urachal adenocarcinoma

I am a female 70 years old whom was diagnosed in Sept .  Had surgery and am now on chemo.  I am trying to get in touch with others that have been recently diagnosed to see what dhemo treatments you have encountered.  I am on taxotere and carbo one treatment every three weeks. times four.  I have one more to go.  I had another Dr prescribe a harsher treatment but opted for my younger Dr's plan.  I would like to hear from survivors recent history. Most of it on the blogs is quite old.  I understand it is a rare cancer and that there are very few of us here to compare.  Thanks for any input.

I had regular bladder cancer stage 4. I was also given the choice of Taxol and Carboplatin or a harsher type of chemo. I went with the harsher type because the Doc said that was my best chance of survival. It kicked my butt, but it worked. Was Cisplatin, The Red Devil, and a cocktail of other drugs including Zometa bone treatments because mine had spread to my ribs and a lung. Hopefully you get some responces from people that have went thru your type of specific bladder cancer. Lots of people just gave up on this site because it was overrun with canine bladder cancer posts and alternative cure whackos. Good luck to you. 

My 50 yr old hubby has urachal cancer. I do cancer research (at the molecular level) and have read every spec of data in the literature.  I  am also posting to compare notes with other survivors.  As you may know, urachal cancer is very different from bladder cancer.  The tumor is actually most similar to colon cancer.  Hence, chemo treatments used for colorectal cancer might be more effective.

My dear hubby had surgery and will start local radiation soon.  We are heading to MD Anderson to see an "expert" on this rare cancer and see what they recommend for further treatment.

All the best to you.  Hang in there and let's keep comparing notes. 

I am a 66 yr old female, diagnosed with metastatic disease in Oct 2010. Had surgery and recurrance in June. Had my biomarkers done and have completed a 6 mo. treatment with Folfiri, which only held the 3 recurring nodules in my bladder in check. My oncologist is not in favor of another major surgery and I want no further chemo. There are really too few of us to really have any beneficial research protocols, even in the most recent articles. I'm lucky I can still work and lead a normal life, for now.

I was wondering how often you had chemo treatments over the 6 months.?  I am sorry it has returned for you.  I have my first MRI to see how my chem of four treatments has worked to hold it at bay or kill any existing cells.  My surgery was removing 1/3 of my bladder and the tube of course, and many lymph glands.  I had all clear margins after the surgery.

yes, it is too bad we are such a rare case so they have no real studies to see what works best.  I had a regime of carbo and taxatere times four.  All finished with chemo now.  Hopefully for good.   All the best to you.  Diane

Hi Betsy, I hope your husband is doing better. I am a 44 yr old male, and had a urachal tour removed in early feb, along with the urachus, my elly button and the dome of the bladder. My tumor consists of 35% adenocarcinoma and 65% urothelial carcinoma and sarcomatoid cells. I will be getting a 2nd opinion on the pathology and have been referred to Sloan Kettering. I am curious about your experience at MD Anderson as I have considered going there for a consultation. Would you be so kind as to share your husband's experience with me. Phil

On Jan 19, 2012 11:24 PM dianer57 wrote:

I am a female 70 years old whom was diagnosed in Sept .  Had surgery and am now on chemo.  I am trying to get in touch with others that have been recently diagnosed to see what dhemo treatments you have encountered.  I am on taxotere and carbo one treatment every three weeks. times four.  I have one more to go.  I had another Dr prescribe a harsher treatment but opted for my younger Dr's plan.  I would like to hear from survivors recent history. Most of it on the blogs is quite old.  I understand it is a rare cancer and that there are very few of us here to compare.  Thanks for any input.

I'm looking to get more information as well. My aunt has just been diagnosed and I'm hoping to hear from others.what has helped? I would like as much input as possible to help her with this.

On Mar 08, 2012 3:31 AM PhilA wrote:

Hi Betsy, I hope your husband is doing better. I am a 44 yr old male, and had a urachal tour removed in early feb, along with the urachus, my elly button and the dome of the bladder. My tumor consists of 35% adenocarcinoma and 65% urothelial carcinoma and sarcomatoid cells. I will be getting a 2nd opinion on the pathology and have been referred to Sloan Kettering. I am curious about your experience at MD Anderson as I have considered going there for a consultation. Would you be so kind as to share your husband's experience with me. Phil

Hi,I'm trying to get as much information as I can for my aunt who has been diagnosed with this today.Her doctors are still running test but I'm unsure on the experience they have in this type of cancer. She has many questions. Im afraid that the doctors handling her care are letting to much time go by with no plan of care. I understand testing has to be done but wouldn't a PET scan speed process? Has anyone had a PET scan?

I had surgery to remove a malignant urachal tumor on feb 9. It was 1/3 adenocarcinoma, 2/3 sarcomatoid carcinoma. An abdominal ct scan found it. I had a chest ct 4 weeks post op. I'm having a PET scan next week. I'm still trying to get a handle on which scans are required with what frequency. Seems there is no real consensus.

On Mar 22, 2012 4:03 AM PhilA wrote:

I had surgery to remove a malignant urachal tumor on feb 9. It was 1/3 adenocarcinoma, 2/3 sarcomatoid carcinoma. An abdominal ct scan found it. I had a chest ct 4 weeks post op. I'm having a PET scan next week. I'm still trying to get a handle on which scans are required with what frequency. Seems there is no real consensus.

I am having an MRI in April as follow up after my chemo treatments .  I had finished chemo treatments in late Jan.  They are doing this instead of a PET scan and I think I will have a scan every 3 months to start out with. then q 6 months, then every year. 

I also had a chest ct post op.  They found a small spot but it was nothing after I had a biopsy .  Seems it was a shadow.  I am so blessed.

Nice to hear what others are doing as we are so rare a form of cancer.  It makes you wonder what is the best way to treat it...