Urachal Cancer

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Urachal Cancer

by Golftrash on Tue Oct 11, 2016 02:29 PM

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My name is Terry and I am a 58 yr old man from North Carolina, I was diagnosed with Urachal Cancer and will have surgery on 10.17.16 at the University of North Carolina Bladder Cancer Center. I was wondering if there was anyone out there who has gone through this and could tell me what to expect?

RE: Urachal Cancer

by cowgirlpowr on Mon Jan 16, 2017 07:13 PM

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Hi Terry!  I was diagnosed with Urachal about the same time you were.  I had surgery on Oct 31, 2016 to remove the tumor.  It was sitting on top of my bladder and they removed 15% of my bladder and alot of tumor, belly button. It was a major abdominal surgery with lots of reconstruction.  I am finally feeling pretty good again. 2cm tumor (same type) showed up on a scan and I will have that removed in a couple of weeks.  It's in my abdominal wall. They are monitoring my lymph nodes. I've been at KU Med in KC.  Chemo has been recommended for me once I heal up from this tumor removal.  I've tried to cut back on the sugar in my diet for what it's worth at this point.  But it's really hard to know what to do next.  I'm in the Second opinion/no second opinion stage.  Theres just not much recent info out there for this type of canceer. Hope this helps a little. Stay positive!

RE: Urachal Cancer

by Clement on Tue Apr 25, 2017 12:45 PM

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Hi! As I read Terry's post and then your's it echoed with my experience.  I too was diagnosed in October of 2016 and had my belly button and the upper section of my bladder removed. The pathologists present at the operation said they removed a good margin and I was all clear. My lymph nodes were given the all clear too and so I did not have chemo or radiation as it was thought to be unnecessary although the final pathology report showed that I was Stage IV.  However, just yesterday my CT scan results showed growths on my lungs.  I'm a bit down right now especially since I live on Guam and will have to leave my family for treatment in Los Angeles.  Any docotor recommnedations for LA?

RE: Urachal Cancer

by SkipH on Thu Aug 31, 2017 02:59 PM

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Hi Terry, My name is Skip i am a 61yo married male living outside of Seattle to the North. I recently had surgery in mid June 2017 for what turned out to be a malignant Urachal Cancer. Ive learned the medical term is Adinocarcinoma. The surgery went great and my surgeon removed an 8 lb mass from my lower abdomen. Everything went very well! They had planed on keeping me in the hospital about 3 days but I was up and doing well the next morning so they released me by noon. The big key for me was having a morphine spinal block injection. This actually lasted long enough to me that barely felt anything following the surgery even for a couple of days! As for treatment, the Dr's at Seattle Cancer Care Alliance have no defined protocol for how to treat a Urachal Cancer. The approach has been to take full body CT Scans every 3 months and watch carefully for any potential nodes or possible growth. The Urachal Cancer actually ate a hole into my bladder and they had to remove about 25% of the top of my bladder during the surgery. My cancer is classified as a stage 4 because it invaded my bladder. They tell me I have likely been carrying the tumor mass all of my life. So far it has only been a couple of months but I feel great! Happy to be rid of the tumor! There were no signs that I had this Cancer! I went in for a routine checkup and asked my PCP to check my lower left abdomen for what I thought might be the start of a hernia and within 2 wks I was in surgery. I hope this helps.

RE: Urachal Cancer

by SkipH on Thu Aug 31, 2017 05:23 PM

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This is Skip again,

I should have added that the surgeon & pathologist both said they had good margins and that they excised 3 lymph nodes that also were clean (no cancer).  My surgey was also classified as major abdominal surgery and the incision was pretty extensive and they managed to keep the belly button intact.

They have not recommended radiation or chemo yet. Honestly - this is the first time they have ever seen "adinocarcinoma".  My Dr's have been in touch with other Dr's via their weekly national "Tumor Board" conference call and have found only 1 Dr in the US who had prior experience.  From all that I've seen on this "CancerCompass Board" there seems to be a lot more Dr's that have experience with Urachal Cancers.  It seems to me that this is becomming more comon now.  Wiki says that this cancer occurs in 1 out of 1,000,000 people.  I'm not very confident in how accurate that Wiki quote really is!

I wold not recommed this for anyone else but, I have decided (on my own) not to undergo chemotherapy as I feel it would not greatly extend my life or improve the quality of my life. From what I've seen from my friends with cancer it has been very difficult for them with little or no positive long term results.

I've looked closely at life expectancy from the worldwide reports that I've down loaded and it seems that 50% of Urachal Cancer patients did not live past 5 years after diagnosis and the remaining 50% did not live beyond an additional 5 years.  These reports have come from Ireland, China, Canada, the US, etc...  The main factor I can see is that these patients had some form of medical complication or manifestation that caused them to seek medical help.  For me personally and for some others, we didnt have any medical indicators at all (no lower abdomen pain, no blood in the urine) no other specific symptoms at all.  This is not true for everyone I'm sorry to say.

I hope you feel better - At this time, I know I'm feeling OK with virtually no pain.  Now it is a wait and see approach.  In the last BASELINE CT Scan they found undefined benign nodes on my liver and on my lungs. These will be followed very closely over the next couple of CT Scans every 3 months.

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