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PhilA's Message Board Messages

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More Tumors Needed! Several years ago, we sponsored a research study to investigate the urachal tumor DNA. Using leading edge technology, we are aiming to find commonalities that will lead to improved treatments and higher survival rates for urachal cancer patients. The problem is, few UC patients = low sample size and a less effective study. So we need your help. If you are a patient/survivor OR if you know of a family who lost a loved one to this horrible disease, please contact Wiam Belkaid at wiam.belkaid.chum @ssss.gouv.qc.ca and get that tumor into the study. We need your help if we’re going to have a chance at stopping this disease. www.urachalcancer.com

RE: Urachal Cancer Survivor

by PhilA - April 05 at 8:03 PM

Hi Christina, I’m sorry to hear of your news. While I haven’t liaised with patients and doctors in the UK, I recently communicated with a French couple who sought treatment in France. Let me know if you’d like me to connect you. Phil

RE: Urachal Cancer Survivor

by PhilA - March 18, 2018

On Mar 11, 2018 5:35 PM vtoole wrote:

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.
Yes, that’s me. I lead the Bikus Urachus team and we’ll be participating in our 6th ride to conquer cancer this July. You can find our more about us at www.urachalcancer.com Or on our ride page at www.conquercancer.ca /goto/bikusurachus2018 Always looking for more riders and to help others get fundraising initiatives off the ground. Phil

RE: Urachal Cancer Survivor

by PhilA - March 11, 2018

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 PhilA - March 11, 2018

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
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 - January 10, 2017

Hi Michael,

I'm glad you have an appointment with Dr. Radtke.   I am a urachal cancer survivor.  My surgery date was Feb 2012.  The standard procedure is to remove the umbilicus whether or not there is any cancer that is seen.  That's what I had done.  I also chose to have chemo of cisplatin, taxol and ifosfamide. My regimen was different that the one given for standard adenocarcinoma because part of my tumour was identified as sarcomatoid.  Dr. Radtke will fill you in on the best treatment for your particular situation and whether you should have an additional surgery.  Also - it doesnt hurt to get a second opinion on the pathology.  I had my second opinion from Johns Hopkins.  Phil

Hi vtoole,

After not checking this thread in a bit, I just logged in and I am shocked to hear your news.  It makes me more determined than ever to find some cure to this thing.  We are with you and here to help or just listen.

 

P

The conference was really good.  I only stayed for the urachal cancer portion.  You can see pics on the Bikus Urachus facebook group page.  One thing that I didnt expect was that my team is putting together clinical guidelines for urachal cancer treatment in canada.  This is really important bc they are driving a discussion amongst all the GU medical oncologists in Canada about the best treatment for UC.  Currently, these guys independently read the literature then go to google and ask their friends.  This will drive collaboration and some real thinking about how to improve treatment for the disease.  It's really awesome!

To get your tumour into the study, ask Dr. Sridhar and she'll take care of it.  I'm sure she'll be the person responsible for getting the study through ethics at PMH.

I'll speak to the advisory board about posting studies on the website.

I hope to be in Toronto this summer and will look you up.

July 9th is the Bikus Urachus team dinner before the Ride to Conquer Cancer on July 11.  You can be sure that the BU team will be thinking about you.

 

Phil

Hi Julia,

I ran into Dr. Sridhar at the conference on Friday - she is a super lady.

 

With regards to your questions...

- I've tried to put a feed from Google Scholar on the site but cant seem to make it work.  Were you thinking there should be links to specific research reports?  If so, which ones?  (I have a bunch.)

- The site already has a link to BCAN and to Bladder Cancer Canada.  I noticed that your link to the BCAN UC feed only works if you are signed up.  I will make a note of that.  Good suggestion.   

You'll be happy to know that both BCAN and Bladder Cancer Canada have agreed to promote www.urachalcancer.com .

I also set up a facebook page on urachal cancer that can serve as a message board.

Lastly, check out the Bikus Urachus public group page on Facebook where you can find updates on the BU team and how we are raising awareness on UC.  https://www.facebook.com/#!/groups/bikusurachus/

 

Keep the suggestions coming!

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About PhilA

Patient
Bladder Cancer
Cancer Diagnosis, Cancer Treatments, Clinical Trials and Research, Diagnostic Imaging, Surgery

Diagnosed with Urachal Cancer.
Surgery on Feb 9, 2012
4cm tumor removed + urachus + belly button + dome of bladder

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