Urachal Cancer- Seeds Found On Intestines

I'm a 39 year old male diagnosed with Urachal Cancer, cyst has been removed and part of bladder which results came back that ther was no cancer in my bladder. Seeds have been found on my intestines. The doctor said this is a very rare form of cancer and because of this they do not have much information on sucess of treatments. I'd like to talk to anyone who has gone through or going through the same situation. Surgery was just this past June. Anyone with any information or knowledge of this cancer, please contact me.
Thanks,
Jeff

Jeff...please contact MD Anderson In Houston Texas! Also I wanted to let you know that if you start receiving treatments other than home, consider contacting Corporate Angels Network. They fly cancer patients at no cost to the medical centers where they will be receiving treatments. Good luck with everything.

Paula

Paula,
Do you have a specific contact number for MD Anderson? I tried calling the main number and was transferred SEVEN times. No one had any idea who could talk to me!
Also, thanks for the tip on Corporate Angels Network. I'm going to check up on that!
Jeff,
I'm a 36 year old female and I was just diagnosed with Urachal Cancer on 1/17/06. My surgery was on 1/12/06. I don't have the intestine issue (that I know of) but I can tell you I understand what you're going through. It seems like no one has any "real" experience with Urachal Cancer. The Oncologict I went to told me he had "read up on it" the night before my appointment. I'm trying to find info too. If I do, I'll share.
I wish you well!
Beverly :)

Dear Jeff,

I'm assuming you have an Oncologist or was your surgeon confident that no further treatment was needed? I understand your frustations with the lack of information available on this rare cancer. My mother's Oncologist is the one who referred her to these clinical trials at MD Anderson, so if you have an Oncologist mention the clinical trials that are currently going on there. My mother started the treatments in Houston first and now receives them in her home town (Atlanta) so she is still considered a part of the study. I don't know what state you live in but there may be clinical trials on Urachal near you. I will ask my dad to forward me the departments and phone numbers they were dealing with and I will get back with you. You may email me at --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ----

Paula

Hi Jeff,
I'm a 36 year old female and I was just diagnosed with Urachal Cancer on 1/17/06. My surgery was on 1/12/06. I don't have the intestine issue (that I know of) and, I'm sorry, but I don't have any info to share yet but I can tell you that I understand what you're going through. It seems like no one has any "real" experience with Urachal Cancer. The Oncologict I went to told me he had "read up on it" the night before my appointment. He thinks I should do no chemo or radiation and just test w/ blood and CT Scans every 3 months. Given that he has no real experience, we're trying to find other Oncologists who might. So far, it's been difficult but if we uncover anything that seems helpful, I'll share. Would you do the same for me?
May I ask what you had removed? My surgeon took about 1/3 of my bladder as well as the urachus but nothing else. I've read that many doctors seem to prefer to remove the belly button and sometimes the lymph nodes.
Also, have you read the other messages regarding our type cancer? There's a gentleman named Craig that had only surgery several years ago and he's been cancer free for (I think) 11 years. That's a good sign, I'd say.
I wish you well!
Beverly :)

Paula,
Thanks for your response. As you may have noticed, your info was removed from your message but I assume it's OK to post contact info for doctors. I'll just check to see if you've replied to my message once in a while.
My surgeon did refer me to an Oncologist who told me he had "read up" on my type of cancer the night before my appointment. I mentioned MD Anderson but he did not seem to recognize them (we're in Arizona). I can't remember if I said this before but ... I've tried to contact MD Anderson a couple of different times and, after several transfers, still ended up no closer to information on trials or anything else.
May I ask how your mom is doing? When was she diagnosed? What form of treatment have they gone with?
I hope all is well.
Thank you, again, for you reply!
Beverly :)

Hi Beverly...my mother was diagnosed exactly one year ago. By that time she was diagnosed with stage IV urachal adenocarcinoma with a very poor prognosis. Last March she had the tumor removed from the dome of her bladder in May she had a craniotomy as it at spread to her orbital area. Beautiful recoveries from both. Started radiation therapy to the orbital area. Because seeds were also throughout her body she started Chemo at MD Anderson in Houston Texas. By that time it had spread to her spine. Her chemo regiment has changed a few times and radiation seems to keep the tumors on her spine at bay and helps with the pain. If your Oncologist isn't going to confer with others about treatments I highly recommend you find one who will. Don't give up because there is hope!!! I have read some remarkable cases. Have you researched any alternative methods? I will get back with you on the exact agents that have been used on my mom. I will pray that you and Jeff will be blessed with no further treatments needed :)

Paula

To everyone that has entries under urachal cancer, please also use the search engine and search urachal adenocarcinoma. There is a blog with about 72 entries including the ones I wrote re: my sister who is a 4 year survivor, undergoing experimental treatment and we just found out her cancer is SHRINKING. She is on an experimental protocal at Columbia Presbyterian Hospital in NYC. Her oncologist is Dr. Petrylak. Please have your doctor contact him or call directly. You can find his number on the hospital web site. Tell him you got his name from this site and Melissa (Jane's sister told you about him).

There is so much hope. For those MD Adnerson folks, look up the entries for a Dr. Songbird -- he has a GREAT urachal story and is willing to help anyone. You can reach him via MD Anderson -- his real name is on the messages when you do the search noted above.

Maybe everyone can start using the other blog so we can all stay in touch. There is proabaly about 22 other folks speaking on the messages under urachal adenocarcinoma. Also check out the ones under bladder cancer.

Best to all
Melissa (Jane's sister)

Hi,
I am a nurse and was diagnosed with a "likely urachal remnant cyst". Of course that led me to do tons of research through literature reviews. Well, not too many health care professionals know much if anything about this condition. However, I did find some important things to impart. The literatures states that all urachal anomalies should be removed due to the possibility of infection and the possibilitiy of late malignant changes. What you will hear from most health professionals is "You've had it all your life, so why do anything?" Well they are wrong, for the reasons I stated. Now...who has the most experience with them? Don't know, but a way to tell is by doing a search of urachal anomalies and looking at the the authors of published papers, which you will see when you click on the "more information" I did an exhaustive research on this, and I found some very important information:
Assisted Robotic Surgery is better than traditional laproscopic surgey. The robot used is the daVinci. The reason why it is better, is because it is very precise in getting all the remnant. This is important, because you don't want any left behind to grow. More and more hospitals are using the daVinci. Go to www.intuitive surgeryinc.com. There will be a hospital locator tab. Another important piece of information. Dr. Robert Nagourney is a hemo-oncologist and has a lab for determining the best chemotherapeutic regeimes for patient specifi cancers. He is a world renowned scientist. He is at rational therapeutics.com
I have chosen to go to the Lahey Clinic Medical Center in Mass. Dr Ingolf Tuerk is a world renowned urology surgeon and he has experience with urachal cancer, and he uses the daVinci in some cases. I hope I have given you valuable information here. Urachal anomalies are rare- 1 in 8,000. They can be benign. But all have to come out,( confirmed by Dr. Tuerk). Wish me luck. I wish you the best.
authord

Hi,
I am a nurse and was diagnosed with a "likely urachal remnant cyst". Of course that led me to do tons of research through literature reviews. Well, not too many health care professionals know much if anything about this condition. However, I did find some important things to impart. The literatures states that all urachal anomalies should be removed due to the possibility of infection and the possibilitiy of late malignant changes. What you will hear from most health professionals is "You've had it all your life, so why do anything?" Well they are wrong, for the reasons I stated. Now...who has the most experience with them? Don't know, but a way to tell is by doing a search of urachal anomalies and looking at the the authors of published papers, which you will see when you click on the "more information" I did an exhaustive research on this, and I found some very important information:
Assisted Robotic Surgery is better than traditional laproscopic surgey. The robot used is the daVinci. The reason why it is better, is because it is very precise in getting all the remnant. This is important, because you don't want any left behind to grow. More and more hospitals are using the daVinci. Go to www.intuitive surgeryinc.com. There will be a hospital locator tab. Another important piece of information. Dr. Robert Nagourney is a hemo-oncologist and has a lab for determining the best chemotherapeutic regeimes for patient specifi cancers. He is a world renowned scientist. He is at rational therapeutics.com
I have chosen to go to the Lahey Clinic Medical Center in Mass. Dr Ingolf Tuerk is a world renowned urology surgeon and he has experience with urachal cancer, and he uses the daVinci in some cases. I hope I have given you valuable information here. Urachal anomalies are rare- 1 in 8,000. They can be benign. But all have to come out,( confirmed by Dr. Tuerk). Wish me luck. I wish you the best.
authord