Urachal Cancer New Diagnoses

Hi
My name is norma. I live in Baltimoe Maryland. I have been diagnosied with urachal cancer. My urology said that surguery is not an option. I have any CT of abdomen, pelvic, chest, and a Pet scan. Where do I go for treatment in Maryland or anywhere and what types are treatments are available to me? I think my doctor has sent me home to die. What do I do?
Help?

Dear Norma, I am so sorry to hear of your recent diagnosis. I was diagnosed with urachal cancer in June of this year. I have had som surgery and am now seeing Dr. Dean Bajorin at Memorial Sloan Kettering in Manhattan. I also saw Dr. Doug Scher at Weil Cornell in Manahttan for my surgery. I would recommend these Doctors asthe best in this part of the country. I was told the only other place to go would be MD Anderson in Texas. You cna find thes Drs. info at the websites for the hospitals i mentioned. Good luck in your pursuit for treatment, don't give up. Love, Lynn

Dear Norma
I was reading your message and I felt your pain and I wanted to reach out to you. I too have urachal cancer , I just found out this sept. But I have had surgery and I recovered quite quickly from having my belly button and half of my baldder removed. they found my left lymph node was involed aswell. So we are waiting for test results from MRI and CT scan.I live in canada and I have yet to find anyone in canada with this cancer. I hope you have found out more positive answers to your cancer and I hope you will be able to responed back. I pray you are still able too and that the doctor was wrong and they could operate.

Norma

There is so much hope, please, please do not go home to die. My sister has been under care for 4 years battling urachal and has been thru 2 chemo regimes and 2 surgeries and still doing great and living life. She had a re-occurence in March and could not have the tumor surgergically removed so her Dr. put her on an experimental daily pill and as of Monday, it appears her cancer is shrinking and has not spread. She feels good and looks good including her hair after 170+ days on this pill. Please email me off line your reach number so that I can help you. Email me at ML8174@yahoo.com.
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. Her experimental protocal is 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 Anderson , 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 we 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 you Melissa (Jane's sister)

melissa did your sister have cancer still in her body and that is why the doctors gave her chemo? because my Doctors said that I don't need chemo because there isn't one for this type of cancer. I had lymph node on the left side involved and had MRI and CT scans that showed only small spots on the lung. They tell that it's nothing to worry about and they will keep an eye on them.Is chemo used as insurance or did your sister have to do something.
I have yet to speak to a chemo doc. but my doc. thinks he wont give me anything? eventhough they tell me it all ways comes back.I have only had my surgery in sept. and had half my bladder taken and my belly button. If anyone out there has the answers to these questions please help me!

Norma
Currently Jane has a 2.5 cm cancerous lymphnode near her aorta. They cannot surgerically remove it since it is too close to her aorta and thus risky. So she currently has urachal cancer in her lymph nodes only. The experimental trial she is on has prevented the spread of the cancer since last March and it appears the tumor is shrinking (Nov. PET scan indicated 2.3 cm). I'll back up and tell you her story:
May 2002 - diagnosed with urachal, had 1/2 bladder removed and lymph nodes. Got clean margins and showed no lymph node involvement. She in effect was cancer free since it was all removed surgerically. She stayed that way for 2 years (with scans and a cycstoscope every 3 mos.). She rec'd no chemo at that time since the her oncoloigist and surgeon felt there were no protocals available to treat her. So we went into wait and see mode.

After 2 years -- after 2 years, some lymphnode involvement showed up in her pelvis and 12 lymphnodes were removed to see how advanced the cancer had spread. 2 of the 12 showed positive for cancer. She was then treated with 4 months of 5FUL, irinotecan and avastin.

After 1 and 1/2 years (that was just last March 2006) -- another lymphnode popped up and the PET scan revealed it was cancerous since no bipose could be done. Her oncolgist told her that there are about FOUR regimes available to try including the one she already did which he believed kept the cancer at bay for 2 years. She choose the experimental daily pill since it was not a chemo drug but rather a new way to treat cancers by blocking cancer growth cell enzymes. She has not had any chemo side effects and a great quality of life since March (sometimes alittle tired and somtimes body aches) other than that, she even retained her hair!!!
I REAALLLLLLYYYY encourage you to contact Dr. Petrylak or a Dr. Oh out of Dana Faber in Boston. It is worthwhile to take a trip and see what they think. They can always direct a local oncoligist to give you a protocal. There is even talk of a curative protocal in Japan.
As for the lungs, at least 2 folks on the blog have had their urachual lung cancer cured using a drug called Altima and radiation. Also, I have read many stories about folks on just a daily irinotecan pill and have had great results in terms of preventing spread. Please do internet research on irinotecan, avastin and Altima and urachal. You'll see some positive statements. For any doctor to tell you there is nothing that can be done is absolutely wrong. The advantage of having some splotches of cancer on a scan is that you can start a protocal that has limited side effects and see if you are responding (ie: the splotches are decreasing in size). No sense waiting until the cancer is in a spot causing a probelm then you cannot avail yourself to all the protocals since you will be up against time. If however, you currently have no evidence of cancer, you may just want to wait and see and do immune enhancing things just in case. Please feel free to contact me directly or anytime with your questions.

Prayers and best wishes
Melissa

Hello,
I am very new to this website but would like to share my story. My sister was diagnosed with cancer in July. I think that was worst month of my family's life. During that time she had a partial bladder removal. Weeks went by and nothing was done. The surgeon never even consulted a urogolist(sorry for the spelling. He gave us alot of false hope and promises. Finally we made it to Rosewell Cancer Center the first they sent us home because the surgeon did not give them enough to go pn.

Mind you the cancer was spreading at a very fast rate. She had already had tumors on her liver.

October she finally started chemo at Roswell which was, Gemzar and cisplatine. After two Mondays of treatment my sister went the ER c/o chest pain. After a ct scan the cancer had spread to both lungs. We back to Roswell and the oncologist said the she had 6months to live. He gave her two choices go home with self support or start xeloda. She took the xeloda of course. My sister is 30yo that's it and we were suppose to go home and let her die? We return to Roswell for the follow-up visit and guess what? The xeloda was working. the tumors had not shrunk but the remained the same.

Thanksgiving week (Mon 20th)we had an app with Dr. Siefker at MD Anderson. The jumped on my sister case and started treamnet right away. Monday and Tuesday was a day full of blood work and scans. Wednesday the admitted her to the hospital to start treatment. Our hearts smiled. The were so good to us and they took the time to show us the scans. my sister has alot of spreading in her abd as well as her lungs and a spot around her belly button. Dr. Siefker and her team never said anything negative. That wednesday she was started on gemzar(over 30 mins), cisplatine(over 4 hours), leucovorin(over 15mins),5fu(over 18hours) for five days. As you can see treatment is very agressive. MD Anderson is great so so great. They see people with this type of cancer every month(about one person each month)

Don't give up!!

Love,
Molaka

Can you please update us on your sister's progress.  My husband will start chemo on 8/6 with a 2 hour chemo session then 18hrs.of 5FU a day for 5 days.

Thanks and I hope all is well !