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!
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
I replied on the other thread - but then spotted this one too. I agree your story is an inspiration - just what is needed amongst all the negative stuff we read about adenocarcinoma of urachas or bladder.
Catherine it was good that they could cut it out whilst it was small - dzkimmi - do you mind me asking what size your UA was when it was discovered? As you both know - surgery is the best chance of a cure.
I had symptoms for a while - that were put down to other medical problems - so I have only known about the UA for a relatively short time - another reason why the current prognosis is so hard to accept.
Heading off to bed - its been a long day chasing alternative therapies in the city
I responded Above about 7 years ago. I didnt Have the exact same cancer as you, but it was an adenocarcinoma if the bladder urachus.
I had Surgery to remove the tumor and then radiation and chemo. Happy to say that I’m a 23, almost 24 year survivor!
The best advice I can Give you is to stay positive and fight with every ounce of your being. Learn some meditation strategies and create a positive mindset where you focus completely on getting healthy! I’m not saying I never felt defeated and sad .. but I didbt Let myself dwell on it - I found The silver lining in whatever I could.
The cancer was life changing! I am Alive, well, and sooooo thankful! I apprecite Every single person in my life so much more! I am Thankful for each and every day I can Get out of bed and go about living my life. I have A new little grandson and I feel So blessed to be here to get to know him!
Be strong! I’ll be praying for you!
The following user(s) said Thank You: Schuls, Nreidy
I had stage 4 bladder cancer, my bladder and prostate were removed in 2017, after a month cancer came back with a vengence, lungs,liver,and lymph nodes. I was placed on palliative care and was offered immunotherapy. after a few months I started getting better and the cancer was going away. Ive recently had a CT scan done and am waiting for results. Everyone is different for me KEYTRUDA worked but there are many new immunotherapies coming out , one may work for you! Don't go by percentages I know I used to do the same. but by that scale I would have died Dec of 2017. its 2019! never give up!
Diagnosed Sept 2015 noninvasive
1st turbt Oct 3 2015, 2nd turbt Nov 13 bladder,
Completed 6 BCG initial treatments 01/11/16 02/09/16 No Cancer!
08/09/16 Cyto shows red spots on bladder, TURBT prostate scheduled
09/12/16 Cancer is back Ta prostate ,T1 high grade bladder papillary uthelial.
Cancer has invaded muscle getting RC.