Urachal Cancer Survivor

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Urachal Cancer Survivor

by Drsongbird on Fri Apr 29, 2005 12:00 AM

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I want you all to know there is hope. In December of 2005, I will be 11 years cancer free. My diagnosis was stage 4 urachal cancer, and I had surgery in Chicago at the University of Illinois. The process was long and difficult - as you all may already know. Doctors at first thought I had a vernereal disease, even tho I kept telling them there was no chance. At the time I was a single dad with 4 children, ages 14 down to 4. The surgery took along time to recover from. I know how fortunate I am that they took a great deal of muscle (including navel, top of bladdere and intersceding muscle), as I have had no recurrance and did not need chemo. I have had additional surgeries, somewhat related to the first, but none have exposed more cancer. Please feel free to talk with me. You can call the Anderson Cancer Center in Houston. I am on the calling board as a urachal survivor. I'll share the road with you if it will help. Bless you all. Doc

Urachal Mucinous Adenocarcinoma

by JamesM_H on Tue May 03, 2005 12:00 AM

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Thank you for posting your situation on the message board. I was diagnosed in 8/02 during an appendectomy. Took half the bladder and the urachal ligament. There was some cancer in the pelvic lymph nodes, and that was clear for a while, but came back. Had lots of different chemos at MAYO CLINIC in Jacksonville, and it kept nodes from spreading for a while. In Feb this year had severe anemia, and they found numerous lung nodules (sub centimeter so far) and a lytic lesion size of a golf ball on the 8th rib. Doing Alimta and Radiation oncology now. Love to chat more about this. I wonder how you got thru without chemo, that sure was a plus. I have to say I tolerated most of the chemo regimes quite well, even worked during some of it. I am 68 years old. Be great to hear back from you. Thanks again, God Bless, be well. JMH

Urachal Cancer Survivor

by Drsongbird on Tue May 03, 2005 12:00 AM

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James - Good to hear that you are doing ok. I was 40 when I was diagnosed, and apparently it is rarely present in folks of that age. Most of the people I have talked to through the years have been in their 60's, with the exception of one female (late 20's) and one other male, around age 50. I still don't know how I escaped chemo - I am not aware of any other survivor who has not had to deal with chemo. The first night I saw my surgeon, he told me what the surgery would be like, how much tissue would need to be taken, and that chemo/raditation would only be used if the cancer recurred, which was typical at between one and three years. He said that things might change once he got inside, but thankfully all was as he predicted. I Guess the severe pain and bleeding I experienced served as an (uncomfortable) early warning, pre lymph node spread. Often this cancer does not cause pain or other symptoms so it is not caught as early for many. My tumor was the size of a softball, and was what they called encapsulated - in fact it had gone through the top of the bladder and surrounding muscle, but no farther. As a result of this surgery and a couple of others after, I've got no belly button (my kids thought that was funny)and a big cross on my midsection from sternum all the way down, as well as from side to side. I guess I could have considered it a "tummy tuck" as I was more than a bit smaller in the middle after the orginal surgery was done. So much for the graphics. I wish I could put you in touch with others who are going through the same chemo regimen as you - as this is the rarest of cancers, there is no set regimen of treatment that I've ever seen/heard. Over the years, my observation is that those who had older doctors seemed to have more (longer duration and strength) chemo than those with younger docs. This may be far from reality, but seems accurate for those with whom I have come in contact. If you would like, you might want to call MD Anderson to see if they have anyone who has a similar chemo experience. The folks I have worked with may not have chosen to talk to others after completing treatment. I'm glad to talk with you, and wish you many blessings as you walk this path. May you continue to experience the gift God gives to us in each and every day. Let me know how you are doing. Your friend, Craig

Urachal Adenocarcinoma

by Linda_l_4 on Tue May 03, 2005 12:00 AM

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DR. songbird, Hello, I am a 55 year old female who was diagnosed with urachal adenocarcinoma, June 03. It had a spread to my ovary, and sigmoid colon. After surgery and 4 weeks rest,I started chemo treatments of Gemzar and Cisplatin,that were very agressive.Six months of treatment and testing and scans, my Dr. found me cancer free. It has been over one year and I have remained in remission. I am scanned etc. every5-6 months. I would like to find out if your cancer was adenocarcinoma,you did not mention that it was. Also if yours was diagnosed at stage 4, but no metastisis? Thank you for the info, wonderful to hear!! Linda L.

Reply to Linda

by Drsongbird on Tue May 03, 2005 12:00 AM

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Linda - So glad you are doing well, and are cancer free. I was checked once a month for the first year (CTScan or MRI), every three months for the next 3 years, and then once a month until the 7th aniversery, when my doc said "See ya - have a great life!" (Not exactly those words, but that's what I heard. Yes, it was adenocarcinoma, muscin(sp?) producing, stage four. The stage does seem confusing, as it had not metasticized, but had gone through bladder wall and surrounding muscle. They sent the samples to to labs - one confirmed the diagnosis but would not stage due to rarity, second said stage 4. I'm content now with my stage 0! I have had multiple surgeries since the first time, some as a result of the initial surgery, others not, although the original medical assumption was that the cancer had returned. There are times I love it when they're wrong. Bless you, and keep in touch. I'll be glad to share time with you. Doc (Craig)

Urachal Mucinous Adenocarcinoma

by JamesM_H on Tue May 24, 2005 12:00 AM

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Thanks for your reply 3 weeks ago. I have not been on the computer as just totally fatigued from the radiation (which got rid of the rib lesion in 10 treatments!) and the Alimta. Had some esophogitis side effect which landed me back in the hospital overnite with a spasm, but small price to pay! I have had numerous chemos and I guess the cancer is being held at bay for now. Mayo is certain the Alimta is the answer as their are nodules in the lungs. So I will continue to trust their judgement. I had called MD Anderson a few months ago and reviewed my case and they said everything they could think of was being done. Love to talk with you sometime though. You sound like an inspiring guy. GOD BLESS, take care, Jim H

Urachal Cancer Survivor

by Drsongbird on Wed May 25, 2005 12:00 AM

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JIm - Glad to know you are doing well. I understand that the chemo process can really wear you down, glad that it all seems to be held at bay. I look forward to hearing from you and will pray for renewed and sustained energy, strength, and healing. Craig

Urachal Adenocarcinoma.

by JamesM_H on Fri Jun 10, 2005 12:00 AM

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Hi Craig, thanks for the note. Just home from 5 days in hospital for anemia, feeling better now, had two transfusions which helped. I noticed a reply from a Linda L, she and I have been in touch for about a year now, great lady, very upbeat, and a big help. Thanks again, JIM

5 Days in Hospital

by Drsongbird on Tue Jun 14, 2005 12:00 AM

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Jim - Glad you are doing better. Much as I don't like hospitals, its a really good thing when they get it right.... Is the cancer still in check? I'm praying that's so as it seemed that the anemia was the main issue. Sorry for not replying sooner. Work has been a bear..... Craig

Mom Has Urachal Adenocarcinoma

by Lanki on Sun Aug 21, 2005 12:00 AM

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Hello Craig, My name is Julie, and my mom has urachal cancer. She just had surgery a little over a month ago, and removed a tumor the size of a grapefruit. There is cancer in her lymph node near her pelvic area that they could not remove, due to major blood vessels being in the way. She has an appointment next week regarding results from a CT-scan, and to talk about treatment. This doctor at Columbia Presbyterian in NY saw only 2 cases last year. They would like to put her on Capecitabine daily (Chemo pill) and irinotecan every 3 weeks. They also told her that they needed to do more research as it is such a rare cancer. She is very nervous about her meeting next week, and is not sure what types of questions she should ask. Maybe since you have been through it or know others, you may have some suggestions. My mother is also very depressed and is sad all the time. I try to tell her that strength is key, but it doesn't seem to be working. It is very difficult for me due to the fact that I live in Georgia and she in NY. I know that you have talked about MD Anderson, and I was wondering if there was a specific Doctor that may know more about it. I hope to hear from you soon, and I appreciate your time. Julie
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