Urachal Adenocarcinoma

I am a 66-year-old male, with rare cancer. Part of the umbilicus to the bladder. Nonsymptomatic tumor found during CAT scan for emergency appendectomy. Golf ball sized tumor removed 2 months after appendectomy, and although it appeared benign, further pathology discovered it had spread. Bladder cystopscopy done before operation, and showed no invasion, however, they resected part of the bladder as tumor resting on it. Then decided to do further surgery to be sure, and a 2 inch wide 15 inch section including umbilicus taken, which was benign, but cells found in pelvic lymph nodes. Only couple hundred cancers of this type diagnosed last 150 years! Meeting next week with oncologist to decide chemotherapy. Any one familiar with this cancer and treatment? Please advise, Thank you, JIM H.

Thank you for your message, which I can not locate at the moment. Appreciate your positive comments. Love to hear from you. Please Email me at jim_hummel@hotmail.com. I have a lymph node pressing on the tube from kidney to bladder and had a stent placed this past weekend at MAYO. Starting new chemo regime next week. Showed oncologist your letter, plans on using gemzar this round. Thanks for your time.
JIM H.

HOw did the gemzar protocal work out for the Uruchal spread?

Hi Jim,
How are you doing? Your message is older, so I am not sure you still check the message board. I hope all is well. My husband was recently diagnosed with urachal adenocarcinoma and had surgery to remove the tumor and the dome of the bladder. All signs are good at this time. The doctors are not recommending chemo or radiation.

Rachel

Hi Jim

Not sure if you stll check the message board.  My dad was just diagnosed with benign urachal tumor but they decided not to do surgery.  I'm having trouble finding more info on the disease since it is so rare.  From your knowledge, do you have any thoughts?

Maria