One Man to Another
Statistics and Prognosis
by Jules Reichel
This is not a doctor's column. I am, in fact, a patient of Dr. Catalona and a member of the URF Board. This column attempts to provide a patient's perspective on prostate cancer to the readers of QUEST. I often discuss my own medical case in order to provide clear illustrative examples. I hope that you see some of yourself in these examples as well.
You may wish to review my prior columns on Dr. Catalona's Website, www.drcatalona.com. Insert my name in the "QUEST Articles" search engine.
September 17, 2002 was 5 years since Dr. Catalona performed a nerve-sparing radical retropubic (incision between the belly button and pubis) prostatectomy, RRP, on me.
Prior to surgery, I was in good health with no symptoms; however, screening tests revealed that I had prostate cancer. It was described as PSA=5.4ng/ml (nanograms of protein per milliliter of blood), Stage T1c (elevated PSA with no palpable tumor), Gleason 3 +4=7 (grade pattern 3 plus grade pattern 4 yields a score of 7).
After surgery, Dr. Catalona called me at home near Syracuse NY and explained my pathology (tumor analysis) report. He explained that my cancer had penetrated the capsule (the firm tissue ridge around most of the prostate): I had extra-capsular-extension (ECE).
Fortunately, the pathologist saw no instance of cancer cells that had penetrated the surgical boundary (I had negative surgical margins), and no spread to the lymph nodes (good news). Instead of the usual risk of 15% to 20% of later recurrence, he assessed my risk of recurrence at approximately 25%.
That's a lot of risk and we discussed the desirability of further therapy. I decided to do no more than surgery and monitor my PSA levels. I have now sweated out 10 six-month PSA tests. In each case the result came back, PSA less than 0.1ng/ml undetectable.
After surgery, if there was to be a later recurrence then there was about a 50% chance that it would occur in the first 3 years, 80% chance during the first 5 years, and 99% chance during the first 10 years. I'd like to know my prognosis (chance of full recovery) now after 5 years have passed, but it's not an easy question to answer.
A study by Dr. Patrick Walsh found that of the men who had biochemical recurrence (PSA rose to exceed 0.2ng/ml), about one third (if left untreated) will, within 15 years, have metastatic (broadly spread) cancer. The time until metastasis was eight years from the time of PSA elevation. Once there was metastasis, the median time to death was five years.
This bad outcome is not what I am hoping for. And, what about my five years of having undetectable PSA readings? Don't these favorable readings help me?
Another study by Dr. Walsh looked at this question. It found that none of the almost 2000 men had either local or metastatic recurrence of disease if their PSA readings were undetectable. We can therefore trust the undetectable PSA as a reliable guide (good news).
In addition, it found that of those who had local recurrence within 12 years, only one in four had undetectable PSA for five years. If metastasis occurred, the men had an average PSA value of 28.6ng/ml. So my risk of recurrence is now somewhere around 6% And, if any rise in PSA occurs I have to be prepared to control its rise so that it stays much lower than 28.6ng/ml.
I prefer to estimate my 15-year risk at 2% rather than 6% because the data for Dr. Walsh's analysis goes back to 1982 (the old data is much too pessimistic for recent cases), and my low PSA value lets me hope that the tumor volume was small (it was not measured back then). All of these estimates are a lot better than 25%.
Many doctors are not so concerned about long-term remission. They feel that average patients will more likely die from a cause other than prostate cancer. But as patients, our question is: In our own case, will we live long enough so that we should consider the likelihood of long-term remission when we choose our therapy?
Many life expectancy calculators are available on the Internet. The average age of men diagnosed with prostate cancer is now 60. Using a calculator that I selected, I inserted the ages of 60 and 70 years of age. I assumed that the man was otherwise in good health and didn't smoke. He had at least some close relative who had a long life, but he should lose weight and should exercise more.
The answers came back that, on average, the 60 year old will survive for 30 to 35 years, and the 70 year old will survive, on average, to about the same age. So, a man who I am guessing is a typical American, should, on average, survive until about 90 to 95 years of age if he makes it in good health to 60. Although the answer looks surprisingly favorable, it is not unreasonable since the survival age is rapidly increasing in the US.
What this means to us who have prostate cancer is that long-term remission is very important unless we are unfortunately already quite sick with one or more other diseases.
Quality of life issues are not yet resolved. One controversial suggestion concerns the use of free-testosterone replacement therapy. It may be of dramatic help to quality of life or it may stimulate prostate cancer. Dr. Catalona uses this therapy on a case-by-case basis.
If progress is made in better methods of control of prostate cancer, such as from his URF-supported work on the genetic basis of prostate cancer, then all men may also get an enormous gain in quality of life during these extended years. Until then, exercise and proper diet seem to be of great help.
I feel a little reassured. Despite the risks from extra-capsular extension, my chance of recurrence has declined to 6% or less, (if I had no treatment of any kind, my probability of death from prostate cancer in 10 years would be between 13% and 24%). I also chose surgical treatment with Dr. Catalona that provides me with good probability of long-term remission with limited side effects. Every decision has risk, but I think that the original judgment of my local urologist and Dr. Catalona that I could be successfully treated with "curative intent" (stable remission) is confirmed.
However, to be perfectly truthful, if you see me at my next PSA test, expect to see significant anxiety.
A balanced presentation requires that I not imply that all prostate cancer cases are currently well controlled. Let me tell you the case of Robert Young, whose poem I cite in the next section. All citations are with his permission.
About 3 years ago, he was in excruciating pain. He could barely walk, sit, stand, or sleep. He went for medical care and his PSA reading was found to be over 1000ng/ml. Some men think that you are not alive at such high PSA values, but I can assure you that Robert is very much alive. He was given the hormonal therapy drugs of Zoladex and Nilandron. Hormone therapy means depriving a man of his sex hormones called testosterone and dihydrotestosterone (DHT). These hormones are called androgens and doctors know the therapy as androgen-deprivation therapy (ADT). This permits Robert to function normally but the drugs have, in his view, created deep psychological damage and diminished his sense of self-worth.
At least 10% of prostate cancer patients like Robert have significantly advanced disease at initial diagnosis (at least 20,000 men per year). We will discuss these cases in future columns. Robert's current approach to therapy is called palliative (non-curative management). There are a very large number of therapy approaches to greatly extend good-quality life for these men. Most of the less harsh therapy options are, however, new and more experimental.
Some men just choose a doctor and let him provide the "map" and the "language". But which doctor and therapy should you choose? How do you communicate? What do you do when he asks you to make your choices? And how do you discuss any subsequent issues?
Unless we educate ourselves, the trip through this "foreign country" can be very painful and will not reflect our informed consent.
Men often select a doctor to treat their prostate cancer by assessing the medical qualities of personal sensitivity and willingness to be kind, supportive, and reassuring during a period of enormous stress over issues of life and death. Men report that they want a doctor whom they can trust.
However, consider the following example. In Dr. Catalona's 1999 summary of results, he discussed the distressing side effect of urinary incontinence after surgery. I was immediately continent after removal of the catheter and reliably continent after the use of about one big box of pads. My wife says that I was reliably continent when she said, "Stop using those things." and I threw away my security blanket.
Dr. Catalona reported in 1999 that "96% of men younger than 70 years of age recovered urinary continence within 18 months." His results were continuing to improve. He then analyzed results in the literature and observed both excellent and poor rates of full continence. At some reputable centers rates of only 50% to 80% were achieved. He wrote, "The reasons for the reported variability in continence rates are unclear."
All Board Certified doctors are not getting even nearly equal patient outcomes.
Dr. Catalona has written that many men go to their specialist based on referral from their primary care physician. These men, and others as well, can ask for the names of 10 prior patients who have been treated by the doctor over several years and are willing to be called. If the practice is set up to provide such names then they can be called and asked about medical results and personal assessments of treatment.
Another method of selection is based on gathering information about the doctor. Several studies have shown that, in most cases, high volume doctors get the best results. That's to be expected. They treat a lot of prostate cancer patients because other doctors think that they do good work and are referring patients to them. Many people take high volume to mean at least two patients a week for at least five years. That is, the doctor has used his therapy of choice in at least 500 cases. The doctor can supply this information on the number patients he has treated.
Unfortunately these same studies show large differences in results within this group of high volume doctors. No one can know how well the doctor is doing unless he keeps meticulous records over all the years of his practice. Look again at the numbers I offered above. If you have no outcome data for a doctor, how will anyone know whether he achieves 4% or 50% rates of incontinence? This disparity applies as well to every aspect of the treatment, including recurrence rates, side effect rates, and death rates. The doctor can show you his long-term outcome results if he has tabulated them for internal use or publication.
Prostate cancer treatments are complex and continually changing. It's therefore extremely helpful if the doctor participates with other doctors who are partly devoted to research.
You can easily find out what research a doctor has published in the peer-reviewed literature by looking at PUBMED on the Internet, our national library of medicine. Enter your doctor’s name: for example, in my case, Catalona WJ and Prostate Cancer, and see what comes up. You will soon know if he publishes and if he does what aspects of the disease he is interested in. The doctor may also have written other material in articles and books that you can ask to look at.
In the end, doctor selection is subjective and it's your choice not mine and not the doctor's. If, however, you try to choose a doctor of superior personal character, whose patients have approved of his work for many years, who has treated a high volume of prostate cancer patients, who keeps meticulous long-term patient outcome records that show excellent results, and who shows a continuing pattern of research, then you are much more likely to have a good experience with treatment. You may, of course, have to balance some excellent qualities with lack of information in other areas.
Click here to read the next article, It's In the Numbers, in the One Man to Another series from Jules Reichel.