Urachal Cancer Survivor

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Urachal Surgeon NEW JERSEY???

by Vf101 on Fri Feb 23, 2018 11:03 PM

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Hi I've been reading all the posts under the Urachal cancer strand. I'm curious if anyone knows of a Surgeon or Urologist who they can recommended in Northern NEW JERSEY?? Not sure if my Insurance will accept them, but I can't find a surgeon who has any experience with this disorder. I'm close to NYC as well but my insurance doesn't accept Columbia Presb but would still call to get a reference. Any help would be great. Thanks, Vince

RE: Urachal Surgeon NEW JERSEY???

by vtoole on Sat Feb 24, 2018 12:03 AM

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On Feb 23, 2018 11:03 PM Vf101 wrote:

Hi I've been reading all the posts under the Urachal cancer strand. I'm curious if anyone knows of a Surgeon or Urologist who they can recommended in Northern NEW JERSEY?? Not sure if my Insurance will accept them, but I can't find a surgeon who has any experience with this disorder. I'm close to NYC as well but my insurance doesn't accept Columbia Presb but would still call to get a reference. Any help would be great. Thanks, Vince
Sloan Kettering in NY is very familiar with this cancer. I believe the doctor’s name there is Rosenbeeg. That hospital is one of the best in the country for cancer and does has experience with it! Good luck!

RE: Urachal Surgeon NEW JERSEY???

by PhilA on Sun Mar 11, 2018 12:05 PM

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Call dr. Jonathan Rosenberg at Sloan Kettering in NYC. He is an oncologist and sees a lot of urachal cancer. He will refer you to the right surgeon. There is a surgeon at Sloan Kettering who does this.

RE: Urachal Cancer Survivor

by PhilA on Sun Mar 11, 2018 12:25 PM

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Hi, Thank you for writing this story. I am a 6 year survivor of urachal cancer and went through a similar experience as you did when I was 44. All has been good so far, although my kidney function has been affected and I’m under the supervision of a nephrologist. Must be the cisplatin I took. Other than this blog, have you been involved in any awareness or fundraising campaigns for urachal cancer? I’m wondering if we survivors can put something together. Best, Phil

RE: Urachal Cancer Survivor

by PhilA on Sun Mar 11, 2018 12:27 PM

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On Oct 13, 2017 10:10 PM dzkimmi wrote:

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!!!

Hi, Thank you for writing this story. I am a 6 year survivor of urachal cancer and went through a similar experience as you did when I was 44. All has been good so far, although my kidney function has been affected and I’m under the supervision of a nephrologist. Must be the cisplatin I took. Other than this blog, have you been involved in any awareness or fundraising campaigns for urachal cancer? I’m wondering if we survivors can put something together. Best, Phil

RE: Urachal Cancer Survivor

by vtoole on Sun Mar 11, 2018 05:35 PM

Quote | Reply

On Mar 11, 2018 12:27 PM PhilA wrote:

On Oct 13, 2017 10:10 PM dzkimmi wrote:

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!!!

Hi, Thank you for writing this story. I am a 6 year survivor of urachal cancer and went through a similar experience as you did when I was 44. All has been good so far, although my kidney function has been affected and I’m under the supervision of a nephrologist. Must be the cisplatin I took. Other than this blog, have you been involved in any awareness or fundraising campaigns for urachal cancer? I’m wondering if we survivors can put something together. Best, Phil
I was wondering the same thing. I recall someone (was it you?) who was doing “bikus urachas?” I think it would be wonderful to do a fund raiser for this rate and mostly unchartered disease.

RE: Urachal Cancer Survivor

by UrologyCare on Thu Mar 15, 2018 02:25 PM

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Glad to know that you are a cancer survivor. I think you are very lucky that you didn’t need chemo because it’s really hard and difficult to bear the effects of the chemotherapy. I hope a good health for you in future.

 

RE: Urachal cancer is eligible for phase one clinical trials

by Angie420 on Sat Mar 17, 2018 05:20 PM

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Hi I'm not sure how this works just trying to make a post so that I can ask a question about how I can contact dr. Arlene siefker-radtke I was recently diagnosed a month ago was your urachale cancer and I live in Colorado and I'm just not sure if I should be seeking a second opinion from the MD Anderson or if I should just stick with University Hospital that I'm at I'm pretty scared   and this really need to know what I should do at this point I don't want to put my family out by having to go to Texas but I do want to try to live so I can be with my family so if that's what I need to do I am willing if anybody could please reach out to me and let me know how to contact the MD Anderson about you. Urachal cancer. 

RE: Urachal cancer is eligible for phase one clinical trials

by Ribz99 on Sat Mar 17, 2018 11:07 PM

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Hi Angie -I'm so sorry you are struggling with your choice of what to do for your treatment My SIL lost her short battle of 5 months with Urachal cancer and we were in touch with Dr. Radke in the later stage. As a look back- I would have insisted she go directly to MS Anderson instead of letting herd docs in NJ make wrong choices for her. Hope this helps and good luck.

RE: Urachal cancer is eligible for phase one clinical trials

by Angie420 on Sun Mar 18, 2018 01:17 AM

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Thank you for your reply I am so sorry for your loss this cancer is so brutal . I am going to try and contact md Anderson to see how I could go about getting a second opinion.  I just don't know how my family will afford to travel to Texas.  Guesswe will cross that bridge when we come to it.   

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