Urachal Adenocarcinoma Unresectable

Hi to one and all - I hope you are all seeing positive results from your respective treatment plans. I too have this rare cancer - diagnosed last summer - told pretty quickly that it was terminal - an operation (the gold standard of treating UA) was not possible - but due to internal bleeding an intensive course of pelvic radiotherapy was prescribed. Now it has spread elsewhere in the pelvis and the lungs - chemotherapy is on hold for the time being. Has anyone here been in the same situation - no surgery to move the original tumour - and survived to tell the tale. My head is in the right place to hear the truth - I have already been told the worst - I am very positive despite this - no one is a statistic - there has to be a first case that has come through this situation - feedback more than welcome - most people I have communicated with and read about had surgery as their first treatment option. Thanks for listening Dixie

Hi Dixie, 

I am sorry to hear of your prognosis, but I agree that a positive attitude is always good.  You did not mention why it was not resectable.  Did they give you specifics?  I'm wondering if you can do chemo and/or radiation to shrink it, would it then be operable?  My husband was given news from a doctor that there was nothing they could do if it was metastatic (we won't know if it was because he had nodules that they couldn't biopsy, but one that shrunk with chemo).  I found Dr. Seifker-Radke at MD Anderson in Houston.  I would recommend getting her opinion.  She is the "expert" on this cancer. Good luck to you and many prayers coming your way.

Betsy

thanks Betsy I have sent you a private reply - but I am happy to share information with other urachal adenocarcinoma patients and hopefully we can all help eachother with our collective experience

 

dixie

Dear Dixie

Sorry to hear about your status, I wish you all the strength and positive energy possible.

My UA has spread to the spine where surgery eventually may not be possible anymore (I posted more info in another thread). I will have radiation starting next week and looking now at the chemo-options; there are many options and MD Anderson's regimen may not be the "ultimate" choice, I had 3 cycles of Cisbplatin/Gemzar before - to no avail. Prof. Alexander Knuth, head oncologist at the Universitiy Hospital of Zurich recognized as one of the top european oncoloy clinics, would start me "first" with a taxol/paraplatin regimen. He also says that treatment has to be individually customized.

I have collected various case infos on chemo and UA, I'll be happy to mail that to you.

Take care and lots of strength!

Mark

Hi Mark

I have sent you a private reply - thanks for getting back to me

 

dixie