Hello, my name is Nicole and I was diagnosed with Urachal Cancer (adenocarcinoma) with spread to my peritoneum. I have mucinin in my belly too. I was diagnosed last month and started treatment at Dana Farber in Boston. I haven't been able to find anyone, however I know of two woman successfully treated in Massachusetts that I'm trying to find.
How long have you had it, what treatment have you been doing, who is treating you?
As you know we do bladder cancer here but you are more than welcome to our community. While we can’t help you a lot with the specifics of your cancer we can support and we can give you what we know about chemo and such. I know this note doesn’t answer your questions but I just wanted to say welcome.
T2 g3 CIS 8/04
Chemotherapy & Radiation 10/04-12/04
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society
I was diagnosed with urachal andocarcinoma with mucinin to the Peritoneal wall. Which is the devil. I had cytoreduction with hipec
This took place 2/9/19. I’m about to be treated with 6 months of chemo Gemcitabine and nasty cisplatin. They tell me I’m in a research group of “1” but now I just found you that makes 2. What grade is your tumor cell as far as aggressive??? That’s th big question. Mine is high. Did you have the peritoneal wall cleared if cancer? It’s a must
there Are many more people with urachal cancer then the medical community feels.
Yes I have urachal with identifying characteristics of the dome of the bladder. Mine spread to ovaries and peritoneal wall I had cytoreduction with hipec and an about to take on the chemo regiment
Who treated you? How aggressive was the tumor? Mine is a high grade
I have met with 4 oncologist that all treat bladder and have been told that this is a type of bladder cancer. I am so great fil that it exists because other urachal cancer patients have posted. Urachal is a bladder type cancer but extremely rare. Told only 10 a year.
Hopefully the postings of others will find answers and common hopeful treatments