When I was 47, I began having some urinary infections and other urinary problems. These were caused by a benign enlarged prostate, and were largely resolved with TURP surgery in 1998. But a routine follow-up cystoscopy in the summer of 1999 quickly became unroutine, when abnormal cells were found in my urine.
Most of our urinary system (the kidneys, ureters, bladder, urethra, etc.) is lined with an interior "skin" made of "transitional cells," so-called because they are able to change shape from flat to square. Just like your outer skin, this interior lining is constantly being sloughed off and replaced by your body.
When they microscopically examine your urine, one of the things they look at are the transitional cells that have sloughed off. They want to see if they are normal or not (that is, having the right shape, size, nucleus, structure and so on). If they aren’t normal, it does not necessary mean cancer, but it does mean that further investigation is warranted. The more "abnormal" the cell is, the more investigating is needed, and the greater chance of a problem.
After the urine testing, we began to "go upstream" to find the source of these abnormal cells. Biopsies of my bladder and ureters were negative, but an IVP X-ray of my kidneys disclosed the presence of a small (1 cm) tumor in my left kidney. A brush biopsy was done, in which a little brush, like a woman’s mascara brush, was brushed up against the tumor to dislodge and collect some of it for a biopsy; the biopsy indicated it was malignant. In October, 1999, two days before my 50th birthday, I was diagnosed with Stage 1, Grade 1-2 kidney cancer of the left renal pelvis. The tumor was inside the kidney, growing from the lining of the kidney — classic transitional cell carcinoma, or TCC for short. A second opinion of that biopsy confirmed the initial diagnosis.
TCC is a very rare form of cancer, representing about 5% of all kidney cancer, which itself is fairly rare. TCC is different from 95% of most kidney cancer (called renal cell cancer or RCC for short). TCC is on the inner lining of the kidney; RCC is cancer of the kidney itself . Although I had "kidney cancer," it was much more like superficial bladder cancer (which is in the same transitional cell lining, on the surface of the bladder). TCC of the kidney is treated almost the same way as TCC of the bladder; that’s why this story is part of the bladder cancer website. Fortunately, TCC is also much more treatable than RCC, which is very resistant to most forms of chemotherapy and radiation.
I was extremely lucky, as my doctor discovered the kidney cancer almost by accident, while actually looking for something else — the possible cause of a lingering urinary infection. Normally, kidney cancer and bladder cancer aren’t detected until there is blood in the urine, pain or some other symptoms. By then, the cancer has often grown and/spread beyond the kidney into the surrounding ribcage or other organs, making it more difficult to deal with.
Although the final diagnosis did not come as a complete surprise because of the "abnormal cell" discovery, it was still a tremendous shock. I initially felt as though the diagnosis was a death sentence and reacted accordingly. I never thought I was immortal and would not want to be. But on the other hand, it’s quite something to have your number called in at 50, especially when there’s so much left to be done and you have the responsibility of a family and a young child. I’ve always tried not to waste time, and to get the most out of each day, but now, more than ever, I saw how precious, fragile and fleeting life really is.
I also had some terrible nightmares after receiving my diagnosis (I dreamed about my own funeral, and later dreamed I was in heaven). I promptly sought psychological counseling, which was very helpful in dealing with the situation. And I began taking Xanax, which helped me sleep at night. It was a very difficult time.
I also turned to the Internet for more information. Some of that information was either wrong or not applicable to me, and I soon found that I needed to screen such information carefully, and to review it with my doctors, since every case and every patient is different. Certain websites, such as the BC WebCafe, were much more accurate and useful than others. But in general, it was helpful to be informed, and I would recommend knowing more about your situation as opposed to knowing less. Although it can be scary to find out about your disease, I think it can a lot scarier to face the unknown.
Because the cancer was still small and was apparently confined to the kidney, I was advised to have the entire left kidney removed, especially since my right kidney was healthy and functioning normally. My doctor also said that there was only a 2-3% chance of getting TCC in the remaining kidney. So in November of 1999, I underwent a nephroureterectomy (removal of my entire left kidney, its attached ureter, and a small cuff of bladder). The lymph nodes were not removed because they looked fine and weren’t swollen. The pathology report confirmed the initial diagnosis, noting that the tumor had "good margins" and there was "no evidence of invasion." The surgeon decided that I did not need any radiation or chemotherapy at that point.
I was able to return to work in mid-January of the following year, although it actually took about six months for me to fully recuperate physically from the operation. The surgery required a long incision on my left torso that cut through many large muscles; it caused a fair amount of pain for a few weeks after the operation, and stiffness for a few months after that. I am now back to my old exercise regimen, which involves walking two 15-minute miles every other day.
After the surgery, I returned to the hospital at three-month intervals for follow-ups that included pelvic MRI’s, chest X-rays, cystoscopies, bladder washings, prostate exams and blood work. These were all done to monitor my situation and watch for a recurrence or a new occurrence of TCC. For the first two or three follow-ups, I felt as though I was being given three-month passes to live. I approached each follow-up with a mixture of dread and gratitude, glad that I had gotten this far but always wondering what the next tests would show.
Now I’ve become somewhat more used to the follow-ups and simply hope for the best, but am prepared for the worst if need be. I just passed the first anniversary of my surgery and received a clean bill of health. My right kidney has been a real champ, taking over the work of the left kidney, and as a result, I only lost about 25% of my kidney function, even though I lost 50% of my kidneys.
I realize that I still have a long road to travel, but I write this as a cancer survivor, to give hope and peace to all those who are just beginning this journey.
SETH BRILIANT 12/21/2000
Update January 2002
I’m glad to report that as of December 1, 2001, the second anniversary of the removal of my cancerous kidney (transitional cell cancer), I continue to be "NED" — no evidence of disease. I have been X-rayed, MRI’d, cyto’d, cysto’d and a few other things, and everything looks good, which is of course great news, and for which I am very thankful. Of course, I will still need to go for those 6-month checkups, which are reassuring and scary at the same time, as you well know.
Although it sounds strange to say, I am thankful for the cancer situation, because it has sharpened my appreciation of life, and made me appreciate each and every day. I’ve always enjoyed living, and have tried to make the most of each day. But especially now, I try to make each day useful and meaningful. I look forward to my daily plans each morning with anticipation, and I look back on my accomplishments each night with satisfaction. Lots of people say "Life is not a dress rehearsal, but fewer people actually understand what that means or believe it. I’m trying to live my live based on that principle, without being frantic or an overachiever about it.
I can also tell you that about a year after the kidney surgery, despite the fact that all my tests were negative, I fell into a major depression, even though I should have been the happiest person in the world at that point. I’m guessing that it may have been a delayed reaction to the cancer diagnosis and surgery, or possibly "survivor’s remorse."
In any event, I sought out counseling, and when that was not helpful after about six months, psychiatric help. After trying a few antidepressants such as Paxil and Zoloft, which just made me nauseous, I had good luck with small doses (25mg) of Effexor, which I was able to tolerate much better. In about 3 weeks, my depression miraculously lifted, almost instantly, and I also became a lot calmer than I had been before. This allowed the counseling to be much more effective, which further helped me to deal with my situation. At this time I’m still on Effexor, and find it very helpful in dealing with depression and anxiety.
The moral of my story is that any cancer patient, whether sick or well, can probably benefit from counseling as well as psychiatric help where indicated. As we all know, cancer is a big deal, and so you need to pull out all the big guns to deal with it! If your medical doctor doesn’t raise the issue, then you should, if necessary.
I had resisted the idea of antidepressant medication at first, thinking that I could either reason or bully my way through the situation. I was wrong, and I was quite surprised to find how well the Effexor helped to resolve the problem. You also have to accept the idea of taking medicine for mental illness. Actually it’s no different than taking medicine for a physical illness, but it’s something that most of us have never done, are not used to, and may be frightened of. However, as with a physical illness, once you have found a psychiatrist whom you can relate to and trust, it definitely helps.
The National Kidney Cancer Foundation (KCF), 1-800-850-9132 can also recommend doctors and surgeons in your area that specialize in handling TCC/renal pelvis; they were very helpful for me in that regard. SETH