Urachal Cancer Survivor

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Mom's Urachal Cancer

by Drsongbird on Mon Aug 22, 2005 12:00 AM

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Julie - So sorry to hear of your mom's diagnosis-any type of cancer is a frightening thing. I'm not a doctor - I have walked at least a part of the same road your mother is travelling, and will offer my knowledge as best I can. There are very few of us as you now know - it seems to bring comfort when we work together. My tumor was also of that size, though it had not speard to the lymph nodes. My treatment was surgery, and did not require chemo. Since that time, I have worked with a number of people who have the same diagnosis, and as you found out (due to it's rarity) there does not seem to be a consensus to treatment. The lymphnode spread is the main issue - to keep it from spreading further. A number of survivors have also had radiation, specifically those where a direct target was indicated - I don't know if that would include the lymph area you've written about. That might be a good question for your mother to ask. The chemo drug that has been used has often varied, but has been a one week on, one week off IV drip for many survivors. In my experience, the CAT/MRI path is very important. For the first year, I had a set every month so the docs could check for growth/recurrance. It helped me to be able to look at the site of the cancer. I guess it helped me to focus my energy on healing - it may sound dorky, but that focus on healing does seem to help many, and it sure did for me. In regard to Doc's, I can share the individual I worked with here in the Chicago area. I also know that Sloan-Kettering on the East Coast and MD Anderson in Houston have dealt with urachal cancer. Another individual worked with a doc in Philadelphia. My doc was a surgical oncologist -he, therefore, put his faith in a surgical treatment. Other individuals have had two main treatment docs - an oncologist and a urologist. I would be glad to talk with your mom and walk through this with her if she would find it comforting and/or helpful. I know that I was very alone, and I believe I would have been more hopeful had I been able to find another survivor to talk to. If you/your mom would like to make contact, you can call MD Anderson's main phone number and ask for the program that links survivors with those who are currently fighting. If you ask for help with urachal cancer (and you could ask for my name, Craig)I'm pretty sure we'd have the opportunity to talk. Please know that my prayers are with you both - for continued recovery for your Mom and for strength and focus for you. CRaig

Mom's Urachal Cancer

by Lanki on Wed Aug 24, 2005 12:00 AM

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Hi Craig, I just want to start off saying thank you so much for taking the time to respond to my email. I truly appreciate it. I sent the message to my mom as well and she was very touched by it. As I said in the previous message, that my mom went to get the results of her MRI (thought it was a ct scan) and to talk about her treatment. The thing is that when the doctor talked to her about the MRI, they said that there was nothing there. I know that MRI's are pretty precise, but she was taken back by the results. She knows that the surgeon saw it and took a biopsy of it, but now, they can't find anything on the MRI. Could that be possible? She spoke to her surgeon today to have him double check, and he couldn't find anything either. He did say that it could have shrunk and be too small for the MRI to pick it up. It's just very strange to us, because the lymph node that they couldn't get out was encased in scar tissue which included major blood vessels as well (which ended up being the size of a golf ball) and now they can't even see that. Anyway, my mother doesn't really know what to think... How much should she trust this MRI? The end result is that the doctor's don't want to put her on any chemo treatments, because they see that there is nothing to treat. They do want to see her in 2 months to do another MRI and get a chest x-ray. We truly don't know if we should cry with happiness, or be worried that they couldn't find it when the surgeon saw it during his procedure. Anyway, I will keep you posted on the news. It really is nice to have someone to chat with about something that we all really know so little about, but who are experiencing it. Thanks again, and my mother thanks you as well. Be Blessed Julie

Update

by Drsongbird on Thu Aug 25, 2005 12:00 AM

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Julie and Mom - In my experience, MRI's show what's there very clearly. I'd choose to celebrate those pictures and the doc's decision of no chemo at this time. The 2 month CTS/MRI will catch changes - especially now that they have a set of "before w/cancer" and "post surgery clear" pictures. They'll compare those everytime they see you, and will be able to check for any present change - or no change! My (and most I've had contact with)doctors were very agressive with cancer; the fact that they see no reason to start chemo doesn't mean they aren't watching - let them do the worrying if there's any to be done. Do celebrate, Mom, while you are healing. I remember the healing process was pretty painful early on, but please know that it gets better. As much as you can/if it is a joy for you, spend time outdoors enjoying the beauty that's present in the world - in every season. I found a new appreciation for many things post cancer as I'm sure you will. Having the big "C" did effect every part of my life as it has/will yours. For a considerable period of time, every pain and twitch I felt made me think of the cancer and honestly, wondering if it was back. I was always reasurred when the CTS/MRI outcomes were clear - the tangible result that they provided helped to ease my mind. I could see that I was clear. I also knew that when there was a problem, the docs would see it and focus their efforts on returning me to wholeness. As it did for me, I am hopeful that you'll be able to look at the world more clearly without having the word "CANCER" filter all that happens. Celebrate the 1 week clear - the one month clear - maybe now just one day clear. It's intelligent to be scared: it was a nasty, painful event. I'd wonder if you weren't. One foot in front of the other has worked for me, so I can recommend that process. I had setbacks, both physical and emotional; they are a part of life regardless of the disease. I sat down and rested when I needed to - your body will tell you what it needs. It has been amazing to me how far I have had the opportunity to go, looking back over the many single steps. Bless you both - Craig

Urachal Cancer and my Dad

by Saykay516 on Thu Sep 01, 2005 12:00 AM

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I have been combing the internet and thankfully have stumbled upon this site. I don't know what help, if any you can be, but I am feeling extremely sad as I report that my father was diagnosed with stage 4 urachal cancer in May and on August 3rd had surgery that resulted in removal of his bladder and colon leaving him with an ostomy and urostomy. Unfortunately they were not able to remove all the cancer as it is connected to blood vessels so we are left with the hope of chemo/radiation. Here's the thing, my father has completely given up and is getting weaker each day. He has totally detached himself from the family and can no longer walk. We don't know if this is the cancer growing or a pulled muscle, he has an MRI on Sept. 7th. My question is this, what are the survival rates, or is this one of these cancers that has it's own schedule? Please email me at your earliest convenience to: --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html --- with any info you can give me on this rare form of cancer. Thanks in advance. Cindy

Parents With Cancer

by Theresa1 on Tue Sep 06, 2005 12:00 AM

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Dear Cindy and Julie, My heart goes out to both of you having a parent dealing with cancer. This is a very emotional and psychological time for your parents facing their health issues. In 1998, at age 48, I was diagnosed with urachal cancer; I underwent surgery without chemo or radiation. It had gone through bladder wall; I lost part of the bladder along with my navel. The tumor was encased in a membrane and he got a clear boarder. Research on the Internet, and there was very little in 1998, did not give me hope for the survival rate of a urachal cancer, but I figured they did not know enough, due to the rareness, to give that type of information. Cancer is frightening and your parents need to know that you are there for them. Julie, I hope your mother has someone with her on a daily basis? Cindy, you did not say why your father might have given up. If he suffered the loss of your mother or has had other medical problems he may have decided to give up or he does not want his family to see him when he is down physically. Cindy, call MD Anderson and ask for a copy of chapter 17 from “Textbook of Uncommon Cancer” which has a lot of information about urachal cancer. This is a time that both of you need to be taking care of yourself before you can take care of your parents. Check to see if there is a support group in your area. Through a support group (on two previous cancers in the 80’s) I learned about using visualization, journalizing, and meditation to cope– these coping items would also be good for a caregiver. Wishing you the light of Gods love, Theresa

my Best Friend Has Urchal Cancer

by Brenda_a_1 on Thu Oct 13, 2005 12:00 AM

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Hello, Please forgive me for invading your life but I am a desperate woman. My best friend Staci has urachal cancer and her doctors just recently told her there is nothing more they can do. I don't think they have done nearly enough. 1/04 she was admitted to the hospital for exploratory surgery by her urologist for a sample of a cyst. The next thing we knew, she was diagnosed with this cancer but they said they "got it all". She never had chemo. For the next year she had some blood work and a few scans. But only after her complaining consistantly to them about pain did they do another exploratory surgery. 1/05 they found more cancer. Musin everywhere. They did a few bouts of treatment over the last 9 months and this week she is being sent home with hospice!! She feels strong, healthy. She wants more help and no one will give it to her. ANY SUGGESTIONS? What do you know.. Who do you know... Please help. Brenda

Mom With Urachal Cancer

by Lanki on Wed Dec 21, 2005 12:00 AM

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Dear Theresa, It's been awhile since I have checked the message board. My mother's cancer came back in three different spots, and she has been doing chemo for the past four weeks. It has been a very stressful time for all of us. I checked the site the other day, and noticed that you posted a message. Thank you so much. In your message you talked about getting information from MD Anderson. I would really like to get that information, but I am not sure what phone number or what department I should ask for. Would you be able to direct me in the right direction? I appreciate any help that you can give me. Be Blessed Julie

Another Urachal Cancer Patient

by Quaestor on Mon Jan 30, 2006 12:00 AM

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Dr Songbird - I am a new member on the board today (1-30-06). I've read a bit of this thread and appreciate what you have to say. I was diagnosed with urachal cancer in November, 2004, soon after I had turned 37. Initial treatment was surgery to remove a grapefruit-sized tumor. The doctors found small "seed" tumors spread throughout the abdominal cavity, ranging in size from popcorn kernels to an inch in diameter. They had to take a little of the bladder but luckily nothing was inside any other organs. (Perhaps that's why it took so long to find - the only real symptom I had was severe abdominal pain for about a month.) I've been on chemo since then, and luckily I am doing quite well. I have been told that I am a permanent chemo patient. My oncologist consulted with the local "Tumor Board," MD Anderson, and the Mayo Clinic, and the consensus was to treat mine like colon cancer. I had a Port-o-Cath implanted and get the drugs every two weeks. (Oxaliplatin at first - yuck - and 5-FU; now my dose has been cut way back and I get only the 5-FU.) I've had about five CT scans over the last year and all have been clear, but no MRIs. And the doctor tracks the level of a marker chemical - CEA ("carcenoembryonic antigen"). The levels have always been at the lowest level the test can measure. Having chemo every two weeks, except for periodic breaks (I'm told 3-4 times per year, for a vacation, for example), seems like a bummer...but it beats the alternative! I am down for a couple of days after each treatment, so I sit at home and catch up on the cooking shows. When I was getting the higher doses of chemo I had some nerve and skin problems but those are gone now. This cancer is not fun but there are a LOT WORSE things that could have happened to me! In the back of my mind I hope for a miracle pill, but in the meantime I try as much as possible to live my life as I did before. I have two kids to raise (3 and 12) and a house to pay off, after all! (And a truck we bought last summer...I have every intention of meeting my financial obligations!) I felt down when I was sitting in the hospital after my surgery, as to be expected, but I decided that there is a certain percentage of cancer patients who are survivors, and that I would be among that group. If there is anyone else who has had or is having a similar treatment I'd love to hear from you (or anyone else in our exclusive "urachal cancer" club)! Warren

Newbie - 1/30/2006

by Drsongbird on Mon Jan 30, 2006 12:00 AM

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I feel so blessed reading how you are dealing with your situation. Each of us have our own story, and yours' says "winner" all over it. I found that my children were a great help to me. I told them as much as they could understand, and in their own way they helped to make the path a bit easier to travel. You have the best in terms of docs and hospitals. The two you have been in contact with were (especially MDA) a possibility for me, but I choose the med school/hospital where I worked at the time based on the proximity and the surgeon I worked with - and it was easier with the kids. It's my prayer that you will continue to be a survivor, and that in time I'll know you as an 11 year survivor. Stay in touch. All my best, Doc (51 and glad of it!)

Urachal Questions

by Beverly_1 on Wed Feb 01, 2006 12:00 AM

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Hi Doc! I'm new too! I'm a 36 year old female who was diagnosed with Urachal Cancer on 1/17/06. They removed part of my bladder as well as the urachus on 1/12. The pathology report came in later. It appears to be in the earlier stages but I'm very concerned about these "seeds" I've been reading about. Did you have any? Also, do you mind if I ask what your surgeries were for? What did they remove? Did your Surgical Oncologist feel chemo/radiation was too experimental back then? Do you know if he feels the same way today? I've tried calling MDA a couple of times but all they do is transfer me. No one seems to be able to help. I'm glad to see that you have beaten this and thank you for staying in touch to inspire others. Beverly :)
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