dianer57

I would go right away.  I had blood in my urine also and it was a bladder cancer.  They did not catch it with a urine test.  I had a cystoscopic exam .  This way they can rule it out or confirm if you need more done.  I was lucky I persisted in them testing as I should not have been bleeding.  No pain so I did not think it would be from the urethra.  I thought it was from the vagina somehow.  Good Luck.

On Mar 23, 2012 2:12 AM MC2012 wrote:

Can you give me more information? What type of treatment in addition to removing the tumor have you received? Where and who has been doing your treatments? I would greatly appreciate any feed back. I want to be able to help my aunt with as much information as possible. Reading the comments on here gives others hope and comfort in knowing theirs others going thru the same that can pass on information.

I had chemo every three weeks  for 4 rounds.  I had taxotere and carbo .  I did not have too rough a time with them.  I had my surgery in Sept and started chemo late in November after healing up from the surgery.  I had my surgery in St Cloud MN and was satisfied with it.  My oncologist is also from St Cloud at the Coborn Cancer Center.  I will know how successful this was treating my stage four cancer on April 4th and can give others my report.  Hopefully a success story.  I have few side effects so far.  Only some edema in my right leg and ankle.

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...

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

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.