Update, March 2009

I finally had my 4th recurrence of a papillary bladder tumor removed in September of 2007. I agreed to discontinue the two years watchful waiting of that slow growing tumor and have the tumor removed because three new elements added up to be the best guarantee of no more recurrences. 1) The better surgical instrument used in the removal of the tumor: 2) Resection of 1 to 2 mm of my left ureter orifice for better margins: 3) The instillation of Mitomycin C within one hour of removal of tumor (TURB) that served to kill any possible seeding from remaining cancer cells. None of my previous urologists wanted to risk resection of the ureter orifice. The new instrument used by this urologist was a bi-polar instrument called a gyrus that has been used very successfully for prostate surgery on men.  Now the gyrus instrument has proven to be used successfully without damage to my ureter orifice or kidney.  This has been clinically verified by various follow through tests and imaging.  Each cystoscopy since that date has shown me to be clear of any growths and the bladder and ureter have healed completely.


Update, March 2006

Over the past 6 years of treatments, tests, surveillance, numerous cystoscopy inspection of the bladder, 4 TURB’s, 4 recurrences and much research I have learned there is a distinctive difference between low grade recurrent papillary bladder cancer and other types and grades of bladder cancer. There is also an emerging protocol change from immediate surgical removal of recurrent papillary growths to watchful waiting. Upon inquiring, Wendy Sheridan told me of attending a seminar of urologists in 2004 and of hearing a presentation from Dr. Mark Soloway regarding his findings from an in-depth and long term study on patients with recurrent low grade papillary bladder cancer. She referred me to that study: Expectant management of small, recurrent, noninvasive papillary bladder tumors. Soloway MS, Bruck DS, Kim SS., J Urology, 2003: PubMed

Thank you Wendy!. After I read the study, noted the similarities in my case history, results and recommendations, a new courage emerged in me to do watchful waiting on my then 3rd recurrence. I felt watchful waiting a better alternative to having yet another surgery/TURB with it’s many stated risks, discomfort and costs involved as a result of the pre-op, anesthesia, surgery, or post op complications.

Coincidently, before my introduction to that Dr. Soloway’s study, but prior to my move from Texas to Virginia in March of 2002, a 2nd recurrence was identified. Deciding against removal of that growth until I was settled in Virginia caused a nine month delay in the surgery. The pathology report from that 2nd recurrence stated it as “papillary TCC, TA grade II of III“. The original pathology report from the 4 centimeter tumor and identified as a possible T1a was denied and downgraded to a TA. No additional BCG treatments were recommended for me. Being fortified with the knowledge of Dr. Solway’s study, my success at the nine month wait and other European urological reports and recommendations on recurrent low grade papillary cancer, I then waited a year before having the 3rd recurrence removed in July 2005.. The pathology report came back papillary TA grade I of III. I am now doing watchful waiting on a 2 millimeter recurrence seen in my February 2006 cystoscopy. I believe it to be a residual tumor from the prior TURB done last July as the newest protocol of instilling a single treatment of Mitomycin C immediately after TURB was not done. My urologist has now recommended that be done when I have my next TURB.

Because the location of my recurrent growths are just outside my left ureter orifice, fulguration of that growth and area is precluded because of possible scarring that could close off the opening of the left ureter orifice to my left kidney. The low grade of my cancer does not warrant that complete fulguration risk. I have learned, some urologists can do immediate fulguration and/or remove tissue samples at the cystoscopy inspection. I recommend finding such a urologist if possible for low grade papillary recurrences.

Original post

In May of 2000, after having blood in my urine on and off for 3 years, a 4 cm tumor was seen on a catscan that was ordered by a urologist who finally did a cystocope check on me. There were many errors in the medical field up to that point as I kept having checkups for the bleeding without being directed to a urologist. I was given antibiotics and it would stop. I was diagnosed with cystitis. I had a clear sonogram. Even the urologist that I was finally referred to in December of 1999 diagnosed me as having passed a stone as by that time I was also feeling blockage and pain when trying to urinate. He did not do a cystocope check on me. I went for a second opinion and that doctor showed me on a screen, the actual view of the tumor in my bladder. It was not very “beastly” looking to me. Ironically, it was a rather whimsical flowery swaying growth. I was very traumatized at being pronounced having a malignant tumor that could be invasive and I may have to have my bladder taken out. This was all told to me prior to removal and pathology report on my growth. I searched the Internet and found much information. Asked the doctors many of my concerns and finds. Was not satisfied with their lack of answers and their discouraging me from probing and settling my concerns.

Was referred to a third doctor by a friend who had him as a urologist. He is a doctor at a University affiliated hospital. He is also a professor of urology. His check up of me was so much more thorough than the others. Not only did he do the cystocope and show it to me on the screen, but took pictures, gave me a pelvic and anal exam to check for tumor invasion. He told me afterward that he could not feel any protrusions or invasions elsewhere and “we probably lucked out with this just being a superficial tumor.” He also said it was probably so large because it had been in there so long. He explained to me why a TURB (biopsy and removal of tumor) needed to be done and what they would learn from it. He also explained follow through treatment with BCC and the history on BCG. I had the surgery done 3 days later. All three doctors said it would be an outpatient surgery. I am so glad, it was not. They kept me overnight and I highly recommend that for everyone. The catheter is very, very, uncomfortable. I could not see being at home with household surroundings and family needs playing a part at this most traumatic time in ones life. I highly suggest everyone spend the night and be pampered and monitored by professionals.

Later in the day, he came in and said he was a bit concerned about the size of the stalk and it may have invaded the bladder wall and he may have to remove my bladder. I was very angry and shouted “that is not going to happen.” I had to wait 5 days for the pathology report. It was an agonizing 5 days. The report showed no muscle invasion. I could keep my bladder. What a relief. I was then very concerned about the BCG treatments as I had read on Internet some bad side effects from it, and the follow through procedure of having to pour bleach in the toilet after each urination for six hours after the treatment. I hesitated for a month and finally decided (after much research) BCG was the best treatment and worth the inconvenience.

The initial was 6 treatments of BCG once a week. Although very concerned about the treatments, I had no trouble at all. No side effects. I had learned from several sources to take Maitake d-fraction and Reishi as it would enhance the therapeutics of the treatment and keep from any side effects. I also started doing qigong and chi breathing exercises and visualization. The only side effects I received from the treatments was some anxiousness. I asked for and got diazepam from my GP.

My 3 months check up showed me to be clear of any growths. My 6 months check up, showed 2 pinpoint growths. I had 3 more treatments of BCG and the growths are gone. I will continue with 3 month cystocope check ups and 1 week each of BCG for the following 3 weeks. I have accepted the fact that this will be long term surveillance and treatment but feel blessed that treatment is available and I finally found a good reason to quit smoking. Smoking is the main cause of bladder cancer. My doctor told me the 112 chemicals in a cigarette mix with the urine and cause abnormal growth. Also, I have to say I did not drink much water and held my urine too long often times because I was so busy doing something else. I see there are also several phase III studies happening from biotech labs isolating enzymes that appear in bladder and other types cancer. Possibly in the near future, we can take a pill to inhibit the offending enzyme and that will be the only meds needed. I would be glad to keep in touch with anyone by email.

Best Regards, Rosie