Urachal Cancer Survivor

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RE: Urachal Cancer Survivor

by chukman on Wed Sep 27, 2017 02:54 PM

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Wondering a few things. 1) when were you first diagnosed? 2) what treatment did you have? 3) did you get a full all clear cancer free? 4) did you have reoccurrence and how many years later? I was diagnosed Dec 2010. Had radical cysectomy with ideal conduit Feb 2011 and no further disease found since then. No other treatment. I'm now not being followed so curious if and when it came back.

RE: Urachal Cancer Survivor

by vtoole on Wed Sep 27, 2017 03:02 PM

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Call Bill A and ask him for Dr. Seifker Ratkde's number. He was our first contact at MDAnderson. Tell him Vivian Toole recommended you call and that you would like to be in touch with Dr. Radtke directly. I know him well and have worked with him in terms of MDA donations.

RE: Urachal Cancer Survivor

by vtoole on Wed Sep 27, 2017 03:18 PM

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I would highly recommend you go back in this site and read the multitude of entries people have posted in terms of treatment options. This is chock full of other people's' experiences, treatments, testing, etc. that you will find extremely helpful. I recommend that each time someone finds their way here and asks questions. This will give you tons if information - such as Foundation One genomic testing, targeted therapy, immunotherapy, surgeries, etc. hopefully, you can find the time and strength to do that here where so many have shared specifics of their journey. I used it to ask my husband's doctors a plethora of questions and treatment options. It's a gold mine. Positive energy thoughts sent your way!

RE: Urachal Cancer Survivor

by austinjar on Fri Sep 29, 2017 03:45 PM

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On Sep 27, 2017 3:02 PM vtoole wrote:

Call Bill A and ask him for Dr. Seifker Ratkde's number. He was our first contact at MDAnderson. Tell him Vivian Toole recommended you call and that you would like to be in touch with Dr. Radtke directly. I know him well and have worked with him in terms of MDA donations.

Thank you for the great information. My husband received his port yesterday and I read through all of the comments during that time and took notes. I have tried to find a number for Bill A, but not really sure where to look other than MD Anderson's page. Nothing showed up for anyone with that name there. Do you have an email address or phone number for him? You seem like such a good source. Thank you again for taking the time to respond.

- Jeanine Renfro

Also, my youngest daughters name is Vivian. :-)

RE: Urachal Cancer Survivor

by Michaelscrosby on Fri Sep 29, 2017 07:14 PM

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Dr Radkte’s team 713-745-7575

RE: Urachal Cancer Survivor

by vtoole on Fri Sep 29, 2017 07:27 PM

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You are so welcome. Sorry I forgot to include Bill's number. (713) 443-8446 The young man who just responded, gave you Dr. ASR number. That's great! Vivian is such an old name, but seems to have become popular again. Thinking of you and your family. Please keep us posted on your husband's Rogers! Vivian

RE: Urachal Cancer Survivor

by austinjar on Sat Sep 30, 2017 04:00 AM

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Thank you everyone for all of the info and support. I was able to get in contact with Dr Seifker- Radtke. She reviewed my husbands scans and referred me to the GI department. She says it does not look like Urachal to her. I am now attempting to contact the GI department. Thank you again for your help. Jeanine

RE: Urachal Cancer Survivor

by dzkimmi on Fri Oct 13, 2017 10:10 PM

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Just posting to offer hope to any of you diagnosed with this dreaded disease.

I am a 22-year survivor of adenocarcinoma of the bladder, urachus. I was in my early 30s when I was diagnosed, with two small children. It was a scary time, but I am still here! I hope my story helps you, and gives you some hope! Whatever you do, dont listen to all the doom & gloom. You can beat this, but you have to believe you can! 

 I'll tell you a little about my cancer, and what they did for me. Back in June of 1995, I had blood clots in my urine & that sent me to a wonderful urologist, Dr Richard Nichols in Thousand Oaks, California. He saved my life! He did test after test, until he found something irregular. Any other doctor would have probably sent me home after the 3rd or 4th 'normal' test result. He just kept on keeping on! I had blood tests, various xrays, cat scans, cystoscopy, colonoscopy, had scopes put everywhere! Finally found the tumor with an xray taken as I was peeing (gross!!!). Because I was young, healthy and no longer was presenting any symptoms, he originally thought I had a cyst on my bladder.

He said he was not sure, though, so we scheduled surgery right away. He removed the tumor and the tip of my bladder. The tumor had gone through the bladder wall, just barely. It wasn't until I woke up from the anesthesia and saw my husband crying that I knew something was wrong! He told me it was cancer. I had a tumor a little bigger than a golf ball. After discussing things with Dr. Nichols and finding out that the borders were clear and there was no lymph node involvement, I felt a little better. But he had never seen a tumor like this, and other urologists he asked had not either. Our pastor came to visit and I immediately thought I was about to die! He was just being a friend, and being supportive - he was not there for my last rights. Whew! After the surgery an amount of time went by before we knew exactly what kind of cancer, the stage, etc. 

Dr. Nichols was great, he found me a very talented oncologist, Dr. Evans Slater in Ventura, California. Prior to my visit, Dr Slater did a bunch of research. The cancer is very rare, as you know. At the time there was very little information on this cancer. The internet was not as useful as it is now. He probably had to call tons of people to find info. He explained that this cancer is normally found in much older people, mostly men. Smoking and asbestos were the things, at that time, they thought caused it. Neither of these things were the case with me! I have never smoked! 

Anyway, Dr Slater wanted more info, so he sent me to the USC Norris cancer center to have my tumor evaluated by their tumor board. The guy there was kind of out there & wanted to immediately remove my bladder and make me a new one! I think he wanted to experiement on me but I was not going to go for that idea! They also agreed that this was a super rare cancer, and he also had never seen a case prior to mine. 

Dr Slater agreed with me that the USC dr (I cant remember his name) was too extreme in his ideas, so he did a bunch more research and decided to hit me with chemo & radiation and hope to get any 'cells' that may have broken off from the tumor. I was young, healthy (other than the cancer), and he felt that I could tolerate the treatment. I had 6 weeks of radiation combined with 6 rounds of chemo.

The combination wore me down pretty quickly. I had 5FU and Cistplatin (later changed to carboplatin) chemo treatments. The 5FU was in a pump that I kept on for 5 days each month. The cistplatin was given to me in the hospital & I had to stay overnight because it was such a dangerous drug. It could cause kidney damage, nerve damage & hearing loss! I would have the cistplatin & they would monitor me all night long, and then I could go home after it was all given to me. I would then have the 5FU for 5 days. A nurse would come to my house and unplug me at the end of the 5 days (loved that day). Then I had 3 weeks to build my body back up. Then do it all again. I only had the Cistplatin for 2 rounds because after the second round of it I started getting ringing in my ears. My doctor then switched it to carboplatin, which was not nearly as toxic to my body.

I had two small children, 6 and 4 years old. I tried to be as normal as possible. I tried to stay positive and at the same time be honest with the kids. I went and watched all their sports, school things, and helped them understand that even thought I was sick, the medicines were necessary & hopefully curing me! Hopefully this taught them about hope & living for the moment. 

Towards the end of my treatment, maybe the 4th month I had to start taking some drugs to build my blood cells back up (neupogen/epogen??), but other than that no other major problems. I really was wiped out. It was like having a really bad flu for 6 months. Headaches, body aches, diarrhea, nausea, and weakness. Everything tasted and smelled like metal! I think they have much better meds now to help with those side effects. I took Zofran and that helped, but towards the end I couldn't even keep that down. I lost a ton of weight and was really weak, but it was only temporary.

I completed all my treatment Dec. of 95. Have been fine ever since. I did get some 'after effects' from treatment. I was put into premature menopause, I have some nerve damage in my spine that basically makes me jittery at times, but thats it. I am alive & well & live a nice, normal life! 

The treatment was not fun, I felt like crap for that full 6 months, but it was worth it :) I know not everyone is as lucky, but I think having a positive attitude and just going on with life really helps! I also believe in the power of prayer. My church family was always there ... 

You asked about the prognosis. Sadly, it was not good. But my doctor never told me how dire the outlook was - so I never knew! Ignorance is bliss sometimes. They said because I was stage 3, the odds of surviving more than 2 years was like 30% or something. After I was cancer-free for maybe 5 years, thats when he told me!  You just never know what the future holds. 

I will be praying for all of you! Hoping that you can come back in a few years and offer some hope & encouragement to others! 

I hope my story helps you feel a little more optimistic about things. Sometimes just hearing of someone else who has been through something similar & survived helps. Good luck!!!

RE: Urachal Cancer Survivor

by antoine19 on Wed Nov 15, 2017 01:52 AM

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Hello Dr Songbird,

My uncle is suffering from Urachal cancer stage 4, he had a partial cystectomy of the bladder and the cancer is spread to lungs unresponsive to chemo and immunotherapy.  after another dose of chemo the cancer has spread to the large intestine.  Please advise with any feedback or direction.  He is in Detroit at the Karmanos cancer institute.  They sent him to NIH in Maryland yesterday and after scans there finding that the large intestine tumor is large they refused to treat him and asked him to return to Detroit to resect the large intestine.  Any advise on where would be the best place for him to get treatment.  He is 49 and in good shape and can handle agressive treatements.  Your help is greatly appreciated.  Thank you.

RE: Urachal Cancer Survivor

by vtoole on Wed Nov 15, 2017 02:16 AM

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On Nov 15, 2017 1:52 AM antoine19 wrote:

Hello Dr Songbird,

My uncle is suffering from Urachal cancer stage 4, he had a partial cystectomy of the bladder and the cancer is spread to lungs unresponsive to chemo and immunotherapy.  after another dose of chemo the cancer has spread to the large intestine.  Please advise with any feedback or direction.  He is in Detroit at the Karmanos cancer institute.  They sent him to NIH in Maryland yesterday and after scans there finding that the large intestine tumor is large they refused to treat him and asked him to return to Detroit to resect the large intestine.  Any advise on where would be the best place for him to get treatment.  He is 49 and in good shape and can handle agressive treatements.  Your help is greatly appreciated.  Thank you.

MD Anderson. Dr. Arlene Seifker Radtke. Department of Urology. It is the best place for treatment and she has invented the chemo that has helped so many!
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