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I was diagnosed with urachal ancarcinoma on December 14th of 2020 after successfully having the 2 cm by 2 cm mass removed. I subsequently had half of my bladder removed and all of the surrounding lymph nodes. Margins were good but was still started on a six month round of oral chemotherapy? I don’t know if this is the right place to post this , but have not found very much literature or studies on this said type of bladder cancer. Thank you for any help.
Hi KrisD
Yes from what I have read urachal ancarcinoma is a very rare type of bladder cancer. Hence not a lot of information available.
From my readings it sounds that what doctors seem to recommend for this type of cancer, you have had done and are going through.
Darn I really wish I could be of more help, but I have no experience and can not very much information regarding this type of bladder cancer.
I wish all the very best with the chemo oral treatments.
Jack
Hi KrisD:
I too, are of the understanding that the type of bladder cancer that you have is very rare and therefore it makes it difficult to obtain support. I too, have done some digging around and didn’t come up with anything outstanding to share. I don’t recall anyone else on this site mentioning this type of bladder cancer. I’ve been part of this discussion forum for almost 11 years.
The only thing I can think of is to check out bladder cancer sites on Facebook and reach out to see if anyone else on there has what you have. You may hit lucky, who knows? Another potential but it may be a bit of a long shot is to contact The Canadian Cancer Society and see if they have any info or know of anyone else with this.
You do always have us even if we have no one on the site right now with the same type of bladder cancer. We are here for you anyhow. I encourage you to stay connected with us. Ask questions as they come up. We may still be able to find some answers. At the very least we can be someone to lean on. Even though we don’t share the same type of bladder cancer, we do understand the fear, the worry and stress all this causes. Hang in there. ((((HUGS))))
Hello KrisD,
I am enclosing links to 3 websites that contain information about the type of cancer you have. These links were provided by the Members of the Board of Directors of Bladder Cancer Canada. I hope you are able to find the kind of information that will help you.
https://pubmed.ncbi.nlm.nih.gov/31989430/
My Best,
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