced with. Yes! same cancer. I had half my bladder removed, doctors felt it would be reasonable to save half and I was so happy with the news. 2 and 1/2 years have past and there isn't a day that passes that I wonder if I would have been better off if they had taken the whole bladder. I really feel this cancer can't be judged by looking at a CT scan and seeing can spare half your bladder!! Doctors removed half my bladder and sent some lymph nodes for testing it came back with the news that it had already spread!! I was then sent to a bigger cancer center in hopes of some kind of treatment. I was told I would need another operation to remove the whole bladder and all female parts and as many lymph nodes they could get out. The operation stoped as quick as it started when they found small seedings and the cancer was back at the site of the first surgery. Not what I had expected to wake up and hear!! I now have been on chemo
for 0ne year and 4 months with many failed treatments. Currently i am in a clinical study with experimental drugs because there isn't a chemo that works for urachal cancer.
I actually don't want to scare you but i wish I had had someone that could have told me what to expect from this rare cancer. My advice is get it out of your body and get on with living. You might find a lot of answers to some questions about bladder cancer or maybe a neo baldder at blcwebcafe.org it is a great place to find out wheter you should get the neo bladder. But I feel so strongly that losing your bladder is a small price to pay to keep on living.