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Re:urachal adenocarcinoma

8 years 2 weeks ago #39194 by CatherineH
Thank you for posting this. It is wonderful to hear from someone first hand who has been through this particular journey. You inspire me to hope for the best rather than dwell on the fears that accompany any type of cancer diagnosis.

My adenocarcinoma was not urachal but totally inside the bladder. I also had a partial cystectomy at the dome where the tumor was located. Fortunately mine was still considered small (1.6 cm) but it had wormed itself into the first half of the wall muscle. After getting clean margins and no lymph node involvement detected, I had no followup treatment other than continuing close monitoring with regular cystos and periodic CT scans.

Again, welcome to the forum and thanks for sharing your story!

Best wishes... Catherine
Forum Moderator Team

TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN

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8 years 2 weeks ago #39188 by dzkimmi
I am a 16 year cancer survivor. I had adenocarcinoma of the bladder - urachal origin. Not sure if its the same thing you guys are talking about. I just wanted to give you some hope :)

I was stage 3, and my only symptom was some blood in my urine. I wont go into the whole story, just wanted to let you know what treatment I had.

I had surgery to remove that portion of my bladder (where the tumor attached - top dome area). Then I had 6 weeks of radiation, and 6 months of chemotherapy (cistplatin and 5-FU, then changed to carboplatin & 5-FU). This was 16 years ago, and I am sure they have better drugs/procedures now.

Regardless, I am still here, 16 years later. I am pretty darn healthy. I have a few side effects from all the treatments, but nothing that keeps me from doing my daily tasks. I work full-time, excercise and pretty much do anything I choose.

I prayed a lot, and still do. I refused to allow the cancer to stay in my body. I think staying positive and fighting with everything you have is the best strategy!

If you have any questions, please ask :)

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8 years 1 month ago #38965 by dixie5
Hello Catherine

thanks for your input - I have investigated the link and posted there hoping someone will come up with an idea.

That attitude you expressed is so right - doing ok till someone tells you otherwise - that is one of the things that helped me the morning following the bombshell - I realised that although the news was worse - physically I felt exactly the same - the power of a positive mind is all important.

take care off to catch up on some ZZZZ's


dixie

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8 years 1 month ago - 8 years 1 month ago #38963 by CatherineH
Hi again Dixie... I have done some searching and found a website called CancerCompass. I don't know anything about it but it has a discussion forum much like we do.

I found a thread that goes from 2005 up through this year where several people discussed their urachal adenocarcinomas. It is the most discussion I have found to date about this cancer. Also, there are other threads from a few other people as well. Topics range to surgical options to several who have gone through chemo.

If you want to explore more there, just type urachal or adenocarcinoma into the search box at the top. You don't have to join to read the posts, only if you wish to comment yourself.

Urachal Cancer Survivor thread

My best to you and your Mum,
Catherine

Best wishes... Catherine
Forum Moderator Team

TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN

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8 years 1 month ago #38952 by CatherineH
Hi Dixie... Thanks for asking about me, but I took Mike's (mmc) advice that I am doing fine until someone tells me differently! My next checkup is on October 10th so I'll let the doctor tell me then how I'm doing.

Seriously... a bulletproof vest might have lessened the shock of hearing that kind of news. I'm so sorry to hear that the doctors have not been able to recommend any other options for you. Are there clinical trials over there to look into?

When do you meet with your doctor again?

Best wishes... Catherine
Forum Moderator Team

TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN

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8 years 1 month ago #38950 by dixie5
Hello Catherine

thanks for your kind thoughts - yes a lot has happened since I last posted - it makes for grim reading but suffice to say I am determined to stay positive - its doubtful that I will be offered any treatment - I have been told not to build my hopes up - however I am clinging onto the thought that they will rake up an experimental protocol from somewhere as its my best/only chance against this UA. Will know one way or the other next week - I should have worn my bullet proof vest to my consultation - hearing those words was like being verbally shot - its not me I am concerned about - its my family - it has hit them hard.



How are things with you at the moment?

all the best Dixie

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