Urachal Tumor

Hi All,

My dad was diagnosed with Urachal tumor last thursday via a CT scan.  His urologist has set up a biopsy on June 12 because he said part of the bladder looked "abnormal" and he wanted a sample.  He did not confirm whether or not the tumor was benign or malignant.  I have so many questions I don't even know where to start and the Dr is away at a conference all week!  What is the next step?  Do we have to wait all the way to June 12th for the biopsy?  I mean, if the tumor is malignant wouldn't the Docs want to find out right way so that it can be removed and to prevent it from spreading? I thought you could tell if a tumor is malignant by a CT scan.  Do I need to find an oncologist now?  His urologist is affiliated with a small community hospital that I do not feel comfortable with if he was to have surgery.  Does anyone know of a hospital that has expertise in urachal tumors?  He lives in eastern Long Island.  Does anyone have info on the disease?  The info on the internet looks grim.

Thanks in advance for any information. 

 

Maria

 

I would suggest going to a large teaching hospital for this.  Urachal tumors are very rare so I think you would benefit by a doctor who has more experience with this.  I don't know where you live but look for an institution who treats and performs a lot of surgeries.  You want experience on your side.

Hi Maria,

My first suggestion is to head to NY Presbyterian and look up Dr. Daniel Petrylak.  He is my doc for the same cancer.  Also, NY Presb. has cutting edge urologists that can perform any surgery your father needs for this.  Unfortunately, CT scans cannot diagnose cancer, but only suggest the presence of.  Confirmation is done by biopsy only (as part of the staging).  My second suggestion is to ask about treatment prior to surgery.  I had surgery first then nothing for 6 months.  Treatment prior to surgery could have killed off the microscopic sites then surgery could have removed the remaining primary tumor.  Ask Dr. Petrylak, he wont steer you wrong.  If you  want a second opinion, I'd go to Mass. General or Dana Farber in Boston.  From what I've heard, Sloan Kettering has had little experience with this cancer. 

Lastly, Do not fear from what you read on the internet.  I know it looks bad but if found early enough, this is easily curable.  Also, there is are several new drug combos that are showing good response. 

Best of luck and my prayers to you and your father. 

Derrick

I'd like to thank Nurse Karen and Derrick for you responses.  It is comforting to know that there is a message board such as this to help us cope,

I called Dr. Petrylak but unfortunately he does not take my dad's insurance. Out all the facilities covered by insurance, Sloan-kettering seemed like the best option.  I will mention to his doctor about treatment before surgery though. Thank you Derrick for all the info and words of encouragement. 

Maria 

 

 

Hello Maria

This is just to wish you and your father well for tomorrow.  My husband, Geoff was diagnosed with urachal cancer last August.  He has had surgery and chemotherapy and seems to be reposnding well. Urachal cancer is very rare and aggressive but if caught early and treated quickly  there can be positive outcomes.  We are in England and Geoff's oncologist is very supportive and very positive.  My thoughts are with you too.  It is very hard for the relatives as well.

Our best wishes are with you both and we'll be thinking of you tomorrow.

 Inez & Geoff

 

 

Hello Maria,

 My husband was diagnosed in August of 2006 with urachal adenocarcinoma.  His urologist immediately recommended we go to one of three hospitals, Cleveland Clinic, Sloan-Kettering or MD Anderson Cancer Center in Houston.  Now I will tell you that at MD Anderson currently have a clinical trial going on for this specific type of cancer.  This cancer is so rare (we were told less 1,000 people worldwide) that they really do not know how to treat it. 

We chose Cleveland Clinic in Cleveland, OH.  Dr. Andrew Stephenson is my husbands urologist there.  He is absolutely wonderful.  His oncologist there is Dr. Timothy Gilligan, again wonderful!  We could not have asked for a better team.  Both of these doctors and their staff are always willing to take time and talk to us regarding my husbands treatment and what to expect. 

The doctor at MD Anderson is Dr. Arlene Raftke.  I don't know where you are or what your resources are but it is worth the trip to speak to these people.  They have a regimine of 5 different chemo drugs that are usually used to treat colon cancer. 

  I hope some of this information helps.  All of these people can be found via the internet.  God Bless you and your husband. 

I am looking for information and advice about urachal cancer. In looking for a source of hematuria, my Dr. discovered a urachal opening. After CAT scan, there is no obvious sign of tumor but still no explanation for the blood in urine.(trace amt.of blood) He has given me the options of doing nothing for six months and then looking at it again with cystoscope or having the urachus removed. I am hampered by the lack of information since it is such a rare thing to still have the urachus. Does anyone know if it always or most often develops cancer? Any information or advice will be greatly appreciated. My doctor did speak highly of the Cleveland Clinic.