Age 46–TCC/CIS grade III/III, treated with BCG which didn’t stop recurrence and progression in my case, requiring cystectomy and a neobladder.
At age 46,I was diagnosed with TCC (bladder Ca)and CIS which was found to be grade III/III, with invasion into the lamina propria, though initially not the muscle. I was othewise healthy with no presenting symptoms other than blood in urine. Follow up biopsies continued to find grade III/III with CIS, and ultimately initial signs of invasion.
Along with taking Oncovite, I attempted 3 weekly treatments of BCG immunotherapy instillations, but after a 3 month follow up recurrent tumors were found. One more instillation of BCG was given, bringing it to four. Since it can take up to 6 months to benefit from BCG treatments, we waited, but unfortunately 3 months after that another recurrence was biopsied. This one showed invasion into the muscle.
I spent several long weeks seeing many docs, and searching for an answer other than surgery, as I feared the possible downsides of cystectomy including
incontinence and impotence. Utlimately I decided to go ahead with the surgey following a wonderfull visit with the uro/surgeon. I finally understood that part
of why they recommend surgery so strongly for “younger” patients is because they believe that it offers the best likelihood for long term survival. I also was lucky to connect with a wonderful team of Doc’s who I trust, and who are clearly world class oncologists, and surgeons. My belief is that the skill of the surgeon is EVERYHING in this surgery, and a good discussion/interview with him/her ahead of time is crucial. Dont be afraid to ask how often they do this procedure, and how their patients are doing with continence and potency.
I had a cystectomy, and neobladder construction on 1 April 1999 at age 46. I was in the hospital 9 days, and had a catheter for 3 wks. They built my new bladder out of colon which seems to have worked out well. The surgery is by no means a walk in the park, but I survived considerably better than I feared. I have been able to regain very good continence, and now only have rare accidents at night. There has no loss of sexual interest, and there are encouraging signs that the nerve sparing surgery has had the desired effects.
Post surgery pathology found Grade III/III tumors, and CIS in several parts of the bladder, and minimal invasion into the muscle, clear margins, no cancer
in the prostate, and no cancer in the nodes.
Bladder sensations are different now; I have a sensation something like a mild ache, or tightness which I’m learning is the signal that I need to void. Learning to recognize this feeling at night has been the biggest challenge, but it works. They did hook my neobladder up to my urethra so that I am able to urinate normally, except that often I need to sit to void completely.
As my strength has returned, I have returned to work full time, and I am back doing most of the things I did before the surgery, including regular visits to
the YMCA, sailing, family events, etc. Fatigue was a significant factor for me for many months post surgery, and learning to operate at a slower pace has
Follow up’s with the Doc’s have been remarkably few, in comparison to the pace of 3 mo’s cysto’s BCG and all that I was doing pre-surgery. They were watching
my left kidney closely starting at 3 mo’s post op, as an ultra sound had shown some dilation of the left kidney which was identified as resulting from a slight
swelling of the left ureter as it entered the neobladder, and the scar tissue was creating a constriction. We took a watch and wait approach, and it seems to have resolved itself so far. I am now on a 6 mo’s follow up with both Urologist/ Surgeon, and Oncologist.
I consider myself to have been very lucky, on most days. Other days the enormity of the cancer battle and how this surgery has changed me and my life seems to creep back into my consciousness. I have been truly blessed to have been cared for by outstanding doctors, and a surgeon who is truly a master. There is no doubt in my mind that the skill of the surgeon is the difference between positive, and not so good outcomes with the surgery option, particularly with neobladder construction. I believe that the bladder cancer treatment field is going two different directions right now, one toward bladder sparing and the other towared perfecting the surgical techniqes to improve post surgery bodily function to the point that the outcomes are more acceptable, and therfore are more likely to be selected by patients earlier. Both approaches of course, are intened to increase survival rates.
As I approach the one year anniversary of the surgery, I find myself reflecting on the change in my life in just a year. Even though I know that my battle is far from over, I am far less anxious than I was a year ago, and I am far more focused on what the priorities are for me in life. Yes, this cancer has changed me, It has changed my body, and my attitude toward life, and other people, and not all for the worse. I am far more purposeful with my life, and have come to understand something more about what living each day to the fullest means. I look forward to the day, that I can call myself a “survivor”, in the mean time, the warrior goes on.
2 1/2 year Update:
In November 2001, I remain on a 6 month interval follow up schedule with the urologist and oncologist. The round of follow ups includes CT scan, blood work, cystoscopy, and cytology of washings from the neobladder; with results going to both docs. All results have continued to be clear so far! Yeah!
I continue to find that living with a neobladder is very tolearable.