dianer57's Message Board Messages

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RE: Urachal Mucinous Adenocarcinoma

by dianer57 - October 05 at 2:10 AM

Do you feel MD Anderson will be best for this cancer/

RE: Urachal Cancer

by dianer57 - August 01 at 5:29 PM

Hope to hear from  you.  I too have lung nodules and am going to start chemo.  Hopefully it will work.  Hard to decide which drugs to use as we are so rare.  Dianer

RE: Urachal Cancer

by dianer57 - August 01 at 5:10 PM

On Feb 14, 2012 5:50 PM iceberg wrote:

On Feb 12, 2011 1:05 AM mos1502 wrote:

On Jan 31, 2011 1:12 chukman wrote:

and it is T2 went through the wall of bladder but no tissue involvement or other organs yet


I'm delighted to finally find a site where I can meet other people who have urachal carcinoma. I am a 37 year old mum of one from Ireland and I was initally diagnosed with Urchal Carcinoma in May 2009 at which point I had surgery to remove the tumor from my bladder with a partial cystectomy in June 2009 and then my umbilicus was also removed in September 2009, which was all clear and there was no lymph nodes involved. I was then left waiting for my urologist and other doctors to decide on whether I was to have adjuvent chemo or radiation therapy. They contacted the MD Anderson Clinic and were basically told that they wouldn't give adjuvent treatments unless I was part of a clinical trial. Although one of the consultants involved in a meeting that was orgainised said that I was at a very high risk of it returning and that he would be happy to give me radiation therapy but my urologist failed to heed his advice. I continuted to have cystocopys every three months along with ultrasound and ct scans . Then in November 2010 even though I was not suffering from any symptoms what so ever my world came crashing down when I was informed that I now had nodules on my lungs (which were first spoted on an earlier ct scan in May 2010 but never reported) and that I was now at stage 4 metastic urchal carcinoma and that it wasn't curable and if I was lucky I would get three to five years left. I started chemo in December 2010 and I am currently on my fourth session which is a mixture of the Irinotecan and xeloda (capecitabine). I've been lucky so far with the side effects in that I'm only suffering from tiredness with no sickness and my hair started falling out just before Christmas which has now been shaved very short, but other than that I am well. I go for a ct scan in March to see if the chemo has any kind of effect and that the nodules have hopefully slowed down or shrunk. I find that it is very scary knowing how rare it is that its hard to find out any information on it let alone a forum like this which is great.

I hope that all of you that have posted are doing well in your treatments and any advice would be greatly appreciated. Take Care x

I am sorry to hear that the lung spots were not addressed... I am now free from Urachal cancer for over 15 years.  I had done cystoscopies faithfully a few times a year for the first couple than yearly until 10 yrs, not every other year.   Also got ct scans with days of each other as back up, but have not since 10 yrs.. maybe I should continue that piece too.

I do pray that the nodules have shrunk!!

How did the nodules shrink with your medication given by chemo?  I am starting soon for many in my lungs on Monday,  Wanting to hear good news.

Uracal carcinoma

by dianer57 - July 27 at 8:18 PM

I would like to hear from anyone that has survived this cancer.  Uracal ademacarcinoma is a very rare cancer. I am surviving 3 yars 8 months but have both lungs affected with nodules now.  Would like to hear what treatments have worked for you few out there.  Thanks  Diane

On Dec 09, 2013 12:41 AM Steve48 wrote:

Hi all I had a kidney stone back in September this year and was taken to hospital and a scan showed the stone had moved its way down in my bladder, scan also showed a urachal cyst on the dome of my bladder, Dr said kidney stones are my best friend as it was only about 8mm in size so got it very early, had it removed end of September using keyhole surgery, Dr did not remove all the umbilical tube as at the time it was not known it was cancer, it turned out to be stage 3 with muscular invasion and had gone into the lining of the bladder, I had a good size chunk of the bladder removed ( peeing a lot more now) had good clear margins then went for pet scan which thank god was also all clear, had to go back in for more surgery to remove the rest of the umbilical tube and the belly button, I am now in recovery from that surgery and have been told I will get a pic put in end of this week and begin chemo next Tuesday for a period of 6 months with two days on a pump every two weeks, they have not told me what chemo it will be but originally it was going to be a experimental drug from the states that a professor was using in a cancer clinic and was having good results, but to get it they would need to boost my bone marrow, this was all knocked back due to funding as the booster cost $2000 a pop and as the medical board stated that there was no real proof it will work so they said no, so now I will be done using the regime for bowel cancer has there been any one out there that have similar outcome, I had read that there is only about 350 recorded cases in the english language, my hospital has never had this type of cancer presented before and do not have much to go on, I know it is an aggressive and invasive type of cancer and don't want it to return and want to do what ever it takes to make that happen

I also had urachal cancer with went into my bladder.  I had the surgery to remove both the urachal tube and a partial removal of my bladder and lymph nodes affected..  I had chemo treatments every three weeks for three times and am cancer free now for two years.  I give credit to prayers, God, the great surgeon, and oncologist treatments  .  I also have a good outlook on life as you have to be positive.  I know there are not many that have this type of cancer so not much research to look at.  My outcome is good so far.  Surgery was two years ago last November.  Chemo finished up in Jan.2012  Good Luck and keep up the fight.  Diane

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.

RE: urachal adenocarcinoma

by dianer57 - March 25, 2012

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.

RE: urachal adenocarcinoma

by dianer57 - March 22, 2012

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...

RE: urachal adenocarcinoma

by dianer57 - January 30, 2012

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

urachal adenocarcinoma

by dianer57 - January 19, 2012

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.

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