CancerCompass message board discussion started by Jenifer on 6/24/2006 http://www.cancercompass.com/message-board/message/all,5788,0.htm Wed, 03 Dec 2008 00:00:00 GMT Wed, 03 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My boss was diagnosed with AUP last August. She went to Mayo, where they decided to do six rounds of chemo. A PET scan and bloodwork one month ago showed no cancer. So, they did a hysterectomy about a week & a half ago in case that was the primary. They took some nodes and found cancer again. I don't know if that means it was never gone or if it has already recurred. Prelimary pathology does not reveal the primary now, althout at first they thought it was breat cancer. The oncologist won't see her until she heals from surgery, but I am coming out of my skin. Are there options for people in this situation? Last time, they didn't initially offer treatment. She was eventually selected by the Mayo to be seen there. The doctors were not hopeful at the beginning of chemo and told her it wouldn't work. However, when she responded they were willing to admit hope. I've been hopeful all along, and wonder if someone out there can tell me about positive outcomes for people with AUP? I'm the second-in-command of an office where she is well admired and loved. It's been a hard year. I don't want to lie to the staff, but I don't want to give up either. Jenifer Sat, 24 Jun 2006 00:00:00 GMT I know the Mayo clinic has a wonderful reputation, but perhaps you could convince her to get a second opinion with a hospital that only deals with cancer, i.e. Sloan Kettering, New York. You will need the slides from the Mayo pathology department (you pay for that, but they have to give it to you) and, well, go to the hospital site and they will tell what you will need. She could get an appointment and see a doctor in person. The negative side would be that it's expensive. But I urge you to consider this option. Rickie Fri, 30 Jun 2006 00:00:00 GMT my ca19-9 was 48 after my radiation , after 8 months of chemo, its risen up to 65. does anybody has any explaination why this is ? Duchess#3 Duchess#3 Mon, 03 Jul 2006 00:00:00 GMT I went to Google and just put in the ca19-9 There's a lot of information there....if you want the answer. Rickie Fri, 14 Jul 2006 00:00:00 GMT Hi I'm not to familiar with AUP but my sister has a very rare adenocarcinoma of the belly button (urachus it is called). She is currently undergoing a trial but, her oncologist from Columbia Presbyterian in NYC -- Dr. Dan Petralyk -- told her that if this trial does not work, he is moving her immediately on this new treatment that is out which has proven to reduce adenos by 33%. I'm not certain of the drug protocol (taxol??) since she is not there yet but you may want to have her oncologist follow up with Dr. P and find out what he is suggesting. My sister's name is Jane and she has urachual adenocarcinoma...if the dr. or your boss uses her name, Dr. P will know what their talking about since she is the only patient currently under treatment with this cancer. Good Luck Melissa Urachualknower Wed, 19 Jul 2006 00:00:00 GMT I was diagnoised in Sept of 2003 with auo, I was a smoker, and my c 125 marker for ovarian was elevated to over 900, the " guess" was ovarian but maybe lung? I did 6 cycles of chemo, no hystorectomy, as I was staged 4, I spent the entire time rebuilding my immune system, as of today my ca 125 markers are 5, and no evidence of tumors exist, I am blessed and commend for reading " Beating Cancer with Nutrition, Cancer Battle Plan, and other similar books which support the immune system advice, also check into mangosteen ( Xango brand) you can find information on WEb MD and other similar sites, or go to mangosteen experineces.com. Finally, prayer heals never ever loose faith, no one knows what your individual reponse or out come will be Claudia Claudia in Blairsville Thu, 03 Aug 2006 00:00:00 GMT