CancerCompass message board discussion started by Veronica on 10/4/2006 http://www.cancercompass.com/message-board/message/all,7101,0.htm Sun, 07 Sep 2008 00:00:00 GMT Sun, 07 Sep 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I was diagnosed with urachal cancer in 2001 and had my urachus and top dome of my bladder removed. In 2004 the cancer came back at the same location, so I hade another surgery to remove top of my bladder again. Since my doctor told me that this type of cancer doesn't respond well with chemo/radiation, I didn't have any further treatment. In 2005 some cancer cells was found on my ovary, so I had another surgery to remove my ovary and 6 chemo treatments of Taxol and Carboplatin. Unfortunately, last month my doctor found urachal cancer cells on soft tissues in my pelvic area as well as my bones. My doctor suggests radiation and chemo (5FU and Oxaliplatin). Since this type of cancer is very rare, I am having a difficult time to find any doctor who has enough experience with urachal caner for 2nd opinion. Does anyone know of any doctor who might have more experience in treating urachal cancer patients? Also, since I never had radiation, can anyone tell me about your radiation experiences? Veronica Wed, 04 Oct 2006 00:00:00 GMT Veronica DO NOT GIVE UP HOPE.... my sister is on her 3rd reoccurrence in 4 years and between surgery and chemo and now, a new experimental drug, her cancer is not growing or moving and even upon the last PET scan in September, shrinking. She too went to Sloan and was told to go home. She is now treated by a Dr. at COlumbia Presbyterian in NYC and on 119 days of an experimental pill that is shrinking her tumor with hardly ZERO side effects. Please go see the MANY blog entries on this subject. To find these, go under cancers and choose "other", in the search field, put in urachal adenocarcinoma and you will see alot of blog entries. Please go to page 3 of the entries and find the entries ending in #1991. Click on those. You will see that you have come upon a blog with 47 entries on the subject including my sister Jane's doctor's name and #. Please call directly or have your doctor call him. Dr. Dan P. -- gentiuroligical oncology at Columbia Presbyterian NYC. Good Luck, keep the faith and keep up on this site, there is alot of good info about this type of cancer. Hugs to your husband for being such a trooper Melissa Urachualknower Thu, 19 Oct 2006 00:00:00 GMT Veronica, So sorry to hear of your problems with urachal cancer. I am a nurse who was recently diagnosed with a urachal cyst, and need it removed. Iam also the author of a cancer book. In my research, I found a Dr. Robert Nagourney who is a hematologist/oncologist from California. He is a world renowned scientist and has a labatory there. He feels each person's cancer cells are unique to that person. He tests the cells using different chemotherapeutic agents, and essentially comes up a protocol specific to that person. He then sends the report to the oncologist, who is suppose to use the protocol recommended by Dr. Nagourney. Problem is, oncologists may resist this approach. I recommend you at his site for more information at www.rationaltherapeutics.com. In the meantine, keep searching the literature, but please llok at Dr. Nagourney's site. He has published many articles in scientific journals. My best, Authord Authord Sat, 02 Dec 2006 00:00:00 GMT  On 10/4/2006 Veronica wrote:I was diagnosed with urachal cancer in 2001 and had my urachus and top dome of my bladder removed. In 2004 the cancer came back at the same location, so I hade another surgery to remove top of my bladder again. Since my doctor told me that this type of cancer doesn't respond well with chemo/radiation, I didn't have any further treatment. In 2005 some cancer cells was found on my ovary, so I had another surgery to remove my ovary and 6 chemo treatments of Taxol and Carboplatin. Unfortunately, last month my doctor found urachal cancer cells on soft tissues in my pelvic area as well as my bones. My doctor suggests radiation and chemo (5FU and Oxaliplatin). Since this type of cancer is very rare, I am having a difficult time to find any doctor who has enough experience with urachal caner for 2nd opinion. Does anyone know of any doctor who might have more experience in treating urachal cancer patients? Also, since I never had radiation, can anyone tell me about your radiation experiences? I too have urachal cancer and had half of my bladder removed in sept.2006 and had positive lymph nodes. Doctors sent me for ct in nov. and dec. and find that the bladder is showing a possible reacurrance. They now what to take the whole bladder and get as many lymph nodes out. They tell me it is the only cure and will give chemo just for insurance. I wondered why your doc's keep taking some of your bladder is it because you caught it early because my tumor was 7 cm. I am only 35 years old and I am having a hard time with this removal of the bladder. The only thing that keeps me going is thinking of my 3 boys and my wonderful husband. They don't deserve to lose thier mom so I am going to do what ever it takes to see them grow up. I couldn't imagine what it would be like to grow up with out a mom, and that is why I HAVE to have this surgery.I have been on bladder cancer discussion board web sites to see what is ahead of me and it looks really rough at first. I know it will be worth it, I  am so sad right now!! Daisy Bear Fri, 12 Jan 2007 00:00:00 GMT