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Allow me to introduce myself. I am a Japanese male, late 40's. My handle is ganfighter. In Japan, the meaning of ganfighter is a cancer warrior. However, it is a Japanese pseudo-Anglicism.
My Japanese blog is http://melit.jp/voices/fight/index.html.
I was diagnosed as having urachal carcinoma of the bladder, local extension into viscera other than bladder on April, 2007. It is so rare cancer that I could not get any useful Japanese information on the internet. So, I started using a search engine to find “urachal carcinoma” or “urachal cancer” outside Japan. Finally, I found Bladder cancer histology at Bladder Cancer Web Café. The information about Urachal carcinoma on Bladder Cancer Web Café was very useful for me. The internet is an important tool for patient empowerment.
Generally speaking, Japanese bladder cancer patients do not have a text book about bladder cancer. Personally, I think that Bladder Cancer Web Café is a text book for the patient. So, I have been working to translate the site into Japanese since May 2007, and I have also published a tentative Japanese translation of Bladder Cancer Web Café text website since then.
I had two TURBT, one laparoscopic partial cystectomy, three courses TS1+Cisplatin, four courses GC chemotherapy at Japanese hospital. After nine months hospitalization, I went into complete remission. I was discharged from the Hospital on Dec, 2007. I owe it to the information of Bladder Cancer Web Café.Unfortunately, three months later, on March 2008, my tumor marker CA19-9 increased extremely. So I had taken five times G&C chemo from April to Sep, 2008. On Jan 2009, I was diagnosed as recurrence of urachal carcinoma, with metastases to the peritoneum. The urachal carcinoma is a life-threatening disease with poor prognosis. I guess my life may be short.
Ms. Wendy Sheridan always gave me good advice and inspired me. Of course we also spoke about many other things through internet. And I wanted to meet Ms. Wendy Sheridan, I decided to visit her at her home. So, my wife and I went to Amsterdam to meet Ms. Wendy Sheridan on Mar, 2008 and Mar, 2009. We established "real" relationships.
Access to the information of Bladder Cancer Web Café can enable me to be more active in treatment and self-management processes. Bladder Cancer Web Café is one of the most important resources.
Personally I think that patients' desire to inform themselves and the availability of information through internet will continue to drive patient power.
|Last Updated ( Saturday, 25 April 2009 )|