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Re:urachal adenocarcinoma

4 months 2 weeks ago #57501 by sara.anne
Schulz, we deleted the post with your telephone number. To protect your privacy and on the advice of our attorneys we cannot allow personal, identifiable information to be posted on the Forum....Sorry

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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4 months 2 weeks ago #57500 by Cynthia
Schulz,

We all live and learn I know a bit about bladder cancer but I am always aware the more I know the more there is to know. I did research when this came up and did not catch that this is a type of bladder cancer. We launched this forum in 2008 and this is the first time in my memory we have talked about this type or it has come up in my research. Please feel free to educate us does it originate from bladder cancer cells? By the way your right Cisplatin is an interesting trip, I did the same cocktail + 1 in 2004 and 2005.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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4 months 2 weeks ago #57499 by Schuls
Cynthia,

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

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4 months 2 weeks ago #57497 by Schuls
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

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4 months 2 weeks ago #57496 by Schuls
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

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4 months 3 weeks ago #57491 by Cynthia
Nreidy, Schulz,

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.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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