Ken Zaremba

family photos below

"I went into surgery with aggressive high grade stage T1 and came out with aggressive high grade stage T3aN0Mx."

location: Boulder Creek, Ca.
diagnosis: 6/24/2004 (age 63): TURB (7/07/04)high grade stage T1, second TURB (11/03/04) still high grade stage T1. Radical Cystectomy (12/27/04 ) high grade T3aN0Mx

In early 2004 I experienced pain and blood upon urination while visiting Hawaii. Upon my return to the mainland I visited my local Uroligist who performed a Cystocophy and announced that I had bladder cancer. On 7/07/04 I was scheduled for an outpatient Transuretheral Resection and Biopsy (TURB) and was informed there was a possibility I would be hospitalized. Due  
to the tumor being over 5 cm and surrounding the ureter from my right kidney a stint was necessary and constant irrigation of the bladder was necessary which resulted in a three day stay in the hospital. The catheter was removed after a couple of weeks and the stint a couple of weeks later. The biopsy came back as agressive high grade stage T1.
About 5 weeks after the TURB I underwent a six week treatment of BCG.  A month after the BCG I was scheduled for another Cystocophy to do a visual examination of the bladder to determine how I responded to the BCG. At the appointment I told the Dr. I didn’t feel things were going as they should and requested another biopsy.  
Once I had the biopsy back from the initial TURB we began an extensive research effort to determine what it meant and we actively sought a second opinion on my diagnosis and treatment plan. We are fortunate in only being a litte over an hour from the Stanford Cancer Center where we were able to be taken in by their Urology Department. The only change to my planned treatment Stanford suggested was another biopsy after the BCG treatments. My local Dr. felt that would submit me to unnecessary pain if the BCG response was good.  
On 11/03/04 I went in for a biopsy and ended up with a anther TURB. Another over 5 cm tumor had grown while undergoing BCG treatments. My response to BCG was non existant. Again I ended up with a stint and the catheter but no hospitalization this time. The biopsy report came back stating high grade urothelial carcinoma, extensively invading the lamina propria with possible myoinvasion noted. True invasion of the muscularis propria is impossible to determine with 100% accuracy.
My local Dr. suggested a second round of treatments with BCG or Mytomiacin. He agreed that second round treatments have a lower success rate but since we had no definite proof that we had any muscle invasion, a Radical Cystectomy at this point could possible remove a good and curable organ.
We picked up the biopsy slides from the local hospital and delivered them to the pathology department at Stanford to get a second opinion. Stanford’s biopsy report confirmed the other report with no additional information to help in the decision process.
We met with the Dr. at Stanford to discuss my situation and planned second round of treatments. He minced no words. In his opinion, another round of BCG was water under the bridge. He said I had several red flags flying and they were all against me. He further stated that we had a limited amount of time to stop the ship before it sailed away and if we missed it we would have a very difficult time getting it under control. If I choose anther round of treatments he said I would be back in the spring and we would have lost three months time. His professional opinion was the bladder needed to come out immediately. Even though we had no definitive proof of muscle invasion the behavior of my cancer indicated that the only way to stop it was remove it. We scheduled surgery for late December.
This was a very big decision to us. Do I risk removing an organ that could be saved by another round of treatments or do I take the big step of removing the bladder/prostrate which will effect quality of life and comes with a number of risks of its own. If the second round of treatments failed I could then remove the bladder.
We again tried to find information to help determine the correct course of action. We wanted another opinion. We had cat scans from prior to my first TURB and after my second TURB plus the biopsy slides from both TURBs. We contacted M.D. Anderson (U of Texas) in Houston, rated as the top cancer research center, and scheduled an appointment in mid-January(first available).  We also got a reference and scheduled an appointment the end of December with the Urology department at UCLA. However, both of these appointments would delay surgery while my cancer kept growing and eating away at me. To me, TIME was the enemy. Once it was expended you can never get it back. A decision had to be made and it had to be made quicky.
Two very important pieces of information were uncoverd while doing my researh. A large study at the Norris Cancer Center at USC reported that up to 40% of inintial bladder cancer staging was understaged. The second piece of information was that 50% of patients eventually succumb to their bladder cancer in part due to their reluctance to have their bladder removed. It seems many people will take just about any path available to them if it means they get to keep their bladder. Also knowing that second round treatments had around a 20-30% success rate added to my decision. That’s like playing Russian Roulette with 4 bullets instead of only one. Based upon my research, I cancelled the M.D. Anderson and UCLA appointments and told the Stanford Dr. that the Radical Cystectomy we had scheduled was a go. We scheduled the surgery for 12/27 with check in at Stanford Hospital on 12/26 for the wonderful bowl prep experience with 4 liters of GoLytely.
On 12/27 they removed the bladder, prostrate and surrounding pelvic lymph nodes and as a bonus they also removed the appendix. They then proceeded to create a neobladder from my small intestine. The surgery went very well, no complications and no blood transfusion was required. I spent a total of nine days in the hospital. The biopsy report of my removed parts was more than we had expected. The good news was that the prostrate was cancer free and there was no lymph node involvement. However, the bad news was that not only had the cancer invaded the muscle it had penetrated the muscle and was into the perivesical fat layer between the bladder wall and the muscle. The margins were negative but definite angiolymphatic invasion was identified. Angiolymphatic invasion is the apearance of cancer cells inside blood vessels. There was a 5.5 cm tumor in the bladder that had grown since the last TURB only two months earlier.

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.

I went into surgery with aggressive high grade stage T1 and came out with aggressive high grade stage T3aN0Mx. N0 says no lymph node involvement and Mx says metastasis unknown. This was a real shock to us.
I was scheduled for a 12 week chemotherapy regimen with cysplatin and Gemzar as a preventative/defensive measure for any micro metastasis that might have occured.  The chemo started in early February 2005 and ended in late April 2005. As I learned later, I had a much stronger than normal reaction to the drugs (poison). My fist major follow-up was in eary September 2005 (CAT scan, X-ray, blood tests).  My second follow-up was on 2/02/06 (X-ray, blood tests). My third follow-up was early June 06 (CAT scan, x-ray, blood tests).  No evidence of any recurrance. I feel good, have resumed regular exercise and activites, my hair has grown back, and I am enjoying a good life. Daytime is under control but incontinence remains a problem at night and appears it always will be. But, I’m still working at getting control.
And, to be around me during the day, you’d never know anything had happened. We are very glad we went ahead with the surgery as the decision probably saved my life. If we had chosen another round of treatments the treatments would have been ineffective due to the advanced stage of the cancer and the cancer would have had an opportuinty to move into the body cavity and spread via the blood stream.   
Advice based upon my personal experience:

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.

"Stage T1 grade 3 tumors are either incompletely resected or understagfed (i.e., actually stage T2+) 30-40% of the time particularly if large or multifocal. This is especially problematic when deep muscle biopsies are not included in the resection specimen or the tissue is severely cauterized. Cystoscopic re-resection is thus advisable in these cases to achieve accurate staging."

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 A good TUR with muscle in the specimen is essentail.

From,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.