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"I went into surgery with aggressive high grade stage T1 and came out with aggressive high grade stage T3aN0Mx."
Due to my age, tumor location and other factors, I was a candidate for a neobladder. This meant that I would be able to use my normal plumbing to pee. If during surgery it is discovered that there are complications, I would awake with an ileal conduit having been installed. My tumors had been at the top of the bladder, around the ureters. If the urethra is compromised, the neobladder is not an option. The procedures performed were a radical cystoprostatectomy, pelvic lymph node disection, appendectomy, ileum harvesting and transection, and ileal neobladder construction. An approximately 35 cm section of the ileum was cut out 20 cm away from the ileocecal junction and the ileum was then transected. The 35 cm section was then reconstructed into a neobladder and hooked up to the ureters, urethra and anchored in place. It does not have the nerves or muscle control of a regular bladder but you learn how to squeeze it and wring it out by use of your abdominal muscles. It never goes to sleep and will alway behave and believe it is doing the work of a small intestine. I've had no reabsorption problems and by emptying it on a regular basis there have been no post-op complications. But, gaining control is an effort and it still wins the nightimes.
Attitude is everything. Your attitude affects the attitude of those around you. The decisions are yours. Do your research and ask your doctors everything you don't understand. Write down your questions and write down their answers. Be informed and don't let the medical profession lead you. Take charge of your life, as it is the only one you will ever have, be proactive, and well informed. Doctors are humans and as humans they make mistakes just like we do. Unfortunately they get to bury their mistakes and move on.
Always get second opinions and if you are getting a Radical Cystectomy and neobladder always go to a major University research center where they do many of these operations. Sure your local doctor was trained to do it but his experience and the nurses at the local hospitals' experience is minimal in comparison. If a major center isn't close to you, pay the money and go to one. You can't take your money with you when you die so put it to good use, the best medical attention you can get!
Any stage less than stage T2 is considered to be "Non-muscle-invasive". That means it only effects the interior surface of the bladder. The importance of the initial staging is CRITICAL to treatment and survival, especially if you've been told it is stage T1 high grade (aggressive). All treatments for non-muscle-invasive bladder cancer WILL NOT get rid of the cancer if it is other than superficial. That means it just keeps growing and growing while you undergo treatment for non-muscle-invasive bladder cancer. Non-muscle-invasive treatments only treats the stuff on the surface.
When a TUR is done, it is basically a cut and burn procedure. My understanding is the Dr. has two foot pedals and one controls the knife and the other controls the heat. As they cut they are immediately cauterizing the cut ( the old hot poker treatment) to control bleeding. This cauterization process can DESTROY cells and makes it impossible to determine if they were cancerous. After the cut and burn is completed the bladder is flushed and the contents of the flush become the biopsy material. If your pathology report says anything like "thermocoagulative artifact makes evaluation of the presence or absence of smooth muscle invasion quite difficult", the chances that your biopsy was in the understaged category is very high. The staging is done on what they can find, not what was destroyed. For help in reading your pathology report go to www.pathologyoutlines.com/bladderpf.html. A good TUR with muscle in the specimen is essentail.
From http://blcwebcafe.org/content/view/103/113/lang,english/, cystectomy is advised in the case of large or high grade T1 lesions, or in the case of muscle invasive disease stage T2 and higher. Up to 50% of T1 high grade tumors progress to invasive tumors. That BCG can spare the bladder in T1 high grade tumors is largely documented but the chance to save the bladder when the tumor is still present after 2 cycles of BCG is very low. High grade tumors are at risk life long.
The importance of your initial staging being correct when you've been told it is T1 high grade is critical to your long term survival. It is also critical to determining your treatment. Your life depends on it. Get second opinions of the pathology report, get another biopsy, be proactive, the life you save is yours.
|Last Updated ( Friday, 14 November 2008 )|